Courtney's Battle

My name is Courtney. I am a cancer survivor.

2009-05-15T11:07:00.000-07:00

Hello. My name is Courtney and I am a cancer survivor.

It has taken me along time for me to be able to make that statement. I have spent a lot of time trying to escape the 'world of cancer' and remove myself from it; only to discover that it was a permanent part of who I am. I am a survivor.

My silence has never been because of a lack of gratitude or appreciation for all of the love and support that I have received and have continued to receive. My silence has simply been silence. Always a reverence for life. Of course, mixed in with a generous amount of living life.

And that is what I have been doing my best to do this past year-- living, loving and learning.

I couldn't think of a better way to return to blogging than sharing this link with you:

http://pages.teamintraining.org/stx/txtri10/ccallanen

I hope that you will follow my brother, Chris' progress along with me. Thank you Chris for helping me find me way back to my blog. I am looking forward to sharing with you all my life (thank you Tracy for saving it!) and journey as a survivor.

Bone Marrow Biopsy Results

2008-12-10T07:44:00.000-08:00

REMISSION!

Ashleigh, Blake and Bridget

2008-11-05T20:50:00.000-08:00

If there where three people that I could have seen again from my long stay at Harris Methodist Fort Worth Hospital, it was two of the three pictured here. (Just kidding, Blake, I know you've been waiting a few weeks for me to post this picture. Sorry it has taken so long.) No really, I spent over a month on the Oncology 7th floor and 2/3 of my memories are very foggy (just ask Michael Jackson or Paula Abdul-- see post Feb. 11th). But always, my clearest, best memories are of Bridget, Ashleigh and Blake.

Bridget (pictured right) was there the day they rolled me in to the hospital room. I was scared (that's a understatement), confused and in tears, and she was the one who brought answers and comfort to me and my family. It seemed like 'no problem' was her motto. If it seemed like no one could get something or find out something (like 'where is that doctor?'), Bridget would say 'no problem'. If it wasn't right, she made it right. She got it done, found that doctor, answered the hard questions and still had time to make me laugh. Bridget was also there the day I left. I think she saw the uncertainty in my eyes and read my mind. She told me that I was ready.

Dignity is really the one thing you check at the front door when you're admitted into a hospital. As a patient you have to bare (and 'bare') everything to complete stangers. (Sometimes you'd think it was Mardi Gras the number of times I was asked to lift up my shirt.) Strangers, really, who see you at your phyically and emotionally lowest. Ashleigh made me feel like I still had my dignity. She was compassionate. Ashleigh saw me struggle as personal barriers and space continued to shrink. She always pushed them back out to my comfort zone. And if they had to be crossed for a test, procedure or something simple like help getting out of bed to use the restroom, Ashleigh always showed extrodinary kindness and understanding. A remarkable person.

Blake endured my drug induced antics and harassment, my never ending non-sense chattering and gossip, and bad jokes (not as in 'poor taste' like the one above, just bad as in 'not that funny'). I think I still mixed in a good amount of complaining. He still came in with a smile.

You would think after more than a month, I'd be ready to leave to that room. But truthfully, the idea was frightening. I wasn't going to see all the nurses and techs that took such good care of me everyday anymore. It was like leaving family. Thank you.

La Wonder

2008-10-01T22:47:00.001-07:00

This is La Wonder. Not many of you have ever met her or maybe hear me talk about her. La Wonder was one of my favorite techs at the BMT Unit at Zale-Lipshy during my long stay there for my bone marrow transplant. I was able to see her this past week after a visit with Dr. V at the BMT clinic. Just by looking at her smile I know that I don't have to tell you the kind of person she is. She ALWAYS had that smile on when she came throughout the day to see me. But don't be too decieved by the dazzling smile and beautiful laughter that came with it. If I even remotely looked like I was sulking in bed she would NOT let me have a pity party. She would be at my bed pushing it up to a seated position and get me up and out. Sometimes like a drill sargent but filled with such compassion. And, boy, did she make me laugh hard. Although I think I kept her entertained when I was loaded up on narcotics... she would walk in and want to know if I had what she called those "margirita eyes" going on. She'd take one look at me and just laugh and know exactly what medication I was on.

One year later...

2008-09-21T21:09:00.000-07:00

It’s hard to believe everything that’s transpired the past 12 months. A year ago today (Click to see how it began) I was given the worst news of my life, causing my world as I knew it to screech to a halt. This yearlong journey essentially began with three simple and brutally honest words, “You have leukemia.” Looking back, it’s the longest and by far the most difficult year of my life, and, yet, it’s been filled with countless blessings – an unusual and unexpected paradox. You wouldn’t think you could ever use the words ‘cancer’ and ‘blessing’ in the same sentence, yet I find myself doing that quite a bit.

And so, to commemorate this day, I made a visit to the transplant floor where I had spent so many days to begin this year. I would have liked to have gone back to Harris Methodist where I was admitted this time last year, but that was the other side of town from where we were. I have to admit, my heart skipped a beat walking through those doors, but quickly settled as I realized I could leave just as easily as I went in.It was really nice being able to visit with a few of the nurses that remain so close to my heart. Fortunately, they didn’t recognize me right away – adding 20 lbs and a head of hair will change anyone’s appearance.

We also made some really good friends today. Frank and Barbara Springer are at the hospital waiting for Barbara to recover from her Stem Cell Transplant. She’s 8 days removed from receiving the stem cells from her younger sister. She’s doing great and we pray that she recovers quickly and is able to go back home by the end of the week! You can see their progress at http://www.caringbridge.org/visit/barbraspringer. Please send love and prayers their way.

Today also marked the second day of the bone marrow transplant symposium that Todd and I were able to attend in Dallas. It was great as we were able to make new friends and relate to others who have been and are going through their own trials with cancer and life post transplant. I’ll share more about that later this week. Thanks to our wonderful friends for taking care of our children and helping to make this weekend truly special for us!!

I meant what I said.

2008-09-12T06:36:00.000-07:00

I meant when I said that I had made the decision that I wasn’t going to continue re-living cancer. And I haven’t, not a single tear. But I have had to be reminded. Especially the past two months.

At the end of June, there was a spike in my white blood cell count—particularly in a group called eosinophils (there are like five different groups—this particular group is responsible for allergic reactions and such). At this time, since I wasn’t showing any symptoms of GVHD (only what Dr. V. called “sub-clinical” cGVHD), she chose to increase my Prograf level back up and to stop the tapering until the white cell count stabilized.

Unfortunately, less that a week later, symptoms of skin, mouth and GI cGVHD started appearing. Most of them down right annoying, like the skin on my hands and feet peeling. The bottoms of my feet felt like they were sun burned, that unpleasant and uncomfortable feeling of walking across hot sand. Yet, the ones that caused most distress where the ones that affected my mouth and esophagus. I know everyone reading this can relate to getting ‘pizza burn’ on the roof of your mouth when you take a big bite of way too hot pizza. Mouth GVHD is like that but affects the entire lining of the mouth, lips and throat. Very lame.

While this really is considered mild to moderate cGVHD , it still posses an increased risk of infection. So on top of new medications to help treat and alleviate symptoms, I was put on prophylactic antibiotics that unfortunately caused their own new problems.

Having proper balance is important for just about anything in our lives—like being able to stand and walk straight. Our bodies carry good and bad microbes and when in balance we feel pretty good. Something like antibiotics can help restore the balance but sometimes end up pushing the balance in a completely opposite direction. And this is exactly what happened to me.

While helping prevent infection during this period of the cGVHD the antibiotics happened to cause a new infection located in my intestinal tract. Because some bacteria are opportunistic, a group of ‘bad’ bacteria (that almost every one of us naturally carry and never cause problems except in cases where the immune system is weakened) got out of control. Becoming another distressing illness, that, by the way could only be treated by an antibiotic. I am I the only one who can see a pattern developing here? Ha-ha.

Like I have said, mostly annoying, some down right nuisances and others a bit distressful. But once Dr. V. figured out what was going on, she’ll have me feeling much better in no time at all. And I can say for the first time in the past eight weeks I am feeling better.

You see, this whole process is a very fine line that transplant doctors walk patients along. On one side, there is the cancer. The other, complications related to a transplant (GVHD, serious infections, etc).

So on one hand Dr. V. was not disappointed to see the increase of WBCs at this time especially since she has been gradually reducing the anti-rejection medication. It shows us that Tracy’s donor cells are behaving exactly the way they should! We always talk about Graft vs Host disease, but haven’t really mentioned what is called “graft vs leukemia” effect. This is ideally the big pay off for going through such a risky procedure. That the donor immunity fighting cells would recognize any leukemia cell as foreign and destroy them. This “graft vs leukemia” effect is what essentially offers a “cure” and not just “remission” from the disease. That’s my goal—cure. So, the cGVHD I can handle.

Sitting with me...

2008-09-07T19:27:00.000-07:00

This is a picture that I have in my bedroom. It was a picture that Todd took of the two of us sitting together during my transplant. You can actually see her blood being transfused into my body.

I see it at different times during the day. It never fails to tug at my emotions - making me stop and ponder what my sister actually did for me. She literally saved my life. Truthfully, though, I really don't need a picture to remind me. Whenever I have my blood drawn or even a tiny paper cut, I'm reminded that the blood is hers. I now, and always will bleed Tracy's blood. Sure, my body produces it. But only because she gave me the seeds, or stem cells, to grow it.

I love you, Tracy.

First Movie

2008-08-07T20:05:00.000-07:00

First movie at a movie theater since I was diagnosed in September 2007- Kung Fu Panda. We took all the kids. Crazy idea! So how was our outing with the kids? Awesome! We made it through the entire movie with relatively small amounts of wiggles from Aidan (the two year old). A miracle! Hilarious movie by the way. I loved hearing the kids giggle and laugh. After the movie was over they were all doing karate punches, kicks and jumps in the air. Hi-Yah! I was glad that they didn't try moves on each other.

Second Chances

2008-07-15T11:48:00.000-07:00

Not too long ago, I was folding laundry on the couch in the living room when I looked up and saw myself in the mirror. In that moment I didn't see myself as someone who'd had cancer and I knew that I had been given a second chance.

It was reaffirming something that I already knew, but in a way that dispelled the sadness. I wasn't going to be angry that I’d had Leukemia or worry about the 'what ifs' or 'whys'.

I had cried at least once every single day since I was diagnosed. But that day I decided that I wasn’t going to shed a single tear over it again. I had already experienced the sorrow, fear and uncertainty of cancer. I wasn’t going to continue re-living it. I was going to live. Period.

6 Months Post-Transplant

2008-06-24T22:00:00.000-07:00

I just celebrated my 6 month post-transplant milestone with a visit to the BMT clinic to see Dr. V. Good news: I didn't have to have a bone marrow biopsy-- just lots of blood work. (Well, that's more like awesome news for just for me.) Better news: Only 3 of the 8 medications I currently take are related to the transplant. I have had almost thirty different medications since transplant. Dr. V has been slowly taking me off the Prograf-- the anti-rejection medication. I am down by 80% now with no evidence of GVHD. Best news: DNA (STR) testing continues to show that greater that 95% of my blood cells are donor cells (Tracy's cells). The lab will never report 100%-- but this is basically saying just that. My old blood cells can no longer be detected. My bone marrow transplant continues to prove successful. A TRUE MIRACLE!

‘Believe’ from my nurse Julie

2008-06-17T23:27:00.000-07:00

During induction therapy, in one on my hardest hours, I deeply struggled with side effects of the chemotherapy, with pain and discomfort. I had received any and all medications possible and needed to wait almost an hour before any new drugs could be tried. My night nurse, Julie, came and she stayed with me. An oncology nurse who I knew had a lot to do and had a lot of other patients. But she came to me and stayed.

I was sitting up in bed, unable to find comfort from the pain radiating throughout my body. I was completely exhausted, just crying, when she squatted down in front of me and took my hand. All I could see of her face were her eyes because she was wearing a mask. She locked her eyes with mine and told me that I could do it. She told me that she knew I was strong enough and that I could make it through this moment. She sat there with me the entire time, talking to me, comforting me, helping me focus on other things like my breathing and never loosing contact with my eyes because she believed in me. And because she believed in me I was able to believe in myself.

She left me for only a moment so she could receive the medication that would bring relief and sleep. She stayed to watch the medication take effect. She waited for my ‘drug induced’ grin and for me to fall off to a peaceful sleep.

I couldn't have made it through that difficult time without Julie's help. These kind of experiences with people like my families, my friends, the doctors, the nurses, and techs who continually showed such love and support, and the affirmation to 'believe' really have helped me to be a stronger person. Thank you.

“Oil Change”

2008-06-01T20:13:00.000-07:00

I went to the local ‘quick car oil change’ place near our home last week. I went inside the lobby to wait. A few minutes later a woman came in and sat beside me. I smiled as she sat down.

A minute later she looks at me and asks “So did you get a bad hair cut or was it chemo?” Yeah, I know! Who asks that! I politely answered that it was chemotherapy and that I had leukemia.

She then went on to explain that her sister had cancer and had under gone chemotherapy and radiation treatment. She said that she was familiar with the “chemo hair.” So that explained her question but still who says that!

It was the first time that I had actually gone out without wearing a scarf! During our conversation, I discretely took a scarf out of my bag and put it on. Perhaps I am just not ready to show my new hair. (This picture was taken a few weeks before this incident. So my hair looks a bit longer.) I'd love to hear opinions- bad hair cut or chemo hair. I'll post the results!

“Why I’ve been so quite lately.”

2008-06-01T00:44:00.000-07:00

I am sorry that I have been so quiet lately. To all my friends and family who have continued to support me and who have been part of this journey I feel that I should be completely honest with what my day to day recovery is like and how I am trying to navigate through the experience of cancer. It is now that, the part about ‘navigating’ through this, which in the recent weeks has caused me to feel overwhelmed, alone and incapable of expressing myself. So, I haven’t blogged.

I have been so blessed to share great news from my clinic visits with Dr. V. Truly my lab results have been almost perfect for months now. I have been blessed to have avoided any serious infections, problems with GVHD or significant problems with medications. I have remained in remission and my sister, Tracy’s, donor cells have engrafted perfectly. I love sharing my good news with all of you. I know that each day is a gift. It is one more day in remission and one more day closer to hearing the word “cured.”

But honestly, the recovery is incredibly slow: with constant fatigue, muscle weakness and pain that causes frustration and loneliness. All and any of these symptoms could be caused by medications, effects of the chemotherapy or emotional stress.

I find myself desperately trying to return to “normal.” What I want more than any thing is to regain control of my life. The moment I was told I had leukemia I was robbed of the life I knew. For so long I’ve been a bystander in my own life. When I’ve tried to “jump right in” I became very disappointed when it was so apparent that I wasn’t ready. I am trying to return to being a mother, which as many of you know, is an exhausting job. I find myself limited in ability and strength. I feel like I am in a constant battle with my body and so far my body wins almost every day. It is so frustrating.

Recently a friend asked me how I was doing. I thought for a moment and replied “I think I am in the ‘angry stage’.” She looked at me unsure what to make of my comment. I tried to explain that cancer is like experiencing a loss; like someone you loved is gone. And you grieve for that loss. Weird, right? I know I experienced similar feelings when I was diagnosed like ‘denial’ (this can’t be happening, I don’t have cancer) and then ‘acceptance’ (ok, let’s do this, I have faith that I will be healed). So, I think maybe I skipped the ‘anger stage’ and perhaps depression. I don’t know if that makes any sense… You would think that I would be the last person on the face of the earth to have these feelings. Yet feelings of frustrations, anger and guilt find their way into my day, my relationships and my tear ducts. And truthfully, I was caught off guard by these feelings and unsure of the ‘why now’.

I sit here in think “how in the world can I feel mad? I am in remission, Heavenly Father has blessed my life, answered my prayers and shown His endless love for me and my family.” Yet, I find myself mad that I got cancer, mad that my hair fell out, mad that I still don’t feel “great”, mad that I can’t be that mom that my children need, just plain mad. So, I don’t call my family, I don’t return friends calls and my mind is so filled with questions, thoughts and worries that I can’t sleep . How do you find your way out of that when you feel so tired and your body aches and you can’t muster the energy? Sometimes I can’t ever imagine feeling “normal” again.

Dr.V reassures me that this tiredness and muscles aches will improve as she reduces medication and she added “with time.” She tells me that my recovery is going well and not to consider these rough days a set back. The rough days will come and go she said. And then one day there won’t be rough days like this.

I have learned from other AML survivors that they also experienced similar feelings and had the same struggles. Knowing that my feelings are “normal” and finding comfort, encouragement and support has allowed me to be more open with family, friends and Dr. V. I have chosen to see a cancer therapist, whose experience has been with patients of blood cancers and those that have received transplants.

This is where I am. This was why I struggled so much to blog. This is where I will learn to be healed- physically and emotionally. I know that I do not do this alone. Thank you for the continued encouragement and prayers. This is where I find inspiration- through you.

Have you ever seen a Neostar?

2008-05-13T00:32:00.000-07:00

I forgot that I had Todd take this picture of me with the newly removed Neostar. I am holding it so you can kind of see how it worked. Only the bottom part with the three tubes was visible. The rest of the tubing was tunnled through a vein to my heart. I still can't believe that was in my chest for over 3 months! Yes, it is clean! Yes, I disposed of it after we took the pictures. What a happy day for me to share (sorry it took so long--I had it taken out back in March!) But a very happy day!

Clinic Visits- April 17, 2008 and May 1, 2008

2008-05-07T22:07:00.000-07:00

I have had two clinic visits since I last posted. A lot can change in just two visits!

Thursday, April 17, 2008

My friend, Michelle, accompanied me on Thursday, April 17. Michelle is a great friend (and I am so blessed so have so many of them) and she is always so practical and pragmatic that she won’t let me worry about the “what ifs”. (Thanks, Michelle)

I can’t tell you how much I enjoy having company with me during clinic visits. Well, first off, I probably shouldn’t be driving myself because certain medications “may effect” response times (the roads are safer without me behind the wheel). Second, while I’ve been getting great news at almost every visit since February, I still like having the comfort of having someone with me (it’s that one brain cell that runs around my head worrying about the “what ifs”). Third, and most importantly, I love spending time with my friends (many of whom I haven’t been able to visit with because of the crappy cancer thing).

Again, I was fortunate for only one stick for the blood draw. I think being warmer and drinking more water beforehand helps. We got back to an exam room pretty quickly. Maybe time just passed faster chatting with Michelle. Anyway, vitals were good and all my labs looked great. I really need to take a picture of Dr. V’s smile—it’s the best!

I always hate having to mention any unusual symptoms to her because it’s always an “Uh-oh” kind-of thing. Just the night before, I started having a sore throat. I really hate sore throats now because that was the one major symptom I had when I was diagnosed in September. A look with a flash light revealed that I had developed a case of oral thrush. Yeah, I know. Oral thrush (a type of yeast infection).

Three of our four kids developed thrush while nursing. It is not pleasant as a nursing mom either! The kids were always treated with this yucky yellow Nyastatin suspension like 4-5 times a day where I had to use a dropper to wash the insides of their cheeks. I always had to be treated with some topical antifungal medication too. It was always a huge pain to treat because if not 100% treated it just keeps coming back. I feel just plain awful for babies that get oral thrush. It really is unpleasant! Dr. V prescribed oral antifungal tablets, Clotrimazole, to take 5 times a day. The tablets had to dissolve slowly under the tongue (like over 30-40 minutes) and tasted weird.

We’ve probably mentioned before how my immune system isn’t fully functional. Much like an infant, I am susceptible to many common infections that can cause more serious complications. Fortunately, thrush isn’t life threatening but its appearance is a visible sign that I still don’t have a normal functioning immune system. The regime of chemotherapy for a bone marrow transplant had two specific jobs: to wipe out the bone marrow (the source of my cancer) and to destroy (erase) my immune system. The doctors only want to fight one battle: the DONOR cells attacking MY body. The second battle being MY body attacking the DONOR cells that will become the new (cancer free) blood source. Anyways, if you’d really like to learn about your immune system and how it works go to: http://www.howstuffworks.com/immune-system.htm. Sorry for getting side tracked and rambling on about that (but it explains why the recovery from an allogeneic transplant takes so long.) I have to “grow” a new immune system (and even get re-immunized later).

So, back my visit with Dr. V… Dr. V finished the visit with saying “see you in a month!” Whoa! A month?! Wow!

(Oh yeah, I forgot to mention I had a chest x-ray, too. Initial report is clear).

But, alas, a month’s wait was not meant to be. As I’ve mentioned before, I do not tolerate medications in the “–azole” family (anti-fungals). So, taking the fluconazole with the clotrimazole (for the oral thrush) really wiped me out. I really started feeling sick again with nausea. I also started having joint pain in my hands, knees and ankles. So back to the clinic I went.

Thursday, May 1, 2008

Todd was able to go with me to this visit. I have always hated long visits but the longer they end up being is just more time that we can spend together. (And, no, I don’t make up symptoms just so I can be with Todd—it’s just a bonus).

Anyway, labs revealed that I was slightly anemic again (caused by certain medications that suppress RBC production). No problems with the insurance company this time and I got a shot of Arenesp. Dr.V also said that my symptoms aren’t related to GVHD (chronic) which would be reflected in certain lab work and she just didn’t see it. We went through my list of medications and my complaints. She decided that any benefit from several medications that often cause these side effects weren’t worth it. The result is I no longer have to take Lipitor (high cholesterol), Norsvasc (hyper-tension), Clotrimazole (thrush—which had cleared up), Fluconazole (prophylactic anti-fungal and Prograf stabilizer) and Entocort (GI steroid). Whoa! The hope is that a lot of my crummy symptoms will subside and she’ll start weaning the Prograf dose. Right now, getting off the steroid and reducing the Prograf is really important.

I’ll be back in clinic in two weeks. Hopefully, with more good news!

I would like to introduce you to Denise Rhodes

2008-05-01T22:04:00.000-07:00

I would like to introduce you to an amazing woman, Denise Rhodes. Up until two weeks ago, we were complete strangers. But in this brief time, Denise has shared with me her goal of raising money for the Leukemia & Lymphoma Society of North Texas so that one day we will find a cure to all blood cancers like Leukemia. She has asked if she might share my story with others and said that she would like to do the Triathlon in my honor. I am continously humbled by so many special people like Denise who dedicate their time and energy to create awareness and help others like myself continue to battle this nasty beast called cancer and win.

Here is an e-mail from Denise:

"I recently joined Team in Training—for those of you who do not know, this is program which benefits the Leukemia & Lymphoma Society of North Texas. In this program I will raise money and train for the next five months in hopes of completing a Triathlon. Yes, for those of you falling out of your chairs right now—I did say a Triathlon!!!" http://thenationstriathlon.com/

"Once you have stopped giggling, I would like to tell you this is a huge challenge for me, especially the open water swimming part—but this is something I am committed to do. Having said that, I cannot do it alone—I need your help. I would like to invite you to help me raise money for this important cause. By donating or becoming a fundraiser, you can make a difference! You can use the secure link below to make your donation. From this link you can also learn more about L&LS and the Team in Training program. And if you are interested in a life challenge—you can even sing up to become a participant. "

"All donations are made in your name and will be paid directly to the organization. The website is secure, fast and easy to use."

http://www.active.com/donate/tntntx/DeniseRhodes

"Thank you in advance and please help me continue to raise funds by forwarding this link to as many people as you can and encouraging more people to donate!
I appreciate your support. Please check this link often as I will continue to update it with my training progress (or regress)."
Denise Rhodes
RELENTLESS for a Cure!
http://www.teamintraining.org/ntx/
www.lls.org/ntx

Please vistit her website and if you are interested in following her progress you can go to:

http://deniserhodes.spaces.live.com/

Thank you, Denise, you're an inspiration!

Day +117 "My 34th Birthday"

2008-04-23T18:31:00.000-07:00

Monday, April 7, 2008 (late post)

You know as I have gotten older I don’t find myself thinking about my birthdays as much. I know a lot of us who are in our thirties and older probably feel the same way. Birthdays aren’t so much of a milestone anymore. It’s “before we were married” or “after this child was born” or “when we lived here”.

So I thought my 34th birthday would sneak on by. But I got cancer when I was 33 years old. And I found myself thinking a lot more about my 34th birthday. There were some really dark and difficult times when I was first diagnosed with an acute form of Leukemia.

Would I see my children grow-up, graduate from school, fall in love and get married? Would I even reach my 34th birthday that was just 6 ½ months from now? So at midnight when it was official, Todd sweetly wished me “Happy Birthday." And I cried. I sat there and cried. I had made it…

Todd sat with me and comforted me. He never doubted that I would miss my birthday or any other birthday, anniversary, graduation, or wedding. He told me he had taken today off so we could celebrate.

It was a wonderful (and tiring) day. The girls were off to school and Todd took Aidan to Melissa’s so we could shop for my birthday present. We went to one of my favorite stores, Target. I hadn’t been out in so long. I picked out a pair of storage ottomans that I had been wanting for the living room. Todd said that we needed to pick up Aidan around 12:15.

So we headed back to Melissa’s and as soon as we turned on her street I noticed a lot of familiar cars. “12:15, huh?” Pretty specific time… I knocked on the door and when Melissa opened it there was a big group of friends, shouting “Surprise!” I was completely shocked that I just didn’t start crying as I walked around the room hugging and greeting everyone. It was absolutely wonderful! We all chatted away the hour. So many beautiful smiling faces that I hadn’t been able to see in such a long time! After it was over I just wished I would have thought of taking pictures! (Thank you, Melissa, for being so sneaky.) I confided to Melissa and Michelle later that I would have been bought to tears if I hadn’t already used them all up last night.

After the girls got home from school we had an early dinner (3:45pm) over at Chili’s near our house. I think we’re pretty brave to head out with four kids especially when one of them is a two year old! It was a nice time and the kids were so well behaved. We finished off the day and ate cake and ice cream.

I don’t think I’ll ever let a birthday “sneak” on by again. I just may not admit to my true age!

