Gratitude

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

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

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

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

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

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.

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

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

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

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.