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May 05-11

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Trey’s Journey: Home Day 26 (12-2-2020)
We hope you all had a very safe and happy Thanksgiving! We, like so many others, had a very small Thanksgiving compared to what we are used too with Kristi’s parents and yet we still made enough food for 20 people. Luckily for technology we were able to FaceTime with loved ones. 

Trey has been doing amazing! He is all smiles, full of personality, on the move all day and getting into things he shouldn’t. He and Luna are bonding, but of course he loves her way more right now lol. He always wants to crawl to her, on top of her, get her food... etc.  His hair is coming back in so much faster than we thought and it’s actually lighter, more blonde than before.

We did have a bit of a hiccup this past Sunday. As we were administering his anti-fungal medication we noticed that his line/port was leaking fluid and a small amount of blood. After 9 months of use, his tubing is starting to wear down. We rushed to the castle and thankfully our Oncologist was on call. The oncologist asked the nurses if they would be willing to look at Trey’s line, they did not take any convincing to see this little Warrior again. Anyways, Trey makes his own rules and due to the line leaking it’s getting removed a little earlier than anticipated, this Friday. He will now have to move to oral medications which may not be as effective as using his port, but we can’t repair his tubing so no other choice. However, we are exciting to not have to hook him up to tubing every day and he will finally be able to have a bath! We are excited to see him play in the water for the first time. It’s the small things like this that we have missed out on all these months, but will not take for granted. 

Last night we were able to go to the Castle for their tree lighting ceremony. We were there as guest vs being in our third floor room looking out. We got to see some of the care team that took amazing care of us. It’s crazy that as much as you hate being at the hospital you end up missing the staff. That is a testament to how amazing they all are at their jobs. We will now have a yearly tradition of going to the castle to see the tree lighting. 

As always, thank you all for the love and support! We hope that you all are staying as safe, as you can, in this pandemic stricken world.  
Chase, Kristi, Luna & Warrior Trey 

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