Bits and Pieces
My sweet son is home now.
He is much more wobbly than I expected. Steven typically comes out of the hospital so strong and sturdy (with the exception of the brain stem tumor). He has lost a bit of balance this time, and he is using a walker for a short time until that balance returns.
His eyes are also suffering from nystagmus.
Both of these issues should resolve with time as the post-surgical swelling in the brain goes down.
While I am living with past traumas and future fears,
Thursday, deep in the middle of the night, we were told that because of the location of the tumor, Steven would need to have a swallow test in the morning (Friday morning). I froze...because while my brain knew that removing a tumor that was touching the brain stem (but not part of the brain stem) could cause "brain stem" problems from post-surgical swelling, my heart was not ready to hear this.
He passed the swallow evaluation.
Steven lives with hope.
This life gets very tough sometimes. At one point during the stay in the ICU, I was trying to boost his spirits and I mentioned to Steven that based on his MRIs, he should have a good 5 to 10 years before he has to do this again. He said, "Well I expect a pill by then."
A medical treatment for VHL related tumors is needed!
He is the strongest, bravest person I have ever known.
My sweet son is also the most determined person I have ever known. Just as he did in 2014, when brain surgery left him unable to swallow, Steven is taking this walking set-back by storm. He is determined to walk a little more each day without a walker. He is also determined to walk a lot more each day with the walker!
We need a cure!
Steven has a great team behind him.
Mary is learning the ropes of helping her brother heal. She did her second round of "surgery night" with me in the ICU. The last one, in 2016, was when Steven had hydrocephalus and was on a vent for the first 12 hours after surgery. This time he was fully awake and in severe pain. Both situations showed her to be the rock that I knew she is.
The nurses at TGH, both in the ICU and on the neuro-floor, were amazing as usual.
Dr V described this tumor as "a beast" under the microscope.
He also described the the removal of this beast as "by the books".
But even with an amazing team surrounding him, this is brutal for my sweet son. Brain surgery is brutal. Opening someone's skull with a drill and maneuvering through brain matter with a blade is horrific. It is barbaric at it's most basic level. But brain surgery for VHL related brain tumors is the only treatment available at this time.
WE NEED A CURE!!
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