Day +115 “Kylie’s Birthday Party”

2008-04-16T21:24:00.000-07:00

Saturday, April 5, 2008 (another late post)

I would have to say that today was the best “milestone” yet. We finally celebrated Kylie’s 8th birthday. Kylie turned 8 last September. We had planned a “High School Musical” party for September 29th and sent the coolest CD invitations to some of her friends. We had bought all the party supplies (thanks, Mom!) and planned the activities in the beginning of September. I was almost as excited as she was! Unfortunately, the party was postponed due to cancer.

Kylie is one of the BEST kids. She easily accepted having to hold off on the party until I got better. And who could have ever imagined 6 months later we would be able to have her party. Artie, Todd’s mom, was here helping us out the past few weeks and was leaving later today - so all the more reason to have the party.

It was so awesome to see the girls having so much fun; singing and dancing to HSM on the karaoke machine (thanks Kelley and Jimmy!). See for yourself how much fun the girls had.

After all was said and done, Kylie thanked us and said, "It was the best party ever!!" So, even though it was a crappy reason to wait, it was well worth it.

Day +113 “Clinic Visit”

2008-04-14T07:54:00.000-07:00

Thursday, April 3, 2008 (late post)

Today Melissa came to clinic with me (Thanks, Melissa). This was the fastest clinic visit I’ve ever had. We were in and out relatively quickly and home before noon. I think I’ll ask her to take me from now on. Sorry, Todd.

The phlebotomists weren’t all that thrilled to see me walk in. Emmit said “No way! I am not even gonna try!” So the other one did (sorry, can’t remember his name). It was only one stick today! Maybe next time Emmit will have more confidence!

Melissa and I hung out while waiting to be called back to the exam room. Like I said, we didn’t have to wait too long. Vitals all looked really good. Hopefully, I’ll be taken of the Norvasc (high blood pressure medication), although I’m pretty sure some medication I’m taking is actually causing the high blood pressure. Ugh! Medicines and their side effects!

Dr. V was thrilled with my labs today. All of my blood counts (WBC, RBC, platelets, ANC) were in range. And that’s a first since all this started! She also congratulated me again on the biopsy results and DNA tests. She asked how I was doing and I told her the same thing I tell her every visit – just plain tired most of the time and tired, achy and sore muscles the rest of the time. I also had been experiencing frequent nausea the past few weeks. Dr. V reassured me the fatigue and soreness will improve once she starts weaning me off a lot of the medications responsible for the symptoms. So she looked over my record and discovered my stomach problems and nausea started when she doubled my fluconazole dose. I have a pretty bad history with the –azole family (anti-fungal). She said that not only will I start feeling better, but, that by reducing the fluconazole, she is basically starting the reduction of the Prograf (anti-GVHD, immunosuppressant). And that’s good news! FYI: An anti-fungal medication like –azoles are used preventively (blood borne fungal infections are life threatening post-transplant), but also to regulate and maintain oral Prograf levels.

All in all, it was a short and very sweet visit. It is always nice hanging out with Melissa and having girl talk! My next one won’t be until April 17th. Let’s hope that one goes just as well!!

Day +111 DNA (STR) Test Results

2008-04-01T21:32:00.000-07:00

April 1, 2008

Bone Marrow Engraftment Results: STR Analysis*

Results:
% Donor (Tracy): >95%
% Recipient (Courtney): Below Detection

*Short Tandem Repeats (STRs) are highly polymorphic DNA markers that are used to detect the engraftment of normal donor cells (Tracy’s cells) in the bone marrow transplant recipient (Me) post-transplant. DNA isolated from WBCs of the patient and donor is characterized with 10 polymorphic DNA markers prior to the bone marrow transplantation. The patterns are compared and one marker is selected to distinguish donor and patient as uniquely different from one another. This will be subsequently used to assess the status of donor cell engraftment. [Source: Molecular Diagnostic Laboratory]

Translation: Tracy’s cells have successfully engrafted and are producing all of my blood cells. Her cells are now my cells and are cancer free.

Tracy and I genetically speaking are “blood twins.” What flows in her veins now flows in mine. I cannot begin to count the number of times I have been brought to tears as I truly comprehend the gift of life that Tracy has given me. How can you possibly begin thank someone who has saved your life? I love you, Tracy.

Day +103 “The Bone Marrow Biopsy Results”

2008-03-31T23:25:00.000-07:00

Monday, March 25, 2008 (late post)

What everybody has been waiting for the official bone marrow biopsy report:

Diagnosis:

BONE MARROW (ASPIRATE, CLOT, CORE BIOPSY, AND PERIPHERAL BLOOD):

- NORMOCELLULAR BONE MARROW WITH TRILINEAGE HEMATOPOIESIS.

- NO MORPHOLOGIC EVIDENCE OF ACUTE LEUKEMIA, SEE COMMENT.

COMMENT: Flow cytometric analysis on marrow aspirate provides no immunophenotypic evidence of a hematolymphoid malignancy.

Translation: NO cancer cells detected. I am still in REMISSION!

I can’t even being to describe the feelings I had as I read and re-read this report. I sat there and cried for a few minutes. First was a moment of disbelief. Then sheer happiness and gratitude. I felt this huge weight lifted from me, the weight of worry was gone. I was still in REMISSION. And next week we will receive the genetic testing (STR) that will confirm that Donor cells (Tracy’s cells) continue to produce healthy, cancer free cells and that Recipient cells (my cells) are no longer present.

I am so grateful for the love and support I have received during this time. So many of you, too many to many here, right now, have given me the encouragement to continue on and inspired me through your faith and hope.

I know each and every day that I have is such a precious gift and they are blessed by each of you. Thank you!

I love sharing such wonderful news. I will be visiting the clinic on Thursday and will have more to share then.

Day + 100 “The Milestone”

2008-03-29T21:03:00.000-07:00

Friday, March 21, 2008 (Late post)

Today marks the 100th day since my bone marrow transplant (December 12, 2007). Today is also exactly six months since I was diagnosed with Acute Myelogenous Leukemia (September 21, 2007). Today we celebrate 155 days that I have been in remission (October 19, 2007). And in a few days, once we have the results of the bone marrow biopsy, I’ll be adding to the number of days I’ve been in remission!

The one hundred days post-transplant is significant in several ways. Generally, Acute GVHD, if it is going to act up and cause problems, happens before this time. I personally have been blessed to not have developed the Acute version. I did experience what my doctor believes were mild cases of GVHD, which were treated successfully with steroids.

Reaching the 100 day mark without developing serious problems or infections has been a huge blessing. It shows that my body is slowly recovering and medications are working. It also means that Dr. V will consider slowly reducing the Prograf. This is a medication that helps prevent transplant rejection by suppressing the immune system. Prograf helps prevent the donor cells (Tracy’s cells) from rejecting (attacking) the recipient cells (Me). I also think 100 days just sounds like a great goal and accomplishment. Regarding the significance of 100 days, I read this on a website, “The ‘100 day mark’, which is 100 days post-transplant, is generally considered a milestone - by this time, the [patient] is considered past the worst of the procedure and on the path to recovery. Full recovery is slow, with it taking up to two years for the patient to return to full health.” Ugh, “two years”! It’s actually comforting to know that I’m not behind in the recovery process. I feel like I should be back to full strength by now. I wish I was. But I know that I just have to take it one day at a time. And, eventually, whether it’s six months or eighteen months from now, I’ll be back to my old self. Or new self.

Throughout this journey, “milestones”, have helped me see and understand that I’ve been on the right track, that I’ve been getting better, and that I would make it. Six months later I have made it! But not alone.

I was never alone. From the first moment I heard the words "You have Leukemia" I was not alone. I had my husband, Todd, my mom and dad by my side. Not one single night at the hospital was I alone. Todd, Kelley, Tracy, or Susan were always by my bedside, sleeping on some horribly uncomfortable couch or roll out bed. During the days, I had my mom, dad, Todd, my brother and sisters and even dear friends to keep me company and help me cope. And even in the quiet hours of the night, laying awake in the darkness when fear and doubt would creep into my mind, I was not alone. The sweet peaceful reassurances of the Holy Spirit would calm my heart and quiet my fears and return my thoughts to the Atonement. And I would know that I was not alone in this battle with cancer and did not suffer alone. I knew that my Savior, Jesus Christ had not only suffered for my sins but that He had also taken upon Him my pains and sicknesses. I was not alone.

One of my favorite scriptures, that has helped me remember this is:

11 And he shall go forth, suffering pains and afflictions and temptations of every kind; and this that the word might be fulfilled which saith he will take upon him the pains and the sicknesses of his people. 12 And he will take upon him death, that he may loose the bands of death which bind his people; and he will take upon him their infirmities, that his bowels may be filled with mercy, according to the flesh, that he may know according to the flesh how to succor his people according to their infirmities. (Alma 7:11-12)

I know that I was united in prayer with countless family, friends and strangers from all over the United States and Abroad, in different languages and in different places of worship. I was not alone. Thank you to you all who have cared for and thought of me and my family throughout during this time.

Day+99 “Bone Marrow Biopsy”

2008-03-25T23:49:00.000-07:00

Clinic Visit- Thursday, March 20, 2008

You know that feeling you’d get in your stomach before an important exam or before a first date? Well, that is the exact feeling I had in my stomach today before my bone marrow biopsy but worse. I think it was made worse by the fact that I had to “fast” for the blood work. I think it felt worse because some where in the far reaches of my mind there is the thought that the cancer isn’t gone, that just one cancer cell is hiding somewhere… I hate how cancer can create doubt. But I’ve learned that cancer cannot take away hope, faith, love and courage. (And believe me it takes a little bit of courage to get up on the exam table to have a bone marrow biopsy.)

I think I’ve used the phrase “BEST YET” a number of times recently but I sure have to say that today’s biopsy was ‘best yet” (that’s if you could apply those words to having bone marrow aspirated from the hip.) Jay, the nurse, had the IV line in without any problems, gave me an extra dose of Ativan ahead of the procedure and gave me the full dose of Versed.

I still think I have a tolerance to Versed, the drug used for “conscious sedation”. Jay says that most patients float in and out of awareness, usually not remembering anything. For me the experience is usually being completely aware of what is going on, being able to feel everything and not being able to react to it. A strange and helpless feeling.

Like I’ve said before the Lidocaine injections are the worst. The numbing is done in several stages so that the area is numbed all the way down to the bone. Then the biopsy needle is inserted and forced through the bone to the marrow where they aspirate and take samples. This was my fifth biopsy and by far the best. Although I still felt the pain of the procedure and squeezed Todd’s hand very tightly, I was definitely more relaxed, more talkative and even joked around and I felt calm.

After the procedure was over, I was able to rest on the exam table until Dr.V came in with my lab work. She told us everything was looking good. She ordered another injection of Aranesp which I received before leaving. She revisited how my GI discomforts had improved from the previous visit. I told her they had improved especially one specific problem. But that I was still experiencing nausea. She said she will give the Entocort a little more time and if it doesn’t clear up all of the GI discomforts she’ll add a low dose of Prednisone.

Dr. V is the sweetest physician. She is so genuine. Dr. V’s staff: Laura, the PA, the nurses and techs are such special people. I am not just one of the successful transplants to them. They know that I am also a wife and a mother to four active children and I have a life that I want to catch up to. And they want me to catch up too.

Dr. V always goes over every detail of the reports, answers any questions straight forward. And when it's good news she always has a twinkle in her eyes, the prettiest smile and a joyful laugh. I feel so blessed to have been able to see that smile and hear that laugh for almost two months now. I’ll just be waiting for the "good news" signs until she gets the biopsy results in a few days.

Day +96 “10 years and counting”

2008-03-19T20:47:00.000-07:00

St. Patrick’s Day, Monday, March 17, 2008- Post Transplant Tests (Late Post)

Not quite the way either of us imagined spending our 10 year anniversary. It was actually planned to include sun, sand, tropical waters and no kids. A trip to paradise on hold (for at least a little while.) Instead we spent the ENTIRE day sitting in doctor’s offices and waiting rooms.

But we were together and that is what I was truly grateful for. The long waits in the offices gave us time to reflect upon what a truly blessed life we have had together. A life blessed with four beautiful children who teach us more about unconditional love and forgiveness. A life filled with family and friends who teach us about charity and compassion. And, yes, a life that had to include Leukemia, long hospitals stays and a lot of waiting in waiting rooms, has been blessed. If you already didn’t know it, Todd is an amazing father, husband and friend. I think this blog site that he set up from the beginning shows many of the qualities that I saw in him the first time we met. I guess I’ll have to share our story another time. But for now I will say “I love you, Todd. You are my eternal companion.”

All of our waiting in waiting rooms for two tests, that together totaled 1 hour and 30 minutes, had us gone all day from 9-5. The good news from all the waiting is that the Pulmonary Function test and the MUGA (heart) test show from initial results that I passed. Yea me! In other words, my lung and heart functions were not damaged during the transplant procedure. Dr. V will have the finally results when I see her on Thursday—the BIG day—Bone Marrow Biopsy.

Please keep me in your prayers. Please pray that the procedure goes well and that no cancer cells are detected and that Tracy’s cells continue to be successful and that my blood cells are still no longer present. My testimony of prayer has only been strengthened by all of you: our families, friends, neighbors, community and many of whom were strangers and now have become friends.

I hope that 10 years from now you all are still keeping up with us and that the words always include “Cancer FREE!”

Day 92 - Lucky Number 8

2008-03-18T21:13:00.000-07:00

Clinic Visit - March 13, 2008 (Late Post)

Did I say I could handle traditional blood draws? No problem? Well, maybe I spoke too soon. Today’s clinic visit started at the lab to have my blood drawn by a phlebotomist (yea me, no neostar!). I gave him a fair warning that I have bad veins—they like to move and roll. I am generally mentally prepared to be stuck by a needle at least three times before a successful blood draw. And, at 9:20 in the morning, these guys are ready to go- very friendly, easy going and confident. Which is always a good sign.

In the end, and 8 stab wounds later, these guys were still very friendly, but they were very apologetic and their confidence was somewhat shaken. I had to keep reassuring them that I was alright and that they could try again. After the second attempt, they had almost been successful, collecting 4 of the 12 tubes needed before the vein collapsed. Then came attempts 3 thru 8, with 8 being successful. I think they took a few extra tubes for good measure!

Finally, after a successful blood collection, I went upstairs to have a chest x-ray done. I was in and out pretty quickly. I don’t know if I mentioned this before but I get a monthly chest x-ray as standard post-transplant protocol. As always, initial indications are that my lungs look clear.

My vitals are improving with each visit. My blood pressure is in normal range and Dr.V has taken me of Atenolol (beta-blocker-the medication that contributed to my bouts of fatigue)and reduced the dosage of Norvasc (hypertension medication.) It’s always nice being taken off a medication. Unfortunately, as one medication was taken away, another was added.

The past week and a half, I’ve been feeling slightly nauseous – like butterflies taking flight in my stomach from time to time – and having some other GI discomforts. Dr. V. was concerned that this may be a mild flare-up of GVHD, so she prescribed a ‘topical’ steroid, Entocort, for the GI tract. It’s not what you normally would think of as ‘topical,’ but apparently it’s only meant to treat the lining of my GI tract and not to be absorbed into the blood stream. Hopefully, that means much fewer side effects than the steroid prednisone.

Dr. V is still very pleased with my progress and said that my labs looked good. She pointed out the increase in my RBC production and told us the Aranesp was doing its job. She will give me another injection on the 20th.

Next week is full of tests. I will have follow-up tests that will compare heart (MUGA) and lung (Pulmonary) functions to my pre-transplant condition. The big day is Thursday, 20th, when I will have a bone marrow biopsy.

Day 83 "Tube Free!" and Day 85 "Crazy Day!" (edited version 2)

2008-03-09T20:58:00.000-07:00

Day +83 “Tube Free!”

Tuesday, March 4th (Late Post)

Today started with an early morning visit to the BMT to have one last blood draw using the Neostar before it was removed. We then headed over for our 9:30am appointment at the doctor’s office to have the catheter removed. In what was to be a 15minute procedure….I hate waiting. It never matters what time the appointment is and if you get there 20 minutes early or 10 minutes late. They make you wait. Sorry for venting my frustrations but time, my time, the time I can spend with my family and doing things that are important to me, it has a different meaning to me now. Anyway…

The procedure itself was short and relatively pain free (like I said before, it’s the Lidocaine shots that are the worst part and they were.) The PA, Maria, that preformed it was the same PA that was there assisting when it was inserted three months ago. I’m never quite sure if I want to be “talked through” any surgical procedure (and they talk through every time regardless) but she was especially sensitive to my anxiety. From prep time, removal and clean up the whole thing lasted 15 minutes. She left us with care instructions and we headed back over to the BMT for lab results and a meeting with Dr. V.

We were taken back to an exam room and given a copy of my lab report. And we waited. For over an hour. Finally, Laura, the PA, came in to discuss the results. Everything looked pretty good, except that I’m still anemic. My counts dropped again since my last blood draw a week and a half earlier. Again they wanted to give me a Procrit injection, but told us our insurance company would not approve it. This was interesting, because our insurance company said they had no record of denying its authorization. So, now I’m looking at six hours of blood transfusion on Thursday. Go figure- the day I get the Neostar out I find out that I need my first blood transfusion since my last hospital stay on Jan. 17. My only hope is it helps me get over the utter fatigue I’ve been feeling recently.

Day + 85 "Crazy Day!" (Late Post)

Thursday, March 6th

It turns out that the clinic never really asked for authorization from the insurance company. We’re still not exactly sure what happened, but, Dr. V. sent this message to us Wednesday evening:
“the procrit ‘police’ were using medicaid guidelines for ALL pts and included Courtney in it. The people who police the procrit are not transplant savvy....anyway, we have it squared away and Courtney is NOW APPROVED for the procrit and she can get it in clinic tomorrow instead of the transfusion.” Kinda frustrating, but at least it’s cleared. An interesting thing our insurance case manager told us was that Procrit is in fact considered experimental for patients with AML, but went on to say that this doesn’t apply to me because I’m in remission and NOT leukemic. Nicely stated.

Anyway, Dr. V ended up giving me an injection of Aranesp – like Procrit but supposedly more effective and longer lasting. I’ll take a 2 second injection over a 6 hour infusion any day. Especially when I no longer have the easy access catheter for the blood, and, historically, they have a hard time starting IV’s on me.

What made this so frustrating was that two weeks ago when my blood counts started dropping I could have received the injection but by not receiving it sooner I actually became symptomatic with anemia. So it's kind of like feeling really tired but adding butt kicking fatigue on top of it. But what mattered in the end is that I got my injection and should feel improvement over the next few days. And I’ll return to the clinic on Thursday for follow-up lab work.

Unfortunately, Todd had to stay home with Emma and Aidan because our sitter had a sick child of her own. Fortunately, Melissa was able to come with me and keep me company. It was a nice visit, I haven't hung out with her in a while and we were VERY fortunate to return home early enough to avoid having to drive in the snow. YES, SNOW!! Way more than I ever would have expected (4-5 inches)– in Texas – in March!

I’m sorry I got so behind. I promise I’m trying to catch up. Thanks for caring enough to follow our journey.

Day+78 “No Clinic Visit!”

2008-02-28T22:25:00.000-08:00

Today marks the first day that I have not had a clinic visit during a week in a long time. It was nice in the sense that I didn’t have to get up early. I really struggle getting up most mornings (I have never been much of a morning person but now it is definitely much more difficult.) We definitely didn’t miss the long drive into Dallas. And yet strangely, I felt some what anxious not having a weekly exam and lab reports that tell me that I really am doing well even at times when I struggle with intense periods of fatigue that knock me on my tail. But the good news is that I really do feel better. Better than I felt at diagnosis and through induction. Improving everyday. Now for even better news!

I am scheduled to have my Neostar removed this coming Tuesday, March 4th. Exactly three months after having it put it. Wow! The Neostar has been invaluable during the time of treatment (chemotherapy, transplant and recovery). It has saved me from countless needle sticks, made it possible to receive medications, blood products and fluids all at the same time and provided a sterile environment for these procedures. But now it’s time to part with it. I am no way saddened by this (who would miss a catheter with three large ports protruding from their chest) but it definitely is a huge milestone. The procedure to remove it is much simpler than inserting it. But it does require a large needle and an injection of Lidocaine. In most procedures, it’s the Lidocaine shot that is the worst part! Considering everything I have endured the past five months Tuesday should be a breeze.

I’ll be seeing Dr.V. after the Neostar is removed. At her office I will have my blood draw the old fashion way! I have never had great veins for needle sticks (a family trait-the veins like to move and roll) and usually take two sticks to get blood. Again, I think I can handle traditional blood draws.

This is also the first week that I am on my own “officially.” Todd’s mom, Artie, returned to San Antonio this past Saturday. Boy, did I cry to Todd at night how worried I was to be on my own. Todd, my positive support, reassured me that I would get the help I needed and not to worry. Artie has been such a tremendous help over the course of these past five months. I kept telling her she had to stay until my hair was an inch long! We laughed and I gave her a hug. I really hope she knows how much we appreciate everything she has done. She’ll be back over Spring Break when the rest of the Flynn’s will be visiting us. We are really looking forward to seeing every one again.

So, how did my first week go with out Artie around? Well, I’ve managed and survived but only because some excellent friends of mine made it easier for me. I hadn’t realized myself exactly what my limitations were. And I am so grateful for friends that did recognize them and for a husband that did his best to be home by 5. It’s all “baby steps” for me and to know when to ask for help when I need it. Sometimes I feel frustrated not just jumping back into all of my life. Then I begin to understand that it’s not like going back to “normal” but that it will be a “new normal.” I haven’t quite figured out what that will be or even how long it will take to get there. But I do know that I am not alone in figuring it out. Again, THANK YOU to my family, friends, neighbors and new friends for supporting me through this time.

Day +71(Feb.21st)-“Exactly five months since I was diagnosed…”

2008-02-22T22:17:00.000-08:00

A couple of days ago I had a great visit from my friend Crys and her beautiful children, Alexa and Zack. Our kids had a blast playing together. It was such pure joy to hear them laughing and see them running around. I really enjoyed my visit with Crys. We sat and swapped cancer stories. Not that cancer stories make the best stories, but it is interesting sharing the different perspectives—as a parent with cancer and as a parent with a child who has cancer. Some of the things we have learned are that cancer SUCKS and it changes you forever. Five months, while they’ve gone by fast, have seemed like an eternity. I can’t imagine how hard it would be to endure it for over two years as her family has had to. Alexa is such a fierce fighter, just like her mom. I’ve learned so much from the way they’ve fought and persevered. They are such an inspiration of LIFE and LOVE. Please continue to pray for Alexa and her family. I know first hand just how valuable the prayers are.

Thursday, the 21st, we had our weekly visit to the clinic. I know we keep saying that every visit has been the best but really today’s visit was quite likely THE best. And could have been even better if not for a little hold up by the insurance company.

I’m officially off the Prednisone (a steroid-used to prevent GVHD). Yeah me! Hopefully this means that better nights are ahead and I can actually start sleeping again. Something for which I’ve been yearning for over a month now. We’re praying that the GVHD doesn’t flare up in the coming weeks. That would be a significant milestone—not developing acute GVHD in the first 100 days post-transplant. An interesting comment on the Prednisone: over the next two to three weeks I will begin to see a more significant development of my muscles and less aches and pains as they begin to repair and rebuild. Steroids are so weird! They made me eat non-stop, kept me awake, suppressed my immunity even more than it had been by Prograf, and slowed muscle development. But ultimately controlled the GVHD. Crazy!

My CBC’s are still pretty good with the exception that my RBC, HGB and HCT are all a little low. I’ve never quite gotten those into the normal range, but since they dropped a little since the last visit, Dr. V wanted to give me a Procrit shot. But alas, our insurance company, whom had already approved several Precrit shots, denied the injection today. The clinic said it may take 90 days to gain approval. This could be sped up by us calling and bugging them. Most of the time this tactic works. In the meantime, I just have to hope that my body naturally increases my red blood cell counts. Dr. V said the low counts are most likely due to a couple of my meds, so she’s not worried. It’s just that having more red blood cells could help me to have more energy. All I’m thinking is that I need more sleep! Chasing those Zzzzzs…. Another insightful piece of information: the beta-blocker, the one I take with the blood pressure medication, may also be a culprit in my afternoon fatigue bouts. Dr. V’s solution: take the beta-blocker later in the day so when I am ready for bed that fatigue just might be enough to send me to sleep! Interesting. Dr. V said that this kind of fatigue is especially common in women who take this medication. Oh, well, better late then never. Still might be useful.

She also said that I could have my Neostar scheduled for removal. This will take place either March 4th or 11th. I’m pulling for the 4th as I’m ready for these chest tubes to be gone!! They aren’t too annoying, but they’re a constant reminder of everything I’ve had to go through these past 5 months (exactly 5 months today since diagnosis). And I’d just assume not be reminded. My bald head is enough. Which, by the way, is less and less bald by the day. In this picture taken one week from last week's, you can see even more hair!

I wanted to announce that today I had to PLUCK a few stray eyebrow hairs! GASP! It almost seemed like a sin to remove one strand of hair from my head! But, and I know the girls will understand, there is nothing more annoying that having a stray eyebrow hair staring at you in the mirror! But what an exciting milestone! I’ll be back to regular plucking in no time!

Also, I don’t have to go to the clinic next week!! If all goes well, next week will be the first week since the last week of August that I won’t see a doctor!! That’s crazy!! Not that I mind the doctors, after all they’ve helped save my life. It’s just that I could use a break, and this is a giant leap towards returning to a “normal” life. Ahh, normal. If only I could remember what that was like….

Day+65 - Thursday’s Clinic Visit

2008-02-17T22:21:00.001-08:00

Best clinic visit! Great news! Yea ME! CBC results all normal, metabolic panels all normal, blood pressure is finally in normal range (first time in almost a month), weight maintaining and gaining.

