On May 18 of this year, our lives – at least our plans for a wonderful, happy and healthy future – were a bit interrupted…
Zach initially began seeing the beginning symptoms of his brain tumor as a junior in high school, although we didn’t realize it at the time. What he called intense déjà vu moments, we chalked up to anxiety. His doctor even suggested they may be due to food he was eating. These episodes continued periodically until earlier this year, when they started becoming more frequent and were followed by partial complex absence seizures, where Zach would “zone out” for 60 seconds or so, smack his lips, and mumble nonsense. We consulted a neurologist, who unofficially diagnosed him with temporal lobe epilepsy and prescribed him anti-seizure meds. An MRI was then scheduled to rule out any other possible reasons for these seizures.
When the doctor wanted to speak to us immediately following his MRI, we knew something was up, since results usually don’t come in for several days. The doctor told us they couldn’t let Zach leave the hospital because they found a ping-pong-ball sized tumor on his brain. He was immediately admitted to the hospital, where he had more tests and spoke with a neuro-surgeon. Surgery was scheduled for a few days later, on May 23.
Zach came through surgery like a pro, and we were told they thought they had gotten the entire mass. Two weeks later, pathology reports from U of M diagnosed the tumor as a stage 3 Pleomorphic xanthoastrocytoma (PXA for short) – an extremely rare tumor that generally strikes younger children. Initially we were told this was good news – that this type of tumor, although still considered cancerous, was more treatable than, say, a glioblastoma. But then we were informed that a post-surgery MRI revealed that a small sliver of the edge of the tumor was still present. The Tumor Board recommended radiation to blast away those remaining cancerous cells. But the next MRI (yes, he’s had many!)– which they did the week treatment was to begin – showed that the residual tumor had grown significantly faster than expected since the first surgery. We then met with a different surgeon and a neuro-oncologist, and decided that another surgery to remove this tumor was our best option. The second surgery was scheduled for August 11.
Once again, Zach came through surgery with absolutely no effects, despite the surgeon’s expectation of weakness or numbness. But aside from headaches, Zach seemed to be totally fine!
Original pathology reports from this second tumor came back noting components of a stage 4 glioblastoma. Of course, this was not what we wanted to hear. Because of the inconsistent results, tumor samples were sent to PIT (Pittsburgh) and NorthWestern for further testing/opinions. After several weeks of testing, PIT reports came back inconclusive. They cannot confirm, nor deny, the original diagnosis of a PXA or the Glio. We are still waiting on NorthWestern to submit their findings.
Regardless of the technical diagnosis, the oncologist, surgeon, and U of M Tumor Board recommended the most aggressive treatment possible. So, this week, Zach will begin 6 weeks of radiation treatments (Mon – Fri), and chemotherapy treatment (7 days a week for 6 weeks), followed by 6 months of continued chemo (5 days per month).
Obviously, the last several months have been shocking, devastating, scary, and uncertain. Brain cancer is not a diagnosis you ever expect to hear, let alone for an otherwise healthy 23-year-old with his whole life ahead of him!
A recent insurance change has/will result in 3 separate terms of deductions, co-insurance, and out-of-pocket maximums over the course of 9 months. This, in addition to over 2 ½ months of lost wages so far, has been overwhelming, to say the least. If further testing comes back positive for a stage 4 glioblastoma, we will be seeking treatment from a more specialized brain tumor facility, such as Duke University or the Mayo Clinic, which will add a whole new level of expenses. As of now, medical bills we’ve incurred, as well as unexpected expenses (and lost wages for him and also his family, who take time off work to transport Zach to his many appointments) will likely be ongoing for an undetermined period of time.
Zach's biggest supporters (a.k.a. The Posse')
We humbly ask for help from those who feel
led and are able to give. Our faith and the love and prayers of our family, friends, and beautiful strangers who have reached out to us, have gotten us through so far, and will continue to sustain us through the days, months and years ahead. Thank you so much for your support. We can’t tell you how much it means to us.
- Rich VanderKlok
- Hannah Garcia
- Carol Goeldel Hancock
- Tracia Hayes
#1 fundraising platform
More people start fundraisers on GoFundMe than on any other platform. Learn more
In the rare case something isn’t right, we will work with you to determine if misuse occurred. Learn more
Expert advice, 24/7
Contact us with your questions and we’ll answer, day or night. Learn more