I finished

I did it, first triathlon completed. Time to plan my next one.

First Triathlon

I’m hours away from starting my first triathlon. I’ve been preparing for this moment for over a year and I feel unready I’m prepared. My journey started with hope that Jedi would be here, but it continues with the need that his memory is a blessing. He would want me to be healthy and live the best I can. So here I am with a challenge that I’m not sure I will finish. But I know for Jedi I will try.

Swim, Bike, Yoga

Jedis life celebration

https://www.rill.com/obituaries/Jedi-Minters/#!/Obituary

Jedi Minters passed away on January 8th, 2019 between the loving arms of his parents. Jedi is survived by his parents Jason and Lisa Minters of Port Orchard Wa, maternal grandparents Larry and Wanda Pruitt of Wytheville Va, and his fraternal grandparents Gerald and Carol Minters of Flower Mound Tx.

Polite, grateful, loving, kind, happy, and always inquisitive about the world around him. Jedi’s short lifetime was one filled with joy and love. No matter where we were he felt safe and greeted everyone as a friend. We extended his time here by submitting him to treatment that he took in stride. At no time was he scared of doctors or nurses. In fact, they were among his closest friends. We came to appreciate the dedicated people that kindly treated Jedi’s leukemia and kept his dignity. 

Jedi's celebration of life will take place on January 25th, 2019 at Rill's Life Tribute Center in Port Orchard, Washington at 11:00 am with graveside service to follow. In lieu of flowers please consider donating to Mary Bridge Children's Hospital, Seattle Children's Hospital, or Be The Match in Jedi's memory.

My VIP

https://www.instagram.com/p/BrlaxSzgyM6/

“Do not let your fears eat the happiness in front of you.” -Lois McMaster Bujold

Clock face

I would like a clock that changed the 12 at the top to 0 at mid night and back to 12 at noon. 

Life is an experiment that you only get to test once

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.

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

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.

Last week

Good morning