No new prescriptions! Predisone reduced from 20mg/day to 10 mg/day. Next week, it should reduce to 5mg/day or every other. And when Dr.V. has me completely off, she will monitor my progress for about a week or so. If I continue doing well she will arrange to have my Neostar removed. Yea! Other good news - she stopped the mycamine (anti-fungal I.V. infussion) today! This is the first time since Consolidation (Oct. 29th) that I am not taking mycamine! She did increase the Diflucan (Fluconazole-oral anti-fungal) from 100mg/day to 200mg/day. So, no worries. All my bases are covered with oral anti-biotic, anti-viral and anti-fungal medications. So, I'll be going to clinic every other week after I am off the steroid and won’t have the Neostar anymore! I can handle a blood draw the old fashion way. Definitely! No mycamine, no steriods and no Neostar! Isn't that wonderful!

Better sleep will come soon as my steroid dose is lowered. My hair is growing back! Every day’s a good a hair day when it’s growing back. Especially when it’s still too short to be messy. ; )

Funniest item I had at the hospital during the stem cell transplant: a hair dryer! I know you’re thinking “why would she need a hair dryer? She doesn’t have hair.” But having a hair dryer to warm up my caps and scarves was especially nice plus some nights I would have the worst “night sweats” and wake shivering with a wet night cap. The hair dryer came in handy. Thanks, Dad.

Nice surprise this week: Christi Taylor, a girl from our Church stopped by to visit. I hadn’t officially met her yet because I was diagnosed around the time she and her family moved into the area. But she was such a sweetheart and sent me an e-mail early on during treatment. I e-mailed back and told her that I would look forward to meeting her in 2008-cancer free! So she gave me call and asked if she could come by for a short visit. I really enjoyed our visit. So, to all you girls out there who aren’t sure about coming by to visit just need to give me a call!

Here’s a slideshow “The story of my hair…”

Day + 61 - “I still don’t believe it…”

2008-02-11T14:20:00.000-08:00

O.K. On behalf of my defense, I started this blog entry on day +55. Today is day+61. I have never in my entire life been at loss for words. I have sat here at the computer, staring at the screen for hours, trying to put into words some of my experiences from the past 5 months. What I found was there were just too many of them. It really is quite overwhelming to reflect on everything that has happened. I edited and removed half of it because I couldn't find the right words and some it just didn’t make sense (a most definite result of chemo brain--it is real.) Maybe with time, sharing those experiences will get easier. Anyway, this is as far as I got….

Last night(Day +55), I was standing in front of the bathroom mirror (fully dressed), my arms and shoulders hanging down, doing a pretty good job at making myself look as pathetic as possible, when Todd comes in. I say “I still don’t believe it.” “What?” he says. Using both hands, pointing at my head, for a more dramatic effect, I say “This. I am bald. And I don’t have eyebrows or eyelashes. Look at me.” “I am. You’re beautiful,” he says and kisses my bald head. I still don’t believe it. (I love you, Todd.)

Sept. 21st--After I was admitted to the E.R. at Harris Methodist, I was put in a hospital gown, given a mask to wear, taken back to a bed in a curtained area, where nurses monitored vitals, asked for my medical history and worked on getting an I.V. started. I looked at the clock. 2 pm. I turn to Todd and tell him he has to call Melissa (she already had Aidan.) He has to tell her. He has to call one of our best friends and tell her that I have cancer and ask her to take care of our children. School was going to be out soon. I told him he had to ask her to call Cheryl and have her bring Emma home from pre-school to her [Melissa’s] house. I told him to ask her to call the elementary school, tell them that Kylie and Miranda needed to get off the bus with her girls. I told him you have to tell her, you have to ask her. Tears just stream down my face when Todd comes back and tells me that she didn’t hesitate. She would take care of them for as long as we needed and do whatever we needed. And she (and Dan) did. I still don’t believe it.

I still don’t believe it… but apparently, during induction therapy, on the evening (Oct. 15th) my sister Tracy was arriving from Italy to stay with me at the hospital for a week, I was definitely anticipating a visitor. Or I should say visitors. My mom was staying with me when Todd came for the evening to visit. No, it wasn’t Todd that I was waiting for. I asked my mom if it was o.k. to tell Todd who was coming to visit me. She said yes, I could tell him. “Really?! I can tell him?” She just smiled and said “yes.” I turned and looked at Todd and said “Paula Abdul and Michael Jackson are coming here to visit me!” Who?! Where did that come from?!

When Tracy finally arrived, I insisted that she wear a pair of my pajamas (because of course she came all the way from Italy and didn’t bring anything with her) and told her that she could sleep on the top bunk. I don’t believe the hospital had rooms with bunk beds.

Today is Day +61 from the stem cell transplant. The engraftment was successful. Tracy’s donor cells have officially taken over and are producing normal, healthy, leukemia FREE blood cells! My bone marrow biopsy results show that there are no cancer cells detected. I am home with my family. I have been supported and uplifted by family, friends, neighbors and even complete strangers throughout this trial. Each day brings me closer to the time when I can use the word “cured.” I still don’t believe it.

D + 58 - More milestones

2008-02-08T21:49:00.000-08:00

Hi my name is Todd and it’s been 15 days since my last posting. I have to apologize. With Courtney’s increase in energy and alertness and overall improvement, I figured she would takeover doing her own updates. After all, who knows what’s going on better than her? But alas, she’s saying that her mental acuity isn’t quite there yet. She’s even blaming it on chemo brain. But I don’t think she can use that excuse any more, since hair growth is a good sign that the chemo has all but worn off.

That’s right, as of Saturday, February 2nd, we officially found new hair growth on Courtney’s head! What a great milestone! Saturday also marked the first day since all this began that her energy level was greater than mine. (I was feeling a little under the weather.) It’s amazing the improvement she’s made over the past three weeks.

Since her last discharge from the hospital, her greatest battle has been with insomnia. This is likely a side effect of the steroid, prednisone, that she’s taking to prevent GVHD from flaring up. She’s tried just about every form of legal sleeping medication known to man (not together thankfully). The last one, Lunesta, she tried for the first time the other night. Just as she was taking it, I was reading an online forum where people had posted various comments about the efficacy of Lunesta. I chuckled out loud as I read comment after comment about the awful taste Lunesta left in peoples’ mouths. My favorite was the one that described it tasting like a herd of wild animals nesting in their mouth. Hearing my laughter, Courtney asked what was so funny. Not wanting to give her any preconceived notions about the new drug she was taking, I quickly made up a story. Needless to say, about thirty minuets later Courtney was climbing out of bed exclaiming that she had the worst taste in her mouth. I had to apologize for laughing at her expense. The worst part was that it did nothing to improve her night’s sleep. Sorry, Court.

Fortunately, her nights have slowly improved through the course of the last two weeks. It’s helped that her prednisone dose has been decreased by 10mg with each week’s visit to the clinic. After starting at 50mg, she’s now down to 20. In two weeks, barring a GVHD flare up, she’ll be done with the prednisone altogether. During Thursday’s visit to the clinic, Dr. V mentioned that the completion of the prednisone would also mean the completion of her Mycamine. Mycamine is the broad spectrum anti-fungal medication that Courtney receives every night via her Neostar catheter. Anyway, since she is no longer receiving blood products, there are two remaining purposes for the Neostar: blood draws and the Mycamine. In two weeks, the Mycamine will be complete and Courtney’s blood draws will go from being weekly to every other week. SO, if she’s willing to put up with a needle stick every other week, she can opt to have her Neostar removed!!

While the Neostar has been a great blessing, as it has saved Courtney from countless needle sticks, she’s more than ready to have it taken out. She can’t wait to be able to take a normal shower without the “taping up” ritual and without the worry of getting it wet. The PICC line in her arm was much easier to cover and it only took us three days to figure out how to cover it up properly for a shower so it wouldn’t get wet. In contrast, it took us almost two weeks to figure out a decent way to cover up the Neostar, and we’re still trying ways to improve it (she had it placed back on December 3rd). So you can understand the excitement she felt when she was told she could likely have it removed in two weeks! This would put the removal around D+71, much sooner than the 90 to 100 day mark we anticipated.

And just when you thought there couldn’t possibly be more good news, Thursday also marked the first day since Day 0 that Courtney’s platelets were within normal range. They dropped to 132 on D+1 (normal is 140 – 440), reaching an all time low of 9 on D+9 (Dec. 21st). Thursday they were at 147!! You can cut her and she won’t bleed…as much.

With all this good news, and with our lives beginning to take on a sense of normalcy, it seems like this roller coaster ride is finally coming to an end. Unfortunately, much like a real roller coaster, this may be just the part that makes you think it’s almost over, only to throw in a couple more unexpected twists and turns. In the case of the real thing, that would mean more fun, but this has been more like the roller coaster ride from hell, and we’re ready to get off!

Saturday - Day + 52

2008-02-02T22:34:00.000-08:00

I hope the silence on the blog hasn’t worried anyone. My apologies to everyone. Hopefully, you can all assume that “no news is good news” if the posts aren’t as frequent. But I do want to say how much each and every one of your messages, prayers and well wishes have meant to me. THANK YOU!

I guess writing my own update for the very first time was harder than I thought. I am definitely not as eloquent as Todd and I admit that our 8 year old, Kylie, has better typing skills than I do! I am one of those people who “hunt and peck” with two fingers! So, first, I thought I’d share the e-mail that I sent to our families about my clinic visit on Thursday:

Hello Family!

Don’t be too surprised that I am writing my own update! And don’t flip at the time I am writing it! It all comes with good news. The clinic visit went really well. All my counts look great and all in normal range. No procrit shot- red blood cells are good. Dr. V. reduced my steroid again (the steroid is one med that keeps me awake and throws off my sleep schedule—why I am up right now). But she did prescribe a new sleep-aid to get me through the steroid. I should be completely off in about two weeks. So, in a few weeks I will be off a lot of these meds. Great news! The steroid also has the effect of making me hungry all the time! I put almost 5 lbs. on the past week and a half! My favorites right now are bean and cheese tacos from Taco Cabana. So, every week we go to Dallas, we pick up 10 or so tacos to take home. So, to say the least, Dr. V. and her PA, Laura are thrilled. Lots of smiles today. No signs of GVHD, CMV results are negative, IGG are normal and Prograf level results I’ll get tomorrow. The sleep-aid seems to be kicking in. I feel very relaxed now…. Time to catch some Zs.

Every one is doing well. I love my time with the girls and the “beast”. Alissa has been here this week to help. It’s been fun. Todd’s working a ton so I sure miss him during the days. Kind of makes having clinic days nice because we have time together. Dr. V. said she’ll see us next Thursday! That’s all for now.

Love and miss you,

Courtney

It is hard to believe that I am half way to the big “100 day” milestone. Time has been this complete paradox. Friday, September 21st, the day I was diagnosed with Leukemia-CANCER- was devastating and time and life felt like it just stopped. Well, really only like for 10 minutes, that seemed like forever, and wiping tears from my face I told Todd “O.K. Let’s do this.” And we made the decision where to go for treatment, got up, left this oncologist’s office and headed to the hospital. I don’t remember two-thirds of that time (thanks to wonderful narcotics—I’ll share more of my thoughts on drugs another time). This was a tremendous blessing. To be spared the true concept of time. Time away from my children… but again, I’ll share those thoughts another time.

Then it wasn’t until I left Harris Methodist after completing the Induction Chemotherapy—32 days (in REMISSION!) and was home for a few days, my mind starting to come out of this “medicated head fog” that I read this blog for the first time. I was learning about my own treatment, the ups and downs, and began to understand and learn about AML, but to learn about the overwhelming love and support that was given on my behalf and my family—it was truly humbling. Another thought that I will share later—CHARITY- “the pure love of Jesus Christ” (J0hn 13:34-35).

I feel like there is so much to say. And yet again, TIME is passing and sleep medications are beginning to do their job.

I don’t suppose there was any order to my rambling tonight. Perhaps even a bit confusing. “What exactly is Courtney trying to say?!” Making some of you wonder exactly what kind of drugs the doctors have me on! Only the best!

I promise my postings will somehow unfold in a way that express what my heart has wanted to share with all of you for so long. And if I am not able to find the right words, Todd is right by my side! With love, good night!

D+43 - A good turn around

2008-01-24T22:25:00.000-08:00

"What a difference a week makes." There have been so many times we could say that these past four months, with all the ups and downs. Unfortunately, a good portion of them have been for the worse. I so much prefer saying it after an upswing than down. This time last week Courtney was in the middle of her four night stay in the hospital. She was feeling pretty sore and achy, and still battling frequent nausea. Last Thursday night she was just receiving her last bag of Foscarnet, and was being administered about three other medications via her catheter. Flash forward to one week later and she’s in her own home, in her own bed, not hooked up to any IV bags, and more than five days removed from her last serious bout of nausea.

It’s been a really good week for Courtney. Her appetite is back full force, the nausea is all but gone, and the abdominal pain is but a distant memory. She’s had two visits to the clinic this week, Monday and today. Both of these visits were long, but rewarding as we came away with good news both times.

Monday’s visit was fairly routine, as they checked her blood levels and did a quick physical. All of her counts looked really good, and there really wasn’t much to report. The past few days she’s been up and about a little more each day. Little by little she’s been trying to do the things that she considers “normal,” i.e. go upstairs, play with the kids, help with homework, do some laundry, etc. Her biggest complaint has been fatigue and muscle soreness – no doubt caused by the fact that she’s just beginning to use muscles again that have been used sparingly the past few months. She’s been doing a good job of balancing the effort to regain her strength with getting the rest she needs to recover from those efforts.

Today’s visit went even better than Monday’s. We had a good visit with Dr. V. who was genuinely excited with Courtney’s progress and overall well-being. It had been a while since she saw Courtney smiling and not feeling miserable. She was also very pleased with the blood results, as they continue to hold steady. The best part of the day came when we asked her how many more bone marrow biopsies Courtney would need during this next year. The answer was two: one around D+100 and one more in a year! That news really made Courtney smile. We were thinking the next one would come much sooner than that and they would be much more frequent.

Dr. V also said Courtney was doing so well that she wouldn’t need to see her again until next week. Yah!! The visits aren’t bad, and they’ve been, for the most part, very useful, but they’re usually so long and somewhat tiring. So, she’s more than happy do go a few days without going to the clinic or seeing any doctors – especially if she’s feeling well enough that she doesn’t need to see any doctors. It’s just one more happy milestone that indicates she’s really on the path to recovery. A week ago this fact seemed doubtful. Now we truly know how far she’s come, and we’re grateful that it only took a week for her to turn around so dramatically.

D + 38 – Home Again

2008-01-19T22:55:00.000-08:00

When Tuesday’s clinic visit came, we figured it would be a relatively short visit. That turned into what we thought would be an overnight stay at the hospital so they could run a couple of tests the next day. Then one night turned into two which quickly became three. Finally, after four nights in the hospital, Courtney is back in her own bed.

This was a long week made longer with uncertainty. Each day brought with it more questions that seemed to take forever to get answered. When is the EGD? When do we get results? Can Courtney go home? What’s causing the nausea? Will there be more tests? Can Courtney go home tomorrow? Is that a new medication? What are we waiting for? When can we talk to a doctor? Why are we here?

Eventually most of the questions were answered, and Courtney’s condition slowly improved. Her blood counts took a turn for the better. The pain she had been feeling just below her ribs subsided. And, the nausea, that had been so persistently bothering her for the past week, finally relented today.

Here’s a quick recap of what transpired since Wednesday:

Thursday – Courtney finally underwent the EGD (For those of you wonder how to pronounce “Esophagogastroduodenoscopy”, here’s the pronunciation - ĕ-sof′ă-gō-gas′trō-dū′ō-den-os′kŏ-pē). Other than the fact that Courtney’s resistance to Versed caused her to fight the nurses as they forced the scope down her throat, the procedure went well. The doctor’s report actually includes the statement, “After adequate conscious sedation was achieved, the patient was intubated and the scope advanced under direct visualization to the third part of duodenum.” I’m not sure how they define “adequate.” I suppose they thought Courtney wouldn’t remember it. I think that’s usually the case with the “conscious sedation.” Anyway, they got the information they were looking for, and in the process took some nice pictures of Courtney’s innards. (Not many people can say they’ve seen their duodenum.) The verdict – Courtney has gastric paresis and acute gastritis. Given the recent chemotherapy and all the meds she’s been taken, neither of these was a surprise. In the process, they took a couple of biopsies. These results won’t be back for a few days.

After the procedure, Dr. V. started Courtney on the steroid Prednisone. This is used to counteract the GVHD, if any, and hopefully help her feel much better. Unfortunately, it has the unpleasant side effect of causing restlessness, and Courtney didn’t sleep well Thursday night.

Friday – First official day to be off the Foscarnet. Thank goodness. Hopefully she won’t have to revisit this drug. And hopefully we see her condition steadily improve. Basically Friday was spent weaning Courtney off of the IV meds they had been giving her since Tuesday. By “weaning” I mean switching to an oral form. They want to make sure she keeps them all down before sending her home. Right now, their biggest concern is that she consistently gets her antibiotics and Prograff (anti-GVHD drug). They really don’t want these to come back up or for her not to take them because she feels too nauseous. So, one more night in the hospital. And it was NOT a fun night.

The night was long because she had a bad reaction to another drug. Add Meclizine to the list. Dr. V. decided to try it to help her nausea since the scopalomine patch didn't seem to be helping that much. She took her first dose yesterday afternoon without problems. However, her second dose, given around midnight last night, made her react much the same way compazine did back in October. Skin crawling, muscle twitching, painful, irritating, etc. Unfortunately, the nurse had to page the doctor to get permission to give her benedryl. So, it took a little while to get and took a while longer for it to work. Since that was the only new medication given, and since it's kinda in the same family as compazine, we were fairly confident that meclizine was the culprit. So, we told her nurse to skip the next dose, due at 6:00 AM, until we could discuss it with Dr. V. Well, at 6:00 AM the nurse came in, nudged Courtney awake just enough so she could take it. Courtney, having only been asleep for barely three hours, took it without really knowing what it was. And, sure enough within an hour, was feeling the effects again. Fortunately, Dr. V was at the hospital by then, and Courtney was able to quickly get the benedryl and dilodid via IV. That helped alleviate the side effects much faster than last night. So, no more meclizine.

Dr. V gave Courtney the go ahead to go home if she felt up to it. After sleeping for a few more hours, she was feeling much better and very much wanted to go home and see the kids again. So we packed up and headed home. Now, after a good evening of spending some time with the kids, eating a couple of small meals without getting nauseous, she’s sleeping soundly in her own bed once again. Quite the contrast to last night.

One more thing. Dr. V came in yesterday evening and told us the genetic tests came back. The report states that her cells were >95% donor (Tracy) cells!! >95% is the highest it can be reported. And Dr. V said basically it's 100%. She also said, "No recipient (Courtney) DNA detected." Which means no leukemia, and less likely that it'll reappear!! Very good and happy news. Courtney couldn't wait to call Tracy, but when we did get her on the phone, Court was too emotional to talk.

It's nice having good news once again. These happy milestones help soooo much, especially after a very long and crummy week.

Day + 35 - Anything but routine

2008-01-16T21:57:00.000-08:00

Yesterday’s short visit to the clinic has turned into a rather long trip from home. At least for Courtney anyway. After checking her lab results and seeing her platelets drop significantly, and seeing that her nausea was getting worse instead of better, they decided to admit her back into the hospital to run some tests. Dr. V said there was a chance that her symptoms and lab results could be due to Graft Versus Host Disease (GVHD). So, they wanted her to go to the hospital for a CT scan of her upper abdomen, where she’s been feeling pain the past couple of weeks, and an endoscopy to check her upper GI tract for lesions and to perform a biopsy to check for GVHD.

Her latests lab results:

Date	Platelets	RBC	HGB	HCT	WBC
1/10	65000	3.22	10.4	29.5	5.0
1/15	25000	2.58	8.2	23.8	5.5
1/16	23000	2.18	6.9	20.4	3.7

This morning Dr. V came in and shed some light on her suspicions. Apparently, the GVHD manifests itself in many ways and could be causing her to feel the way she’s been feeling lately – more nauseous and fatigued than before. She also said the drop in lab counts and the increase in nausea could be due to the Foscarnet. I asked why, if she’s been on the Foscarnet since she left the hospital, would her counts suddenly drop. She said that it can have a cumulative affect and cause symptoms and side effects after a couple weeks of being on the medication.

Her plan was to have the Esophagogastroduodenoscopy (EGD) (officially the longest word I’ve ever written or used), today and start her on a relatively low dose of steroid (prednisone) pending the results of GVHD that could take 2-3 days. Unfortunately, the doctor overseeing the procedure didn’t want to do it because her hemoglobin was too low. He said she needed to get blood beforehand. Even more unfortunate was the fact that there was no way to get blood in time to still be able to get the EGD done today. The GI doctor who visited her this morning said if it was him he would have done it today regardless. This is really frustrating because Dr. V. said that she expects Courtney to be feeling better almost immediately after getting the steroid. But now we have to wait another day before starting it.

So, after a long morning of waiting to find out when the EGD would be (she couldn’t eat until after the procedure) we finally got word that it wouldn’t actually be done today and she could eat. The rest of the day went pretty smooth as she had a nice long visit with her friend, Melissa, and had a routine CT scan. No results yet.

She did finally get her two units of blood this evening, so all should be clear for the EGD tomorrow morning. We’re hoping that if everything is good tomorrow and she’s feeling up to it, that Courtney could go back home tomorrow. Otherwise, she may be here for one more night.

We’re just hoping and praying that they find some answers and get her turned around in the right direction towards recovery. She’s really tired of feeling nausea and pain, especially when they prevent her from getting out of bed. So, while the visit to the doctor didn’t quite go as expected, we know that she’s back in the hospital for a good reason – to help get her back to her routine as quickly as possible.

Oh, one more thing. Aidan made a dramatic recovery at about 9:00 yesterday morning. When we left for the clinic at 8:45 he still felt warm and looked a little lethargic. Half way to the clinic my mom called to tell us that he was downstairs (he hadn't come down once on Monday) begging for food and acting as if he'd never been sick at all. He's been himself ever since. Thanks again for the prayers.

D + 33

2008-01-14T22:11:00.000-08:00

I don't do this often enough, but thank you all for your comments and kind messages these past few months. Gosh, I can't believe it's been "months". That's so weird to say that. Anyway, your thoughts and well wishes really mean a lot to us. And even if you haven't left a message, thank you for taking the time to follow along. Your thoughts and prayers have given way to extraordinary actions that literally helped to carry us through this ordeal. Thank you!!

Today was mildly better than yesterday. Although it didn’t start out that way. She was debating going to the doctor today, mostly for peace of mind since she still has the same ailments she had on Thursday, but also wanted to get a better dose of anti-nausea medicine in the form of IV fenergan. Really not wanting to make the trek to the clinic, knowing that it would likely be a four hour ordeal including driving time, and knowing we had to return tomorrow morning no matter what, we asked if it would be possible for the home health nurse to come administer the fenergan. Laura, Dr. V’s PA, hesitated, thinking that it would take more than a day to get approval and get a nurse out to our home. We asked her to at least try, and within a couple of hours a man was delivering the supplies to our home and a nurse arrived shortly thereafter to give Courtney the medicine. It seemed to help quite a bit, though not completely. She was able to keep her medicine down and eat a little this evening. The home health people, Option Care, have been really good about coming when we’ve needed them. This is at least the third time that they’ve come through when the doctors and nurses doubted they would. We’ll have to keep it in mind the next time Courtney just needs a little extra meds to get her through the day more comfortably. It’s always nice to have options that don’t include fighting traffic or spending time in uncomfortable waiting rooms. Nothing beats the comfort of your own bed. And we especially like ours.

Tomorrow Courtney has an appointment at the BMT. It’s a routine visit, but we’re hoping to have some results from Thursday’s biopsy. Tune in tomorrow to find out.

Adding to today’s woes, Aidan was also sick today. Our normally active and precocious two year old was a miserable lump on a couch today. He seemingly had his own bouts of nausea periodically throughout the day, and spiked a pretty high fever this afternoon. He’s been sleeping soundly the past five hours, so hopefully he’ll wake up to a much better day.

If you should add Aidan to your prayers, please also add a little friend of ours, Alexa Aigner. She’s three years old and has been fighting her own cancer for over two years now. She’s had her own down days lately, and could use a little boost. Click on her name to read about her amazing and painful journey eloquently related by her mother.

And all things, whatsoever ye shall ask in prayer, believing, ye shall receive.

- Matthew 21: 22

D + 32 - Hoping for better days ahead

2008-01-13T23:33:00.000-08:00

The past three days have not been “good” ones for Courtney. In fact, they’ve been downright crummy. I wouldn’t say she’s taken a step back in terms of her progress, but her overall energy level and physical comfort have definitely been on the down side.

Last Thursday’s biopsy went pretty well. The drugs (Versed) still didn’t knock out Courtney as much as she would have liked, but they gave her as much as they could. Apparently she’s really tolerant to the narcotic medications. The nurse who administered the drug said the amount he gave her typically knocks out large men.

Since the middle of last weeks she’s also been feeling some pain under her rib cage that makes it a little hard for her to take deep breaths. They took a chest x-ray just to be safe, and that came back clear. They’re not sure what’s causing the pain, but think it might be due to tension and stress. They advised her to take some pain meds to control it and to call if it got worse.

The main purpose of the biopsy was to check for cancer. Those results should be back within a couple of days. The genetic tests to determine whose cells are multiplying in her bone marrow, hers or Tracy’s, will take up to a week. Again, the goal is to have it all be Tracy’s cells, to mitigate the risk of Leukemic cells returning.

Since Thursday, the pain under her ribs hasn’t improved at all, and her nausea has kept her in bed for the better part of each day. We just realized that it’s been a couple of days since she stopped using a sopolamine patch (the kind you put behind your ear to keep from hurling when you go deep sea fishing). She had been using it since before she left the hospital. Chances are, it was still helping to keep the nausea at bay, so she reapplied one this evening. Hopefully that will help, and tomorrow will be a better day.

