Day 9

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

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

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

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

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

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

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

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

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)

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

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

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.

Day 2 - Sunday, September 23, 2007

Today hasn't gone as expected or hoped. Courtney was supposed to have a minor surgical procedure to remove the failed PICC line. It appears that the PICC line either exited the vein instead of travelling through it, or never actually entered the vein. Dr. Young, the oncologist who visited her today, told us that she had never seen that happen before, neither had a surgeon that she spoke with. So, as Chris said, "Courtney remains being one in million." In any case, it's now 11:41 and were still waiting to hear from the surgeon. This is unfortuante, because we were hoping to have this done and past us, so we could bring the kids in to see her. Courtney wants more than anything else to be able to see her babies and spend a little time with them.

Last night Courtney's spirits were lifted by a wonderful priesthood blessing given to her by Bishop Jared Hall, Dan Perkins (whose family is doing a tremendous job taking care of our girls) and myself. In the Bible, James Chapter 5, versus 14-15 reads:

14 Is any sick among you? let him call for the elders of the church; and let
them pray over him, anointing him with oil in the name of the Lord:
15 And the prayer of faith shall save the sick, and
the Lord shall raise him up;

Courtney believes in Jesus Christ and loves Him with all her heart, and believes in the power of prayer and His ability to heal. That faith together with the love of family and friends around her, as well as the knowledge and expertise of the medical staff, will see her to quick victory over this ugly disease.

Courtney just had a quick visit from a few of her close friends, specifically the ones who are helping with our kids at the moment. And while we're saddened to know that for the next few weeks they won’t be in her hands, it’s more than reassuring to know that they are in good, loving hands.

Today’s results from the doctors include:
White Blood Cells up slightly to 78,000Blasts 72% (which means % of white blood cells are blasts - 0 - 5 % is normal)Red Blood Cells samePlatelets sameBlood work shows that leukemia is AML type, but determination that it M 3 can't be made yet.

The surgeon just stopped in and indicated he would remove the PICC and put in a Hickman catheter at around 4:00 this afternoon. Although experience indicates this will mean around 6:00 or later, this is still good news. At least now we know that Courtney can see the kids shortly.

More news: Courtney’s brother in law, who’s in Afghanistan, sent word to Courtney that they haven’t found Bin Laden yet, but they’re still looking.

Day 1 - The Battle Begins

In some ways today, the day after D-day, is better than the day before. The day before we had no idea what was going on inside Courtney's body. There was the dread that whatever it was it was bad, and she was getting treated. It was like being bombed without knowing where they were coming from, how destructive they were or how to fight back. A horrible feeling! Now, armed with knowledge, we can begin to fight back!

We have some updates: (borrowed from Courtney's brother, Chris)

Todays blood work results:
There was improvement. Big drops in white blood cell counts and her blast counts
WBC count dropped from 90,000 to 64,000. Yesterday they were over 100,000. Normal is 3,000 to 11,000
Blasts dropped from 84 to 56. Yesterday they were 94. Normal is 0.
RBC and Platelets remained the same, kinda low.
Dr. said that these improvements could be from the fluids, the steriods, and the effects of vitamin A (the chemo drug) working. Either way a good sign.
Also from Chris:
"Chemo terms I learned today: Blasts are immature white blood cells. These are bad because they don't do anything. (0 - 5 blasts are normal) First round of chemo is called induction - 7 days for first drug and 3 days for second drug - what she is in now, starts remission. Second round of chemo is called consolidation (keeps you in remission) 3-5 days in hospital. Probably she'll have at least 2 rounds of consolidation. She's waiting on the results of CT scan and for the PICC line. They are going to give her something for nausea so she can eat and take her pills - in my last email I said she took second dose of chemo at 10:45. She didn't actually take it because she had to get CT. Sooooo - now she's waiting for her tummy to feel a bit better before she takes her pills. There are 11 pills! More good news just in: CT results are totally normal!!!"

