I haven’t posted in about 4 months for a couple of reasons. One, I’ve been very busy with the move to Virginia Beach and getting everybody all set up in the new place and stuff. And two, I was feeling superstitious. Because things had been going so well, I was afraid things would go south if I posted an update.
I know – that’s stupid. And it didn’t matter. Things went south anyway.
After December’s bout of MRSA pneumonia that almost took him out, and a delayed move to Virginia Beach in early January, Cam was on shaky ground. It took a couple weeks for the benefits of the lower elevation and warmer temperatures to kick in, but indeed, they did! For the most part, he didn’t need supplemental oxygen, his sleep machine settings were way lower, AND he didn’t get pneumonia.
Yay, Cam! Yay, the beach!
In February, he had a little set back when his platelets dipped, and he bled into his shunt (the tube that drains cerebrospinal fluid out of his brain and into his abdominal cavity, so he doesn’t get hydrocephalus, which puts more pressure on his brain). He stayed in the PICU for 10 days. It was a great way to get to know our new hospital in Norfolk, and to get a shiny new shunt at the same time.
In March, he had a little birthday party on the beach. Okay, so there were no kids there, because he didn’t know any yet, but his sister was in from college and that was more important anyway. And he got to ride in his new beach chair.
For most of March and April, he was the happiest and healthiest we’ve ever seen him. He was playing and laughing again, and even got to start back to school. His platelets still refused to cooperate, but he was breathing awesome and we’d found a medication that was apparently causing his bone marrow to make more platelets.
Then last Saturday, after an awesome family day to the movies (Super Mario Bros), he was a little weird at bed time. I cuddled him for a couple hours and put him in bed. At 3:30 in the morning, he woke me up crying and whining. His temperature was 101.6, his heart rate was 137, and he was not waking up for me. We took him straight to the emergency room.
A CT showed he was bleeding into his brain. He went straight to surgery to externalize his shunt (they redirected the tube so that it drained into a container hanging on an IV pole, so we could see what was in there). He got a platelet transfusion and moved to the PICU. He’d been through that before. We thought we were in the clear.
The next morning’s CT showed he was still bleeding into his brain. A LOT. They think the bleeding was probably from the tissue from where the brain tumor was. Those sad little brain bits were all tore up from the chemo and radiation from years ago, and now that it had started bleeding, it wasn’t going to stop. And even if it did, there was likely some new brain damage, and almost for sure he would bleed again. It was the first time I remember ever having a doctor tell us there was nothing else they could do.
Cameron Wesley Barrow died at 8:27 pm on Saturday, April 22, 2023.
We were able to get some family in to say goodbye in the days leading up and Kris and I were with him as he passed. Although we are still in shock — and I don’t know how I’m going to live without him — we do know we’ll have a celebration of life service some time this summer in Colorado. We’ll keep you posted on the details.
Thank you to all the people who read his updates, and who loved him. Many of you have followed his story from the very beginning, and you know how special he was. In his short time on Earth, he’s affected so many people, raised so much awareness for pediatric cancer and disability accessibility, and brightened so many hearts with his smiles and high-fives. He’s even donating his corneas.
Right now, I’m just crying, hugging his pillow, and trying not to throw up, but when the dust clears, Kris and I are going to pick up where he left off.
Cameron left the world a better place than he found it. His work isn’t done.
Hug your babies tonight.
RIP Cameron Wesley Barrow. I love you. Catch you on the flip side.