As submitted by Oskar’s mom, Elisabeth:
No cause has ever meant more to me than the Children’s Tumor Foundation’s goal to end NF!!
My son Oskar has a brain tumor and has been on oral chemo for almost 1.5 years – a treatment that has shrunk his brain tumor by 85%! The treatment was FDA-approved in 2020, thanks to the research and advocacy done by the Children’s Tumor Foundation. But we aren’t done yet – we need treatments for all tumors and all types of NF. Please donate today at ctf.org/timeisnow.
THE ROAD TO A DIAGNOSIS
When I think back on the days leading up to my son Oskar’s neurofibromatosis type 1 (NF1) diagnosis, my eyes start to water. My anxiety shoots through the roof because my fear of the unknown was so intense.
During Oskar’s two-week checkup, I mentioned to the doctor that Oskar had a lot of “birthmarks,” and the doctor told me that as long as there were less than ten, I shouldn’t be concerned. At Oskar’s one-month checkup, he was up to about 15 café au lait spots. Our pediatrician, at the time, told us that Oskar might have neurofibromatosis. We had never heard of it. When I asked what neurofibromatosis was, the doctor told me, “Worst case scenario, your kid will be the elephant man.” I didn’t know at the time that he was referring to the wrong disease. Needless to say, he was very quickly fired as our pediatrician.
Our new doctor referred us to Seattle Children’s Hospital to do genetic testing. When I called to book Oskar’s first appointment, they told me that they were booking out two years in advance and would get back to me. I have found that telling a mom, “Your child’s health isn’t a priority,” especially when it is your firstborn, and you have been scare-tacticed into the situation, is not a good idea. I ended up reaching out to numerous other Children’s Hospitals all across the state, and thankfully, UW Med Center was able to get us in within two weeks. That first month was some of the hardest days of my life. I caught myself staring at my son and crying, thinking of all of the unknowns and the what-ifs that were in store for us.
OSKAR’S BRAIN TUMOR
My son’s tumor was found on Feb 14, 2022, and we started treatment on March 3, 2022. We learned that the tumor was sitting directly on top of his optical nerve, and if we did nothing, he had a very high chance of impaired vision or blindness. The doctor had explained that the goal wasn’t to “shrink” the tumor but that we needed to get it to stop growing. The tumor was also causing him to grow too quickly and not gain weight, which left him looking like a malnourished 7-year-old at four years old. We decided to have him go on the oral chemo for many reasons, but the main reasons were that it was much less invasive on our son’s body, and I had faith in the research done by the Children’s Tumor Foundation.
He takes two pills twice a day (4 pills a day). In the beginning, our biggest struggle was the food restrictions around the medication – no food for an hour after morning pills and no food two hours before night pills. We quickly implemented a family rule that if Oskar can’t eat, no one can eat.
We had Oskar’s first follow-up MRI on June 21, 2022, and our follow-up with his doctor on June 22, which happens to be my birthday. We were told that there had been a 37% reduction in size. BEST BIRTHDAY PRESENT EVER!
Over the year and a half, we have continued to take the same medication and have MRIs every three months to review the status of the tumor. For the first year, every MRI result showed shrinkage, and for the last six months, the tumor has been stable.
Tumor shrinkage and stability are the holy grail words for any family dealing with tumors. It gives us the opportunity to breathe. Stability gives my son the opportunity to be a kid without major medical complications, for the time being. Shrinkage gives us faith in the research and advancement happening thanks to the Children’s Tumor Foundation. It also increases our motivation and commitment to raising funds, awareness, and advocacy for and about NF.
DEFINING MOMENTS
- NF has taught our entire family that tomorrow isn’t promised and that we need to be kind and enjoy our lives.
- Seeing a side-by-side picture of Oskar on our digital photo frame and realizing that my little boy looked malnourished and sick. (see photo below)
- “Your son has a brain tumor.” To this date, these are the scariest words I have ever heard.
- Hearing, “Oskar’s tumor has reduced in size by over 85%”
THE TIME IS NOW TO END NF
Advocacy, research, and advancement in NF give NF patients and our families HOPE. We will find a cure to end NF, but we can’t do it alone. We need your help. I am grateful for all of the support financial, emotional, and informational that we have received for and from CTF, and I ask you to continue and deepen your commitment to CTF by donating now at ctf.org/timeisnow
