D + 33

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

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

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

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

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

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

- Matthew 21: 22

D + 32 - Hoping for better days ahead

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

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

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

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

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

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

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

D + 27 - Progress - slow but steady

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

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

D+17 - Almost home

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.