Jacob’s Story

The beneficiary of the 1st Annual Sean Ryan Memorial Golf Classic is Jacob Bongers, of Lonsdale, MN. His mother, Larissa, shares his journey battling brain cancer in the heartfelt message below.

Jacob was diagnosed with a Medulloblastoma, a form of brain cancer on November 19, 2021, right after his 9th birthday. Jacob started having migraines the summer prior to his diagnosis and began losing weight. We met with our primary doctor and she saw some “red flags” and referred us to a neurologist. Within a couple of days we heard back from neurology at Mayo Clinic, got an appointment with neurology and had an MRI all scheduled for the following week. Jacob’s MRI took longer than we expected but we didn’t think much of it. We were leaving the parking ramp at St. Mary’s to head home when the nurse called us to come back to St. Mary’s as the doctor wanted to talk with us. When we walked into that I knew it was not good. I saw the scan on the computer screen and could see the tumor.  I fell to my knees, a parent's worst nightmare. Jacob was then admitted into the hospital and had brain surgery a few days later. 

We were told that Jacob may not be able to talk, walk, ride a bike or feed himself after surgery. When we walked into the room to see Jacob and he said, “Mom” it was the best feeling in the world. Though Jacob had to learn how to walk, eat with a fork, do fine and gross motor activities after surgery he was able to talk! He can now ride a bike with no problem.

After his surgery he underwent 30 rounds of proton beam radiation. He was put to sleep everyday for radiation therapy to his spine and brain. The after effects of his radiation have affected his growth and hormone levels and will continue to affect him as he gets older. We have a great endocrinology team that we meet with to monitor his levels carefully. 

Jacob then started six months of intense chemotherapy which consisted of a week in the hospital each month for two chemo medications followed by one chemo medication in the clinic. His blood levels were also affected with each treatment which required several transfusions of blood and platelets. The side effects of chemo were very intense.  Jacob has struggled with nausea ever since. He has also had trouble with the nerves in his legs and feet which has affected his balance, running, jumping and hopping.

After his treatment was complete in August 2022, he continued with routine scans every three months to make sure the scans remained clear. We made it to a year and a half of clear scans! Things were finally getting back to “normal”. Jacob was beginning to feel like a typical kid, feeling great both mentally and physically and enjoying school. We could finally start to breathe again.

Then came March 4, 2024...Jacob had scans that morning, then we got the call I had been worrying about after every scan. His cancer had returned. This news was devastating for our whole family, how would we do this all over again. Where would we find the strength? Jacob started chemotherapy again in March. The plan going forward is to continue chemo for one year. This includes having IV chemo in Rochester at Mayo Clinic every other week and then taking two oral chemos at the beginning of each cycle for five days. Scans will also continue every three months to monitor if the chemo is working. The hope is the chemo regimen will decrease or stabilize the cancer cells. 

The doctor told us that when this type of cancer comes back the outcome usually is not good. It will continue to come back as there is not a cure but we will just continue with treatment. No one knows the future and each day is a gift. We are taking one day, minute and second at a time and cherishing each moment. 

A diagnosis like this affects the whole family but has made us stronger together. All the unknowns are hard to handle especially for our other two children, Martin (13) and Kailey (9). The anxiety is unreal but with the support of our friends, family, school, doctors and community it sure helps each step of the way. 

Jacob has had more pokes, appointments and hospital stays than I can count and I have learned more about medical terms, medications and doctors than I ever imagined. Jacob is a true superhero who amazes all that he meets with his outlook, faith, stubbornness and sense of humor. We are truly blessed with all the support, prayers and love we have received over the past three years and continue to receive as we once again fight the fight together. 

Thank you again from the bottom of my heart for your support, prayers and love as we BEAT this awful disease once more.

-Larissa Bongers