Month: March 2017

Day 227: Finally, some good news!

For the past five years, we have watched our baby boy suffer in so many ways. Today, for the first time in what seems forever, his future seems bright and unlimited.  
The latest chimerism results are in, and, without getting too excited, it looks like Idan’s graft may actually be starting to stabilize! Since we took Idan off immune suppression in December to stop the graft from continuing to fall, Idan’s t-cells have inched their way up, one percentage point at a time, from a low of 79% donor to 85% donor as of last Monday. 85% gives Idan an excellent chance of a cure, so we are hoping that this latest trend continues! What has been worrying us is that, until last week, Idan’s myeloid cells continued to fall, which threatened the long term chances of the graft sticking around. So we were very happy to see that his myeloid cells did not drop this time, and instead went up by a percentage point!  
We are cautiously optimistic that things are finally starting to turn around. Idan is healthy and joyful and has a full head of curly and unruly hair. Transplant and chemo feel like a lifetime ago to us, but every once in a while there are reminders. A couple weeks ago, a song came on the radio that Idan used to love, and he begged us to turn it off. We asked him what happened, and he explained that the song made him feel sick, like he was back in the hospital room getting chemo. Memories of the song playing and me dancing to it to cheer up Idan when he was having a particularly painful day came flooding back to me, and I understand why that same song now has the exact opposite effect. And last week, Idan told us he didn’t want to wear a tank top because sleeveless shirts make his neck hurt. He later explained that he thinks these shirts hurt because the last time he wore them was right after his central line surgery, when his neck was in terrible pain for several days. It turns out that was the last time he wore a tank top. We are 227 days post-transplant, and I guess we were hoping that Idan, who turned 4 the day after his transplant, would forget some of these memories. Then again, these experiences are part of him, and even if we can say goodbye to Hyper IgM, I want him to always remember a few things about transplant:  
1. Idan didn’t just survive, he endured.  
2. He showed the world – and himself – how strong, brave, and fearless he is.  
3. He got to the other side. Sometimes that’s all you can do when things are really bad. 
4. He is loved, cherished, and supported. His parents and family never left his side, and never will. 
5. He witnessed the goodness in people all over the world. From the staff at the hospital, to the strangers in Seattle who embraced us into their community, supported us, and gave us a second home, to the army of supporters from around the globe, he saw and felt the awesomeness of helping others.  
So, even if it can be painful to remember, maybe it’s not such a bad thing that we do.  
While we are waiting to see whether this good trend in Idan’s chimerism continues, we are slowly starting to expose Idan to the happy carefree side of childhood. Last weekend, he rode on a carousel for the first time ever. As we spun around and around, we waved to Idan’s grandparents watching from the side, and I smiled to my mother and shared tears of joy with her in seeing Idan enjoy just being a kid.  
After quietly taking this new experience in, Idan turned to me and said, “Mommy, I will never forget this day.” Neither will I.

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