The past two days have been anxiety filled. Instead of decreasing to zero, Ezra's lymphocytes, while still low, were increasing. Not what was supposed to be happening. He should have been at zero by Day +2 and he should have stayed that way. When they looked at his lymphocytes more closely, they were T cells, the type of cell that can cause rejection of the donor cells. With the numbers increasing, the doctors started to get concerned and began running more tests. They even started talking about the transplant failing, one of our worst nightmares. Panic time. The first news to come in today was that the majority of the T cells were Ezra's and not donor cells - that was bad news. Then they ran a test to see if the T cells were "activated." Thankfully, late this afternoon, the results came in that the cells are not activated and are basically dead cells. Good news and everyone took a sigh of relief.
His lymphocytes went down a bit today, but they still need to continue to stay down until we know it's time for the new donor cells to appear. So we will be waiting and watching.
We also had a scare when Ezra woke up from his nap yesterday with a huge bruise on his hip that came out of nowhere. A quick CBC showed that his platelets had dropped drastically. Within an hour, we had new platelets from one of Ezra's super donors and the bruise is starting to heal. And today brought signs of mucositis, a common side effect of high dose chemotherapy. Ezra has mouth sores and is gagging on the mucus in his throat. He is still being to be a good sport and trying to eat, but it is painful for him. These issues usually don't resolve until the new cells appear, so we may be facing a couple of weeks of mucositis. On a positive note, the doctors had expected these symptoms to appear last week, so we're one week ahead of the game.
The theme of the week has been space shuttles. Ezra LOVES space shuttles and watches You Tube videos of launches endlessly. During our first miserable weeks here, he wanted nothing to do with space shuttles, but his love for them is back in full force (shout-out to Ezra's girlfriend Shayna and her parents for the awesome new space shuttles). Everyone who walks in the room has to watch a launch. The past few days have certainly felt like a space mission - we are definitely exploring uncharted territory for now.
Hang in there buddy!
ReplyDeleteThinking about all of you :)
Glad that the T-cells are not activated!
ReplyDeleteKeep staying strong and we'll keep praying for Ezra and the whole family.
Lots of good thoughts for you here in Fair Lawn!
What an emotional roller coaster. Glad the last news was good. Thinking of you all
ReplyDeleteThinking about you guys constantly here in St. Louis. Sending you lots of love and prayers. Try to enjoy Shabbat and Shavout as best you can under the circumstances. Hopefully, Ezra can get some ice cream over the chag.
ReplyDeleteBy the way, does he have favorite Disney characters or other cartoon characters he really likes? Want to send him some more stuff.
Love from the Woolfs
If there is anything we can do don't hesitate to ask.
ReplyDeleteAs a mom of little boys, I feel your anxiety. Davening for Ezra's complete recovery, and so impressed with your personal strength and Ezra's awesome attitude!
ReplyDeleteWe'll keep davening for Ezra! You guys are incredibly strong parents!
ReplyDeleteWow. You guys, and especially Ezra, are so strong and amazing. Thinking about you all the time and praying for a full and complete recovery. Love, Marisa and Jason
ReplyDeleteGlad to hear about the T cells being dead. How scary. He looks great. Maybe one day Ezra can come visit. We live forty minutes from Kennedy Space Center. That would be fun!
ReplyDeleteThis is such a scary time. Hang in there, guys! You are all amazing and have our thoughts and love.
ReplyDeleteJodi, Dan, Rosie & Livi
Ezra is in our prayers. Thinking of you and your family everyday. Robin, you are so strong!!
ReplyDelete