D+17 - Almost home

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

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

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

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

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

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

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

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

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.