We still really believe that most of her discomfort and ill feelings are stemming from the Foscarnet. The last dose of that will be this coming Thursday. And we’re still hoping that that will mark a day when we will really start to see her feeling better both physically and emotionally. The physical discomforts, especially the nausea, really drain her energy and take a toll on her emotionally. Fortunately, her ailments have been discomforts and nothing more. Meaning that she hasn’t had any infections to deal with nor have we seen any outward signs of graft versus host disease (GVHD). Also, her blood counts, especially her WBC’s and neutrophils continue to look really good.

So, we’re happy to see her progress towards that 100th day since the transplant, And while we know that we will likely see her go up and down with regards to how she feels, we wish and pray that she puts these bad days become less frequent and less miserable and soon become a thing of the past.

D + 27 - Progress - slow but steady

2008-01-08T22:03:00.000-08:00

Since leaving the hospital seven days ago, Courtney has steadily gotten better. The stomach pains and nausea have become less frequent and less intense. Her appetite has improved tremendously. And her energy level, while still below a 5 on a scale of 1 to 10, has definitely improved as well.

Last Friday we received great news at the BMT clinic. Courtney's CMV results had come back negative!! This meant that her six hour Foscarnet infusion could be reduced from a twice daily to once daily ordeal. That has been a life saver! It also meant that we could hope for the side effects of the Foscarnet to decrease, which I think we have. And, hopefully, after she's done with the Foscarnet in one more week, most of her problems with appetite and nausea will diminish altogether.

Her CBC's continue to be great! Last Friday, she did get a shot of Procrit because her hemoglobin was a little low, but she hasn't needed any infusions of blood products since leaving the hospital. The interesting thing about the Procrit is that they gave it to her within minutes, unlike the days it took for her to receive the first dose.

Courtney's next BMT visit will be this Thursday and includes a bone marrow biopsy. Not fun, but necessary to chart the progress of the transplant. They will be determining what percent of Courtney's bone marrow is now her sister Tracy's. From what we understand, the less of Courtney's marrow that remains, the better, because it was Courtney's bone marrow that was the source of the leukemia.

So, for now we're waiting. Waiting for the bone marrow biopsy and results. Waiting for the day that Courtney will no longer need to receive Foscarnet. Waiting for Courtney's overall well being to improve so she can start doing what she would like to be doing. Waiting for the D+100 milestone. Waiting for the Neostar to be removed from her chest. And waiting for Courtney's hair to start growing back so she can feel more like her old self again. While we wish these would all come sooner than later, we know that there isn't anything we can do to rush the process. So, we continue to take each day as they come, moving steadily but surely to that not so distant day when we'll be able to use the word, "cured."

D+21 - Home sweet home...again.

2008-01-02T22:54:00.000-08:00

After 29 days in the hospital and 21 days since the stem cell transplant, Courtney returned home!! It was a long day of receiving medications, instructions, paperwork, more medications and more instructions. We finally walked out the doors at 6:30 and returned home just in time to hang out with the kids before putting them in bed.

I have to admit that, after seeing Courtney spend so much of the past four days feeling nauteous, I was rather nervous about the bumpy car ride home. We sailed home without so much as a hiccup. The first thing she wanted to do when we walked in the house was go upstairs to see the kids. I thought 'no way.' Not that I doubt her abilities, but upon returning home after her first month in the hospital in October she couldn't even make it one step. Plus she was kine of wobbly from the medication. But she wanted to go to them. And go she did. Again without so much as a hiccup.

Shortly after putting the kids to bed, the home health nurse came by to bring us the Foscarnet and saline flushes for her twice daily infusions. She showed us how to do it, but there wasn't really much to show since it was pretty much the same routine with the Mycamine that she was on after consolidation chemotherapy. It's pretty simple, but it will take some calculating to deliver the solutions over the correct amount of time as they're gravity fed through a flow valve instead of through a pump like at the hospital. The first bag started shortly after 9:00 PM and was supposed to take 2 hours but took 2 and a half instead. The Foscarnet should be done just before 2:00 AM and then it's two more hours of saline. It's kind of like bringing home a newborn baby that has to be fed and changed every couple of hours. Hopefully will get this on a better schedule and, hopefully we'll get this down to just once a day instead of two.

I'm not sure if being home has anything to do with it, but Courtney's had her best night by far since the past week. Not only did she eat a chicken pot pie (more than she had at any one time for a few days), but she didn’t experience any of the overwhelming nausea that had plagued her invariably the past week. Now she's sleeping soundly in her own bed for the first time in almost a month. Nothing beats being in your own home, in your own bed. Home truly is SWEET!!

D + 20 - A New Year, but not quite home yet

2008-01-01T09:44:00.001-08:00

Unfortunately our year isn't quite starting off how we had hoped. Courtney is still in the hospital battling low-grade fevers and pretty bad nausea that hits her about twice a day. However, we still are looking forward to having a great 2008.

During the early morning hours of Monday, just hours from being discharged, Courtney developed a fever of 100.7. A fever over 100.5 dictates that they draw blood to culture for infection, perform chest x-rays and start her on a couple of IV antibiotics. Then they like to keep her for another 48 hours to monitor and wait for the blood cultures to come back negative so they can discontinue the antibiotics. So, here we are, hoping that tomorrow Courtney will actually get to go home.

The CMV results also came back positive, albeit with only a few cells showing up. So, while it’s good that the counts dropped considerably, they don’t cut back on the Foscarnet until they see zero CMV. This is unfortunate since it seems likely that the Foscarnet is one of the drugs contributing to the nausea.

So, apart from the CMV, and the nausea, and the fevers, and the fact that she’s still in the hospital, the transplant has been a great success with the stem cells engrafting “wonderfully.” All of her blood counts continue to look really good, and she hasn’t had to receive any transfusions in almost a week. With her WBC’s within normal, her risk of infection is greatly reduced. However, they’re giving her drugs including Prograff that essentially turn off her immune system to prevent graft versus host disease. This makes her very susceptible to viruses.

One more day. One more night. And then Courtney’s home, back in her own bed. While this seems likely to be the case, I’m not making any promises.

D+17 - Almost home

2007-12-29T23:30:00.000-08:00

Christmas Eve and Christmas night were finally fever free nights, and on the 26th, Courtney was feeling so well that the doctors actually told her she could probably go home on Friday, December 28th. Needless to say, that didn’t happen. Here it is Saturday night and she’s still here in the hospital.

Early Wednesday morning Courtney’s fevers came back. Though the fevers didn’t spike as high as before, they lasted about 48 hours and delayed her discharge. The doctors wanted her fever free for at least 48 hours before sending her home. In the meantime they ran more tests to try to determine the source of her fever and rule out an infection of any kind. As of now all tests have come back negative and her fevers have since subsided and we still don’t know what was causing them.

The only reason Courtney is still in the hospital now is because of something that crept up earlier this week. Prior to the transplant Courtney tested positive for having “been exposed” to cytomegalovirus (CMV). Apparently this is a fact held true by about 80% of the adult population. This virus lays dormant in most people until their immune system is suppressed for whatever reason. Without treatment in can be life threatening, which is why the test for it in the first place. After the transplant they check her blood every 72 hours to see if the CMV is reactivating. Their tests can show that the virus is active before it begins to have any effects on the body. So, Courtney’s tests showed that the virus indeed had started to multiply and they began the IV administration of Foscarnet.

The regimen for Foscarnet is infusion of saline for 1 to 2 hours, infusion of Foscarnet for two hours and more saline for 1 to 2 hours. So, it’s about a six hour process and needs to be done twice a day until the CMV tests come back negative. After a negative test they continue to give her Foscarnet once a day until she completes three weeks of receiving the drug. While all of this can be done at home with the help of an IV pump, they wanted to wait until her latest CMV tests came back, hoping they could send her home with a once-a-day dose. This would make managing routine trips to the clinic a lot easier. I’m not sure how well IV pumps and poles travel. It would be cumbersome to say the least.

So, all continues to go relatively well with the transplant. The stems cells have done their thing wonderfully. And Courtney has fought through some crummy side effects valiantly. Fortunately, most of the unpleasantries have subsided including fever, rash, headaches, nausea and painful tingling. She's still fighting through a lack of appetite, some occasional nausea and fatigue. Nevertheless, she's ready to go home, spend time with the children and sleep in her own bed, uninterrupted through the night.

As it stands now, the plan is for Courtney to go home Monday, December 31st. That would be a tremendous moral victory for Courtney – to keep the hospital stays confined to 2007.

D + 12 - Christmas Eve gifts

2007-12-24T23:24:00.000-08:00

Today, on Christmas Eve, we received news about as good as we could have hoped for. No, Courtney is not going home yet, but she is one step closer. Her neutrophil count went for around 50 on Saturday to 500 on Sunday and then to 1000 today. It’s a sure sign that the transplanted stem cells have engrafted and her bone marrow is beginning to function as it’s supposed to. Hooray for Tracy’s cells!!

So, now we just have to wait for Courtney to be fever free and GVHD (Graft Versus Host Diesease) free so she can go home. She’s been battling fevers for the past four days. They come and go fairly quickly and get almost as high as 104. Thankfully, the doctors have found no detectable signs of infection or GVHD. They do everything they can to rule out infection, including testing her blood for bacteria and doing chest x-rays. They aren’t exactly sure what’s causing the fevers, but believe it may be part of the engraftment.

Other than the fevers and occasional digestive discomfort, Courtney is feeling pretty well. In fact, tonight she’s gone the longest without a fever since Saturday. So, hopefully, that’s an indication that they’re going away. We need them to be gone completely for her to be able to go home. But, if Courtney continues to progress the way she’s been, we should have her home by the beginning of next week.

The best Christmas Eve gift was being able to reunite Courtney with the kids after being apart for more than two weeks. It was a short but sweet visit. We were all able to open Christmas pajamas that Courtney’s mom buys every year. It was cute seeing the kids put them on and wear them home from the hospital. It was awesome to be able to have some time together as a complete family at such a special time. Prayers were definitely fulfilled on our behalf today making for wonderful Christmas Eve gifts.

D + 9 - Hanging tough

2007-12-21T23:03:00.001-08:00

It’s hard to believe that it’s already been nine days since the transplant. And it’s been three months since the diagnosis! They’ve obviously been the three worst months of our lives, and yet we have many great memories that we will one day cherish…when this is all over. Time is an interesting phenomenon – on the one hand is seems to go by excruciatingly slow, but when it’s in the past you wonder where it’s gone.

During the past five days Courtney has been coping with medication, side effects and neurtropenia (lack of white blood cells, specifically neutrophils). The rash finally subsided after about five days and some disagreement with the doctors as to which medication actually caused the rash. This is important to know, as Courtney would like to do everything possible to avoid it in the future. Sometimes, however, it’s difficult to determine which medication is causing which side effect when they give her five or more at a time. And when ALL the medications list many of the same side effects: headache, nausea, fatigue, rash, dizziness, etc.

Besides having to deal with all of the aforementioned side effects during the past week, Courtney has also head to cope with a sore throat, fevers, and painful tingling in her extremities. The biggest concern for the doctors is the fever. Whenever Courtney’s temperature is above 100.7, they take precautions to rule out infection. These precautions include blood culture (checking for yeast or bacteria), chest x-ray (checking for fluid build up) and changing her antibiotics. So far, everything has tested negative (that’s good). Idiopathic fevers during neutropenia are somewhat common and not too threatening. Things become more disconcerting when the doctors can actually find a source of a fever. Still, we’d rather that Courtney not have fevers at all.

So, after a few weeks with relatively few unpleasantries, Courtney is back to facing the ugly side of cancer and treatment. So far, thankfully, things have not gotten nearly as bad as they did during her first round of chemotherapy in October. We’re still holding out hope that that was the worst of it. Now she’s just fighting through this phase and waiting for her bone marrow to come back from vacation and go back to work. Doctor V said we shouldn’t really expect to see any activity until the 26th or later.

So, ten more days. That’s our goal for Courtney – to be well enough to go home by the 31st. What better way to ring in the new year!

D + 4 - A Friendly Visit

2007-12-16T23:13:00.000-08:00

So far, everything is going as planned, with the exception of a horrible rash caused by one of Courtney’s antibacterial medication. She’s been dealing with it since Thursday, and if not for that, would probably be feeling quite well. She is, in fact, feeling pretty good. They’ve been doing a good job of staying ahead of the nausea and she has yet to suffer any bad side effects from the chemotherapy.

As for the chemotherapy, even though she finished the last dose a week ago, we’re still seeing the effects of it. Her red blood cells, white blood cells and platelets have been steadily dropping this week. Courtney is now what’s considered neutropenic and extremely vulnerable to infections. Now we wait two to four weeks for her counts to get back to a safe range before she can go home. However, it’s normally 6 to 12 months before all of her counts return to normal. In case you're interested, here are her lab results so far:

Day		WBC	Neutrophils	RBC	Platelets	Hematocrit	Comments
Normal Range		4.1 – 10.9	2000 – 5000	4.00 – 5.20	140 – 440	37.0 – 46.0
Dec 04	D - 8	7.6	5900		243	32.2
Dec 06	D - 6	9.5	7900	2.96	201	28.1
Dec 07	D - 5	10.4	8600	3.31	197	31.5
Dec 08	D - 4	8.9		3.40	190	32.6
Dec 09	D - 3	6.7	5200	3.16	172	30.1
Dec 10	D - 2	4.2	3300	3.35	158	31.9
Dec 11	D - 1	3.7		3.18	170	30.2
Dec 12	D - 0	2.8	2700	2.95	154	28.1	Transplant
Dec 13	D + 1	1.5	1400	2.52	132	24.0
Dec 14	D + 2	1.1	1000	2.26	92	21.2	Got blood.
Dec 15	D + 3	0.6	600	2.93	62	26.9
Dec 16	D + 4	0.3	200	3.12	48	28.5

Officially, she can’t see the kids until it’s just about time to go home. They don’t allow kids past a set of double doors to her hallway, and while neutropenic, they don’t allow Courtney to exit the double doors. It’s been over a week that she last saw the kids and it will likely be at least a couple of more weeks before she will get to see them again. : ( Unfortunately, they’ve all been fighting colds, so even if they were allowed, they couldn’t visit her anyway.

The best part of the weekend was that Courtney was visited by her best friend, Amber, from Utah who she hadn’t seen since we moved in 2002. Amber was able to stay with her Friday and Saturday night providing Courtney with much needed laughter and fun. Not quite the slumber parties of old, but I think they still had a good time considering where they were and why they were there. Thank you, Amber.

Though we aren’t quite sure how long Courtney will be in the hospital, we like to think that we’re just about halfway home. What we’re really hoping for is that her counts rebound quickly and she’s home before next year!

D 0 – Out with the old, in with the new

2007-12-13T00:18:00.000-08:00

After a relatively good night of rest, Courtney woke just in time to greet the girl from Carter Blood bank who arrived just after 10:00 AM with a bag of stem cells. It basically looked like a bag of blood. The bag was hung from the IV pole with care, and a long tube connected to the bag was connected to Courtney’s Neostar catheter. At 10:30 AM the tube was unclamped and the stem cell transplant began with gravity doing the work.

There wasn’t much to it, however it was quite an emotional moment. These were the cells intended to help ensure a long life for Courtney.

Tracy arrived just a few minutes later, after having the straw removed from her neck. She and Courtney were able to share some time together, cherishing a new beginning.

Today marks the day that Courtney’s blood will gradually fade away as Tracy’s stem cells slowly take root in Courtney’s bone marrow and begin the process of making more blood – blood whose DNA matches Tracy’s blood. Blood that is leukemia free.

At 11:45 the bag was empty and the transplant was done. Just like that. And now we wait. We wait for Tracy’s stem cells to make their way to the bone marrow where they will mature, engraft and seed the process of producing her own cells. In case you were wondering just how the stems cells find their way to the marrow and do what they’re supposed to do, no one knows.

Currently, Courtney’s white and red blood cells are dropping just like they did during the last round of chemotherapy. This is due to the fact that her bone marrow, where the cells are produced, has essentially been shut down by last week’s chemo drugs. In about five days or so, we expect to see the last of her remaining white blood cells die and her counts hit zero. By this time her red blood cell and platelets will also be significantly depleted and she may need transfusions. We then will wait for another ten to fourteen days for the bone marrow to start making enough cells to be released into the blood stream and her counts to return to normal.

Courtney will go home once her white cell counts are back to normal and she isn’t experiencing complications such as graft versus host disease (GVHD). That’s something we don’t want. So now we pray that the stems cells do what they are supposed to do and kick start her bone marrow. Sometimes they don’t. And we pray that her recovery is quick and as painless as possible. And we pray that she doesn’t have to deal with GVHD or serious infections. And we pray that Courtney continues to have the courage and patience to endure these next few weeks and months.

Thank you for your thoughts and prayers. Each and everyone one of you is in ours!

D -1 Collection Day

2007-12-11T23:44:00.000-08:00

2.1 million stems cells were needed from Tracy. The goal, however, was to collect 5 million. There’s a chance that the first round of cells don’t do what they’re supposed to, so they like to have a second dose to give. For Courtney, they’ll have almost four doses to give, as they were able to harvest 8 million stem cells from Tracy. Now that’s what you call generosity.

Needless to say, the day went quite well. Courtney experience a little more nausea, but other than that she had a good day. Tracy’s was a little rougher. She got two Neupogen shots to the gut, and then spent over five hours hooked up to the apheresis machine watching her blood leave her body out one tube and return through another, while leaving behind the valuable stem cells. It’s quite an amazing process. While not nearly as painful as the old way of extracting bone marrow, it’s not an altogether pleasant process either. The Neupogen causes a flu-like achiness, and, in Tracy’s case, caused considerable pain in bones. The other main discomfort that she experienced was numbness of her lips and fingers. This is caused by a reduction of calcium in her blood. They mix her blood with an anticoagulant as it leaves her body (for obvious reasons) and the anti-coagulant happens to bind to calcium. To offset that side-effect they gave her some calcium through her IV and instructed to try to consume foods high in calcium for the next couple of days.

How do you pay someone for the gift of life, especially when that life is as priceless as Courtney’s? I’m sure Tracy feels that she’s only doing what any good sister would do, but that doesn’t lessen the value of what she’s done. The truth is, there is no way to compensate Tracy enough for her gift to Courtney. Fortunately, that’s the value of love – it doesn’t demand payment.

Thank you Tracy.

"And above all these things put on charity, which is the bond of perfectness." - Col. 3: 14

D -2 End of the chemotherapy

2007-12-10T22:23:00.000-08:00

D -2. That’s how they label the doors in the BMT unit of the hospital to signify where each patient is with regards to the transplant. D -1 tomorrow and then D 0, transplant day, on Wednesday. The day after will be D+1.

Today went much like yesterday for Courtney, but worse. She experienced quite a bit more nausea after being given her second and final dose of cytoxan. Fortunately one of the nurses found a drug combination that seems to have helped control the nausea and allow Courtney to actually eat a bit for dinner. When I arrived this evening, she was already quite relaxed and resting well. Right now it kinda seems like War of the Drugs. Cytoxan = bad vs. Morphine = good. Although, as much as Cytoxan is kicking Courtney’s butt, we sorta have to root for it, since it’s a key element to the transplant, and ultimately helping to cure Courtney.

As bad as Courtney’s day was, Tracy’s was seemingly worse. She went in this morning to have the Quinton catheter surgically placed in her neck, where it will stay for the next two days. This is basically like a large soda straw inserted into her jugular. Not a comfortable procedure by any means, but rather simple and routine. That is, until you have an allergic reaction to one of the drugs. Apparently, things got rather dicey in the OR, when one of the drugs sent her into antiphylactic shock and temporarily made breathing quite difficult. The doctors responded quickly and got things under control and were able to finish the procedure without further complications. Tracy’s day wasn’t over, as she still had to go back to the BMT clinic today for another round of Neupogen shots.

While tomorrow should be a quiet one for Courtney (they refer to it as her “day off”) because she’s not getting any heavy hitting drugs for the first day since admission, it’s the biggest day yet for Tracy. Tomorrow is “harvest” day. By a process called apheresis, Tracy’s stem cells, which the Nuepogen is causing to be produced in extra quantities, will be harvested. Apheresis is the process used to separate out a specific part of the blood such as stem cells for transplantation. Tracy will be connected to a machine via the Quinton catheter. The blood is removed through one branch of the catheter and run through the machine which separates the stem cells. The remaining parts of the blood are circulated back to Tracy through the other branch of the catheter. The process is expected to take 7 to 8 hours. If they don’t get enough stem cells, an amount predetermined by Courtney’s medical team, Tracy will have to go back for another day of harvesting. Otherwise she is done and they can remove the straw from her neck.

At the end of the day it’s still so hard to believe that we’re actually going through all of this. It’s still hard to say the word cancer and to accept that it’s directly affected our lives as it has so many others. And while it’s hard to believe that Courtney has had to endure chemotherapy three times in the past three months, it’s nice to know that that part of her life is now officially in the past.

D – 3 and counting until transplant

2007-12-09T22:47:00.000-08:00

Sorry, I didn’t mean to let this much time pass before updating the blog. But here’s what’s happened the past five days.

As I mentioned, last Tuesday, Courtney was admitted to Zale-Lipshy hospital for the bone marrow, or more precisely, the stem cell transplant. They admit her 8 days prior to the actual transplant so the can administer the chemotherapy that prepares her body for the transplant. Tuesday night they started her on her first chemo called Busulfan. They gave it to her for four days, four times a day for a total of 16 doses. Each dose, that was administered through her neostar catheter, took two hours. During this time, she couldn’t leave the room, so she didn’t risk spreading the toxic chemicals around the hospital.

She tolerated Busulfan fairly well, with relative mild side effects. Her worst experience was an itchy rash that was most likely caused by a steroid they gave her along with the Busulfan. To counteract the rash, the gave her an antihistamine. They thought about giving her benedryll, but since it was the middle of the day and she didn’t want to feel too drowsy, they gave her something else. Ironically, she had an allergic reaction to the other drug and they ended up having to give her benedryl anyway. She also had some mild intestinal discomfort the past few days.

We were able to squeeze in a few visits with the kids Tuesday evening, Thursday evening and Saturday morning. They aren’t allowed to go back to her room, but when’s she feeling up to it and not hooked up to any toxic chemicals, Courtney can leave the confines of her room and hallway and visit with the kids in a “family room” on her floor. They’ve been coping extremely well with their mother being in the hospital so much these past couple of months. It’s amazing how resilient and level headed they all are. It continues to be a huge blessing to have them so well adjusted to such a difficult circumstance.

Courtney’s sister, Tracy, who had been staying with her at night up until Saturday night, received her first of four rounds of Neupogen injections Saturday morning. She got her second dose this morning and so far seems to be experiencing about what the doctors told her to expect – general achiness and discomfort that feels rather flu like. So she could get her rest, I stayed with Court last night and tonight, while my mom has held down the fort with the kids at home and Courtney's mom continues to stay with her during the day.

Courtney received her last dose of Busulfan last night at midnight. I know I’ve brought it up before, but they really don’t seem to value sleep very much in hospitals. For instance, last night Courtney got hooked up to her chemo at 12:00 and then unhooked at 2:00 AM. Three hours later, although it seemed like much less, at 5:00 AM a nurse came in to check her vitals. At 6:00 AM a Fellow came in to check her over. Then 30 minutes later he came back with Dr. V who did the same checks. Another mere 30 minuets passed before her nurse of the day came in to perform the same checks. And he was followed by the breakfast lady 20 minutes later. By now, you pretty much just throw in the towel and give up trying to sleep. It’s just too painful to keep waking up right after falling back to sleep.

At 10:00 AM this morning Courtney received her first of two doses of Cytoxan. Unfortunately this one hasn’t been as nice as the first chemo drug. Within 15 minutes, Courtney’s nose felt irritated, her sinus felt pressure and her head started hurting. Her headache has lasted all day and was ultimately accompanied by bouts of vomiting. This is always demoralizing for Courtney, but we’re reassuring her that this is quite normal and almost expected with this particular drug. Her second and last dose comes tomorrow (Monday) morning, and her nurse indicated that many people tolerate the second dose quite a bit better than the first, but it’s no guarantee. So, she may be in for another long day tomorrow. At least Tuesday will be a day of rest, with NO chemo drugs.

Actually, tomorrow’s dose of Cytoxan will be her last so called chemotherapy forever. I think it may be cause for celebration, but the festivities will have to wait. Maybe we’ll toast the IV bags, since that’s about the only fluid Courtney is able to take in when she’s so nauseous.

Courtney and Tracy continue to plug along doing what they have to do to prepare for the transplant on Wednesday. There’s no turning back now. No, really, legally they can’t. They both signed papers indicating that once the chemotherapy started, they couldn’t stop the procedure from moving forward. Although, I’m not sure what would happen if either tried. Fortunately, that won’t happen, as they both know how important this is and both are anxious to make this whole cancer episode a thing of the past.

T minus 8 days and counting to BMT

2007-12-04T22:39:00.000-08:00

Officially it’s now 8 days before the bone marrow transplant (BMT). The BMT phase really began yesterday. Courtney went to have the PICC line removed from her arm and a new central line (Neostar) placed in her chest. It’s almost identical to the Hickman Catheter that she had during the first round of chemotherapy, except that it’s the right side of her chest and has three lumens (lines or tubes protruding from her chest). The worst part, besides the post-surgery pain, was the fact that a 45 minute procedure had us at the hospital for almost the entire day. We left the house at 9:00 AM, arrived at 9:30; they took her to surgery at 12:30; brought her back at 1:15; and let us leave at 3:00. Kind of a waste of a full day, especially when it’s supposed to be your last day at home before being admitted to the hospital for five weeks. Oh well, at least she had a private room with a TV to wait in, and the procedure went very smooth.

