Jailbreak

Yesterday was a great and eventful day for Soren.

In the morning Soren’s buddy Mike Mansfield from Berwick came (with thoughtful parents and sister in tow). They brought and played a new tabletop soccer game and we all had lunch outside (not in the caf). Before long, despite being hooked up to the IV, Soren was acting like his old self, trying to race and hip-check Mike as they always do at school, competing for just about everything.  When it became clear their long visit was coming to an end, Soren looked genuinely sad for the first time.

But then, to the rescue, his oldest friend Ollie Sterndale arrived and smiles returned. More toys, treats, adult and kid conversation alike, and all was well. True to form Soren polished off a pint of fresh local blueberries, and his good blood values and happier GI tract earned him his first walking pass.  Yes, when Erika arrived they upped his IV feed for a while, then unhooked us and gave us 2h of free time. We walked a couple of blocks in the opposite direction from Fenway (gameday) and enjoyed an excellent dinner of Penguin pizza, salad, and JP Licks ice cream.

Pizza in a real restaurant outside of BCH!

With a full belly and happier spirits, we walked back, Dad packed up a box of gifts that Soren’s room can’t presently hold, and drove home.

 

Today, Soren got the rough news that he wouldn’t be able to eat before his PET scan scheduled for 2pm, which is agony for a 6yr old boy with a steroid-enhanced appetite. Thankfully friend Eliza from BA and dad came to entertain him, and it sounds like yet another release time might be possible tonight.

Tomorrow, the serious business of chemo begins and we as parents feel like we’re cresting the top before the first giant drop on a rollercoaster. Our stomachs feel the same.

We are absolutely overwhelmed by all of our support. I’m updating our wishlist mostly by crossing things off, not by adding. You’re all amazing.

Thanks, more as soon as we can.

PS: some of you might know that I (Vaughn) do research in genomics relevant to Soren’s cancer, so this has hit very close to home. I have nothing but great things to say about the Children’s/Dana Farber faculty/staff who have humored me by “talking science.” Evidence is below:

FISH assay of MYC transcription factor

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Jailbreak

4 thoughts on “Jailbreak

  1. Jordan says:

    I recently worked on MYC and MYB as antibody targets, I will check to see if we have a product out for curiosity’s sake. Thoughts and prayers are with you guys!

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  2. Kiley Hemphill says:

    Our hearts are heavy for what you must be going through as parents. Hard to know what to even say. We are praying for strength for all of you, and know that Soren comes from fighting stock! So glad to be able to read his updates – thanks for including all of us in your journey. We’d love to get some healthy food to you – what’s the best way to do that and not duplicate efforts? Don’t want you to have to deal with rotting food!

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    1. Thanks Kiley, please contact Hillary Hughes to coordinate from the link on the main page. It’s going to be a long road so don’t worry about waiting a while.

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