Henrik Lewis Henrik the Brave

First post: Oct 2, 2014 Latest post: Apr 1, 2022
Spring 2021: It's been seven years since Henrik's original diagnosis of a benign brain tumor, six years since his secondary diagnosis of a malignant transformation, five & a half years since he ended cancer treatment, and almost five years of fluctuating but stable MRIs. 

On April 28th, Henrik went in for his routine brain MRI to monitor his residual tumor & make sure the malignancy is not growing back. It was his first time in seven years of going longer than three-or-six months between scans. This was 11 months. His tumor has grown significantly and his surgeons want to try for a fourth time to remove it. They do not suspect a new malignancy (or a returned malignancy) but think it's a cyst that continues to fill with fluid. We've noticed a few things with him recently that could be symptoms of tumor growth, or they could easily be coincidence - he says he does not feel symptomatic. 

We don't know much yet - the neurosurgeon we saw on the 28th said, in different words, that it's a matter of when and not if on surgery being needed. The tumor is large enough that it runs a high risk of causing hydrocephalus again, despite his ETV (a shunt alternative), and it can begin to press into his brainstem and ocular center. All of those are very bad things. 

We know surgery will be long, difficult, and hold risks. To be honest they aren't risks I can type out -things I cannot face even as a "what if" in this moment in time. Henrik's tumor is as deep-seated in the brain as you can get. Not many neurosurgeons in the world have he experience or skill to reach the area due to the fact that tumors in this area are so rare that most surgeons don't get the opportunity to "practice." We're blessed to have an expert in this deep area of the brain in the Seattle area. Henrik's case is complicated beyond the "norm" since his tumor is badly adhered to major blood vessels within the brain. They have made three attempts to remove it before - none of them successful. We've been led to believe they would follow a similar course as they tried in 2015, but that attempt at a total resection (removal of tumor) was aborted mid surgery when initial pathology showed a malignancy (changing the plan from surgical removal to chemotherapy & radiation).

We feel absolutely confident in Henrik's medical team. We're nervous. No, nervous doesn't even touch it. We're scared. We feel a sense of dread over the coming days and weeks. We know we're surrounded by a Village of family & friends. We know we have hundreds of people praying for us and our son. We have strong faith in God and take comfort in that faith. Henrik is such an incredible young man - such a bright light. We hate that he has to go through this again. We hate knowing that he too is living in fear, dread, and with anger. Thank you for loving our son. 

5/10/21 update: by now we're in the process of scheduling surgery, just waiting to hear back from the hospital on a date. We know his surgeons need time to come up with a plan (how to enter his brain, the best way to spare his remaining eyesight, etc) but we're told it will most likely be within the next 1-2 weeks. 


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