Colin’s Story

Site created on October 19, 2018

Welcome to our CaringBridge website for Colin. We are using it to keep family and friends updated in one place. We appreciate your support and words of hope and encouragement. Thank you for visiting.

Newest Update

Journal entry by Allison Lyons

Hope everyone had amazing holidays!

We spent Thanksgiving with Poppy and ZeeZee as well as a visit from Erin’s family at the Lake house. Spent Christmas at our house with Grandma and Grandpa and Erin/Elie/Claire. Plus got a weekend with Matthew/Monica/Jacob and a separate afternoon with Eliza/Kk/Josh. So we have been very fortunate to have a lot of wonderful family time this fall. 

We have also been blessed to connect with Colin’s donor who lives on the West Coast in Washington State. They have 2 boys the same ages as Colin and Owen. So when they were asked to donate felt they couldn’t possibly say no!! We have been trading text over the past few months and it has been amazing to get to know the person who saved Colin’s life.

We have also gone up to CHOP x2 since Thanksgiving to see the lung doctors. Supposedly, Colin should be able to keep up with kids his age at this point. And even though he’s doing amazing- he’s not doing that. He got a CAT scan right after Christmas that showed that he might have an infection. Could be a virus but also could be related to being on dasatinib and having a transplant. So they are going to take a look in his lungs with a camera (bronchoscope) at the end of the month. Fingers crossed it’s nothing. But good to be ruling things out.

Happy New Year to all!!

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