Her PICC (peripherally inserted central catheter) line didn't go in so well. It kinda got stuck, so now were waiting for a specialist to come in to finish the job. It's a fairly routine procedure that has these small complications from time to time. FYI, the PICC line is an intravaneous catheter that goes from inside of her bicep to the Supeior Vena Cava (SVC). It will be used to give her the chemo and to draw blood. The chemo is too harsh to have it injected through a normal IV.

Relatively speaking Courtney is doing well today. She's been able to rest a lot. They've given her anti-nausea medication (including the deep sea fishing patch) to make sure none of the important medication comes back up. She did have a small bout of nausea earlier today. Right now, we're just waiting for someone to finish the PICC.

Diagnosis Day

Longest/scariest day of our life (except for maybe when Kylie was born). With the help of Courtney’s parents who arrived the night before, we woke up in time to get the girls to school and Aidan to a friend’s house and arrived at the Hematologist’s office at 9:30. First it was fill out paper work, then wait, then CBC #4, and more waiting, then chest X-rays and more waiting. Waiting is never a good thing, but I have to say that it’s even worse when what you're waiting for could potentially be the worse news you’ve ever received. Then Dr. Adams came in. He greeted us, sat down on the exam table in front of us, stared Courtney straight in the eyes, and, without hesitating, said, “You have Leukemia.” He went on to say that he didn’t know what kind yet, and we wouldn’t for at least a couple of days, but that it was aggressive and she needed to go to the hospital immediately to begin treatment and to protect her from infections. “You will be there receiving chemotherapy for the next six to eight weeks.” Those words were almost worse than hearing the word Leukemia. Immediately it set in that, for a few weeks, Courtney wouldn’t be able to do the one thing she loves more than anything else in this world – take care of her babies.
Dr. Adams suggested we go to the hospital that was most convenient for the extended stay that we were facing. We opted for Harris Methodist, as it’s two blocks from where I work and we were assured we would be in very capable hands. Within an hour we were checking into the ER where they stuck her with more needles to get more blood. After more than two hours of waiting in the ER we were moved to the oncology floor, to a private room (that could definitely use a coat of paint with some color), where we will be spending the next two weeks.
They don’t know what type of Leukemia she has yet, but one form requires a strong dose of Vitamin A to kill the mutant white blood cells. Since the Vitamin A is relatively free of adverse effects, and since it’s better to start now than later, they’re giving it to her now. At 11:00 PM Courtney took her first dose of chemotherapy. This was chronicled by Courtney’s brother Chris who came up as soon as he could, bringing with him much needed support and levity.

The first night went about as expected. Restlessness, disorientation and lots of tears.

Courtney's Letter

Unable to verbally tell her friends what was going on, Courtney sent the following letter to her friends on Wednesday:

I wanted to let you know what is currently going on with my health. I went in for a routine wellness visit two weeks ago. My CBC came back with abnormal results. The results from the second CBC returned with further abnormalities. A third CBC showed yet more abnormalities. I know Laura will understand the results. I have an extremely high WBC (63+) with atypical lymphocytes, low and abnormally large red blood cells and low platelets. I have an appointment Friday morning to have a bone marrow biopsy. The possible diagnosis is Chronic Lymphocytic Leukemia (CLL). I know…. I can't bear to bring my self to say it out loud. It seems utterly ridiculous. I went in for a wellness exam. I wasn't feeling ill. Just the yearly exam. Then on Monday my doctor called with results from the second CBC test and told me she thought it might be CLL. I had already called her office and scheduled an appointment because I had a sore throat and thought I might have strep. I am in complete shock. I have been running a low to moderate fever since Sunday and feeling over all yucky. A possible result of the high WBCs. I keep hoping that the abnormal blood results are simply a fluke; anemia and a possible viral infection. But the CBC results and the opinion of the doctor at the Arlington Cancer Center is that I need the bone marrow biopsy done. I am not sure what all this will mean until I have the results from the biopsy (probably Tuesday or Wednesday). It totally sucks (for the lack of a better word) not knowing for sure and having to wait.

