One last day of chemo on Monday and then hopefully to Cincinnati on Thursday for her biopsy.
It appears that many of you may have heard by now that Alyssa has found a donor for her bone marrow transplant. This journal entry may get more technical than you care to read about and I can guarantee that I will not get all the facts correct, but here’s my best shot...Yesterday we had a conference call with her transplant doctor, Dr. Nelson, where he told us about her donor. To recap, back in October, our entire family was DNA tested. The obvious ideal donor would have been one of her 2 brothers. We found out rather quickly that neither one of them was a full match. She was immediately placed on the national registry to find an unrelated donor. Multiple donor drives, primarily at WKU, were held for her, to increase the odds of her finding a perfect match. A perfect match is when the donor matches on all 10 of the human leukocyte antigens (HLAs) of the recipient. The odds of finding a 10/10 are DNA specific, and certain ethnicities have a higher probability of finding a perfect match. Caucasians of European descent have the highest probability of a match simply because there are more people with that ethnic background that have registered. Shortly after Alyssa got on the registry we were told they had found at least 2 possible donors, both of which were 9/10 matches. Not perfect, but according to her doctor, close enough to move forward with the transplant plans. Before going to transplant, they ideally want Alyssa in remission. This has proven to be a bit tougher than normal in her case. While her cancer was responsive to 3 rounds of chemo, it was still not in remission. On December 26th, she started a 28 day round of immunotherapy. She will get a bone marrow biopsy on January 24th. Prayers that this drug will finally put her in remission. If she’s not, they will repeat another 28 days on the drug. Because Alyssa’s cancer has been hard to treat, they are looking at every option to give her the best odds of a cure through the transplant. There have been a number of recent studies, especially one that just was published last month, that show a related (family member) “haplo” (meaning only a half match) is a better option than a non-matched, unrelated donor. In fact, the results from this study show that the outcome was just as good with a Haplo donor as it was with a 10/10 match. So, since she still doesn’t have a 10/10 match, and her transplant could possibly happen in the next 3 weeks, they need to move forward with the best option they have. Alyssa’s “Haplo” match isn’t one of her brothers...it’s her dad. And if you were not expecting to read that, well, needless to say, we weren’t too prepared either. In some weird, DNA themed plot twist, her dad is actually an 8/10 match for her. In theory this is obviously even better than a 5/10 match (which is what would happen in probably 99% of a non-matched family member). When I asked how a parent could be more than a 50% match... the answer was “you and Eric have some of the same typing. So each of you gave her half, but some of the ones you gave her, Eric also has”. The first concern we had about the donation is Eric’s age. (He’s 57 next month). Dr. Nelson assured us that they can “filter” his stem cells and that it won’t be an issue. (You actually stay on the registry until you turn 60). So Eric will join Alyssa in 2 weeks up at Cincinnati Children’s to undergo pre-transplant testing. I can’t tell you why we didn’t know earlier about him being an 8/10 match. All I know now is that her entire transplant team agrees that this is the best route to go. I can’t speak for Eric, but while I know he is thrilled to have the honor of being her donor, he’s nervous about his part if the outcome is anything less than a cure.
Honestly, when I think about the last 5 months, it only makes sense that it would end up this way. For those of you that personally know Alyssa and Eric, you must know how alike they are. Their competitiveness, athleticism, the “I’m not here to talk about my feelings” ...they are literally the same person. So, we hopefully move forward with this transplant next month and pray that these doctors know what they are doing. I’ve never felt more out of control, but yet I have to trust that God has this one.
Alyssa’s GVHD did not show much improvement when she was switched back to prednisone. Decision made to up dose to 30mg daily. This was about a week ago. Her skin was still a mess, no energy, freezing all the time. She also tested positive for 2 separate viruses, EBV and HSV. These are very common viruses that most people have and don’t even know it. But once they are in your body, you will always have it, but they are almost always dormant...until they “wake up” and realize you have no immune system to fight them. Then they go crazy. EBV was treated with a Rituxin infusion (she’s had this before, back in May, same treatment). The HSV was another story...it produced these horrible open blisters all over her body that were extremely painful. On Wednesday, the pain got so bad they needed to admit her to get her on a PCA (pain pump). They also started her on an IV form of an antiviral for the HSV. I’ve never seen her so bad. When she starts crying, I know she’s in serious pain. Flash forward 48 hours to Friday...they got her pain under control, the medicine started working and there was lidocaine cream for the blisters that in Alyssa’s words was a “game changer”. On top of that her skin GVHD is clearing up beautifully. She literally went from one of her lowest point to the best she has felt in months, all in 2 days. She had a picc line inserted on Friday, because we were going to have to finish the 14 day course of IV med at home. No problem, we’ve done that before. PCA removed on Saturday and here we are on Sunday just waiting for discharge papers.
As much as I’d like to say that she’s finally turned the corner, I can’t bring myself to think it. She’s been here before (although nothing like where she was at on Wednesday. That was just plain scary). It’s like PTSD. I almost feel like I can’t enjoy these victories because something always seems to be lurking around the corner. I hate being like this and hopefully this anxiety will ease over time. Alyssa is feeling better today than she has in over 4 months. I need to feed off her energy. She’s in a good place and I’ve got to re-learn how to be hopeful and optimistic again. I know I’ll get there eventually.
On a separate note...for those of you who still are not taking this social distancing thing seriously... it’s time. There’s no excuse for being so selfish. While we were in the hospital, a story broke that 18 Children's hospital employees tested positive for Covid-19. Mind you there’s not one Covid-19 patient being treated here. So these were all people that somehow picked up the virus and then came to work...in a hospital...with the most vulnerable people that absolutely cannot afford to be exposed to this virus. Of course, they never meant to intentionally spread this, BUT when you make a reckless decision to disregard medical advice TO STAY HOME, it puts people at risk. So please, please, do the right thing.
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