Today was check-in day. They wanted her to arrive by 9:00 AM for admission to the hospital. Unfortunately we had to stop by the BMT clinic (five minutes from the hospital) to sign some consent forms. Courtney had accidentally dated all the forms with 2008 the other day. Legally they needed them to be correct before they would move forward with the transplant. It was an honest mistake that you can blame on “chemobrain” (an actual known condition and not a name that I call Courtney these days – I promise) or blame on nervousness as Courtney was signing papers that say she consents to procedures that could cause adverse effects including death. I think that’s enough to make anyone forget what year it is.

So we arrived at 9:30, thinking that we had just thrown off the 5 week schedule, since they were somewhat adamant that we arrive at 9:00. However, upon checking in and getting comfortable, Courtney mostly hung out and enjoyed time with her sister, Tracy. They didn’t even hook her up to her IV until after 10:00 PM. So, by my estimation, we were more than 12 hours early. Another day that could have been spent at home.

The hardest part of the day was having to say good-bye to Tracy’s children, Alex and Paige. It’s been so much fun having them around. We don’t get to see the much since they’ve been in Italy, so it was really nice getting to spend time with them. Since Tracy will begin receiving her medication in a couple of days, Alex and Paige were escorted by their Aunt Maureen to her home in Pittsburgh. She flew in yesterday just to be able to fly back with them! While it was hard seeing them go with tears in their eyes, it’s so comforting knowing that Tracy’s kids will be well taken care of, or in Maureen’s words, “spoiled rotten” for the next couple of weeks. They deserve to be catered to while their mom is here helping save Courtney’s life. Once again, the love and support from family and friends has been amazing and continues to be so. Thank you, Maureen. It was very nice to finally meet you.

We continue to be amazed at the blessings this trial has brought to our family. While it’s a crummy way to bring them about, it’s given us the opportunity to meet some wonderful people – the staff at the hospitals and clinics have been awesome; it’s given us time to spend with family we wouldn’t normally have had – it’s hard traveling with kids overseas, or anywhere for that matter; it’s helped us to reconnect with old friends and it’s been so much fun catching up with some of them. While at first all of these were silver linings in a very dark cloud (borrowing from an old cliché), they’ve helped to brighten our lives, reducing the cancer to little wisps of clouds that cast the occasional shadow.

One of the hardest parts of moving forward with the transplant is sending Courtney towards something that we know will make her feel worse than she does today. It’s like turning around and heading back into a storm that you just drove out of. Courtney’s been doing so well, with each day literally getting better. You just don’t want to see that trend reversed in any way. Yet, we know that we have to do this to give her the best chance for a cure. And were fortunate to be able to do this now and get it over with, without having to drag it out for months or even years. This time next week we’ll be able to say that Courtney is done with chemotherapy…forever. And that will be the biggest blessing of all.

Gratitude

2007-11-26T22:05:00.000-08:00

Family. This is what it’s all about – to live, learn and grow with one another. It’s what we’re most thankful for. It’s our reason for being. And each day we have together is a gift to cherish.

We really enjoyed the past week with the girls home from school and Courtney home from the hospital – especially since she’s doing so well. It was great being able to spend so much time together. Like all ‘vacations’, we only wish it could have lasted longer.

Last week my Mom left on Tuesday, so I stayed home Wednesday to help Courtney with the kids. I was able to take them to see the movie Enchanted. I have to admit that I was a little apprehensive, but we all loved it. It would have been a lot better if Courtney could have gone with us, but she still has to be cautious about being in public places. Movie theaters don’t seem like the most sanitary places. Anyway, as much as my masculine side hates to admit it, I highly recommend the movie – just not when the Cowboys are playing.

Courtney’s sister, Susan, arrived on Thursday, just in time to go over to our friends’ home for Thanksgiving dinner. After everything we’ve gone through, and after everything they’ve done for us, it was especially meaningful to celebrate Thanksgiving with the Perkins. They are some of the many people that we could never possibly thank enough for what they’ve done to help us during such a difficult time in our lives. We are truly blessed to not only know them, but to be friends with them.

Friday was when the rest of Courtney’s family arrived: her mom and dad, her sister Tracy and two kids, Alex and Paige, from Italy, her sister Kelley (Susan’s twin) with Jimmy, and her brother Chris with his wife Leticia and their precious girls, Lindsay and Christiana. All in all, we had 18 people in our house for three days. With all of Courtney’s family here, we celebrated Thanksgiving again on Saturday. (Isn’t that why the holiday starts on Thursday – so we can celebrate it for four days?) More great food and great company. It was so much fun to hang out and enjoy everyone’s company. It was awesome seeing Courtney doing so well and in such high spirits. Again, you just want times like these to last for more than just a day or two.

The family picture was taken on Friday morning at our friend Becky Eastman’s home. She has her own studio and always does such a great job with our kids. It was the first time since before Aidan was born that we had our family picture professionally taken. Thank you, Becky, for squeezing us in during such a busy time and for doing such a wonderful job! I told you all that Courtney had a beautiful head!!

Today (Monday), Courtney went to the clinic with Tracy after having to say goodbye to Susan. (Goodbye's are always difficult these days.) Courtney and Tracy both had their blood drawn and both received a clean bill of health. Of course, Courtney’s “clean bill” was relative to her post-chemo condition. She’s still slightly anemic, so she finally got her million dollar Procrit injection. All I can say is it better do something. Oh, and thank you insurance company.

So, despite the crappiness of cancer, we really do have a lot to be thankful for: the love and support of friends and family, remission, a bone marrow match in Tracy, relatively good health, our faith that has helped us through this and our children, who lift our spirits more than anything else and give us something great to wake up to each and every day.

Day 22 and final day of Consolidation

2007-11-20T22:47:00.000-08:00

With yesterday’s CBC results it looks as if Courtney’s blood counts are finally starting to return to normal on their own. Her WBC’s are still slightly above normal, due to the lingering effects of the Neulasta. She never did receive Procrit, but with her RBC’s close to normal and her platelets well within normal on their own, she won’t be needing it. (Unfortunately, this validates the insurance company’s propensity to baulk at the approval of this drug. Oh, well).

	Wednesday	Thursday	Monday	Normal Range
WBC	5.1	15.3	17.9	4.1 – 11.1
RBC	2.70	2.62	3.52	4.01 – 5.31
HGB	8.2	8.2	10.8	12.1 – 16.1
Platelets	15	74	202	140 – 440
Neutrophils	3.5	13	NA*	2.0 – 7.5

*Neutrophils and other WBC differentials weren’t available at the time we left the clinic.

So, because her counts looked so good, Dr. V said Courtney didn’t have to return until the 26th. On that day, Tracy will also go to the clinic for her pre-evaluation. If all looks well on that day, the next trip to the medical center will be December 3rd, when Courtney will have the PICC line removed from her arm and a Neostar catheter (similar to the Hickman) placed in her chest. Then on December 4th she’ll be admitted to the hospital for the bone marrow transplant.

Physically and emotionally, Courtney is doing ‘OK’. For the most part, she sailed through this round of chemotherapy with relatively mild side effects. (“relatively” being the key word.) Her main issues are gastrointestinal. These are difficult, if not impossible, to relieve, due to the myriad of possible and likely causes. These are the three most likely culprits of Courtney’s current discomforts: 1) The gastrointestinal toxicity of the chemotherapy drugs. They affect not only the motility of the digestive process, but the taste of food as well. So, even if Courtney wasn’t feeling nauseous or crampy, food generally doesn’t taste or sound as good as usual. 2) The anti-bacterial medication she’s been taken can all have bad side effects relating to the stomach or intestines. At least she doesn’t have to receive the anti-fungal drug (Mycamine) any more. 3) Anxiety. I found the following passage in an old college textbook and have to quote it because it exactly applies to what Courtney’s been increasingly feeling the past few days.
“A substantial proportion of patients develop nausea and vomiting in anticipation of treatment, after one or more courses of chemotherapy have been given. Antiemetic agents do not provide complete protection from anticipatory nausea and vomiting.” - Krause’s Food Nutrition & Diet Therapy

In other words, Courtney is naturally nervous and anxious about the upcoming stem cell transplant and lengthy recovery. So please continue to keep her in your prayers. Pray that she has peace of mind and body, especially during these next couple of weeks as she prepares for the transplant. The better she feels going in, the better she’ll be coming out.

Days 19 - 21 Consolidation - Nice surprises

2007-11-18T21:02:00.000-08:00

It’s been a nice few days off from clinic visits and blood tests – especially since the weather has been so nice. It would have been better if Courtney could actually go out and enjoy it more. We have to limit her exposure to outdoor dust and pollens to avoid allergies that could lead to sinus infections. But still it’s been a blessing to have such beautiful weather in the middle of November.

On Friday, Courtney received a package from Jen Flynn’s 3rd Grade class in Omaha, Nebraska. Jen married my cousin Tom this past August, and Emma, Miranda and Aidan were able to participate in their wedding. It was really cute. Anyway, the package contained precious cards from every kid in the class. So…Thank You to Mrs. Flynn’s 3rd grade class for all of the wonderful thoughts and well wishes. Courtney really enjoyed them and had a huge smile on her face as she read each and every one.

That same night, Courtney also received a call from Amber, her long lost best friend from Utah. They had a lot of catching up to do since it had been over 4 years since they last spoke. Amber always had a way of making Courtney laugh, so she got a big dose of the “best” medicine Friday night. All in all, it was a wonderful way to start the weekend.

Tomorrow morning we go back to the clinic for a check up. Courtney will have her blood tested, and, if needed, will receive blood and/or platelets. That’s pretty much all there is for now. We’re still waiting for her blood results to return to normal to consider this round of chemotherapy officially over. As it is, we have just a little over two weeks to go before Courtney is readmitted to the hospital for the big BMT.

Days 17 and 18 Consolidation – More long days at the BMT clinic

2007-11-15T21:49:00.000-08:00

It’s amazing what a difference a day makes. Yesterday Courtney was feeling much better, with virtually no headaches or nausea. The day started off with a fairly quick and painless visit to a respiratory therapist who performed the PFT (pulmonary function test). Courtney didn’t rank up at the top, but we think she passed. Then, after a quick breakfast at Wendy’s, we headed to the BMT clinic. They were really nice and let us come in two hours before our scheduled appointment. She had her blood drawn and then we waited for about three hours. The wait was for the Procrit shot and platelets. The platelets eventually arrived, but the Procrit didn’t. Apparently it’s a somewhat complicated and potentially lengthy process for the insurance company to pre-approve the Procrit due to it’s expense. She didn’t get it today either.

CBC results for the past two days:

	Wednesday	Thursday	Normal Range
WBC	5.1	15.3	4.1 – 11.1
RBC	2.70	2.62	4.01 – 5.31
HGB	8.2	8.2	12.1 – 16.1
Platelets	15	74	140 – 440
Neutrophils	3.5	13	2.0 – 7.5

So, what do these results tell us? That Neulasta really works. On the 5th, Courtney received an injection of Neulasta that’s supposed to help increase her Neutrophils before her bone marrow is fully functioning again. This is to help avoid the potentially dangerous neutropenic fever. So, in a way, her WBC and neutrophil counts are artificial. The hope is that by the time they drop down, her bone marrow will be back to running normal and her counts will stabilize. Apparently this is the same thing Procrit is supposed to do, except for her RBC’s. At least she can have those infused. Which she did today.

The other thing we learned from the CBC today is that she received a really good dose of platelets yesterday. Usually we see an increase of about 15 to 20 when she receives a bag of platelets. After receiving a bag on Sunday, her count was only 4 on Tuesday (not so good). Then Tuesday’s bag increased her platelets from 4 to 15. And finally yesterday, she got her bag of super platelets and her count increased to 74! So, hopefully she’s good to go for a few days.

It seems like today we got twice as much done in half the amount of time compared to the previous two days. Courtney received two units of blood, had a nice long visit from the Social Worker, and had her bone marrow aspirated. All in a day’s work.

The social worker was nice and asked Courtney a lot of personal questions. Apparently social workers get paid to be nosy and pry. Courtney was very honest and open with him, and he really seemed impressed by her attitude and demeanor considering what she’s been through, is going through and is about to go through. It’s likely she’ll be getting a “go for transplant” from him.

Right after his visit, she was taken to another room where some nice people, including a nice man with a very good drug called versed, painfully extracted some more of Courtney’s bone marrow from her hip. While the versed didn’t knock her out or take all of the discomfort away, it did help her to relax and not care so much about what they were doing. She said she’s going to ask for a little more next time. The unfortunate part is there WILL be a next time and possibly MANY more next times. : (

So, after three fairly long days at the clinic, we aren’t scheduled to go back again until Monday, and that should only be for a blood check and maybe blood and/or platelets depending on the results. We’re looking forward to having a nice three day break from doctor stuff and to having a nice relaxing weekend at home. We have 19 more days to enjoy at home until Courtney’s admitted for the transplant. But who’s counting?

One more thing – I looked up Procrit at drugstore.com. They sell it for $5099.63 for 18 ml. It always cracks me up when they price it a few cents under an even hundred. As if $5099 looks so much more affordable than $5100. Just for comparison, a can of Coke is about 354 ml. At that price Procrit costs $1,072,206.39/gal. Although they would probably sell it to you for $1,072,199.63/gal. No wonder the insurance company is stalling!

Days 15 and 16 Consolidation - BMT tests

2007-11-13T21:43:00.000-08:00

Another long day. Today's cancer related activities started at 8:30 and ended at 5:00 . It didn’t start out too well, as Courtney battled a head ache and nausea when she woke up. We arrived at the clinic where they drew her blood and gave her some medication to help with her discomforts. Then we went upstairs from the BMT clinic for Courtney’s chest x-ray. That didn’t take long, but by the time we were done it was 12:30 . Then Court rested until 1:30 at which time we went down the road to St. Paul for her MUGA (Multiple Gated Acquisition Scan) to assess Courtney's heart. That took a couple of hours. We then went back to the BMT clinic because she still needed to receive platelets. We finally headed home at 5:00 . Everything seemed to move in slow motion today. It doesn’t seem like a lot happened to justify so many hours. Fortunately it was mostly a lot of sitting and lying around. Not too exerting.

The good news is she got new medication to help keep the nausea away – phenergan. That’s always worked best for her. Plus, it’s likely that the zofran she had been taking for nausea was the source of her headache.

The better news is that her chest x-rays and MUGA were fine. She got the thumbs up from both of those. The technician who performed Courtney’s MUGA was bald. He got a kick out of the t-shirt she wore that Susan had sent – “Does this shirt make my head look bald?”

The best news is that her neutrophils are at 500!! That’s almost a week sooner than we were expecting. Tomorrow they are probably going to give her blood as well as Procrit. Procrit is like Neupogen, except to boost her RBC’s instead of WBC’s.

Today's CBC:

WBC = .8
RBC = 2.72
HGB = 8.5
HCT = 23 (Cut off is 22 for blood, so she will probably get some tomorrow.)
Neutrophils = .5 (Goal is 1)

Tomorrow may be another long day. She has her PFT (pulmonary function test) along with the possible blood. Then Thursday is her bone marrow biopsy. They’ve promised to give her versed, if that’s what she wants. And it is. A mostly unconscious Courtney during the biopsy is a mostly happy Courtney after the biopsy.

Days 11 - 14 Consolidation - Long Days at the BMT Clinic

2007-11-11T21:26:00.000-08:00

Since Wednesday, Courtney’s only real complaint has been fatigue. This is likely due to the fact that her blood counts are all low and she’s considered anemic. On Friday, we had a long visit to the BMT clinic. We arrived at 9:45 in the morning. They checked her blood, gave her platelets, and a couple of hours later gave her a unit of blood. She actually needed two units, but another unit would have added a couple more hours to what was already a long day, and they said she would be fine receiving it Sunday morning. On the way to the clinic, we were able to pick up Courtney’s brother, Chris, who was in town for a conference. Having him there for a couple of hours really helped the time go by. The clinic has a TV with a DVD player in each room that also make long days there more tolerable. We were able to watch a couple of Courtney’s favorite movies: 50 First Dates and Bruce Almighty! We didn’t leave the clinic until 4:30. Like I said – long day.

Her counts on Friday:
WBC = 0.2 (Very Low)
HGB = 7.7 (Low)
Plt = 6 (Very Low)
Neutro = 0.0

So, Courtney is officially rock bottom. This means we can now start waiting for her WBC counts to go back up and have this round of treatment be officially over. It also means that we really have to be diligent these next few days in keeping Courtney as germ free as possible. This is technically challenging with four small children around, but they’ve been great in keeping their hands washed and staying out of our bedroom. It’s amazing how patient and understanding they have been these past few weeks. We know we have answered prayers to thank for this. So thank you all for your many prayers and amazing support.

We also had a good conversation with Dr V. She said that chances are Courtney is past the point when she should have adverse side effects from the chemo. That’s great, because this round Courtney has suffered relatively few side effects at all. That made Courtney really happy! We just have to make it through the next week or so while her WBC’s recover and pray that she doesn’t get a fever during this time.

Saturday was fairly uneventful and, since Courtney didn’t have to go anywhere, she was able to get much needed rest. The girls had a fun time playing with my sister, Molly, who was in town through today, helping out while my Mom went home for a few days.

Today the girls took part in a wonderful children’s program at our church. It was sad that Courtney didn’t get to be there for it. While they were each speaking their parts and singing songs, Courtney was back in the clinic receiving more blood. Some tradeoff. Hopefully, the blood will help keep her from feeling too crummy. You really don’t have a lot of choices for things you can do while being treated for cancer. I think that aspect is really taking a toll on Courtney. She can’t wait to get back to having a “normal” life. Fortunately, that day will come in the not too distant future. Unfortunately, that future day is still distant. We pray that the transplant will be successful and her recovery will be quick. We have a date to the Caribbean waiting for us!

Days 8, 9 & 10 Consolidation – It’s Gooood.

2007-11-07T21:41:00.000-08:00

I’ve been afraid to update this blog, because everything has been going so good, and I don’t want to jinx it by pointing it out. But, I owe it to of you who cares enough to follow Courtney’s progress to keep you in the loop. And I owe it to all of you who have lent us your support and who have kept Courtney in your prayers to tell you how much they’ve helped. The bottom line is Courtney is doing remarkably well.

We’ve been waiting and somewhat expecting the chemo side effects to kick in, and although she has felt some nausea and has lost some of her sense of taste and smell, the side effects have pretty much been limited to just that. Her headaches are all but gone, and she’s gained strength and energy each day since she’s been home. She’s making it easy to forget that she’s in the midst of a course of chemotherapy. But we can’t forget because we still have to be diligent. Her WBC counts still have to drop to zero before they go back up and we can consider her done with this round. As of today, her blood counts are steadily dropping.

So far, we’ve been to the BMT clinic twice: Monday and today. Monday we went so she could get a shot of Neulasta. This drug is supposed to help prevent a nutropenic fever, a condition relating to a really low amount or altogether lack of neutrophils. That’s pretty much all they did. She didn’t even have a blood draw. They didn’t expect her counts to be so low, so they put of running blood analyses until today.

Today’s visit to the BMT was slightly more eventful and much more informative. While they did draw her blood, the counts indicated she didn’t need any blood products, but probably will on Friday. They’ve already ordered the platelets.
Her counts for today:
WBC = 3.0 (low)
HGB= 9.1 (low)
Plt = 44 (low)
Neutrophils = 2.9 (normal)

Dr. Vusirikala (Dr. V), Courtney’s oncologist for this round of chemo and for the transplant, came in to give us much more information regarding the bone marrow transplant and its timing. Speaking of the transplant, I just realized I never shared the fact that Tracy, Courtney’s sister in Italy, will be the donor. It turns out that she is the only match amongst her siblings. So, needless to say, she will be making another visit to our home in the near future.

The timing that Dr. V gave us could change depending on how Courtney feels during the coming weeks, but it’s still nice to have a plan. So, taken from Kelley’s notes and subsequent email sent the family, here’s the plan as it stands now:

Nov.12th: Courtney will start pre-work up testing which could last 3 days.
Nov. 26th: Tracy will go for pre-work up testing.
Nov. 30th: Anticipate all of Tracy's blood work and test result will be back for confirmation
Nov. 30th: Courtney goes to UT Southwestern (outpatient) for removal of PICC line and insertion of new line (neostar? Three tube line on opposite side of Hickman).
Dec. 3rd: Courtney is admitted to BMT unit; will receive dilantin as preventative for seizures
Dec 4th: Courtney starts Chemo – this is a 7 day course of Busulphan (4 doses every 6 hours on four days) and Cytoxan (two doses).
Dec 7th: Tracy will start injections for 3 days; she will not be admitted at any time
Dec 9th: Courtney will get Prograf (an anti-rejection drug). This is a drug that she will likely be on until for over three months after the transplant.
Dec 10th: Harvest Tracy's stem cells. This may not require a catheter but may be done through a regular IV. They will determine this prior depending on the size and strength of her veins.
Dec 11th: Bone Marrow Transplant

Discharge is contingent on: Resolution of toxicity of chemo effects, resolution of infection if one occurs, recovery of WBC counts and resolution of graft versus host disease (GVHD) should it occur (10-15% chance for acute GVHD).

Dr. V also shared with us the fact that while Courtney will probably feel pretty crummy during the BMT treatment, she probably won’t feel as bad as she did during her first round of chemotherapy. We hope and pray that this will be true. It would be nice if she never feels worse than she does right now . . . which is, in Courtney’s own words, “Goooood…considering cancer still sucks and chemotherapy is still crappy.”

Days 6 & 7 Consolidation – Home Again

2007-11-04T22:27:00.001-08:00

Home sweet home. As nice as the hospital was this time, it’s still much nicer for Courtney to be at home and in her own bed. This is especially true when she’s not feeling ill or on mind altering drugs. Then it’s nice having nurses around. Nevertheless, Courtney is really happy to be with her kids again…and me she says. It’s also nice for me having her next to me as I update the blog.

So far this round of treatment has gone pretty well, aside from the spinal tap and horrible headaches which have greatly subsided thanks to the aforementioned blood patch procedure. It’s weird to think that she’s done actually receiving the chemotherapy but we’re still waiting for it to do it’s job and rear it’s ugly head. Hopefully it won’t be so ugly this time.

We’re still getting a ton of support from both family and friends, and can’t thank my mom or Courtney’s sister, Kelley, enough for everything they’ve done and continue to do to help us. And offers to help continue to pour in from our church, neighbors and community. We wish we could accept them all, and appreciate them all greatly, even if we have to turn them down.

Over the course of the next couple of weeks we will be going to the BMT center every other day. There they will draw her blood, check her blood counts, give her some IV medication, and give her blood products as needed. Some of these days could potentially be long ones. The days in between the clinic visits, we will have to give Courtney her IV medication here at home. A home health nurse came by today to show us how to do this. It’s fairly simple. And since she already has the lines in her arm, no needles are involved.

Courtney says she misses everybody! Don’t hesitate to send an email or call while she’s feeling good and at home. She really enjoys chatting with friends, even if it’s limited to a phone conversation. We wish we could have everyone come over and have a big party, but that’ll have to wait until next year, when we start 2008 – Cancer Free. In the meantime, we’re at least enjoying having Courtney at home. Her presence makes our sweet home so much sweeter.

Day 5 Consolidation - Blood Patch

2007-11-02T21:58:00.000-07:00

After four days of a nearly debilitating headache, Courtney received what is called a blood patch. A neuroradiologist injected some of Courtney’s blood into the epidural space where they gave her a spinal tap. The makes sort of a patch to stave the leaking spinal fluid which was the likely cause of her severe headache. While this probably won’t completely make the pain go away, it should help significantly. Unfortunately, it wasn’t a pleasant experience for Courtney. Especially since they had to basically do it twice since the first time they determined they had approached from a bad angle. Everything was done with fluoroscopy so they could tell exactly where to put they patch. So, while she has a sore back and her head aches slightly, she feels better now than she has since Monday.

Today is also the last day of Courtney’s chemo during this consolidation therapy. She won’t need another dose of chemo until her bone marrow transplant, which should be in about four to five weeks.

Courtney will probably be coming home tomorrow. Over the next few days her WBC’s will be dropping just like they did during her last chemotherapy treatment. This means that we’ll have to take precautions, similar to the ones we had to take when she was in the hospital. It could likely be a very difficult two weeks ahead of us. We’re hoping and praying that things don’t go south for Courtney as bad as they did last time. Unfortunately there’s no way to know for sure how things are going to go. So, in the mean time our goal is to keep Courtney in a clean and comfortable environment. We’ll have to limit visitors, but feel free to call to see if Courtney is up for a chat!

Day 4 Consolidation

2007-11-01T22:09:00.000-07:00

The past two days have been a battle with the spinal tap headache. I’ve read that it’s often described as “the headache of all headaches.” Courtney says, “that pretty much sums it up.” It’s really frustrating, because if it wasn’t for the nasty headaches, her stay at the hospital this time would be pretty much a piece of cake.

Yesterday was probably the worst day of the week. She was given chemotherapy to fight cancer, blood to fight anemia, morphine to fight the headache, benadryl to fight the itchiness from the morphine and phenergan to fight the nausea from the headache that caused her to throw up for the first time since this whole ordeal began.

Meanwhile, I got to leave the hospital to go to work and then spent the evening trick-or-treating with the kids (as if they needed more candy). I could dump out two thirds of the candy and they would never miss it – and I probably should – but won’t because I like candy and have a hard time throwing away perfectly good candy. Anyway, I can’t tell you how guilty I feel having so much fun with the kids while Courtney is so miserable in a hospital – even if it is a nice hospital.

And even though I know Courtney would tell me not to feel guilty and that I should just enjoy the time I have with the kids, I can’t help it. It doesn’t seem fair that I should go about doing ‘normal’ everyday activities, while she’s confined to a 10 by 10 room. I feel guilty every time I leave her in the hospital, and every time I sleep in our comfortable bed at home, and every moment that I have fun with the kids, and every meal that I can eat without feeling nauseous, and every time I go shopping, and I feel guilty every time she feels pain of any kind while I go about without so much as a sniffle. I know it’s a blessing that I can do all of this and do what I need to do to keep our family afloat, but I still feel guilty. I just wish I could trade places with her, even if was for just a few hours. Too bad we can’t tag team while fighting this disease.

