The amount of celebrations and sorrows this past two weeks left me feeling like I got whiplash. Over and Over…. And over.
Joe had his biopsy and we were honestly really scared. Because his numbers were acting so similarly to last time and that the doctors were so eager to get a biopsy done we felt we needed to prepare for the worst. Arleigh and I drove up to Durham as soon as we could so that we could all spend some much needed time together. Thankfully we got the initial results very quickly were told that the biopsy was clear and there were zero blasts.
We were allowed a huge sigh of relief and able to relish in a movie night together as a family with a little less worry looming over. However the news did not come without a “but”. The specialist explained that both he and the pathologist had never seen a biopsy like Joe’s. (Not comforting) Apparently there were pockets of totally healthy well populated cells and pockets that were almost empty. When Joe told the doctor he was confused his response was “Good. If you weren’t I wasn’t explaining it correctly.” What we needed to figure out was whether the cells he had were his or from the donor. While they assumed they were donor cells, if they were not it would indicate total graft failure.
That was all on day two (after biopsy). Day three Joe was still feeling pretty crumby. I noticed that he seemed to be developing a cough and mentioned that I was worried. They ran a nasal panel to check for viruses. Day four, we found out he had the parainfluenza type 1 (the flu). The provider told us that this could be good news. While it was the flu, it was not one of the strains that were particularly harsh and it can cause a decrease in numbers. Day five, we saw a different provider, she explained that yes, this flu could cause decreased platelets, however because Joe’s numbers were So low it was not likely to be the only thing going on. We would just have to wait to see if he was engrafted to decide what was going on. When asked if things were “bad” she told us, they aren’t good, we just need the rest of the results to figure out how “not good” they are. So we waited for a few more days, and it felt like a lifetime.
We finally heard that Joe was totally engrafted. This was huge wonderful new, yet there was still not a clear explanation for why his platelets were so low. One thought was that part of the cause in the drop was the change in engraftment. Explaining that his numbers had gone up so well because his old cells were doing some of the work and now the new immune system took over and the platelets just hadn’t took off yet.
Eventually the attending explained that they had tentatively diagnosed Joe with Idiopathic thrombocytopenic purpura (ITP). This is literally a fancy way of saying his platelets were dying off for an unknown cause. They decided to try giving him a plasma based infusion called IVIG to try to stimulate the blood factory. If this worked they could do a few days of high dose steroids to support the work the infusion had done.
On Sunday he had his first transfusion of the IVIG. He also had a platelet transfusion (which he had been getting everyday for over a week). We saw a giant jump in his platelet count that day which made us cautiously hopeful. The next day his count dropped again, however it did not drop as much as usual and he did not need a transfusion. Yesterday he once again started making platelets on his own. They started him on the steroids and we hope to continue to see growth.
All this to say, it has been a crazy couple of weeks. Filled with high highs and low lows. I am emotionally tapped out. We do feel encouraged and hopeful to have seen positive results. However, after this and far too many other days filled with emotional whiplash I’ve realized a new prayer. That is that one day my hope will not feel guarded and that I will be able to dream for our family’s future beyond a few weeks or months and without caveats.
We were allowed a huge sigh of relief and able to relish in a movie night together as a family with a little less worry looming over. However the news did not come without a “but”. The specialist explained that both he and the pathologist had never seen a biopsy like Joe’s. (Not comforting) Apparently there were pockets of totally healthy well populated cells and pockets that were almost empty. When Joe told the doctor he was confused his response was “Good. If you weren’t I wasn’t explaining it correctly.” What we needed to figure out was whether the cells he had were his or from the donor. While they assumed they were donor cells, if they were not it would indicate total graft failure.
That was all on day two (after biopsy). Day three Joe was still feeling pretty crumby. I noticed that he seemed to be developing a cough and mentioned that I was worried. They ran a nasal panel to check for viruses. Day four, we found out he had the parainfluenza type 1 (the flu). The provider told us that this could be good news. While it was the flu, it was not one of the strains that were particularly harsh and it can cause a decrease in numbers. Day five, we saw a different provider, she explained that yes, this flu could cause decreased platelets, however because Joe’s numbers were So low it was not likely to be the only thing going on. We would just have to wait to see if he was engrafted to decide what was going on. When asked if things were “bad” she told us, they aren’t good, we just need the rest of the results to figure out how “not good” they are. So we waited for a few more days, and it felt like a lifetime.
We finally heard that Joe was totally engrafted. This was huge wonderful new, yet there was still not a clear explanation for why his platelets were so low. One thought was that part of the cause in the drop was the change in engraftment. Explaining that his numbers had gone up so well because his old cells were doing some of the work and now the new immune system took over and the platelets just hadn’t took off yet.
Eventually the attending explained that they had tentatively diagnosed Joe with Idiopathic thrombocytopenic purpura (ITP). This is literally a fancy way of saying his platelets were dying off for an unknown cause. They decided to try giving him a plasma based infusion called IVIG to try to stimulate the blood factory. If this worked they could do a few days of high dose steroids to support the work the infusion had done.
On Sunday he had his first transfusion of the IVIG. He also had a platelet transfusion (which he had been getting everyday for over a week). We saw a giant jump in his platelet count that day which made us cautiously hopeful. The next day his count dropped again, however it did not drop as much as usual and he did not need a transfusion. Yesterday he once again started making platelets on his own. They started him on the steroids and we hope to continue to see growth.
All this to say, it has been a crazy couple of weeks. Filled with high highs and low lows. I am emotionally tapped out. We do feel encouraged and hopeful to have seen positive results. However, after this and far too many other days filled with emotional whiplash I’ve realized a new prayer. That is that one day my hope will not feel guarded and that I will be able to dream for our family’s future beyond a few weeks or months and without caveats.
