Two Years Since Brain Injury
September 14, 2022. The day Ian’s life, and ours, would be changed forever once again.
The first time was his inital diagnosis. This time, it was the beginning of a new medical journey.
On this day two years ago, we went in for Ian’s routine MRI. We had been getting them every 3 months since July 2019, so we were pretty comfortable with the routine of things. Be up and out the door early in the morning, get the scan, and then go see the oncologist to get the results. But that day wouldn’t be like any other. Our oncologist pulled up the images and showed us that one of Ian’s tumors had doubled in size. This tumor was never super big to begin with, so even doubled it was relatively on the smaller side, but the fact it grew as big and as quickly as it did is what was concerning. This has never happened before. Tumors growing that big that quickly are characteristics of a high-grade tumor, which Ian, supposedly, didn’t have.
The very next morning, we met with neurosurgery and came up with a plan and scheduled a surgery date. Because Ian wasn’t having any symptoms that would indicate anything was wrong, it wasn’t considered an emergency. However, it was a fairly important issue, so the surgery was scheduled within the next 2 weeks. In the meantime, we were given the symptoms to look for and told to bring Ian down to the emergency room should they appear before his surgery date.
Something I can’t explain is God’s timing on things pertaining to Ian’s medical issues. When Ian had his first partial convulsive seizure, we were in the middle of an appointment with a neurologist down at Children’s Hospital talking about the symptoms we were seeing. As scary as it was in that moment, looking back now, there wasn’t a better place that could’ve happened. This allowed the neurologist to see the seizure first-hand and help rush us downstairs to the emergency department to be admitted. When his tumor hemorrhaged, what were the chances we got to see and know what was going on before the big, scary thing happened? Had we not had all that information beforehand, I don’t know that we would’ve acted as quickly as we did. Or if the doctors would’ve as well.
The next three weeks were easily the worst weeks of my life. Watching my 5-year-old be in a medically induced coma and watching him go up and down. Watching him fight for his life. I’ll never forget the doctors telling us he was “very sick”- only to find that when all was said and done, we got the news we prayed so hard for. Ian’s tumor hadn’t turned malignant, and he was still considered to have low-grade brain tumors. His diagnosis changed, as they were more able to definitively say what his diagnosis was. His first diagnosis was more of a best-educated guess because the biopsy came back inconclusive. This time, it was more prominent of what’s called a pilocytic astrocytoma.
When Ian was able to come out of the coma and be awake after surgery, this is when we learned the extent of the bleed. It caused him to have a stroke, which weakened his right side severely. Not only that, but Ian had to relearn how to do everything again, from walking to swallowing. After 6 weeks in inpatient rehabilitation, we were finally able to bring Ian home, and we’ve been doing outpatient therapies ever since.
While Ian’s right side is still weak, he is able to get himself around okay. He does need extra supervision, mostly around steps, and he’s not as fast as he used to be. He still has trouble getting his left arm out of his shirt, but once he does that, he can undress himself. His speech is back to baseline, and we work each day to keep up on his academic and cognitive abilities.
They say the first year is when you see the most improvement in a child with a brain injury. We’ve surpassed that, but we’re still going to keep working on everything. We don’t know what the future holds or what it looks like, but we are grateful for another day with our little warrior.
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