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McKinley’s Story

Site created on December 21, 2019

Over the last 4-6 weeks McKinley has complained about headaches. After a trip to our pediatrician on 12/11 nothing stood out, but an MRI was ordered to rule out any internal brain issues.

On 12/19 we brought McKinley to Children’s Minnetonka hospital for, what we hoped was, a routine MRI to rule out anything. As we waited in the family room for the MRI to finish, a nurse walked in ahead of the scheduled finish time and we instantly knew something was wrong by the look on her face. The nurse brought us to a private room and had us speak with with a pediatric oncologist. We were told they located a Ependymoma tumor in the 4th Ventricle of McKinley’s brain which is putting pressure on the brain stem and obstructing the flow of cerebrospinal fluid. Because the flow is obstructed, it’s is causing pressure in McKinley’s head, thus the headaches. Devastated doesn’t even begin to explain how we felt.

Over the last 2 days of finding out about the tumor we’ve had multiple appointments with her Neuro and Oncologist team to discuss what’s next. McKinley was prescribed a medication to slow the production of cerebrospinal fluid to hopefully ease the pressure in her head. In addition to this medication, we’ll be in and out of Children’s a couple times leading up to the “big day”. McKinley will have multiple labs and blood scans done, as well as a spinal MRI. The spinal MRI is being done to ensure her spine is healthy (no tumors) and her doctors can get a good look at her upper vertebrae.

The “big day”- Surgery to remove the tumor is scheduled for January 2nd. Per our surgeon it will be a long evasive surgery that is scheduled for the entire day. Two incisions will be made in her head, one on the side of her head to secure a drain and the other in the lower back of her head to remove the tumor. Fortunately, Children’s St Paul hospital has an operating room with an MRI machine located inside of it, called the IMRI Suite. This will allow the surgeon to remove the tumor, then take an MRI before closing up to verify everything has been removed. If something else is spotted while she’s open, they’ll go back in to remove it and repeat the process.

Post surgery, the tumor will be analyzed and we should get results within 7 days. Should all go as well as it could, McKinley will be in the hospital for 7-10 days following surgery. If chemotherapy is necessary, it will start a month after that. Her brain needs some time to heal from the surgery prior to beginning additional treatment.

We would like to thank everyone for the tremendous outpouring of support during this difficult time. Updates will be made as we have them.

Newest Update

Journal entry by Ashley Paulsen — Mar 9, 2021

Hey everyone! It's been a busy couple months.

Crazy to think this day, last year, we moved home from Mayo after finishing radiation. March 13th, 2020 was a day filled with a million different emotions - SO excited to be done and coming home, but also SO scared to be back to "normal life". (I also will never forget walking into Target that evening in hopes of getting groceries & our store was empty 😅, our state went into lockdown 48 hours later!!) We had been in a bubble for almost 4 months between surgery and treatment, that we didn't know how to go about daily life without freaking out at everything Mc said or did.

March 13th, 2021 we can celebrate that McKinley's scans this week LOOK GOOD! Her brain MRI was clear of any new tumor growth, spine MRI was clear, lab work good, and hearing good!

Hearing is looked at closely a year after radiation as she could suffer some hearing loss following treatment.

In April, Mc will have a couple other appointments - vision test (same note as above, vision can suffer from treatment) and neuropsych exams. Neuropsychology is how the brain and nervous system influence a person's cognition and behaviors. This will look at the illness/injury to her brain and see how it's been affected.

Our next set of scans will be in June. (we're still on the 90 day scan path)

Mc turns 4 in a couple weeks and we’re looking forward to celebrating the way we should! Bring on 3 more months of normal!

Read More of the journal titled "Update!"

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