We made it to maintenance!

May 19, 2024

We finally got through the frontline part of Bennett’s leukemia treatment! This means all the super hard hitting treatments and phases are in the past. He “shouldn’t” have any moments of having zero immune system again, he should have some sort of immune system at all times now for the next year and a few months. Our end date is still 10/25/25, we have to go once a month for a lumbar puncture and IV chemo, plus anything random that pops up in between (like labs or whatever)… Bennett got knocked down pretty good the last two month phase and he lost of lot of weight and a lot of muscle in his body and just was only wanting to sit around a lot. He was crabby and not wanting to play. Once we finished his 5 days of steroids over a week ago he snapped out of it and now he’s himself and a typical almost 3 year old, he’s just really uneasy on his legs … though he’s getting stronger every day and we have PT in our back pockets if we need to sue them.

He will get small doses or oral chemo in his g-tube every day at home, but thankfully it’s not anything that makes him feel too icky.

I (Claire) had originally had a trip to Oregon planned last summer with my best friend but with Bennett’s diagnosis we canceled. I finally decided to she our air bnb credit from the canceled trip and Ryan, Bennett, and I rented a cabin for the weekend up north. It was gorgeous and Bennet LOVED being there. It was our first time doing anything together out of the house, that wasn’t medical, since before he was diagnosed. It was much needed.

It’s so great being in the last phase of treatment, even though it’s a very very long one. Now we can relax a little and just pray that nothing comes back and that he can kick this for good the first try.

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