So, after a rough day yesterday, Courtney followed it up with a slightly better day today. Today was an off day for chemotherapy and she didn’t need blood. So it was a quiet day from the IV pole. Her headache also subsided for awhile and she was able to get up and walk around a bit and eat some decent food. Unfortunately it came back pretty bad after dinner and she asked for some powerful meds to help her relax and sleep pain free. Hopefully the pain free afternoon was an indication that her spinal fluid is returning to normal and the headaches will be gone for good. Just in time for the side effects of the chemo to kick in. Life just isn’t fair sometimes.

Day 2 Consolidation

2007-10-30T21:17:00.000-07:00

This is the Consolidation Chemotherapy plan:
Days 1, 3 and 5 Courtney will receive two doses of Ara-c (Cytarabine) separated by 12 hours. Days 2 and 4 she will sit around and do nothing – as far as chemotherapy is concerned. She will probably do a lot of talking. She’s always been easy to talk to, but lately she’s been especially chatty. It’s been a lot of fun just listening to her. I wish I didn’t have to work, so I could spend more time with her. But I’m grateful for the nights that I’ve been able to stay with her and grateful to my mom for helping taking care of the kids and the house so I can have this time with Courtney.

So, today was chemotherapy free once the 2nd dose finished early this morning. She had a really good day, with the exception of some headaches. Hopefully that will be the worst of her stay here, and hopefully they won’t last much longer. Her next dose of chemotherapy begins tomorrow at noon. Each dose takes about 3 hours to administer. So far, not so bad.

Day 1 Consolidation

2007-10-29T23:00:00.000-07:00

New round of chemotherapy and new hospital. After meeting with Dr. V last Thursday and deciding that we would proceed with a bone marrow transplant, we also decided Courtney would undergo the recommended round of consolidation chemotherapy under her care at UT Southwestern. We figured that since she would be going there for the transplant, we might as well go there now, allowing ourselves a chance to get to know the doctors and facilities, and allowing the doctors the opportunity to become familiar with Courtney. This way they will have a few weeks of first hand knowledge or her condition and reactions to the chemotherapy and other medications before the transplant procedure begins.

The hardest part about switching facilities is leaving behind the awesome nurses, techs and doctors that became like family during our stay at Harris Methodist. However, so far, everyone here at Zales has been great. And we have to admit the room is quite a bit nicer than her room at Harris Methodist. Note to Harris Methodist, the onocology floor is well past time for a serious makeover. A simple fresh coat of paint would go a long way. And get rid of the bump at the entrance to the bathroom; it’s a pain trying to get the IV pole over that all the time. A couple of little extra perks include a small fridge and dvd player. These small things just help ease the burden of being away from home, especially during an extended period of time.

So, the first day of consolidation came and went fairly quickly. We checked in shortly before 8:00 AM. At around 9:00 AM Dr. V came in with her PA (Laura), and the PharmD who will be verifying her chemo treatment. They said they would put a PICC line in, but this time they would use flouroscopy to see the line as it went in. At 9:30, Laura said Radiology was booked for the day and that she couldn't get her PICC until tomorrow, but would have Dr. V call down and use her influence. At 10:15, Laura came back to tell us she was on the schedule for Noon. Five minutes later, her nurse came in and said they were on their way to get her. By 11:30 she was back in her room after a flawless PICC line installation in her left arm. She flew through it without a single sedating drug and only local anesthesia! Much better than last time!!

Less than two hours later, Dr. Rohm came in to give her a spinal tap. This was a precautionary procedure to check her spinal fluid for leukemia. There are some forms of AML that appear in the spinal fluid and have to be treated with specific drugs. While they didn’t think her type would have this, they just wanted to make sure. This was obviously not a pleasant experience for Courtney. The main side effect has been head aches, but she’s doing great.

Laura the PA gave us some for information about the chemo and the duration of her stay. It will be similar to induction, with side affects occuring a week to 10 days later and her counts dropping to zero and going back up at a similar rate to what we saw last time. If she has a fever over 100.6 at any time, she will probably stay in the hospital until her neutrophils are back to 1000. If she looks good after the treatment, she will probably be sent home with instructions to return every other day. If during that time she gets a fever, she will probably be readmitted. Just like the induction treatment, she will need blood and platelet transfusions as her bone marrow goes off line. If she's not in the hospital, they will do the transfusions in the clinic as needed. They plan to leave her PICC line in when she goes home and set up a home health nurse to flush the line as needed. So, while were planning to be able to go home at the end of the week, we’re prepared to stay for the next 3 to 4 weeks if necessary.

2007-10-27T21:19:00.000-07:00

I would have to say, and Courtney is sitting here agreeing with me, that today is the best day she’s had, physically and emotionally, since September 15th, when she first started feeling sick. She was up and about quite a bit, as witnessed by many of our friends we were able to see at our church’s Trunk or Treat.

The Trunk or Treat has become somewhat of a tradition for us. Each year around Halloween, families gather and park in the church parking lot and hand out candy to trick or treaters as they walk from car to car. We really enjoy it as it’s a safe and easy way for kids to trick or treat. You don’t have to worry about crossing streets, about strangers, or about dark houses. And everybody is home. And with cars only separated by a foot or two, the kids can hit a lot more cars in an hour than they ever could houses. This year the Trunk or Treat was especially great, since it allowed Courtney the opportunity to see the kids in their costumes and be with them trick or treating before she has to go back to hospital where she will be when Halloween actually comes around.

So, here’s the revised plan:
• Monday, October 29th, Courtney will be admitted to the hospital for five days of consolidation chemotherapy. Her doctor expects her to be released from the hospital on Saturday if all goes well.
• Next Friday, November 2nd, we should find out if any of Courtney’s other siblings are matches for a stem cell transplant.
• About four weeks after her consolidation treatment, Courtney will go to the Bone Marrow Transplant clinic for a couple days of physical examination, where they will make sure she is physically and emotionally fit for the transplant.
• If she passes her physical, she gets to play ball, and about a week later she’ll be admitted to the hospital for hopefully the last time.
• Eight days after admission and after a few days of more chemotherapy, Courtney will actually receive the stem cell transplant, which is more or less a blood transfusion.
• After the actual transplant, she will experience a couple of weeks similar to what she experienced after receiving her first round of chemotherapy (the induction chemotherapy.)
• Two to three weeks after the transplant, when her bone marrow is back to working properly and her WBC’s are back to normal, Courtney will be discharged from the hospital for the last time!

So, if you look at your calendars and follow the above timing, she will likely be in the hospital through Christmas, but coming out sometime before or after New Year’s. Courtney keeps saying she’s looking forward to starting 2008 cancer free! What a great blessing that would be!

We know for a fact that prayers work and have been answered throughout this entire process. We are again so thankful for the countless blessings that have come to us by way of so many wonderful friends and family members. We truly couldn't have made it this far so easily without all of the prayers and support. Thank you again!

Here are some pics from tonight!

Day 34 - The BMT Visit

2007-10-25T20:47:00.001-07:00

Courtney had a lot of ups and downs today – literally and figuratively. She started off with her best night’s rest in a long time (thank you, Barb), but woke up in the wee hours of the morning with more stomach aches. The pain and discomfort continued throughout the day until we left for the appointment at the Bone Marrow Transplant Center.

The BMT Center was very nice. Everyone, from the receptionist, to the Physicians Assistant, to the Doctor were very accommodating and extremely likeable. We received more information regarding Courtney’s condition and treatment in less than an hour than we have since she was first diagnosed. They laid out the plan for more chemotherapy and ultimately the bone marrow transplant. It was a lot of good information to digest, bringing with it some big decisions to make.

By the end of the visit, Courtney was feeling much better. We had a nice dinner, courtesy of Courtney’s mom, who actually flew in for the day to attend the appointment and help us to gather information and ask the right questions. Courtney was feeling so well when we got home that she was actually able to walk up and down the stairs in our house for the first time since returning home. This was great as she was able to tuck the kids into bed for the first time in over a month. It’s funny how the seemingly small things become cherished moments when you’re not able to do them for such a long time.

Day 33 - A Donor!

2007-10-24T23:00:00.000-07:00

This morning Courtney received a call from her sister, Tracy, who is now back in Italy. Tracy found out today that she is a match for a bone marrow transplant for Courtney! So far she is the only one to be tested. Courtney has two other sisters and a brother who are all planning to be tested as well. It's nice to be 1 for 1.

We’re not sure how having a donor will affect the chemotherapy treatment schedule, or how soon the transplant would take place. We have an appointment with the UT Southwestern Transplant Clinic tomorrow afternoon. Hopefully we’ll find out exactly what to expect in the coming weeks.

Courtney continues to see physical improvements daily. Today was by far her best feeling to date. She was up and about quite a bit and even got out of the house for awhile. Her biggest issues continue to be abdominal pain, tiredness and muscle fatigue. These are more than likely due to a combination of the lingering effects of the chemotherapy, the lengthy hospital stay, and the medications she’s taking. All of these will hopefully subside before her next round of treatment. In the meantime, she continues to eat fairly well and does what exercises she can. She was shown some great little exercises by the physical therapist at the hospital.

Her spirits are lifted daily as she’s able to visit with more friends and reconnect with her “normal” life that was suddenly and drastically put on hold more than five weeks ago. She’s also lifted up by the many small and not so small acts of kindness by friends and family near and far. This evening we received a surprise visit from the Young Women of our church. Unfortunately their visit had to remain on the doorstep and free of much wanted hugs as Courtney still has to be vigilant is staying away from germs. The wonderful young ladies brought over cute blankets they had tied and stuffed animals for each of our four children!! Thank you!!!

Also this evening, Courtney received a much needed professional massage that she described as “awesome” from a friend from church. I honestly haven’t seen her smiling so big and looking so content in a long time. After so many nights in a hospital bed, her back has been quite achy. It’s amazing what good rub down can accomplish. I think she’s really going to sleep much better tonight.

So, despite the horrendousness of cancer and all the pains that come with it, we continue to count our blessings and are constantly amazed by the plentitude that continue to come our way. It is our firm belief that God’s love is expressed through the kind actions and generosity of those around us. We are so very thankful to all of those who have given their time, talents, energy, money, and prayers (so very many of which have been answered), helping us to feel an overwhelming amount of God’s love at a time when we most need it. We hope and pray that your lives are blessed tenfold in return.

Day 31 - Home At Last!!

2007-10-22T22:07:00.000-07:00

Courtney is finally home and hospital free – at least for the next seven nights! It was such a great sight to see her and the kids together again after more than two weeks. The look on their faces when they saw her walk in the door was priceless. They all had a nervous look to their exuberance, not sure what to make of a bald mommy. They all quickly overcame the uncertainty of Courtney’s new look, and quickly started showing her things they had made and telling her all they had done while she was away.

As far as Courtney’s physical condition is concerned, the past two days have been superbly uneventful. She did have a couple of fevers Saturday night and into Sunday (none last night or today!), that made us question whether or not she would get to come home today, but, other than that there is really nothing worth noting. Her blood counts are almost completely within normal. Her WBC’s and neutrophils are within normal, as are her platelets and hemoglobin. After more than 30 days of abnormal results, it’s really nice to finally see some normalcy.

Last night was difficult as Courtney had to say goodbye to her sister Tracy as she left early this morning to return to Italy, where her husband Shawn is stationed with the Army. She really enjoyed having her around this past week. It had been over two years since they last saw each other, and they had a good time reconnecting. It’s just too bad that it couldn’t be under circumstances that were more fun. It’s hard saying goodbye to the ones you love, especially when you’re not sure how long it will be until you’re able to see them again.

Tonight will be the first night in over a month that Courtney won’t be woken up at 4:30 AM to have blood taken, nor at 7:00 AM to have her vitals checked. We’re hoping she gets a really good night of rest in her own bed without the disturbances. She’s had a long day and really needs it.

Her main battle this week will be trying to regain some of her strength that she lost while confined to her hospital bed for so long. It’s amazing how quickly muscles atrophy when not used. She was unable to go up our stairs or pick up Aidan today. I think she’d really like to be feeling better physically before starting the next round of chemotherapy. This week she’ll have to balance getting plenty of rest while doing what she can to use her muscles and build them back. I have a feeling this next week will fly by. For once I wish we could slow down the clock – at least for the next seven days.

Day 29 - I Will Be Here

2007-10-20T23:41:00.000-07:00

Courtney's first full day in the hospital, free of tubes and IV's, has left me little to say or update regarding her treatment. She did start a new medication that had interesting side effects that affected her vision, thoughts and speech. She's supposed to take it for the next 21 days, but is going to ask for something else if the side effects persist.

Her WBC's are still increasing steadily upward, approaching the normal range. Her neutrophils were actually within the normal range as were her plateletts!! Also, her day was fever free. If she keeps this up, 48 hours from now she will be sleeping soundly in her own bed.

Today was, for the most part, a great day of visiting with family and friends. My sister Molly arrived this morning for the weekend. Also, Courtney's brother Chris came back to town, this time with his wife, Leticia, and their two precious children, Lindsey and Christiana. Courtney spent most of the day with her parents and had a really nice visit with Leticia.

I took the kids, my mom and sister to the second garage sale held for Courtney. It's still so overwhelming to see all the people giving so much of their time to help us! Thank you, thank you, thank you for all your support!!! Later, I was able to take the three girls one at a time to our local fire station for flu shots. It's so much easier when they can't see the others getting theirs. The flu shots are one more thing that will help Courtney and ease some of her fears of coming home. She gets hers tomorrow.

We really had a lot of fun today. It's always so bittersweet to have a good day without Courtney around, knowing that she's stuck in the hospital and knowing that she would give anything to be with us. I can wait for the day that we can go back to having our normal family fun.

On the way home from visiting her in the hospital tonight, I listend to a song for the first time in a long time. It's on a CD that I made for Courtney shortly after we were married. The lyrics were significant then, but their significance today brought tears to my eyes. I couldn't resist putting it here, to share with her and with all of you who have been here for us.

Steven Curtis Chapman - I Will Be Here

Day 28 - Remission!!

2007-10-19T23:43:00.000-07:00

This morning Courtney had bone marrow biopsy #2. The first one was done almost four weeks ago to help us determine what type of AML Courtney has. Today's was done to tell us whether or not the chemotherapy put Courtney into remission. We found out earlier this evening that it did!!

The pathologist had actually told us that we probably wouldn’t have results until tomorrow, but Dr. Jordan’s partner came in with the results this evening. The timing of this news came as a big surprise – one we welcomed with open arms.

The biopsy, while obviously painful for Courtney, went quite smoothly. She was able to get some rest afterward. Later in the afternoon, Courtney had her Hickman catheter removed. The doctor was going to numb the area a little before pulling it out, but after seeing that it might come out easily, he just gave it a good tug and out it came. So, for the first time in four weeks, Courtney is sleeping tube free. She has absolutely nothing attached to or hanging from her body. After weeks of trying to sleep through nights with incessantly beeping IV pumps, I’m sure Courtney is relishing the thought of a restful night free of disturbance. I’m sure her sister, Tracy, is too.

Speaking of Tracy, she went to the bone marrow transplant clinic in Dallas to have blood drawn to check to see if she is a match for Courtney. Since Courtney hasn’t been to the clinic, Tracy took four vials of Courtney’s blood with her. She was told the process of determining whether or not her marrow is a match to Courtney’s could take a full week. It’s nice to finally of the process of finding a donor moving forward. Thank you Tracy!!

Truly amazing. After one simple phone call last night, 10 women from our church showed up at 11:00 this morning to help clean and sanitize our house. They did a tremendous job in just a little over an hour. The house acutally smelled like a swimming pool (I love that smell) when I got home! Once again we are grateful beyond description for the love and support we’ve received these past four weeks.

Four weeks!! Exactly four weeks ago today, Courtney was diagnosed with Leukemia. Today she found out she is in remission. We can’t believe it’s actually been that long. While each day has been rather lengthy, the weeks have seemingly flown by. Though we are along way from being done with this, we feel like we’ve taken a giant step forward in the right direction! Thank you for answered prayers!!

After some discussion with her Doctor, it was decided that Courtney would wait until Monday to go home. Courtney is actually relieved to have a couple of extra days to recover before going home. These two days will give her a chance to gain more strength physically and emotionally before being removed from awesome care of the doctors and nurses. After four weeks, we can wait a couple of extra days. Especially days without beeping IV machines.

Day 27 - Homeward Bound

2007-10-18T22:16:00.000-07:00

Courtney’s oncologist, Dr. Jordan, visited her this afternoon, bringing with him very good news. Her WBC’s and neutrophils are high enough for her to go home! However, her infectious disease doctor said he wants to see her go 24 hours without a fever before going home. She had a slight fever early this afternoon. So, if she is fever free after today and if she’s feeling up to it, she could feasibly be coming home Saturday!

This news came somewhat as a surprise. While we knew all along that 1000 neutrophils was the benchmark for going home, and while we knew she was rapidly approaching that mark, we were apprehensive to even consider going home so soon thinking there had to be more criteria. Especially considering how bad Courtney had felt so recently. So, with the tremendously great news comes anxious anticipation.

After being so sick for so many days, Courtney is understandably nervous about being away from the hospital and away from most of the people who have done such an amazing job at taking care of her. The wonderful doctors and nurses have essentially been Courtney’s lifeline for the past four weeks, keeping her infections at bay and her pains at a minimum. She fears not having them (and their drugs) around when she might need them. So, while she undoubtedly is looking forward to being in her own home and in her own bed and with her children again, she’s somewhat worried about becoming sick again in the process. We are going to do everything we can between now and then to alleviate her fears by sanitizing the house and making it in tip-top condition for her homecoming.

So here’s the plan:
Tomorrow morning she will have her second bone marrow biopsy. This is a big one, as it will tell us whether or not she’s in remission. We’re hoping the results will be ready tomorrow afternoon. Also, tomorrow, Courtney will have the Hickman catheter removed. Her platelets were above 70,000 today, so the doctors are finally confident about removing it without excessive bleeding.

Thursday, October 25th, Courtney has an appointment at the Bone Marrow Transplant Clinic at UT Southwestern in Dallas. They will do an assessment to determine if she is a viable candidate for a transplant. Basically they will perform a thorough evaluation to make sure she can withstand the physical and mental stresses associated with a transplant. It’s a fairly risky procedure that they don’t take lightly.

Monday, October 29th, she will likely be scheduled to return to the hospital and it’s friendly staff for her next round of chemotherapy, called Consolidation. Dr. Jordan said that he’s planning on three rounds. Each round consists of six days of chemotherapy followed by a few days of recovery. He said that the recovery period during the consolidation is different than the induction recovery that she just endured. He didn’t specify the number of days she’d be in the hospital for each round, but it’ll be at least 7 days and likely 10 or more. After each round Courtney would go home for a week.

An important aspect of all this is that neither the consolidation chemotherapy nor the bone marrow transplant will occur if she isn’t in remission. If the bone marrow biopsy shows that she still has leukemic cells, she will more than likely start over with another round of induction (a repeat of the past three weeks). That would be a crummy setback to say the least. So, now you all know what to pray for. Your prayers and support have helped to get us this far! We are along way from the end, so please don't stop now!!

Day 26 - The Best Medicine

2007-10-17T23:58:00.000-07:00

Courtney’s day started off as planned with an ultrasound of her gall bladder and liver. Her sister, Tracy, related the following:

“I have to tell a funny story from this morning...she was transported downstairs to the ultrasound room, had her scan and she and I were waiting for them to bring her back upstairs. A girl and a guy came in and said hello and that they were ready to take us back upstairs to her room. Courtney looked at both of them and said "I will give you $20.00 to take me home" and they laughed. She looked at me and then said "I will give you a $100.00 to take me home" and they laughed again and said they just couldn't but it was tempting! So she looked at me again so I said "I'll throw in 100 bucks to the pot to take her home!" and Courtney said "she can throw in more than that!!" Well, none of it worked and we are back in her room but we smiled and giggled. Oh, one more thing, once she woke from a catnap and realized she was in her room she looked at me and said "Why didn't you pay them more?!””

The morning was filled with a good dose of laughter. I can’t tell you how nice it was to see this. Her laugh was the best thing I’ve seen in a long time. It might have been somewhat drug induced, but it was genuine. And just 48 hours earlier, no amount of drugs were going to help produce a laugh from her. The laughter alone made today a better day.

Her CBC results also made today a better day –
WBC = 800 (Still rising)
%Neutrophils = 57%
Absolute Neutrophils = 500 (half way there!)
%Blasts = 1% (While we’d rather see zero, no need for alarm yet.)

I got to her room today just as the gastroenterologist was paying her a visit. He said that her bilirubin levels were back to normal and that the ultrasound showed nothing to be concerned of. In fact, he gave her a clean bill of health with regards to her liver (no hepatitis) and gall bladder (no blockage or gall stones).

Shortly after the GI doctor’s visit, her primary care doctor, Dr. Bolagi, showed up. He’s visited her on all but two days since she’s been in the hospital. He was glad to see her sitting up in a chair, eating food and in relatively good spirits. He said he was glad to see better blood results. He also said the edema (swelling throughout her body) should improve as her eating improves and as they cut back on her fluids. He said that while he could give her albumin, he’d prefer to let the body beat that on its own, rather than introducing more substances into her body.

Around noon, Tracy cut Courtney’s hair even shorter. She gave her a really short bob that was quite cute. I had actually brought the clippers with me, but Courtney decided to try to save the little hair she had while she had it.

It wouldn’t last, however. And by the end of the day, it had become evident that the best thing to do would be to shave it all off. Easier said than done. I can’t imagine that Courtney ever planned on showing me the true shape of her head. I doubt that many women would want their husbands to see them that way, or even see themselves that way. It’s hard to say good-bye to something that literally is part of who you are and who you always have been. It might be just hair and it will grow back, but those facts only slightly mitigate the difficulty of removing a woman’s hair. Lots of tears were shed. I think the hardest part for Courtney wasn’t so much the actual shaving as it was having to face the fact that she’s having to shave because she has cancer.

Yet, despite the swelling, despite not having seen her children for 11 days, despite having to spend her 27th straight night in the hospital, despite her swollen feet and ankles that reminded her of Princess Fiona’s from Shrek, and despite the loss of her hair that she spent the past year growing out, she managed to have a few little laughs and some genuine smiles at the end of a very emotional day.

I must say that Courtney has a very cute melon. I had to remind her that it wasn’t her hair that first caught my attention 10 years ago. It was her beautiful eyes and gorgeous smile that had me smitten from day one. And cancer hasn’t touched those one bit.

Day 25 - More Better News

2007-10-16T22:19:00.000-07:00

It was far from good, but it was a better day. Except for the lack of sleep. I only got to spend an hour and a half with her today, but from what I could tell and what she could tell me, she’s improving – ever so slightly.

The not so good news: Her hair continues to fall out. When I arrived this afternoon, she was wearing a hat for the first time. She looked really cute in it, especially since it was a Spurs hat. Thank you, Susan. – She’s still puffy from the edema. This seems to be caused by low albumin in her blood, likely due to her lack of protein consumption. They can give her albumin intravenously to help, but haven’t. I’m sure they have their reasons, but I don’t know what they are. – She still doesn’t like to eat, since everything tastes ‘crappy.’ Unfortunately, this is a side effect of the chemotherapy, and we’re not sure when the effect reverses. – Like I mentioned above, she hasn’t slept much the past 24 hours. Tracy said she woke up every hour last night, and didn’t sleep at all today. Hopefully she’ll rest well tonight. – It’s been ten days since she’s seen her children. This is really starting to take its toll on Courtney. Fortunately, she’s been fairly out of it for most of the past week, but during moments of lucidity she misses the kids more than anything else.

The better news: She’s experiencing less intestinal pain. This has been really bad the past week, but seems to be improving slightly each day. This helps her to have a better appetite, but it’s still hard for her to eat because of the ‘crappy’ reason stated above. – She was more alert today than she had been the past few days. This is an indication that she’s having to rely less on some of the medications that mentally impair her. Although, I’m not sure how alert she wants to be. If she could sleep through all of this, she would.

The more better news: Her CBC.
WBC = 600 (Doubled)
%Neutrophils = 44% (44% of 600 is better than 46% of 300)
Absolute Neutrophils = 300 (three times better); goal is 1000

Good news: Kids are all healthy.

Other news: Courtney is scheduled for an ultrasound on her abdomen, specifically her gall bladder (I think) tomorrow. This is to check to make sure there are no infections. They’re doing this because her blood work showed high levels of bilirubin. This could be a side effect of the chemotherapy, but they want to make sure it’s not due to problems with her gall bladder. Blockage of the bile ducts can be a cause of high bilirubin levels. They want to rule that out with the ultrasound.

Let’s pray that tomorrow’s ultrasound turns up nothing and the new day brings with it even better news.

Day 24 - Hospital Fun

2007-10-16T00:17:00.000-07:00

At 4:30 this morning, like clockwork, a nurse came in to take Courtney’s blood. This is fine, because after this we can usually sleep until 9:00 or 10:00, relatively undisturbed. Not today. At 6:00 a nurse came in and told her that she couldn't eat or drink anything except a nasty tasting barium drink. Huh? Did we miss something? Apparently the doctor ordered a CT scan without letting us know. It would have been nice to have some warning and understanding as to why you're being woken up at 6:00 and told that no matter how thirsty you are (Courtney was very thirsty) you can’t drink.

