Wow, I cannot believe it has been a whole month since our last blog post. Sorry to have been away so long. I know we post small updates on Facebook, but that is never enough to keep our friends and family really updated. It has been a very busy month and I am going to try to make sure I cover the important parts:
Idan had his first cold in over a year:
This was the scariest part of the month and had us very close to being admitted to the ER. Two weeks ago, on a Monday morning, Idan woke up with what appeared to be a cold. Now, post transplant patients like Idan receive regular infusions of IgG’s (antibodies), which can help Idan clear a common cold and certain viruses, but it can nonetheless quickly turn into a nightmare. Seattle was most concerned about the risk of this turning into a chest cold or pneumonia which Idan would have a much harder time clearing. Idan was running warm and the rule from our immunologist in NYC was that if he hits 100.4 we need to go straight to the ER. We had Idan’s immunologist confer with and prep the bone marrow team at Columbia to see what protocol they had and if we could bypass the ER (which is a germ infested place). Amanda stayed home from work as Idan’s temperature rose to 100 and it looked like we would be going in. As the day went on and Idan’s temperature hovered around the 100 mark, Seattle said they wanted us to go to the doctor to have a virus test done to know what we were dealing with. Thankfully, the fever went down the next morning, and the test results came back shortly after confirming he had the Rhinovirus, a.k.a. the “common cold,” and upped the temperature threshold for going to the hospital to 101F (which he never reached).
All in all it was a scary few days of feeling that we might be admitted any day (last time we were admitted in Seattle for a fever of 100.4 we had to stay for 8 days), and poor little Idan had been suffering with sneezes and a very runny nose. The strangest part about it all is that, because Idan has a Primary Immune Deficiency and has recently underwent transplant, we have been keeping him so safe and healthy that this was his first cold since the PCP last April! Luckily, by the end of the week, Idan’s cold symptoms went away and we were all able to relax a bit.
New Chimerism Results:
Last Monday we sent Idan’s blood to Seattle again and got the result on Friday. Once again very confusing results. As you may recall, last month we were upset to see his donor T-Cells drop from 30% to 15%, and this month they shot back up to 32%. This is very strange behavior and no one really knows what to make of it. Sadly, while last time his Myeliod cells held tight at 20% they have not dropped down to 13%. What this all means is still not known, except we do know that Idan’s donor graft is struggling, and may ultimately fail. But we are holding on tight to our sliver of hope that, if he can hold on to that 32% of donor t-cells, he has a chance at a cure and we would not need to transplant again. So we are still praying and hoping it sticks. Nothing changing with any of his treatment course, and we still hope we can get him off the steroids for the GVHD in the next month or so.
Moving, growing, thriving:
The other big news of the month, and what has kept us very busy is that we moved apartments last week. Since Idan got sick we knew we would need a larger place for him to grow and run around in. A one bedroom is okay for a baby, but not for an active toddler that can’t go to the playground and spends most of the day at home. Luckily, a larger 2 bedroom apartment opened up in our building and we did not have to move very far. Idan is loving the new place. We painted his room colors he chose and he runs around playing hide and go seek and enjoys exploring all the nooks and crannies (still unpacking so there are a lot of them). Idan has also been talking more, putting together sentences and thriving like most boys his age. We are extremely grateful that he has not missed a beat even with all the medical care and constant medical treatments he has to endure.
Next month Idan is turning two and we are very excited (and unbelievably fortunate and blessed) to be able to throw this incredible little boy an intimate birthday celebration for him with close family in our new home.
Hope we can update again soon. Make sure to follow Idan on Facebook.