Saje, our cross country runner, was competing in the conference final for 7th and 8th grade boys on October 15, 2015. He finished 12 out of over 200 kids. He had been running all season and had been totally amazing. We stood watching him with tears wondering if he would ever run again. UNBELIEVABLE! See just over an hour before we (mom, dad and step dad) were sitting in a Dr’s office getting the news that he had a brain tumor. Saje didn’t know at this point. They told us his first symptom would be loss of balance or stumbling. He was running beautifully! He had a precision stride, he had long fluid movements, and he had absolutely beautiful balance, a tumor? NO WAY!
Saje had an operation on Monday October 26th at the University of Iowa to remove the tumor. The surgery went beautifully and the surgeon told us we had found this tumor very early.
Saje’s tumor was found because Saje has a genetic metabolic disorder called Glutaric Aciduria type 1. The disease he has is so rare there were only 77 living cases in the world when we were looking at his file for adoption. Saje has a Genetics team of physicians, PA’s and dietitians who care for him in Iowa City because there is not a Genetics team here in DSM. His diet is regimented and carefully followed. If his disease would go into crisis form he would stroke and not recover. He is a balancing act every day, and now we had to balance another life threatening disease on top of another.
Saje had a Make A Wish in the summer of 2008. He dreamed of having a dog, who was big and would kiss him “all the time”. That dream/wish came true with his beautiful dog Asia, the boxer. She meant the world to him. When the neighbor kids were outside being rough and tumble, Saje had his dog. When everyone was out running, which he could do but wasn’t allowed to because he was a fall risk, his dog kept him occupied doing tricks. Unfortunately Asia became very sick the night we told Saje he had a tumor and died later that week. It was horrible!
Saje had modified PE until 6th grade. Watching him run Cross Country was a dream come true for us as well as him. We never thought he would be so coordinated and fast after being restricted for so many years. What a blessing to see him fly on his feet! His brain had grown, he hadn’t had a crisis and he was especially thrilled he was going to be able to eat a regular diet. His GA diet consists of watching and counting every protein that crosses his lips, he was allowed 12 a day but over the years had increased to 24. He has a drink that he must do to keep his system balanced 3 times a day and a slug of vitamins and minerals with each drink. Every few years there was an MRI done to see if the white matter of his brain had increased, no changes meant his disease was stable. The longer it was stable the better. Finally on Oct 14, 2015 it was expected that his regular MRI was going to show no increase in white matter and they were going to allow him to eat normally. Instead, that routine MRI showed a tumor.
Recovery from his operation took about a month and then it was on to radiation. But being the “rare” kid he is, he had an “unheard of” reaction of brain swelling and ended up hospitalized in the PICU over Christmas. We celebrated Christmas with his 5 siblings on New Years Day when he was released.
Saje also had an unusually long battle with nausea after his first chemotherapy treatment which left him very weak. He has had issues with vertigo since surgery. Saje is now 1/3 of the way done with chemotherapy. He attends Speech Therapy, Occupational Therapy and Physical Therapy many times a week. Saje has made it to school about 1/3 of the days since surgery.
Saje is amazing, he is fighting hard. HE WILL RUN again! We are ALL looking forward to that day! God is giving him an amazing ability to smile through it all. He loves to write music. He loves being silly and we all enjoy being around him. We thank God that he has endured and even grown through this experience. SAJE IS BEATING THE BEAST!