So even with out all the crazy Leukemia scare, I am not feeling well. I am sorry to let you all know in this lame e-mail. Right now, I have a hard time just talking about it. I continue to go back and forth between laughing because it sounds so crazy and tears because it has totally freaked me out. I am hoping that I will feel well enough to be at Church on Sunday. Obviously, I won't make it to tonight's meeting or be meeting with the parents for planning pack meeting on Thursday. Laura, would you help push the pack meeting planning along? Get the parents and leaders to organize the meeting. Here is an outline for the meeting.

This is the worst e-mail I have ever sent in my entire life! Please keep me in your thoughts and prayers.

Love,
Courtney

Thursday was a long day. All we could do was wait and pray.

Shock, Laughter and Tears

Courtney’s first reaction was laughter. After all, how absurd! There no way she could have CANCER. She went in for a routine wellness visit, was little anemic from the B-12 deficiency, and not she was battling some nasty virus and just had to ride it out. That was our mindset. The laughter quickly became tears as we considered the prospect have actually having leukemia and became fearful of what might lie in the future.
The next few days Courtney would battle feelings of shock, denial, and fear all the while holding onto hope that this would all blow over and by the weekend she would be back to her normal, energetic self. Each day became a bigger struggle as she progressively felt more ill physically, with the dread that what she was feeling could be the cancer eating her away inside. Results from CBC #3 from blood pulled on Monday’s doctor visit came back on Wednesday. They were worse. At this point we had a scheduled visit to a Hematologist/Oncologist on the following Monday (two days from now) but he agreed that he needed to see her sooner and bumped her up to Friday morning.

Best and Worst Day

Saturday, September 15, was a special day for our family. Our oldest daughter, Kylie, turned 8 on September 11, and thus had reached the age for baptism in the Church of Jesus Chris of Latter-Day Saints. (Courtney and I both joined before we met when we were 19 years old, but that’s a story for another day). So, in a beautiful ceremony in which Kylie sang with a friend, I was able to baptize her. After the ceremony I stood to share with our friends some remarks about Kylie. I briefly described how the day she was born was both the best and worst day of our lives. Kylie was born with a full blown Strep B infection that nearly took her from us the same day she came into our lives. It seems somewhat ironic now, that on a day in which I share dark chapter of our lives, the next dark chapter truly begins.
Saturday night Courtney and I took advantage of having my mom visiting and went out to see a movie. We saw Bourne Supremacy; great flick. Afterwards we stopped at Walmart to grab a few things. As we were leaving, Courtney commented that she suddenly felt sweaty – that cold, clammy sweatiness that makes you know that you’re coming down with something. Sure enough, the next morning Courtney woke up with a severe sore throat and mild fever. She was convinced she had strep, so first thing Monday morning she made an appointment to see our family doctor. Thirty minutes later, our doctor called back, not to ask about her throat, but to share with us the results of CBC #2. Over the phone she proceeded to tell Courtney that results had come back more abnormal than the first and that she was concerned that “she might have Chronic Lymphocytic Leukemia (CLL)” and that she would need more tests.

Wellness Visit

This chapter in our life really began when Courtney scheduled a wellness visit with our family doctor, Debra Krieg. She was hoping to get some treatment for a mild case of acne that was bothering her. Her original date had been set for September 13th, but I ended up booking a flight for my mother to fly in for a visit on that same day. We look back now and see what a blessing this ended up being. When Courtney called to reschedule the wellness appointment, they actually moved the date up by a week. A rarity with doctors’ offices.
So, on September 6th, Courtney went in for a regular check up that included a Complete Blood Count (CBC). The results came back a little abnormal. Her WBC’s were within range, but her lymphs ratio was a little high and she was slightly anemic. This was no concern for us whatsoever. For the past 10 years, Courtney has been unable to absorb Vitamin B-12 and needs a monthly injection of it. B-12 deficiency causes Pernicious Anemia. So, we figured that she was a little late with her injection, and since she had just received it, she was a little anemic. Nevertheless, Dr. Krieg ordered another CBC.
Courtney was rather irritated with this, since her first CBC had required about 6 pokes with a needle to finally get her blood, and she really didn’t want to interrupt her day just to be poked some more. But, she conceded, and on September 12th she went back for CBC #2. Results wouldn’t come back until the following Monday. September 13th my mom arrived as planned to spend the week with us.