Henry | CaringBridge

Henry’s Story
After some persistent unexplained vomiting Abby and Randy decided to bring Henry directly to Helen DeVos Children's Hospital. Shortly after being there he was diagnosed with a brain tumor. After having surgery and many long dreadful days we found out it is AT/RT(Atypical teratoid/rhabdoid tumor) an aggressive and rare form of brain cancer. Right now is through his first round of chemo, 7 or so more to go along with some radiation treatments. He has been doing very well and is such a trooper with all that has been brought his way.. with all the struggle he still remains happy most of the day and still finds laughter. There was a very good portion removed in the surgery, although we don't know what his tumor is going to do after these treatments, but we are hoping for the best results possible for our little Henry.

Newest Update

Journal entry by Abby Brown

Monday, December 17: 


He did it!!! Henry got his third and last dose of stem cells for the BMT rounds!!! Very uneventful I might add, which is great and what we expect!
I cannot believe it, still needs to set in. I think because it is very anticlimactic. All they do is push a syringe full of cells through his broviac over a period of time (about 20 mins). 
Henry is very badly smelling of creamed corn right now... I am counting down the time until that smell goes away... 

One day at a time and one check mark at a time!! One day closer to going home! (I know we just started but still feels good)

He woke up in a good mood, unfortunately got sick shortly after his oral medications. They think that the Bicitra was causing some problem (I agree, that stuff is nasty!). So they are adding the Sodium Bicarbonate to his IV bag. (Why did we not do this sooner??) I think another problem was that he did not eat before taking all of his meds. I am sure that could have been an issue. 
Once we re-dosed the meds he got up and played for a while. He did not want to eat anything but a handful of goldfish... 

OT came in and worked with him late this morning and said that he is still doing very well with his fine motor skills. 

Henry took a nap around noon, then got up shortly before the Stem cell Transplant. He ended up eating almost a whole bowl of cheerios and milk while the transplant was taking place. He has been drinking pretty well. Just not eating the greatest for us... 

He was able to get up off the couch and walk around, which he looked like he was pretty weak and unsteady... I am hoping that it is just from not eating very well... But we will have to see what tomorrow brings. 

Later this evening Dad came out to see Henry. They ended up falling asleep on the couch around 7:30... We ate dinner then Henry woke up afterwards... Which I am not too happy with at this time since Henry is fighting to go to sleep right now... He is tossing and turning trying to find his sleep... It's just after midnight... 

Anyway had a pretty good night with Henry besides the decreased appetite. Pretty uneventful day today and continue to look forward to more of them.

Henry quote for the day: "ME?... Noo..."
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