Day 420: It’s Been A Tough Month

It has been two months since our last real blog update. We’ve been updating Idan’s Facebook page more regularly, but it has been a few weeks since we shared any real news. Sadly, it has been a rough few weeks and neither Amanda or I have been in the right place to put it all down in words. I will jump right in then:

We came back from Seattle at the beginning of November (after spending most of October there) with the hope of saving Idan’s failing graft.  After putting Idan through more chemo, several long fasting days, dozens of pokes, a PICC line surgery, and a second DLI this October, we checked his chimerism again right before Thanksgiving and did not get good news. The DLI did not work, and his graft is still failing. We were heart broken. We were faced again with the options as before: risk a third DLI or do nothing and start preparing for a second transplant. After many conversations with our Seattle doctors, family and NY doctors we are no closer to making a decision but we have decided to wait for another data point next week to see how fast the donor graft is falling. A third DLI would be at a higher dose, comes with high risk of GVHD, and, given our track record, has a minimal chance of working.  A second transplant also comes with more risks than the first one, another long stay in Seattle away from home and our family, and the possibility of rejection.

What has made things harder this month has been the fact that Idan has spent most of the past 4 weeks sick with a cold. Every parent of a toddler dreads when their child is sick, but for us there is always the added stress of being one step away from the ER. Like with a newborn, any fever above 101 or requires doctor visits, blood cultures and a good chance of hospitalization. While Idan can fight a cold virus with the help of the weekly antibodies infusions we give him, any cold can all too easily turn into a pneumonia and we always need to rule out an infection.

Idan has been getting stronger and better at fighting us off when we try to take his blood and there have been way too many blood tests this month. We cannot wait for a time where we can space out these tests and hope and try to keep him safe so that we can avoid unnecessary colds and infections.

The good news is that Idan is still growing, developing and thriving and has an endless amount of energy. He has been talking more every day, and we potty trained him over the Thanksgiving weekend and he has been golden ever since (no pun intended). He has grown an inch and a half since November 1st and he has been developing his art skills along with his imagination.

All we can wish for is a better and healthier 2015 for Idan and the rest of his little Hyper IGM counterparts around the world who inspire us with their bravery and perseverance.

Wishing you all a happy holiday season and a happy and healthy new year!