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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Update 7/10/26
I just realized that I haven’t done an update on Charlie in a long time.
There have been so many ups and downs over the last 2 years it’s hard to keep track of everything but here is an overview!
He is currently in a stable point of his treatment called ‘maintenance’. He still takes chemo meds daily at home but we only have appointments at the clinic once a month. His hair is growing back and he’s got the same curls he had when he was a baby, haha. His official last day of chemo is scheduled for September 9th 2026!
The first 15 months were definitely the most challenging. During that period he had:
-73 scheduled clinic visits
-14 different chemo drugs
-7 unplanned trips to the ER
-Admitted 10 times spending 76 total nights in the hospital
-Countless, lifesaving, blood transfusions. (Thank you to all the blood donors!)
This was the hardest time any of us have ever experienced. Charlie’s immune system was wiped out so he couldn’t be around other kids or in school for most of these months. A lot of the weeks in the hospital he was kept in isolation and was advised not to leave his room. The nurses would constantly bring him legos, paints and other activities and every night we would make popcorn and have a movie night. Charlie’s diagnosis was promising from the start with a roughly 90% survival rate. But, some of the other kids were not as fortunate. Everyday in the cancer ward is an emotional rollercoaster where you can be celebrating a kid that just completed their treatment and the same day be grieving for a family who is dealing with the loss of a child. (all while trying to hold it together ourselves!) We have a lot of respect for the doctors/nurses who deal with this day in and day out.
As I mentioned in my last update, there have been so many organizations that have reached out and helped us on this journey and provided much needed love and support.
Circle of Care - They have been with us since day one, they are amazing! Every year they have a lottery and select a kid to do a room makeover and Charlie got selected! They moved us out of the house for the day and redid Charlie’s room with fresh paint, new shelves, lightning and a monster truck theme, it was totally epic!
Tommy Fund - Charlie was selected to be the ambassador for the Hats for Hope campaign for 2025! They also selected Charlie to be the Honorary Captain of the UCONN women’s basketball team for a game. They gave our family tickets and Charlie was brought out onto the court and introduced to the whole crowd. What a cool moment!
Roc Solid Foundation - They give playsets to kids who are dealing with cancer and compromised immune systems who can’t play on public playgrounds with other kids. They partnered with the company AZ Corp and built a playground in our backyard! This even made the local news! https://www.youtube.com/watch?v=x4ZEVhGo3YI
Tommy’s Place - They have a large house on Cape Cod dedicated to supporting childhood cancer patients and their families. Every Week they invite a different family to stay there and we were selected. What an epic house, they had a dedicated Music room, art room, SPACE ROOM, Library, movie theater, toy room and arcade room! It was truly a dream getaway. Every bedroom had a theme. (even a Taylor Swift room complete with a pink guitar!) It was the perfect week for us to go, Charlie had just gotten out of the hospital and, little did we know, he would get admitted again a few days after we got home.
Make a Wish - Every once in a while we have time after a clinic visit to go to the 'Wishing Place". It is the headquarters of Make a Wish Connecticut and they have a whole floor as a dedicated play place. It’s always a fun thing to look forward to. They also host a lot of events throughout the year including a touch a truck event/parade. Charlie chose to ride along in a fire truck this year and got to honk the horn as much as he wanted. It was a very fun, and loud, hour long ride!
Union Baptist Church - The local church in our town that my parents attend. They are always checking in with us and sending both Charlie and Chloe letters in the mail. Letters of motivation and encouragement. It’s always fun for the kids to get letters in the mailbox.
Ronald Mcdonald House - Located directly across the road from the hospital. This is basically a home away from home for families that live far away and who have kids in the hospital. Since we are 1 hour away from the hospital this was an amazing option for the long inpatient stays. Charlie’s health has taken up alot of our time, energy and attention and it’s definitely taken a toll on our daughter, Chloe. We try to make an extra effort to give her the love and attention she needs. Ronald Mcdonald house allowed our family to stay together without the long drive back and forth.
And of course all of our family and friends! We are lucky to have a large support network.
Things are on the right track and hopefully the scariest parts are behind us!
Thanks again for the continued love and support!
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