Hi, Joe. I hope you don’t mind me popping in to see how Charlie is doing.
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Hey @Shwa thanks for checking in and thinking about Charlie. It really means alot! 
Here’s a quick update on 10/30/24.
Charlie is doing really well with his treatments! He is a solid 7 months into treatments and the hospital visits have become our new normal. (We’ve been referring to the hospital as “Hotel Yale” 
). There have been some hiccups along the way but overall, he is doing good! The current treatment he is getting requires four-day inpatient stays, every other week. On the off weeks, he goes in for an outpatient visit and gets blood transfusions as needed. The hospital does great with the kids and constantly has activities, music therapists, clowns, story times and crafts. It really helps pass the time.
There were a few pretty exciting things that happened since the last time I checked in:
First, back in August, our whole town/community got together and rallied behind Charlie and put together an event for him! Everyone in the band I play in donated their time to put on the concert. There were countless volunteers, donations from local businesses as well as food and drinks, it was a big party. There were close to 600 people in attendance! Seeing that many people gathered to support our little boy was incredible. I have tears in my eyes just thinking about it now…
Second, There have been numerous foundations that have reached out to us with support. One example is Circle of Care. They reached out to us right after he was diagnosed and have been in constant contact with us from the start. They have done so much to keep Charlies spirits up and they always keep our daughter included as well. One event they put on was at an indoor trampoline park. They rented out the whole place and invited all the kids/families from the hospital. Charlie and Chloe got to drive around go carts, play laser tag, jump on the trampolines…It was a blast. Circle of Care, and many of the other foundations, go above and beyond to make these events special for the kids.
Third, Charlie is enrolled in a clinical drug trial for ‘Blinatumomab’. We were a little hesitant at first because it requires two additional treatments where he has to be accessed at home and needs to carry a chemo pump with him 24/7 for a month. The great news is…this study has proven to be highly effective in avoiding relapses down the road. ‘Blina’ is on track to become the standard of care for children battling Leukemia. (He has completed one of the two rounds of it so far.)
Charlie is an incredible little kid. He truly lights up the room and puts a smile on everyone’s face. I am very proud of him.
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Such a great update! Thanks for sharing 
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Thank you indeed for sharing that beautiful update. Charlie is such an encouragement. You all are. 
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That is so great to hear!! We’re all pulling for him and you guys too.
It’s so great to see the way a community can come together to support these little people and their family. Cancer sucks but it’s a million times worse to see these kids going through it. When my mother was going through treatment we had to pass right by the childrens wing. It brought tears to my eyes every single time.
What a little trooper he is. Give him a big hug from me!
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Amazing news! The entire forum is rallied behind y’all. I’m also super happy to hear Blinatumomab is proving effective.
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Wonderful news.
Thank you for the update.
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