So Mondays clinic visit was our shortest yet! Under three hours! SAMs numbers have all skyrocketed which is so crazy to see! When you live for months with 0 or almost 0 numbers constantly worrying how far to push until the next transfusion, numbers near a normal range almost seem unreal. The docs warned though that this is a positive side effect for Sam of the steroids and if we can safely taper down, her numbers will drop a bit but they really should stay stable enough at this point to be transfusion free.
So I asked bedsides graft vs. host , what other things could the steroids be holding at bay that were eating up her platelets before. When the answer came, I immediately wished I hadn't asked. A "long list of other autoimmune processes/ diseases" was the answer. One of those "whole other can of worms" responses we have gotten along this path that opens up new possibilities you never want. Since we don't know what caused Sam's aplastic anemia in the first place, we have always been nervous that whatever this underlying process is could return. Post transplant, aplastic anemia patients are ar higher risk for the disease to clonally evolve into things like MDS, PNH, and other cancers. But many AA patients go on to live healthy, disease free lives. This is obviously our hope for Sam but the fear of "something else" coming along is truly debilitating at times.
So for now, we are down 25% on our steroid dose. If numbers look ok Thursday, hopefully go down a bit more. Some kids have trouble tapering off steroids with muscle/ joint pain, headaches, vomitting. That's the reason for the taper in addition to monitoring to ensure her platelets don't start dropping again. I will be happy to be off these hopefully in a few weeks though as the mood swings, night sweats, trouble sleeping, and hyperactivity is certainly a challenge. In all honesty though these are tolerable but the long term effects of the steroids are what scare us more. Growth problems, bone brittleness, joint damage, anxiety issues etc. No one really knows how long it takes for these sort of side effects to take hold, but with a little growing body that has been poisoned enough, if her numbers can stabilize without, we can't wait to get these off our mile long meds list:) PS despite eating better, the docs say she is their first patient that has so far not gained any weight on these... Of course! She really is eating more but I think it's just that she's going a mile a minut always and can't keep it on!
We have continued to receive so much love and support in all forms! Old friends and high school swim/dive teammates of mine organized an adorable gift box for the kids! Kaeden hasn't stopped coloring in his new super hero workbook for a week! Gramps visited and we put him to work around the house per usual and he actually got to eat some decent food for a change with the donated meals from the school group members! Now our extended family can also send their appreciation for this kindness because they are saved from my cooking:) We have tried to start our thank you notes and I hope those have been received as we roll them out. PLEASE know if we somehow miss something along the way or something seems to go unnoticed, it's not! Everything, no matter how small you think... Texts, emails, blog messages, voicemails, magazines, rides, cards, books, food, play dates... it all has been so incredibly thoughtful and we couldn't be where we are without this support.
Again hoping for steady CBC (blood) numbers while also tolerating a steady taper of steroid! Until next time...
It is always so wonderful to hear the positive news. Try to focus on that and thanks for sharing them with the rest of us who cling to every post. Samantha is fortunate to have a great team with her throughout this, headed up by you and Brandon and Super Kaeden. Blessings and love to all of you. The Tansys
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