Before Alex's diagnosis, he had been throwing up numerous times a day for over two months and we had been chasing a GI diagnosis with sedated endoscopy and other tests due to his misleading symptoms.  We had been to the Children's ER on numerous occasions and I had multiple doctors who told me "your son does not have a brain tumor" because he passed the physical testing they did with flying colors.  They were expecting symptoms like being off balance, one-sided weakness, headaches, etc.  Finally, after about the 5th trip to the ER, we were referred to a neurologist who ordered an MRI of Alex's brain.  On June 7, 2018, right after the MRI was performed, we were told to stay in the room waiting for what seemed like an eternity and then we were told someone was going to call the room and we should pick up.  On that phone call, we heard the words no one wants to hear "your son has a brain tumor".  That day our world was turned upside down.

The next few weeks were a whirlwind in which we met with the neurosurgeon and neuro-oncologist at Children's to review the brain MRI where we learned that his tumor is large, not fully able to be removed via surgery, and diffuse (mixed with healthy tissue).  During that time, Alex also had a needle brain biopsy performed to attempt to determine pathology of the tumor.  We were told the pathology information was important in providing information that would lead to a better treatment plan recommendation.  They sent the biopsied tissue to both Children's Minnesota and St. Jude's, but Alex's brain tumor pathology was reported as inconclusive by both places.  The report said they favored the diagnosis of a glioma (very generic type of brain tumor) but none of the pathologists who had reviewed the sample could say with 100% certainty the pathology of the tissue.  The genetic mutation tests on the tissue sample that they performed all came back negative as well.  With this knowledge, Alex's team of doctors were not comfortable with starting any aggressive treatment plan including surgery, chemotherapy, and/or radiation without knowing the pathology conclusively because the pathology usually defines what treatments may work best, so we were told that the recommendation was to repeat MRI's every few months, or sooner if any new symptoms presented themselves or his seizures increased because those things could mean tumor growth. 

Because his tumor makes him symptomatic with the seizures, the biggest part of his treatment right now is just trying to get his seizures under control with the help of his neurologist.  Even on two seizure medications, he is still not fully controlled, but we have no more actual vomiting on a daily basis and the seizures are much less on the medications.  This has been his biggest challenge so far with his diagnosis, but Alex is a trooper and tries his hardest to be a typical kid.

So for now, we take it day-by-day and live every day to its fullest until the next MRI scan and be happy that for now our son is surviving his diagnosis and thriving because we do not know what the future holds and when or if his treatment plan will change with each new MRI scan he has.

Places to donate for the cause that mean a lot to us are:  A Kid's Brain Tumor Cure ,  Children's MN , Ronald McDonald House

You can follow Alex's story on Caringbridge 

*Click on the photo of Alex to see more from his session.