Updates

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Charlie Updates

We are blown away by how many people are praying for our family and looking for updates. We will do our best to post here for everyone who wants to stay updated.

Friday, May 22

Time got away yesterday and I didn’t get an update made. Charlie had 7 hours of chemo yesterday, and handled it like the champion he is. While we can tell he isn’t feeling great- puffy, sleepy, not smiley, fussy – we are so thankful that the numbers (vitals and labs) still look perfect. At this

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Wednesday, May 20

Two days of chemo are completed. Charlie is handling these treatments like the champion he is. Two more days of inpatient chemo, then we can potentially do the remainder of this cycle as outpatient treatments if he is tolerating it well. We were presently surprised that his metabolic lab results were totally unchanged this morning,

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Tuesday, May 19

Today is the day we have been dreadfully anticipating since we learned that our sweet baby boy has brain cancer. The first day of chemo. The first three rounds of chemo are 28-days each. He will definitely be admitted for days 1-4, receiving chemo drugs each day. Then, if he is tolerating it well and

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Wednesday, May 13

Charlie had surgery today to place a central line and g tube. While sedated, he also had a hearing test. We know that chemo side effects could impact his hearing, so he will be having frequent tests to monitor that. Today’s test was normal as expected. He also had an EEG this morning because he

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Thursday, May 7

Happy 4 month birthday, sweet boy! We were in STL to review final pathology and sign papers. Plot twist! Final pathology report shows that his tumor is NOT a Pineoblastoma. It is in the same family, but the cells clustered differently, making it a new diagnosis, which they warned us could happen. The name of

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Thursday, April 30

We had a long day meeting with lots of people, and are still waiting some of the last pieces of the final pathology report. With the pieces of the puzzle that we do have, we believe he has a rare and aggressive brain tumor called a Pineoblastoma. The exact varient (there are 4) is still

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Saturday, April 18

It’s been a minute since we’ve given updates…it’s taken us time to process what we’ve learned. Charlie’s preliminary pathology reports show he has a Grade 4 brain tumor – the most agressive type. This isn’t the news we were praying for.

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Wednesday, April 15

11am – we are on room air – no more oxygen support! This means that we will likely be transferred out of the PICU to a regular floor soon. 12pm – tried offering his first bottle, but he wasn’t interested. We’ll try again tomorrow.

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Tuesday, April 14

2pm – the ventilator is off! Charlie is on a small amount of oxygen through a nasal cannula and is still recovering in the PICU. At this point, we are just gradually lowering him off oxygen/IV’s/etc and will reintroduce formula soon.

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Monday, April 13

Charlie will have a craniotomy and attempted tumor recession at St. Louis Children’s Hospital. The surgeon will collect a biopsy which will give us a true diagnosis, although those results will not be available for several days.

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