Saturday, June 2, 2018

Jedi pooped and we are heading to Seattle

Jedi is a wonder. He just had a blow out poop, for those of you that are not initiated in the ways of baby poops let me explain. This was a mild explosion, just too much runny poop to hold in his diaper. So it goes down his leg into his pants. Then when removing said articles poop proceeded onto the floor and a rug that we are going to be throwing out, before we leave for hospital. Jedi is now mature enough to inform us that he pooped. Now we change him standing and he patiently waited for us to take care of the situation. After his parents got him clean and in a new diaper he went on his way to play with his cars. Not accepting the plain matching pants his mother offered. Sometime later he went into his own close to pick out the brightest least matching pajama pants. That his father helped him put on without a second thought. I know this is more of a classic tale then something to wonder at. That is if the child in the tale was healthy. Jedi has survived through 13 months of leukemia, several rounds of chemo, and a non related Bonemarrow engraftment that failed. 

We have four days left to be ‘normal’. Living in a house, playing in the backyard, going to our local park, and heading to McDonald for happy meals. On the fifth day we will be heading into an early admit to Seattle Children’s for heavy chemo in hopes for a transplant. We don’t know how long we might be in Seattle. And we don’t know if Jedi will make it back home. We have a plan A, B, and C. Hoping we have a plan that will work in the end. 

I’m thankful for the brief time we have had at home. Savoring every moment we get with our happy Jedi.

Thursday, April 12, 2018

A letter to my son Emanuel

Dear Emanuel, my son,

     How do you say goodbye to a person that meant the world to you? How do you say goodbye to a person that you never had a conversation with? How do you say goodbye to a child that never took a breath? I do not know, son. I’m trying with all I am to keep the gift of hope, that your conception gave us. I am failing, you were my hope, the hope of your family, a symbol of love and perseverance. The family motto after all is ‘Never give up’, and I think in that too, I am failing. I do not know how to live with these failures as I do not know how to live without you. You were my shield of light against misfortune and tragedy. And now, now that shield is gone and I am left vulnerable to this despair. I will promis you that I will go on and on. It may be as a sad person, but I will step forward into the future, along that darkened path.

Your sad and loving father,
Jason




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.

Sunday, April 23, 2017

Friday, March 17, 2017

Friday, December 9, 2016

Monday, December 5, 2016

Wednesday, September 21, 2016

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