She had to drink about 24 oz of the barium/juice mix which consisted of about 3 oz of barium. I think it would have been easier just to drink the barium straight (not sure if this is an option) and wash it down with the juice. Mixing it with juice just made for having to consume a greater quantity of bad tasting fluid. The weird part is that Courtney asked if she could just have some water and was told ‘No’. But then the nurse said she could dilute the barium drink mix with a little more water or juice. What’s the difference if she drinks some water by itself or mixed with the barium? Anyway, as her nurse left her with her 'drinks', she asked if Courtney needed anything else. Courtney answered, "No, but would you like juice? Only 25 cents." It's so funny when she can hardly speak, yet be so witty. Well, she did a good job of getting it all down on an empty stomach. I kinda started feeling nauseous just watching her drink them. Almost as soon as she was done they wheeled her down to the "dungeon" for her abdominal CT scan. I went down with her and was told to stay in the waiting room. I waited for about 20 minutes before asking if she was almost done, only to be told she was already back in her room. Apparently she was done in under 5 minutes. Great communication. I got a sheepish apology from the Radiology receptionist. Poor Courtney was too out of it to say anything or to even know what was going on. She didn't like the scan because she said it sounded like she was in a blender.

The other surprise this morning was when her lab results came back. Her nurse said all that had been ordered was the blood chemistry, which only consisted of the minerals (potassium, calcium, etc.) and protein. The CBC was not specifically ordered like it had been every other day, so it was not done. Her nurse did come back before noon to draw more blood to run a CBC. She also said that she would make sure that the CBC became a standing order and would be done daily.

Results of the day:
The doctors are still trying to decide what to do with the Hickman catheter. They are leaning towards removing it, but just aren’t sure what to replace it with.

The CT scan of her abdomen showed nothing unusual. This is good.

Her blood results came back with the following:
Hemoglobin = 7.2 (she needed and received blood today)
Platelets = 12000 (Needed platelets today)
WBC = 300 (Better than 100)
%Neutrophils = 46% (This is the percent of WBC’s that are Neutrophils, the most important ones for Courtney. This is better than yesterday’s 16%)
Neut. Abs. = 100 (First time to show any. This is 10% of the goal of 1000!!)

So we hope this means she’s on the mend. She said more than once today that she feels better today than she did the past couple of days. Pray that the trend continues. The other good news of the day was the Courtney’s sister, Tracy, arrived this evening from Italy to stay with her for the next 6 days and nights. Courtney was really excited to see her! Lots of tears when they embraced.

Day 23 - Two Words

2007-10-14T23:14:00.000-07:00

Two people woke up this morning feeling better than the night before. When Courtney woke up this morning I asked her how she was feeling. She said, “Better.” These days it’s not very often that she uses a positive word to describe how she’s feeling. Also, upon waking up, Emma announced to my mom, “I’m not sick anymore!” She and Aidan are both pretty much back to normal and so far no one else in the house has come down with the same bug. Thanks for all the prayers!!

I want you all to know that Courtney is surrounded by love, day and night. Between her family and myself, she has had someone by her side since the moment she was diagnosed – and often times she’s had multiple companions. Her sister, Kelley, after having spent six straight exhausting nights and days with her, went home yesterday to catch up with work and rest. You don’t get much rest when sleeping in a hospital room, especially when the one you’re with is not sleeping well. Such has been the case the past few nights, as Courtney has had to deal with a lot of intestinal pain and cramping. After being gone for just a few days to catch up on work, Courtney’s mom returned on Friday to help lessen the burden. Now, since my own mother can stay with the kids at home during the night, I can stay with Courtney, while her mom stays with her during the days. Despite the fact I don’t get nearly as much sleep here in the hospital, it’s much more pleasant being able to be near her, than being by myself in our bed at home. After sharing a bed with someone for ten straight years, it’s tough getting used to having it to yourself; which is fine, cause I don’t want to get used to it.

This morning, Courtney asked why she was so nice to the people who came in at 4:00 AM to take her blood. Even she’s amazed at what a wonderfully nice person she is. Courtney’s mom shared this conversation Courtney had with the nurse technician, Blake, today:

“We now have the screen up in the room between the door and the hall - Blake just asked her why and she told him to keep germs out - then he asked if she needed anything and she told him no - but that she liked the other nurse better - she could bring drugs - he teased her and said fine - he would come in last - but then she said no - he was in the middle - he asked who was below him and she said the person who comes and takes blood - he laughed and said great - before the blood sucker and after the drug pusher and she said yes, that's right!!! then she comments that she is still nice to all of the people that come in her room... gotta love it"

As for her blood counts, we’re still waiting for her WBC’s to return. Right now they’re at 100. Normal is 4000 to 11000. The oncologist on call today, Dr. Young, said we really shouldn’t expect to see anything until Thursday or Friday. She said that everything that is going on with Courtney is normal for a patient in her situation. The other thing she discussed was the possibility of removing the Hickman catheter in her chest (where they give her the meds and draw her blood) and replacing it with either another Hickman on the other side of her chest or a PICC line in the arm that doesn’t have a healing incision from the previous attempt at a PICC line. The reason for removing the Hickman is that they’ve discovered it’s a source of yeast that’s getting into her bloodstream. This is apparently within the confines of normalcy. Tomorrow they will weigh the risk of leaving it in and developing a potentially dangerous blood borne yeast infection vs. performing minor surgery with the risk of excessive blood loss (due to low platelets) and/or infection. It appears they’re leaning toward replacing it. This could happen as soon as tomorrow.

Courtney just asked me what I was doing. When I told her that I was writing about today, she said, “You only need to write two words: Cancer sucks.” That pretty much sums it up.

Day 22

2007-10-13T21:47:00.001-07:00

Despite the fact that Courtney had a miserable day, by her own account, and that Emma woke up still battling a stomach bug, it was an amazing day. Again, I only wish Courtney could experience all that is happening outside the hospital to support her.

The day started off with a visit from a neighbor I hardly knew, who had come over to mow my lawn. Thank you Jay! That allowed us to get of the house a little earlier so we could head over to Celebrate Roanoke before Aidan’s nap. There we were able to stop by the tables set up for Courtney’s behalf. Thank you to all those who pitched in and helped organize that and to the many who contributed. I nearly broke down in tears witnessing the love and support expressed by so many. Aidan especially liked the little basketball game. The girls thought it was neat seeing pictures of them with Courtney on the donation cans at several of the vendors’ booths.

We were also able to visit the garage sale at the Luna-Llanes’ home. Thank you to them and the Goodrich’s and everyone who helped support that as well! I couldn’t believe all the stuff they had, and apparently that wasn’t half of it. Truly amazing. Being able to enjoy these moments is somewhat bittersweet. I find myself feeling guilty for having a fun and enjoyable day with the children, knowing that Courtney is suffering miserably in a hospital room that she’s been confined in for three weeks. However, I know she wants nothing more than for our kids to be able to enjoy the same activities they would be doing if she never got sick. I know it makes her happy to know they’re doing well and having fun, albeit with remorse that she can’t be with them.

As for her current condition, she’s sleeping well at the moment. She’s still battling the intestinal discomfort and hair loss that have been going on for about four days now. But now she has to endure an achy back and fluid retention as well. As if she didn’t have enough to deal with already. It seems, though, that today was slightly better than yesterday. So, let’s all pray that the worst is truly behind us.

Here's an awesome slideshow courtesy of Amy Pennington!

Day 21

2007-10-12T22:45:00.000-07:00

I talked to Courtney for about 10 minutes today. I doubt she’ll remember it. I saw her for about 5 minutes today. I know she won’t remember it. I suppose the greatest blessing of the last 3 days or so is that she probably won’t remember much of what transpired. That’s good. She’s said from the beginning that she wishes she could just sleep through it all and wake up when the whole ordeal is over.

I only wish she could be out of the hospital to witness all of the wonderful service being offered on her behalf. (Except that it would probably make her cry and she hates crying.) Yesterday, Amy Pennington dropped off our Courtney’s Angels T-shirts. They’re awesome. I’m still amazed at how quickly those were created and delivered. Today I stopped by at the tail end of the blood drive. Thank you Michelle, Amy, Maclaine, Doug and all of those who were able to donate and to all those who would if given the opportunity. The man from the donation center commented that is was a great turnout! Twenty-seven pints of blood were collected, and eleven more tried! They’re planning on having another one in January. Hopefully this trial will be over with by then, but it’s still a great opportunity to give.

Again, thank you all for your thoughts and prayers. Aidan was back to his normal self today, while Emma, though not throwing up as much, is still fighting this crummy virus. Hopefully she’ll be well enough to go to Celebrate Roanoke tomorrow. I tried to get her excited about the fireworks, but she said, “They’re too loud.” I think she’ll enjoy them anyway. It’s kinda hard having fun, know what Courtney’s going through and knowing how much she’d want to be with us. But I also know that she wants the kids to be able to do all the things they would normally be doing. So, were trying our best to keep the routine. It’s amazing how they’re coping. I know how much they miss her, but they’ve been so mature about it. They just keep hoping she’s home in time for Halloween. But they understand that she just has to stay there until the doctors and medication are able to make her better. Once again, I truly believe prayers are being answered on their and Courtney’s behalf.

Day 20 - Hoping for a better day

2007-10-11T21:40:00.000-07:00

Just when you think it can't get much worse, you're proved wrong. OK, so I suppose when you're dealing with cancer it can always get worse. I just wish it wouldn't. At some point it has to get better...much better.

Courtney had a bad day. So bad, in fact, I was only able to speak with her for about 10 minutes total. Here's the summary from Kelley:

Hey.
Well, we went from a great day yesterday to an absolute crummy one today. Courtney is now asleep and hopefully will sleep through much of the night and feel better.
The platelets did their job -- no more blood. :) She had a x-ray of her stomach..but I am not sure when that report will come in. The doctor said that he was doing that for our peace of mind and did not expect much other than gas (which was confirmed just by them looking at it in the room). She got her second bag of platelets an hour ago and will be fine on numbers.

She really just felt crummy. I felt so bad for her...but glad the platelets solved the blood issue. Her hemoglobin was re-tested and was the same...which means she really did not lose much blood. It just looked worse than it was!

She missed talking to a lot of her docs today -- but they all came in. Her Infectious Disease doctor's partner came in briefly and said he would be back tomorrow since Court was unavailable at the time. Since Courtney had a low grade fever, they cultured her blood last night at 2 am. It came back positive for a gram positive bacteria. Don't panic! It is much better than those nasty gram negative infections (which if she should get one day are treatable) or fungal infections. They are putting her back on the vancomycin to knock it out and added a few more to her arsenal. So...she will feel crummy for a while but will get over this hump. Just wanted to let you know everything I do. Please do not worry about me saying she has an infection. They will treat it as they should. This could help account for the fact that we have not seen an increase in her WBCs too...so tomorrow we will know more.

We are both going to try to get some sleep tonight. I will email all in the morning...hopefully the morning that will bring a MUCH better feeling Courtney.

Oh yeah...in her drug induced stupor, she asked: Is Chris really going to shave his head? ;) (Chris is Courtney's older brother who promised to shave his head if she lost her hair.)

On that note...her head looks the same...but know it is not. More hair is coming out but in strands and not clumps. Today she really did not care about that though!

love you.
Kelley

We're so blessed to have had so much help from Courtney's family - especially her sisters who have been able to stay with her at nights, so I can be with the children.

As I was elbows deep in vomit today, I didn't dare go to the hospital. Emma went through the night and into this evening throwing up every 1-2 hours. Aidan began at 8:00 AM with the same thing. (I don't know what I would've done if my sister, Ashley, wasn't here to help this morning.) Both Aidan and Emma have been sleeping soundly for the past few hours, so it looks like it's behind us. Emma never really got upset. She just slept, watched TV and threw up all day. Aidan on the other hand seemed to have more pain and cramping, as he cried frequently in between bouts of throwing up. Funny thing happened with him - I had just started talking to Courtney when he woke up crying, seemingly in pain. I held him for a minute and when he quieted down, I called her back. He spoke to her for a moment before she had to go. Immediately after that, he started smiling (for the first time all day) and hit me repeatedly on my head. The he plopped off the couch, went to his room to play for a few minutes, then headed down stairs where he demanded to be fed. He ate for about 30 minutes. after which he began to run around the house for the next hour like he had never been sick. Of all the times we've dealt with sick children, that was the fastest, most remarkable turn around I'd ever seen, and it began with a short conversation with Courtney. I can only hope he had a similar effect on her.

Day 19 - Better than Day 18

2007-10-10T19:49:00.000-07:00

She smiled today. When I left her just after noon today, she had a smile on her face and said she felt good. That alone is an indication that her day was a better one. Here's what her sister Kelley had to say:

Hey everyone! I wanted to let you know....we are not avoiding calls! Sorry! I think just about everyone called today....and we were ASLEEP. :) Yup...great sleep. Courtney is feeling 100% better today and we took advantage of it....by taking naps.
We are just getting up and will go for a walk before dinner. So...if you call this evening, we should be awake and answering the phone.
They stopped her heavy duty antibiotic (she is still on one) and switched some meds up a little....so we are really hoping the worst is over. She probably will still have some stomach problems...but hopefully not as bad. This is day 14 since the chemo started. So...she is either right on the hump or just starting the other side of it! That is good.
Her counts were good: .1 WBCs, and her platelets and hemoglobin were high enough she did not need any blood products. She probably will tomorrow...but for today we are enjoying it. Everything else was pretty much the same. The doctor said we may see some blasts pop up during the recovery phase and not to worry...that does happen and does not mean anything. I really like Dr. Jordan's partner! So...that is my afternoon update! Going to get something to drink and we are going to take it easy.
love you. Kelley

Emma had a fever when I went to bed last night so I had her sleep with me. I let her sleep in, but since she was feeling fine and had no fever, I took her to school. Then, when I got home from work she had a fever again but still said she was feeling fine. She looked tired and felt warm so I laid her in our bed. Shortly thereafter she threw up. Apparently this is the 'feel good' virus. Usually vomiting causes a lot of crying, but, oddly enough, she laughed in the shower as the vomit was washed off her. Then she started singing, "What will you wear Jenny Jenkins?" I didn't even know she knew the words to the song. It was very cute, and I was glad she wasn't 'feeling' sick despite obviously being sick.

Unfortunately, being around and caring for sick children necessitates that I take extra precautions with regards to my visits to Courtney. So, the surest way of keeping whatever germs I have from being transferred to Courtney is to not visit her at all. That's easier said than done. The extra bed in her hospital room isn't nearly as comfortable as our bed at home, but I would give anything to be with her each day and night, even if that meant sleeping on the floor. Well, anything except leaving a sick child at home without a parent. I gotta go. A smiling Emma just came from her room covered in you know what.

Day 18 - Side effects

2007-10-09T22:56:00.000-07:00

Unfortunately, today was not a very good one for Courtney. She started off the day with really low red blood cells. Anemia - it makes you weak and tired. She didn't get blood until the end of the day. So, she should have plenty of energy in her dreams tonight. Hopefully she'll wake up feeling slightly better than this morning. However, that probably won't be the case. The crummy day ended on an even crummier note as her body decided her haircut wasn't short enough. Just when we thought she might be out of the woods with regards to chemo side effects, one more has to rear its ugly head.

"Cancer sucks." That pretty much sums it up. Sorry. I tried hard to think of another way to phrase that, but nothing seems to do it justice. Except for the outpouring of love we've received, there really aren't many good aspects of cancer. My heart goes out to everyone, young and old, who has ever had to battle it, in whatever form it comes in. It's a hard battle to fight; fortunately we don't have to fight it alone.

Day 17 - Mini Makeover Day

2007-10-08T19:31:00.000-07:00

I don’t know this first hand, but apparently, when you spend a lot of time in a hospital bed, it’s nice to have short manageable hair as opposed to long hair that’s easily tangled and requires extra maintenance. That’s why Courtney asked a friend to come to the hospital and cut her hair. It took a few days to coordinate schedules, but Courtney was finally able to get the hair cut she’s been dreaming of…for the last five days. I love it and she does too. Thank you Angela!

As for the reason she’s in the hospital, nothing has really changed. We’re well into the watch and wait phase of the treatment. Her WBC’s are 100 and she had a few monocytes show up. Dr. Jordan said this could indicate that her bone marrow may be coming back online. Overall, she had a really good day. While the medications make her somewhat loopy, they seem to really help keep the nausea at bay. Unfortunately, she’s not 100% free of the intestinal discomfort. That’s her main source of discomfort for the time being. And one more thing Dr. Jordan mentioned was that she’s likely on the downward trend of chemo side effects as they slowly dissipate from her body. Hopefully that means the worst is truly behind her.

Day 16 - Restless Nights

2007-10-07T22:57:00.000-07:00

Hospitals are not easy places to rest, especially when you’re sick, which I suppose would be almost always, if you’re sleeping in a hospital. First, you have your own discomfort to deal with. Of course, if you’re sick, you probably have discomfort of some kind. In Courtney’s case it’s been one after another – sore throat when admitted, surgery soreness, intestinal pain and blockage due to pain medication (kind of ironic), nausea from the chemo, dry lips and mouth from the chemo, more intestinal problems (this time from the antibiotics), fever, sore back from sleeping awkwardly and anxiety to top it all off. So, needless to say, she’s become very grateful for sleeping medications and pain medications and anti-nausea medications and anti-anxiety medications and anti-intestinal discomfort medications and chapstick.

Second, there are frequent interruptions. The nurses come in at odd hours to check your vitals, because, well they’re vital. They also come in at 4:00AM to take blood so they can have results early in the day. Your bladder interrupts your sleep, because when you’re hospitalized, you’re constantly administered IV fluid. And what fluids go in must come out. The IV pumps wake you up when their irritating alarm sounds because there’s air in the line, or the line has been crimped or the bag has emptied or for no apparent reason at all. Sometimes they just like to beep…but only at night.

Also, Doctors seem to enjoy visiting at the most inopportune times. In Courtney’s case it’s when she’s showering or sleeping. For instance, the infectious disease doctor decided to arrive this morning at 8:20. Now this may not seem so early, but when you have all the above conspiring together to prevent you from sleeping soundly, sleeping past 8:20 becomes very desirable. Anyway, the doctor didn’t seem to provide any new or valuable information other than to say it’s good that she doesn’t still have a fever and that he’ll be checking in on her from time to time, i.e. disturbing her sleep from time to time. But we’re grateful to have another doctor looking out for harmful infections.

So, other than the lack of adequate and sound rest and the aforementioned discomforts and a short nose bleed, Courtney had an OK day. I think, however, she’d rather be at home, Leukemia free. We can only hope for, pray for and look forward to that glorious day.

Day 15 - Aidan 2.1

2007-10-06T20:36:00.000-07:00

After a couple days and nights of up and down temperatures and uncooperating bowels, Courtney finally had a good day with virtually no fever and no cramps. So, we were able to do what we had planned: have a small birthday party for Aidan at the hospital.

Today was the day after his birthday, but, being only 2, Aidan didn't seem to mind one bit that we celebrated a day late. He's such a sweet kid. I took him to Walmart so he could pick out his own presents. I fully expected him to gravitate to some particular toy or two and not want to part with it, thus making my job of choosing his birthday gifts easy. However, every time he showed interest in a toy, he would cheerfully leave it alone when I said, "Let's go." The one time I want a kid to insist on keeping the toy, he doesn't do it. Nevertheless, I was able to pick out a couple he seemed to show extra interest in.

So, we loaded up the presents, the cookie cake my sister Ashley made and some party hats and headed to the hospital. Upon arrival to the family room on Courtney's floor, we sanitized hands, attempted to put masks on all the kids and sang "Happy Bithday" to Aidan. He then had a blast licking the frosting off his portion of the cookie cake and tearing the wrapping paper off the presents he picked out earlier. He still managed to act surprised even though he had just played with them in the shopping cart earlier in the day. He's so considerate!

Tomorrow, Courtney should receive a visit from a doctor that specializes in infectious disease. Her internist wants to make sure there are no detectable signs of infection of any kind after her episodic fevers the past couple of days. It's only precautionary, but were thankful for it as it shows the care and concern the doctors have for Courtney. The good news to date is that so far her blood and urine cultures and chest x-ray have all been negative. (Even though 'negative' sounds negative, it's really positive, because it means they didn't find any bad bugs swimming around in her blood or urine. Just in case anyone was wondering.)

Day 14 - Milestones

2007-10-05T08:49:00.000-07:00

Today marks two weeks since the official diagnosis at the oncologist's office. It's still hard to believe everything that has happened. Every day has been unique and every day has given forth a milestone of some sort. I think, maybe, that's helped the time go by rather quickly.

Today's milestones: Chemotherapy is finished and her blood results showed 0.0 WBC's and 2% blasts! I haven't been able to talk to Courtney yet this morning, but I received the following from her sister, Susan:

Corky is asleep-- it was a long night with lots of folks checking in on her. Her
temp went back to normal by 10PM, she finally received her platelets, but around
3AM she was starting to feel sick. Thank goodness for medicine! She was still running a close to normal temp until about 8:30 this morning, but after getting up, it went back up to 102. She's taken meds and tylenol to get it back down and is now resting.Now for the drum roll please....Her WBC are 0.0! Blasts are at 2%. They unhooked her from her last bag of chemo last night at 1:50am and it did its stuff! We did a quiet "woohoo!" last night and this morning when we saw her counts. The good news: it's working. The bad: she is probably going to feel crummy for a while.

Another important milestone for today is Aidan's 2nd birthday! Hopefully we'll get a chance to have a small celebration at the hospital tomorrow. I know this must be especially difficult for Courtney to not be home today. But, rest assured, we will make up for missed parties when she gets home!

Speechless

2007-10-04T21:27:00.000-07:00

I just received the following information from Michelle Miller:

_________________________________________________________
BLOOD DRIVE: Friday October 12th 8am - 4pm at the Roanoke Recreation Center. Please email Maclaine Robinson at Maclaine_bliss@hotmail.com to schedule a time to donate. Walk-ins are welcome, but if you're busy and need a specific time, email Maclaine and request a time that meets your schedule. Friday is a half day from school so please schedule accordingly. All the blood donated provides credits for Courtney's needs. Thank you to our city councilman, Kevin Stillwell, our city manager, Jimmy Stathatos, and to Ronnie Angel and Mike Arndt of the Recreation Center for offering the Recreation Center and for your assistance.

Celebrate Roanoke: (<-click for details) October 13th there will be a booth with information on Courtney at the corner of Oak and Travis from 9am to 7pm. Come by and buy a Courtney's Angels t-shirt to benefit the medical fund for Courtney. Donation boxes will be set up in different spots around the festival as well. If you would like to help Marilyn Walser make donation boxes or help her at the booth that Saturday, please email her at savedzero@yahoo.com. Click here for info about the t-shirt.

Garage Sale: October 13th hosted at the home of Emily Luna-Llanes in the Lost Creek neighborhood - 3408 Bandera Ranch. Contact Emily at comical5@1scom.net to volunteer to help.

Garage Sale: October 20th hosted at the home of Laura Fillmore in the Trophy Club neighborhood 558 Indian Creek Drive. Contact Allison to volunteer to help at allisonjpierce@yahoo.com.

Courtney's Angels Fund: with Bank of America. Go into any Bank of America and have them look up the Courtney's Angels account for you or give them acct #488009937521. If you'd like to transfer money, use routing # 111000025.

I am very grateful to live in the community of Roanoke. It is nice to see the town, the school and the churches pull their resources together to help a family as wonderful as the Flynn family during their time of need.

Thanks,
Michelle Miller
_________________________________________________________
I am at a loss for words to describe how grateful we are for all of the support we've received during this ordeal. I think I may actually wear out the word 'Thank-you' if that's possible. There really aren't enough ways to say or express gratitude. Please know that we are eternally grateful for everything. . .except for maybe the leukemia.

Day 13 - PM

2007-10-04T20:15:00.000-07:00

Well, one thing’s for sure, Leukemia keeps you on your toes, with no two days being alike. I truly thought today would be like yesterday – similar blood results, lots of visits from the nurses, a stroll up and down the hallway, an afternoon nap and a good night’s rest. Then she wakes up with a fever, not feeling well. Even though virtually every patient undergoing chemotherapy similar to Courtney’s, where the white blood cells are wiped out, experience fevers, precautions still have to be taken. That means more blood drawn for culturing (three days for results) and urine sample for the same thing and chest x-rays.

So, Courtney got to go on a field trip. It’s not very often that they let her leave her floor. Unfortunately, the field trip was to the hospital’s dungeon. OK, so it’s not a dungeon, but at night, when no one is around, it has to be one of the creepiest places on earth. Long narrow hallways, empty gurneys lining the walls and 6 ½ foot ceilings that make you feel much taller than normal. The first time Courtney made a trip down there, she was laying on her back as they transported her from the ER to her room. She commented on how eerie the trip was as she was rolled down the hallways so close to the ceiling. Well, radiology is in the dungeon, so she got to go there for her chest x-ray. The reason for the x-ray is to make sure there’s no infection or fluid collecting in her lungs. It’s apparently standard procedure whenever there’s a fever over 100.

After the trip, she was feeling a little better. So we took a walk down all four wings of her floor and ended with a short game of dominoes before she started getting drowsy. Shortly thereafter it was time for me to go home to have dinner with the kids. The day went by really fast. Actually, it’s hard to believe how fast the past 14 days have gone. That’s really encouraging since we're looking at another 14 days or more in the hospital. If the next two weeks go by as fast as the last two, we’ll be home in no time.

The last time I talked to her was about 7:30. She sounded tired and said she wasn’t feeling so well. Let’s hope and pray that she sleeps well tonight and wakes up feeling much better than she did this morning.

Day 13 - Mid-day update

2007-10-04T13:42:00.000-07:00

Susan (Courtney's sister) here with a mid-day update. Dr. Jordan is in here now giving Courtney a look over-- she is running a slight fever and her WBC counts are up marginally from 100 to 300, but he said 90% of patients get similar fevers and see a small rise in the counts before bottoming out completely.

Last night a small cheer went up as she was hooked up to her last bag of chemo at 1AM. I would like all of you to know that while there are the inevitable moments of anxiety, fear, and disbelief that this is actually happening; Courtney is keeping her spirits up, her sense of humor sharp and her resolve to beat this strong. Her room may be filled with drugs and machines to administer the life saving chemicals; but it is also filled with cards and photos from people that love and support her. She constantly has her care givers laughing as she recounts moments of her day that can only be classified as comical. And once she takes medicine to help her sleep, she will give a verbal warning that she is done talking and falling asleep.... only to start up again a few minutes later, usually with a giggle or two thrown in for good measure. I can't tell you how wonderful it is to hear her soft laughter before she falls into a deep and restful sleep.

