Henry’s Story

Site created on June 15, 2018

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 in-patient chemo treatments. He will have to undergo chemotherapy treatment at home for the next year or so along with the possibility of radiation.
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

On Tuesday this week Henry had his normal in-clinic bloodwork testing along with getting his dose of IV pentamodine (antibiotic).
His bloodwork showed that his platelets were at 79,000, Hemoglobin was at 9.2, and his ANC was around 2200. Because his platelets were showing low already they wanted to hold off on this next round of oral chemotherapy until Thursday to see what his bloodwork shows then. We had made an appointment with the clinic for Friday in case he needed the platelets.  

Thursday grandma and grandpa Brown brought him to the Zeeland hospital for the lab draw. They said he did really well for it. He has been lately for the weekly arm pokes... just sitting there and letting them do the blood draw, yet still complains that it has to be done... 
We got a call back from them saying his platelets dropped to 39,000... 
Well dang... ok, this is why we made the appointment for Friday.

Friday morning we headed to the Hospital for his in clinic visit to give him platelets... 
I forgot the emla cream (numbing for his port). So they applied it. This made a 20-30 minute delay... then they got the port accessed but still were waiting on the platelets to be ready and sent up to them. 
We were able to go to the playroom, watched a few movies, and grabbed an early lunch before they finally arrived... let me tell you his appointment started at 8:30 am... they knew he needed the platelets... Yet, we didn't get them until after 11 am... 

Amongst all the questions they asked about Henry in the beginning of the appointment. We did have some concerns over the past few days. It has seemed like he gets aggitated way quicker than he normally would, or more irritable. But also has not been sleeping the greatest at night, waking up, or talking/complaining of something, multiple times each night. This is not very usual for him... normally sleeps the whole night without hearing a peep out of him...
This was also a concern for them too... because Henry has had some problems with fluid buildup in his ventricles,  he is higher risk for it again. So they wanted to quickly do an MRI. 
"Quickly"... HA his routine ones usually take hours... But, I guess because  they just needed a small picture of really just one area, it would only take minutes.  And it did, it ended up taking about 5-10 minutes.  
We waited around for the results in case it was something like build up of fluid. That way we didn't head home then just have to turn right back around. 
Everything came back normal. No concerns with fluid build up... Thank goodness... 

We now have an appointment on Tuesday June 4 for his bloodwork recheck, then to possibly start his chemotherapy.  

Overall though Henry has been doing so well! We got him started in the early on program that helps to get kids started with physical therapy/occupational therapy in a school setting. But because he is turning 3 soon they dont have a lot of time to work with him. They have been so helpful with figuring out what to do for when he needs to start schooling. 
We are meeting with them on Monday to figure out more of the finer details. 
  • Henry in the group setting at early on. 
    Henry in the group setting at early on.
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