Noah Jon Markstrom was born on January 20th, 2013, he was
the happiest, healthiest little boy ever. All of that changed on December 5th, 2017 when our world was turned upside down, our bright, fun and energetic 4-year-old Noah was diagnosed with a brain tumor.
In late November of 2017 Noah started not feeling well. His appetite declined and he began vomiting in the mornings. Over the course of a few weeks his symptoms persisted. Based on good advice we took Noah to Mary Bridge Children’s hospital in Tacoma WA. We walked into the Emergency Department on the morning of December 5th. Just minutes after getting a CT scan, the ER Dr delivered to us the horrible news. Noah had a brain tumor. A large brain tumor near his brain stem.
Noah would be admitted to the hospital immediately, and few days later have his first brain surgery. After a 6-hour surgery the neurosurgeon removed most of the tumor. We were then informed that Noah had what is called Anaplastic Ependymoma. A rare form of brain cancer, with about 200 pediatric cases per year in the United States. There were many, many complications after the surgery. Noah had damage to his cranial nerves. Because of this, Noah had to re-learn walking, talking, eating, using his right arm and many other things.
Noah would spend just over 7-weeks in the hospital, recovering and getting healthy enough to then start a long course of 6-1/2 weeks radiation and 5 months of chemo. There were many horrible setbacks and much suffering, but Noah soldiered through unbelievably, and always with his signature smile.
After finishing treatment in June 2018, life would start to return to something that resembled our past normal life. Noah would continue to recover from the original complications from the tumor. Many of the side effects from the radiation and chemo subsided. Noah got scans every 3 months to ensure the cancer was gone. We were blessed to be able to take lots of family trips and enjoy the summer. In September of 2018, Noah got to start Kindergarten. He had been looking forward to it since before he got sick. This calm would soon turn again to storm in February of 2019.
In early February, Noah started to get bad headaches. His health rapidly declined over the course of a few days and we would end up rushing him to the hospital, with that sinking feeling that something was not right. Noah’s doctors determined that his cancer had returned and a tumor was cutting off the flow of spinal fluid, causing severe pressure on his brain. Noah would again have to have emergency brain surgery. In all, Noah would end up having two surgeries to relieve the pressure on his brain and another two-week hospital stay. After more testing and scans, the doctors would determine that Noah’s tumor was growing back in the original location. It had also spread down his spine and to other areas of his brain. The diagnosis was Leptomeningeal Disease. Devastating news for us, as the prognosis was very grim. But again, Noah never complained. Noah went on to do another 6-week round of radiation and a variety of oral chemo drugs. All in effort to buy quality time against an incurable spread of cancer.
Fortunately, Noah felt very well through the mid part of 2019. We were again blessed with a spring and summer of family trips and special outings. Noah was granted a Make-A-Wish trip to Southern California to enjoy the theme parks and spend time with family. As fall approached, Noah would prepare for 1st grade. Noah was able to attend the first week of 1st grade before his health declined to the point he could no longer attend. Noah’s battle ended peacefully at home, surrounded by family on November 6th, 2019.
Noah amazed everyone he met. He was a favorite patient of many of the staff at Mary Bridge who have cared for him, many of whom Noah had a very close bond with. The same people who cared for Noah, also cared for our family. They taught us how to attend to Noah's complex medical care at home. This allowed us to take Noah on many adventures and give him an amazing quality of life, despite his treatments and limitations. They always went above and beyond for Noah and our Family. It was Noah’s love for those who cared for him that inspired us to start NJMF.
It is our hope that through NJMF, Noah’s kind heart and ever-positive attitude will shine on for many years to come.