Day 12 - Reality Bites

2007-10-03T21:58:00.000-07:00

The 'therapy' continues to progress as hoped. Her WBC counts are virtually zero. Her blasts are 8%. Her Hemoglobin was too low, so she received blood again. We really are at a point where it's essentially watch and wait. I think if we had to wait for a couple more days to know if the therapy is putting her into remission, it would be an excruciatingly long two days. Too bad we have to wait at least two more weeks!!

We keep saying to each other, "This doesn't seem real," and "this can't really be happening." I'm sure everyone confronted with a life threatening disease or trial has the same thoughts. But it's so much different when it's YOUR life. The one good thing about having a hard time believing that this is real, is that you don't feel the impact as badly. The disbelief somewhat lessons the shock and pain of it all.

Then there are the moments when "it's all too real." When you know with a certainty that you're dealing with cancer, and staying for weeks not days in a hospital, and getting chemicals pumped into your body. When you realize how bad it could be if not for wise doctors and a good hospital. When you know that the life you knew up until a couple weeks ago is moving along without you. When you feel the physical pain and weakness caused by the disease in your body. When you go days without seeing your own children. When you look forward to a drug induced sleep so you can escape the reality for a few precious hours and yearn to not wake up until it's all over.

Dream world: Courtney's taking a much deserved break - having essentially all her meals served to her in bed. Who doesn't want that?!

Real world: All her meals are hospital food.

Day 11

2007-10-02T23:27:00.000-07:00

More good news today, although I’m not sure if I completely understand it. But who cares? It’s good news and that’s all that matters. Dr. Jordan indicated that he was pleased to see her %Blasts go down from 85% to 16% today. What I don’t understand is that I thought the % was of her total WBC’s. And if her WBC’s are below 1.0 (at one point they were over 100,000), does it really matter if it’s 85 or 16 percent blasts? When I know the answer, I’ll share it. Anyway, if the doctor’s happy, we’re happy…for the most part.

Courtney wrote her first email today asking a friend to come and cut her hair. No, she’s not shaving it. (She just thinks it will be less maintenance and less likely to be messy when it’s shorter.) Well she cried a little when she wrote the message. The fact that she wrote anything at all is a sure indication that she’s getting stronger each day – physically and emotionally. Please know how much we appreciate your kind words, thoughts and prayers! We give thanks to a loving Father in Heaven for having you in our lives.

It helps so much to know that we’re not alone in this. And it helps to know that we have a Comforter in Jesus Christ:

11 And he shall go forth, suffering pains and afflictions and temptations of every kind; and this that the word might be fulfilled which saith he will take upon him the pains and the sicknesses of his people.

12 And he will take upon him death, that he may loose the bands of death which bind his people; and he will take upon him their infirmities, that his bowels may be filled with mercy, according to the flesh, that he may know according to the flesh
how to succor his people according to their infirmities.

We truly believe He loves us all. We believe His love is often expressed through the kind words, deeds, and even hugs of those around us. So, we thank you all for helping us feel His love.

Courtney's Angels - T-shirt

2007-10-02T08:17:00.000-07:00

Here is the final design of Courtney's Angels T-shirt. Thank you, Amy Pennington, Amanda Holcomb, Brandi Bryner and Meredith Breinholt, for a great idea and for making it happen!! Click on the shirt to see how they did it and how to get one.

Day 10 - Final Diagnosis

2007-10-01T21:17:00.000-07:00

Well we finally have the diagnosis we've been waiting for - Courtney has the M0 version of AML. What this means is that she has just three days left of Cytarabine and the Idarubicin is finished. It means that the doctors now have confidence that they're giving her the right treatment. It means that we have a clear and concise plan as to how to beat this thing. We've been firing out of all canons and now know that we can continue to do so confidently.

Unfortunately, this news didn't help Courtney's day to go much better. Though she's emotionally growing more stable by the day, evidenced by the fact that she was actually able to start reading the many wonderful messages that have been posted and sent to her, she's anxious about the side effects of the therapy. It didn't help that she had an hour long nose bleed. Tonight she fought to fall asleep saying multiple times that her skin was crawling. Who knows where that came from. It could be a side effect of one of the many medications she's on, or it's simply anxiety brought on by the diagnosis, the nose bleed, the upset stomach, the knowledge of chemicals being injected into her body, etc. I still can't imagine what she must be going through. She's sleeping now. She never snores, but is now. It's the first time in my life that snoring is music to my ears. It means she's in a deep sleep - exactly what she's needed.

Day 9

2007-09-30T22:26:00.000-07:00

I don’t know how she does it. In fact, I don’t know how most stay-at-home moms do it – especially during the summer, when the kids are home all day. While I could classify today as a ‘fun’ day with the kids, I’m exhausted. I truly have a newfound respect for Courtney. It’s not that I didn’t respect or admire what she did before. It’s just that now the respect is greater and the admiration deeper. I only wish it didn’t take such a crummy trial for that to happen.

After getting the kids to bed, I came to the hospital to spend the night with Courtney. She wants everyone to know that “getting the chemo is easy.” All she has to do is nothing…except endure a painful botched PICC line and the installation of tubes just below her collar bone. So far she hasn’t noticed any adverse side effects. Her nose was a little dry yesterday, but nothing some nose drops won’t help. She misses her bed at home, but at least she has her pillows. She says more than once a day that this just doesn’t seem real. I think we both have a hard time believing this is really happening. Maybe that’s a blessing. Maybe it’s easier to bear when the full reality or gravity of the trial doesn’t completely sink in. You try your best to suppress the negative thoughts and not think about the words ‘leukemia’ or ‘cancer’ or how long this all might last or the separation of your family, but they are impossible to keep away all the time. The uncomfortable hospital bed or the beeping of an IV pump or the sight of a bag of blood dripping into the IV all have a way of reminding you why you’re here.

As for the chemo, it’s still doing what it’s supposed to be doing. Her WBC’s have dropped to within normal range for the first time in almost three weeks. She still has neutrophils and some lymphocytes. That’s good. It won’t be long before everything is down to zero. What were really waiting for is for the chemo to end (hopefully by Friday) and her counts to go back up to normal, with NO blasts.

I feel like I’ve lied about the whole “she can’t see her kids anymore”. But truly, I believe prayers have been answered. Since she still has some bacteria fighting neutrophils, I brought the kids to see her again today. It was that or take them to church. I’m sure Heavenly Father understands. After all, it’s thanks to Him that the kids could come. It was a good visit as everyone got to hang out in a small family room and eat Subway that Courtney’s mom bought. I think being able to see the kids and spend time with them really lifts her spirits, and makes this whole thing ‘slightly more bearable’. That’s one notch above ‘unbearable’ on the bearability chart.

We can’t get over how well our children have adjusted. They really are helping us to get through this, along with those who have helped us to care for them. They still make us laugh (and cry and yell) every day. Case in point: This evening, as they were getting ready for bed, Emma and Miranda were arguing about whether Emma was poor or not. I don’t have any idea how it started. When Miranda walked away, Emma said, “Daddy, Miranda says that I’m not poor, but I am because I don’t own anything. Daddy, could you buy me something at the store so that I can own something. Because I don’t own anything…except a Dora blanket, and a Dora game, and another Dora game, and a Dora lunchbox. But that’s all, only some Dora stuff.” I tried to tell her that she has lots of stuff, like her clothes and her bed and other toys, but she didn’t buy it. She’s convinced that she’s poor. It made me laugh. It’s nice to be able to laugh at times like this. Thank you for the thoughts and prayers – they really are making a difference.

Day 8

2007-09-29T17:08:00.000-07:00

The therapy is doing what it's supposed to. Courtney's WBC's are down to 39,900, from 83,800 yesterday and a high of 102,000 when she was admitted. Within the week these should be down to zero. Essentially we are re-booting Courtney's immune system. It's like hitting Ctrl-Alt-Del on her bone marrow.

Since the bone marrow is also responsible for producing RBC's (red blood cells) and platelets, these will need to be given to her as needed. As such, she received both, blood and platelets today and will need more as the treatment progresses.

The main thing we want to see drop are blasts. The blasts cells are made in the bone marrow and are supposed to mature into different types of WBC's (white blood cells). Leukemia prevents the blasts from maturing, thus making them useless. They are included in her WBC count. Typically you want 0-5% of your WBC's to be blast cells. In Courtney's case they've been more than 95%. So, the good news is that the absolute count of her blasts dropped to 37,900 from 81,300 yesterday. Again, we essentially want 0 blasts.

At the end of seven days, her 'therapy will end and her bone marrow will essentially be allowed to 'power back on'. Then her WBC's will rise back up to their normal levels, with little to no blasts present.

So, all in all, it's expected, but good news. The other good news is that I was able to bring the kids to see Courtney today and spend some time alone with her. Thank you grandma, grandpa, aunt Kelley and Jimmie for taking care of the kids! We had a really nice visit and she's had a really good nap while I've been writing. Other than a headache, sore incision, upset stomach and leukemia, she's feeling OK. I wish she didn't have to go through this.

Courtney's Angels

2007-09-29T16:50:00.000-07:00

Just when I thought I might make it through a day tear free, I found this in my email box:

The church, the community, the neighborhood and the school have all given and expressed such great love and support for Courtney Flynn. We have gift cards from the school, care packages from the church, lunches from the women's Relief Society, lawn mowing by the neighbors and 2 garage sales already planned for the 13th and the 20th in Lost Creek and Trophy Club respectively. This has all been done in love and has been well received and appreciated. There could never be enough for such a wonderful person like Courtney and her precious family.

I wanted to let you know of an effort by some very talented women in Keller to make "Courtney's Angels" t-shirts for her benefit. We'll look forward to seeing those and I'll let you know when they're ready for purchase.

Also, we hope to bring news soon of a Blood Drive in honor of Courtney.

We know that so many people want to help and contribute in any way that they can so we wanted to make sure that everyone was aware of what was already taking place. Please forward this on to anyone that you know who is concerned and interested in Courtney and her family. They can give me their email and I'll be glad to put them on the Courtney's Angels email list.

Lastly, I have set up an account with Bank of America called Courtney's Angels where people can donate. So many people want to do something right now. They want to bring meals or clean the house and the Flynns are in the hospital and cannot benefit from those efforts right now. If you are restless to serve or feel you can only help monetarily, now there is a way for you to feel that you have helped the Flynns as they begin their battle.

Thank you to everyone,
Michelle Miller

The saying goes,"There's a silver lining in every cloud." And while this epsiode in our lives is much more than a cloud, the love and support from our families and friends have made linings much richer than silver. Again, thank you.

Day 7 - Watch and wait

2007-09-28T20:53:00.000-07:00

From what I can tell, Courtney had a pretty good day today, relatively speaking of course. And that's relative to the fact that she's confined to a hospital room with a nasty gash in her arm and a pair of tubes protruding from her chest delivering a fairly toxic chemical into her blood stream to destroy leukemic cells in her bone marrow that are trying their best to take over her body. Relative to her typical Friday, I would say that today sucked. Sorry, but that's the first word that came to mind and I couldn't think of synonym suitable to replace it.

Her doctor had told her that she could start feeling some side effects from the therapy as early as six hours into it. He also said that she may never really feel any. More than one doctor has told her that how she felt the week preceding her hospitalization should be worse than anything she feels here on out. That's good news to hear and exactly what we'll be hoping for. So far, no apparent adverse side effects.

The good:

Courtney's neutrophils count was near a 1000. They had been at 0 until today. That's really good news, as neutrophils are what help us battle bacteria, and though the therapy will more than likely take those back down, she at least has some protection in the mean time.
After receiving a unit of platelets yesterday, when they dropped to 12000, she's back up to 33000. Normal is 150,000 to 400,000.
Courtney was able to get up and walk around her floor. We want her to use her muscles as much as possible so they don't waste away during her hospital stay.
Jill and Frankie, from where I work at Dannon, brought us BBQ brisket from Railhead for lunch. Thank you!

The bad:

Courtney still has Leukemia.
We still don't exactly know which type of AML she has and have to hope she's on the right treatment plan.
Her blasts are still at 98%. We want it to be zero.
She didn't sleep well last night. She wasn't in pain and was relaxed, she just didn't sleep much.
She didn't get to enjoy the Railhead brisket, as her appetite isn't all there right now.

The ugly:

That nasty gash from where the PICC line had been placed. Although it is looking better day by day.

So, drop by drop, Courtney is receiving the chemicals that are going to help save her life. While the idarubicin is a bright orange liquid (Courtney was hoping for something that looks like that green glowing tube Homer takes home at the beginning of the Simpson's), the cytarabine looks like water. It's amazing that these exist. We're so grateful to the countless scientists and doctors that have worked so brilliantly to come up with these treatments.

Hopefully Courtney is sleeping by now, but in case she happens to be restless and reading this blog: Good-night Court. I LOVE you.

Day 6 - The 'Therapy' has begun

2007-09-27T23:34:00.000-07:00

Well, it's official. As of 10:52 this evening, Courtney has begun the harsh therapy that will cure her of this horrible disease. The plan as it stands now is to start her with doses of idarubicin for three consecutive days, starting tonight and cytarabine for seven consecutive days starting tonight. This phase, called the induction phase, usually lasts four weeks - one week of the drugs and three weeks to recover. The goal during this phase is to induce remission, meaning no detection of leukemic cells, and usually takes one to two phases to complete. A better explanation of this treatment can be found here - http://patients.uptodate.com/topic.asp?file=blod_dis/2244.

Once the therapy has begun, meaning now, Courtney will not be able to receive visitors except for adult members of her own family. And even they have to take severe precautions (thorough cleansing of hands and wear a mask) when visiting. This means our children won't be able to see their mother. Words cannot describe how difficult this has been, is and will continue to be. All we can do is endure this dificult time and look forward to the day we can all be back together and resume our lives as they were up until two weeks ago. We can get through this and will. "For our light affliction, which is but for a moment, worketh for us a far more exceeding and eternal weight of glory;"

Day 6

2007-09-27T13:18:00.000-07:00

It's 4:30. We were hoping to see Dr. Jordan around lunch time. But, it looks like we'll have to wait until 5 or 6:00. Also, the pathology report still hasn't come in. Courtney's nurse said she would show it to us as soon as it did. It seems like all we've been doing is waiting.

Her blood results indicated low plateletts, so she received a unit today. This really won't help her to feel better or be any healthier. It's more precautionary in case she were to get a cut or something.

Her nurse indicated that while Gleevec can be disolved in liquid, it doesn't need to be. She's not sure why there was confusion with the order last night. It looks like she'll just be able to swallow them from here on out. That's good news.

Courtney wanted me to add that she doesn't even know where to begin with regards to "Thank-you's." We're both just overwealmed with all of the support and outpouring of love. Today, a couple of friends from our church brought over a dozen gift bags of items including books, slippers, lotions, journals, puzzle books, gum, crayons, coloring books, etc. The prayers, the messages, the gifts, the visits, the phone calls, and the random acts of kindness and service all truly help to lift the spirits. They're the sugar that's helping the bad medicine go down...literally and figuratively. Again - Thank you, thank you, thank you!

Day 5 - Results are in but incomplete

2007-09-26T22:15:00.000-07:00

I'm sorry to keep everyone waiting. We waited for the doctor until it was apparent he wouldn't be coming until late this afternoon. Knowing that we had another day without the therapy beginning, Courtney wanted to take advantage of the day to see the kids again. So I went and got Kylie and Miranda out of school early (didn't have to twist any arms there) and picked up Emma and Aidan too. Just as we returned to the hospital, Courtney's sister, Kelley, arrived. We had a really nice afternoon letting the kids visit with Court again and hanging out with Aunt Kelley and Courtney's parents.

Finally, Dr. Jordan arrived sometime around 5:00. While we did get more answers, the diagnosis is not complete. However, the news we did get is relatively good. AML was once again confirmed by the pathology report. And, according to the phenotyping and genetic markers found thus far, Dr. Jordan said that they believe they've narrowed the AML type down to two of the possible eight FAB (French-American-British classification) subtypes: M0 and M3. He said that if he could choose any two of the eight to have, meaning the two with the best prognosis, it would be these two. M0 and M3 have significantly different treatment plans. So, until the diagnosis is 100% (hopefully sometime tomorrow) there will be no treatment. He did reassure us that this delay, so to speak, does not affect prognosis. Another bit of good news.

He did recommend starting her on an "unconventional" form of treatment tonight. There she goes again beating the odds. The medication/chemotherapy he suggested starting tonight is called Gleevec. It's typically used to treat Chronic Myologenous Leukemia (hers is Acute) and Gastrointestinal Stromal Tumors (GIST). The reason being is that Courtney's results contained a marker common to those. He's not sure why. He did say that the Gleevec has relatively minor side affects but could help lower her blast counts (that would be a good thing). So, we followed his advice. Unfortunately, as I was putting the kids to bed, I couldn't be here when she took it. But it sounds like it was not a pleasant experience. She had to dissolve the pills into a liquid (she chose apple juice) and drink it. She was still feeling nauseous from it when I returned. If anyone reading this has ever had to take Gleevec this way, and knows something better to use than apple juice, advice would be welcomed.

We still can't get over the outpouring of love and support from our family and friends. It truly has been tremendous. We only wish we could accept every generous offer. However, if we accepted every offer to watch and care for our children, we would be 80 by the time we saw them again. So we thank you all from the bottom of our hearts and we truly love you.

Day 4 - Until Tomorrow

2007-09-25T22:03:00.000-07:00

I'm sorry to keep everyone waiting. Just so you know, so are we.

One of Dr. Jordan's partners came to us just after lunch with very few answers. He told us that while there might be a chance of chemo starting tonight, it was much more likely to have answers tomorrow and that chemo would start then. So much for Monday. Still, we held out hope for this evening, but to no avail. I'm not going to complain, because I know how important it is that they're 100% sure of what it is before starting her therapy (sounds better without the chemo). It would be horrible if they started giving her a harsh drug, only to find out they were giving her the wrong one. It would be like putting in an expired catheter. . .only worse.

The worst part about the doctor's visit was when we asked him how much contact Courtney would be able to have with the kids once the therapy has begun. (It seems like we should have these kind of answers by now.) Well, he basically said "none" until her WBC's are well enough for her to go home, "which will be at least three weeks." Then he adds, "And your hair will fall out." Just in case the first part wouldn't make her cry. He and Dr. Adams must be part of the same Blunt Force club. Neither seem like putting things gently.

So, we brought the kids in for one last visit. They're taking everything so well. Fortunately, they don't have the best concept of time. But still, they seem to know that this is where she needs to be in order for her to get back to being herself, so they're OK with it. Like I said before, prayers are definitely being answered.

I have to share this, because it's so Courtney. The first couple of nights here, we had frequent visits in the middle of the night to check Courtney's vitals. (They're not as frequent anymore because she's been so consistently well). Anyway, almost everytime, Courtney groggily (even after being woken up at 3:00 AM) says 'Hi' with a slight but genuine smile and sincerely asks the nurse, "Have you had a good night?" I keep telling her that they legally can't give her more drugs just because she's extra nice, but she's usually out cold before I finish my sentence.

One more thing, a friend of ours who moved to Florida last year posted a nice message on this blog. I feel bad for admitting it, but I didn't know who it was - it only said Katy. Sorry, Ryan and Katy, I haven't forgetten you all. Anyway, I clicked on her name to see if it would have more information to help me figure out who it was. Well, it took me to her own blog site at which I was surprised to find an awesome message she wrote about Courtney. It's so sweet and so true that I have to share it. Katy, I hope you don't mind me directing people to your blog. Here's the link - http://thedillspiel.blogspot.com/2007/09/meet-courtney.html Thank you.

Day 4 - No News

2007-09-25T12:15:00.000-07:00

I'm sure everyone is as anxious as we are to get the final diagnosis. It's frustrating having to wait. So, since we heard nothing and no doctors have paid us a visit, we have to assume he'll be here tonight. It would just be nice to know for sure.

In the mean time, Courtney was finally able to explore her temporary home. She got up and took a short walk up and down the halls of her floor. Everyone here is very nice and sees to her every need. She is in really good hands.

We our so fortunate to be close to so many good friends. All you friends and family who wish they could be here right now to help care for our children, rest assured they have been well taken care of. I went to see them yesterday afternoon and they were all as happy as can be. I truly believe this an answer to a lot of prayers. As a parent, your first worry when confronted with an illness like this, is for your children and their well-being. It's such a huge comfort to know that they are doing well!

Here are some pics that I promised (The hearts are all well-wishes from the 3-12 year olds that Courtney helps with at church every Sunday. She's truly surrounded by LOVE):

Courtney and her brother, Christopher.

Day 3 - PM (Still Waiting)

2007-09-24T21:00:00.000-07:00

Unfortunately, we still don't know which version of AML we're dealing with. Courtney's doctor, Dr. Jordan, said that if he received confirmation of the AML type tomorrow morning, he would come in around lunch time to start the chemotherapy. If the results don't come until later, he'll come by in the evening to start them. Waiting is so frustrating. We just want to move forward so we can progress toward the cure.

Courtney's room has been transformed from a dull drab room to a very 'loving' colorful suite thanks to help of Courtney’s family and the 'heart'felt wishes of her Primary kids that she loves being with every Sunday. I promise to post a picture tomorrow.

We can’t tell you how much your hugs, prayers, well-wishes, messages of encouragement and love means to us. I’ve recently read a few blogs and care pages of individuals that I really didn’t know and hesitated posting a message because of that. Well, now I realize that whether they’re from someone you know or not, the messages truly help lift the spirits. So, THANK YOU!! We love you ALL!!!

Day 3 - AM

2007-09-24T09:15:00.000-07:00

They actually did the bone marrow biopsy first thing this morning. They came in at 8:15, started by 8:35 and were done by 8:50. Courtney's doing well. It was probably more painful than she would have liked. They gave her morphine and an anit-anxiety medication, but they only gave it to her about three minutes before they started. They work fast, but not that fast. I think they really kicked in just as the doctor finished. For the next biopsy we'll stress giving her a little time for the drugs to take effect.

The pathologist who performed the biopsy indicated that they might not have definitive results regarding her type of AML until tomorrow. So, we're in the process of digging in. Courtney's parents and brother just got back with all sorts of cool things to decorate her drab room with. We're doing everything we can to make Court feel more at home. So far it's turning out really cute. I'll try to take some pictures later today when Courtney is awake. Now it's just a waiting game.

End of Day 2

2007-09-23T23:11:00.000-07:00

Courtney finally got to see the kids for the first time since Friday morning. Everyone handled it really well. The kids especially had fun wearing the doctor masks and playing with inflated latex gloves. They can find joy anywhere! We explained to them that Courtney will probably have to be here for a while and that they will be spending the week with friends. Less than 10 minutes after arriving home, Kylie came to me asking for a larger suitcase because her 7 days worth of outfits, pajamas, and her Sunday dress wouldn’t fit in her backpack. She packs like her mother! Anyone who’s seen us travel knows how prepared we are, and that’s all thanks to Courtney. I’d be lucky if we got out the door with everyone wearing shoes. That reminds me; I brought Aidan to the hospital barefoot.

Courtney also finally had her failed PICC line surgically removed (something unheard of around here) and had Hickman Catheter surgically installed…twice. The doctor used the words “interesting” and “unusual” when describing the procedures. First, the PICC line had somehow managed to tie itself in a knot! That’s why they couldn’t manually pull it out of her. Imagine threading a tiny tube the thickness of a string into another tube the thickness of yarn and pushing it through along a guide wire. Now, imagine if someone told you they could do this and, in the process, tie it a knot. Impossible you would say. Well, I’m a witness. I swear (like the audience member who swears there are no trap doors or strings) that tube was not tied in a knot before it went into Courtney! Apparently miracles do happen. I think it’s a sign. Someday we’ll look back at this and know why it happened.

Second, they installed the Hickman Catheter, after which someone (probably a nurse), logged some information (probably serial number, lot number, expiration date, etc) regarding the catheter. Well, she noticed the catheter had passed its “use by” date! (Another thing unheard of around here, or so I hope) Apparently companies only guarantee sterility for so long. So out with the old and in with the new. Only the best for Courtney! We’re just glad it was only a catheter and not an artificial heart. I’m not sure we’ll ever know why this happened.

One other “funny” thing about today – they actually came in before her surgery to draw blood so they could determine her blood type! Since Friday alone, that was only two days ago, they have collected no less than 18 vials of blood from Courtney, with needles being inserted no less than 7 times! All of this to analyze her blood. And all of this after they told her that they wanted to poke and cut her as little as possible since her immune system is so weak. You would think that at some point they could have used a few drops of any one of those samples to determine her type. Also, Courtney delivered Emma at this hospital, at which time they checked her blood type. Surely they have that on record. I don’t think your blood changes types over time; but then again, as noted earlier, miracles do happen.

Courtney is resting well now, grateful I’m sure, that the day is over. Tomorrow is a big day. “First thing” in the morning will be her bone marrow biopsy. Apparently, “first thing” in hospital terminology means “sometime in the late afternoon”. Hopefully that only applies to weekends. Then, we should get a better indication as to which type of AML we’re fighting against. I don’t think it really matters, cause Courtney will beat any of them. If the type is confirmed, the full blown chemotherapy could start tomorrow afternoon. It’s hard waiting for this. It feels like we know where our enemies are coming from, but we just have to know what kind of shields they’re using before we can fire back with the big guns; all the while knowing that they continue to inflict damage. So, the sooner we can fight back the better!

One more note: Courtney on drugs – As I’m holding the computer for her so she can read all of the wonderful messages from you all, she asks why I’m “squishing it.” When I ask the obvious question, “Squishing what?” she responds, “The cake.” I’m not sure if that was an inside joke I was supposed to get, but I laughed anyway.