Seems like we should be further along with this whole process. A lot has been accomplished but still, no firm diagnosis. Allistaire did great with last week’s endoscopy, BAL (lung wash) and lung biopsy. Thankfully her remaining IVs were able to be put in after she was put to sleep with a mask so she didn’t have to go through that terror. Nearly every “traditional” location was used though in those three days. Unfortunately, you can’t typically draw out blood from an IV so that means a poke in another spot. Waheed, the roving IV-Team guy, assured us he’s an expert in drawing blood from veins in the head – I think we’ll pass. The only wee complication from the lung biopsy was a small pneumothorax which is an air bubble between the lung and chest wall that can occur as a result of the needle biopsy. She had x-rays done on the portable x-ray machine one hour and several hours after the procedure to monitor it and because it was so small and didn’t get any larger, they were not concerned. Were it to be a large one, a chest tube would have been required to drain off the air, otherwise you get a collapsed lung. The one scare from my perspective (not the doc’s) was that her platelet count and hematocrit dropped slightly in Friday’s labs from Monday. The platelets went from 220 to 188 and hematocrit went from 39.6 to 36.6. These really are still great numbers and not a huge drop, but Allistaire’s platelets really never drop below 200 and her hematocrit likes to stay consistently up near 39/40. I am always on the alert for a downward trend which hails the terrifying possibility of relapse.
By the end of the day on Friday, a hypothesis was beginning to form as more and more test results came trickling in. I wish I knew how many tests for viruses, bacteria and fungi were conducted. Even for just one type of fungus such as aspergillus, a common culprit for fungal infections, multiple different testing methods are required. Twice in a week I’ve had to drop off a stool sample to the hospital lab late in the evening. One thing that I want to say as emphatically as possible is this: Pathologists deserve lots of love and credit! They are those invisible folk whose work is paramount to absolutely everything in Allistaire’s treatment. The often mundane and yucky work done in the lab is the foundation of so many decisions the doctors make. Test after test came back negative. There’s been no evidence of bacterial or fungal infection and thankfully, no evidence of leukemia in the lungs. But that leaves the big fat question of what is going on then? The other outlier question is how this high eosinophil count is connected. Dr. Pollard called late on Friday to say that the working idea is that Allistaire has BOOP (Bronchiolitis Obliterans Organizing Pneumonia) or more recently named COP (Cryptogenic Organizing Pneumonia). This is a non-infectious pneumonia that is actually, in someone like Allistaire who has had a transplant, a form of GVHD (Graft Versus Host Disease). Treatment for this organizing pneumonia is steroids for a month or two and then a taper. Because steroids come with their own host of bad-news side effects, the doctor’s are being very cautious and careful in making this diagnosis. For this reason, while the pathologists at Seattle Children’s have finalized their report as of this afternoon, the samples will be sent over to SCCA tomorrow and examined. COP is a relatively rare disease but fortunately the pathologist who will be going over all of Allistaire’s data has been a pathologist at Fred Hutch for 40 years and has pretty much seen everything there is to see. Again, thank you Mr. Pathologist, for your amazing long-term commitment to this field – your expertise is an amazing gift to us!
Another component of considering what treatment will be needed, was that Allistaire had to be examined today for signs of active GVHD by Joan at SCCA (Dr. Carpenter was out-of-town today). There may be a very low-level amount of GVHD on her scalp that has been sort of crusty for the last month and a tiny amount in her stomach as shown in the endoscopy biopsy. Thankfully, these are so minimal that they do not require treatment. I was delighted to hear Joan declare that Allistaire looks really, really good and that there is no evidence of GVHD in her eyes, ears, mouth, joints or the majority of her skin. Such a blessing and gift it is that she has done so well so far. Her type of transplant, that of a peripheral stem cell transplant rather than a whole marrow transplant, is well documented to produce the worst and most chronic GVHD. I can only guess that this type of transplant which was required as part of the clinical trial protocol, also has the best shot of creating GVL. Of course, I am only guessing with my crude knowledge of this whole complex world. The other news of the morning was that Allistaire’s platelets and hematocrit are at least stable at 185 and 37 respectively. It was a tremendous relief to me that they had not gone down. I was so hoping that they would just rise to their preferable lofty heights so I would have no cause to worry and far less need to cling desperately to the Lord in prayer, but wouldn’t you know it, I think He actually wants me to depend on Him. Geesh.
