Yesterday marked six months since Bo was diagnosed with Acute Myeloid Leukemia (AML). I can hardly believe we’ve spent half of 2019 on this journey with Bo and the majority of that time in the hospital for inpatient treatment. At times it feels like it has been such a long and difficult season of life, and at other times it feels like it has been a blur and I can’t believe six months have passed. It saddens me think that soon Bo will have spent half of his life going through treatments, procedures, chemo, and inpatient stays.
Today is an important milestone in Bo’s bone marrow transplant process. His Absolute Neutrophil Count (ANC) is over 500 for the third day in a row, meaning that the new marrow from his donor has officially engrafted and is beginning to produce more and more of the healthy blood cells he needs. In fact, today his ANC is actually over 1800, the highest it has been since the first week of April when he was diagnosed. These are all encouraging signs, but we also still have a long way to go and much that Bo’s body still needs to do to get through his first 100 days post-transplant and beyond. His body has been so stressed over the last two weeks and we are praying for rest and strength for him as we continue through some of the hardest days of the transplant process and recovery.
The last week has been one of the most difficult of Bo’s entire treatment. After a difficult and exhausting time last weekend where Bo was increasingly retaining fluid and experiencing difficulty breathing and resting, we are thankful to be in the ICU where he is now getting extremely close attention and 1:1 care from an amazing nursing team.
Yesterday was a particularly hard day in the ICU. Bo’s already high respiratory rate that has persisted this week was doubled most of the day while also battling a high fever that had fluctuated the last two days. It was clear that he was feeling very crummy and was getting exhausted. Thankfully, his lungs always sounded clear, his monitors showed he had enough oxygen in his blood, and an x-ray confirmed there was no fluid putting pressure around his lungs. However, the pressure from his enlarged liver and extra fluid all over was nonetheless making breathing very difficult for him. Most of the day it sounded like he was running a marathon, and we knew it was exhausting for him.
Watching the continuous monitoring of Bo’s vitals in the ICU, it is clear that he is happier, calmer, and more relaxed when we are holding him. It is a difficult proposition with him being connected to so many machines and monitors, but we spent the majority of the day yesterday holding him to help him rest and to keep his respiratory rate lower.
After coming off the continuous dialysis machine on Thursday afternoon, he was still accumulating more fluid than he was able to expel, so he was put on intermittent dialysis for a few hours on Friday evening. Due to medications, blood and platelet transfusions, IV nutrition, and nutrition through his feeding tube, Bo is still receiving a lot of fluids coming into his small body, all of which he very much still needs. Our care team here in the ICU decided yesterday that it would be best to put him back on the continuous dialysis machine on Saturday. He has been back on dialysis a little over 36 hours now, and it seems to be helping to make him more comfortable and remove some of that fluid that was still causing breathing difficulty.
Thankfully, today Bo is doing much better. He hasn’t spiked a fever in the last 20 hours, his respiratory rate is significantly lower, and he has been able to sleep soundly much of the day. Chloe is holding him while he rests peacefully right now.
As we mentioned a few days ago, one thing that is further complicating everything going on with Bo is that the CMV virus already in his body has reactivated due to his weakened immune system. For Bo, due to the sensitive and delicate time for his body post-transplant, he has not been able to take one of the anti-viral medications which had been most effective in suppressing the CMV virus for him in the past because it could suppress the growth of his new white cells. CMV could even be the source of his fevers this week. Our care team needs to help Bo’s body keep that CMV virus in check for the next couple of months until his new immune system is able to fully establish itself and do that job on its own. Thankfully, Bo is far enough out from transplant that yesterday he was able to begin taking the anti-viral medication. We are praying this medication is effective for him once again, but if not, our transplant doctor still has an encouraging plan B available through the research of one of her colleagues on the East Coast. We will share more about that option if our doctor ends up going that route.
Thank you for all of your ongoing prayers, support, and encouragement. We continue to feel so loved and carried by you all during this journey and are encouraged by every text, call, letter, or email. Please pray for deep and restorative rest for all three of us tonight and this week. Thank you!