Monday, January 22, 2018

Jedi and sleeping daddy

An update on my son, Jedi

Jedi is my best friend, after his bone marrow test on Friday we went up to the infusion clinic to get him some platelets. He was running a little low and after an operation they really want him to have a good platelet level. He sat on my lap playing on an iPad and I took a cat nap. At some point he wanted my attention and knocked on my beard ever so gently. It didn’t wake me up, but Lisa’s giggles did. After his infusion the nurse asked if he wanted a toy and led us to a big white chest. When I opened it Jedi whispered “wow” and we rummaged. I found a hot-wheel that was instantly approved by our two year old connoisseur of all things with wheels. Yet he kept looking till we found another, where I explained he had to choose, “just one”. He kept one and handed me the other saying, “yours”. Contented with our prizes he went to show his mother. I discreetly placed mine back into the chest. He is always sharing with me making sure I have one, be it a cookie or toy. Still he doesn’t know how sick he is, just having a happy two year old time. I wish I was more like him.

The bone marrow test was done at Mary Bridge by our oncologist Dr. Chang. As a part of us transitioning back home. It felt good to go back to a group of folks that we knew well and have been cheering us on. After the test Dr. Chang said she would call us with results when she got them. 

We got a call that evening from Dr. Chang. And his leukemia is back, his bone marrow flow test came back with 60% of his white blood cells where leukemic.

We have to wait till Tuesday to meet with the high risk leukemia expert at SCCA. For all of you that have been googling along with our journal already know that this is a very bad development. Relapsing in the first year after transplant reduces his chances of surviving the next year to one in five. Jedi is young and otherwise healthy. We are going to fight, what ever it takes.

Till Tuesday my friends and thank you for all of the support. As a father I feel an extra fortunate to have the chance to be here with Jedi and Lisa. For that I want to make a special thanks to Undead Labs.

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