So as things stand now, late on Monday night, May 12th, the hope is to have a finalized pathology report by Wednesday afternoon, and thus a firm diagnosis. Dr. Carpenter will be considering Allistaire’s case and assuming this really is COP, he will determine what dose and sort of steroids he will prescribe. The goal is to give the lowest dose possible that is still effective. They will be looking into whether or not inhaled steroids would be sufficient as this would be a better option than a systemic steroid such as prednisone which is taken orally. There is of course the very negative side effects of steroids, but there is also the issue of their impact on Allistaire’s ability to fight cancer. I was comforted to learn that because Allistaire is nearly a year out from her transplant, she has already had the majority of the GVL (Graft Versus Leukemia) effect of her donor cells and they are now far more fully established than earlier in the post-transplant phase. This means steroids at this point will not be as detrimental in terms of them suppressing her ability to fight any remaining cancer cells. On the other hand, should she relapse, it seems she could be disqualified from a number of trials for being on immune suppressants (steroids in this case). Of course, the eager hope is that she is still in remission and will have no need of further clinical trials. And dare I say this, I was told today that if Allistaire makes it past one-year post transplant without relapse, her chances for relapse diminish drastically, down to 10%. Now, numbers, statistics, they’ve proven to in no way dictate Allistaire’s course, so I hold such info quite lightly, knowing she is her own complicated cancer case. More importantly, it is God who holds Allistaire’s life and He is not swayed by statistics. He will do as He pleases which is both terrifying and glorious.
Should all go as hoped, we will have a diagnosis and treatment plan by Wednesday evening and can head home on Thursday. This would be SO amazing! Joan says Allistaire doesn’t need to be seen again and doesn’t need any more labs until we return from Allistaire’s Make-A-Wish trip to Disney World which looks like it really might actually happen!!!! I can hardly believe it and I probably really won’t be able to until we are on that plane. In the far periphery of my mind is the joy of imagining the look of shock and joy on Allistaire and Solveig’s faces when we tell them that we are going to get to go on this amazing, magical trip. Again, almost too hard to believe. We are scheduled to return from the trip on Wednesday, May 28th. Then a few days later, on Sunday, June 1st, we’ll have to turn back around and head to Seattle for all of Allistaire’s one year post-transplant testing, including a bone marrow test on the 3rd.
I was so anxious about this trip to Seattle because I feared we would become entrapped here. That’s just what happened. Fears confirmed. I am not actually crazy and no, she’s not fine just because she looks fine. But, so far, it looks like we might escape true imprisonment. I leave that fear for June and that looming bone marrow test. I will tell you, it was the strangest experience to go back to the Cancer Unit – a place I have only visited once since Allistaire’s discharge last July and a place she has never entered again until last Thursday. It is a clashing of homecoming and revulsion. There were SO many faces that are just dear, dear to my heart – nurses and the Unit Coordinators and Natalie from the bone marrow team. Amazing, incredible people who have become painfully and delightfully woven into our lives grace those halls and rooms. The light and colors there are beautiful. I may have nearly forgotten how to work the fancy new TVs but I have not forgotten the deep, pervasive sorrow and fear of life in that place. You do not ever get over hearing a baby crying on an oncology floor. Babies should not have cancer. As I lay in that strange fold-out bed couch thing in the early morning, I remembered the countless mornings, nearly 250 times, I rose to meet numbers on a page, those blood counts, that decreed the course of our lives. And I prayed and prayed that this would be the last time I lay on one of those beds. I have not figured out, in all this time, how to love Allistaire less. Rather it seems I cannot get enough of her and as she grows and times passes, I love her more and more. My grip on her seems no less. Help me to love you more then Lord, I cry out. Help me more and more love you and hope in your goodness and your plan for my life. Help me God Above to put my hope and faith and trust in your definition of life and victory that so very far surpasses mine.