Meet Brian Senior High Schooler with an amazing story

My son Brian is loving life as a senior in high school. But life hasn't always been so easy for him. Just before his third birthday, our otherwise healthy 3 year old began waking up screaming holding the back of his head in pain. After several attempts to figure out what was happening his dr ordered a MRI. Well he never made that appointment. On Sept 20, 2001, our world changed forever. As i was getting Brian up for pre school he displayed some unusual symptoms. He couldn't stand or walk without falling. At first i thought he was just being silly but quickly realized this was no joke. I called my mom, who was a retired Neuro surgery intensive care nurse and said call the doctor and pack up for the ER. While the phone nurse she was asking me questions and he started all of those things. After alerting his dad, we took him to the ER at Children's hospital. There was no waiting, they swept my baby out of my arms and took him threw those double doors. As we waiting to here something and see our baby, a million things ran through my thoughts and prayers. Once back with our son, we were asked to sign permission for tests that we didn't know anything about. It was the first time as a parent that i felt helpless. Making our son lay still as needles went into his body for the first time was the worst. Tears running down everyone's face telling him" its going to be ok" when honestly we didn't know if it was, was horrible. Back in those days, where was no numbing them up before spinal taps. This was days of torture. Finally a few days in isolation, we were told our son has a mass on his brain stem. But because of its location, it was too dangerous to biopsy. They believed it was a fast growing glioma and we will do our best to keep him comfortable but you need to know he only has 2 weeks at best to live. Our world was crushed and in shock. What? How can you say this without knowing what this mass is? Even his regular pedestrian cried with us. Questioning whether waiting so long to get a MRI would of changed things. My husband was told to take a leave from work and spend time with Brian and prepare to bury our son. Well God had other plans for our son. As days and weeks went by our son survived. We even got to take him home and began to do out patient testing. I started taking him to different church's for healing and prayers. Meanwhile we still didnt know what was killing our son. One day during testing, Brian began to act funny. I stopped one of his drs in the hallway to look at him. She responded "oh Mrs Ott, your exhausted. He is fine. Go home and get some rest". She never examined him or even glanced at him. So i took him home. Stuck in traffic Brian fell asleep. I had only a cell phone for emergency's . I called my mom and told her how he was acting. She immediately said get back to the hospital as quick as you can. She called his dr and Steve. We went straight up to the 9th floor. And within a hour they where drilling a hole in my babies head. He had a 4 vertical blockage and vp shunt was placed in his head. He again was saved by the grace of God. But not without damage. The next few weeks were brutal. We waited and watched while drs tried to figure out what was killing our son. He stopped eating, talking, walking. I cried constantly until one day. Brian asked me why i was mad at him. I asked why would you think that. He said Every time you look at me,you start crying. So that was the game changer. I gave myself 24 hours to cry and be mad. And then i never cried in front if my baby again. I did however become furious. With the support of his main doctor, we seeked another opinion. I felt God was telling me to stay in St Louis for the sake of my family.So we ended up at Cardinal Glennon. And we never looked back. We found Dr Kelly. Brain and spine wasn't his specialty but he was good for Brian. As Brian would say" he never gave up on me". At this point Brian was too weak to under go any more biopsies so we spent time "beefing him up". In January of 2002, after months of pain, hospitalizations, a new MRI showed the mass had grown up in his cerebellum. Now after all this time we were able to get a diagnosis. Juvenile Pilicytic Astrocytoma. So most people would freak out over the words cancer. But we embarrassed it. Now with a diagnosis we can come up with a plan to fight this beast! Dr Kelly told us that he was not confident Brian would survive the treatments but hopefully they will help his pain. But with God blessings, and lots of excellent care and therapy, Brian improved. After 2 yrs his tumor shank to the size of a pea. He was doing so well that they took his port out because it bothered him so much. Life was good or so we thought. We lost my mom in October of 2003. She was my rock. And 2 weeks later Brian relapsed. Again he was wheel chair bound. He went down fast. Back to a wheel chair. This time facing the beast without the guidance of my mom. And this time radiation was recommended. It was a very difficult discussion. My mom made me promise her to never radiate Brian. But drs told us because his cancer had spread all thought out his brain and spine, it was our only chance to save him. So in 2006 after 2 types of chemo failed he went through 55 days of full brain and spine radiation. The procedure was bad enough but recovery was brutal. It was watching him fight everyday in therapy to walk again. Watching him struggle with every task, that i knew God had big plans for my child. Brian had told me back in the days of preparing him to die that he was going to die because he had already and God sent him back to me. I never thought twice about it until then. Again Brian defyed the odds and survived. Next plan was chemo therapy after the radiation didn't cure him. He remained in ot/pt and on various chemo therapy. Our beloved Dr Kelly moved away and dr Hugge took over his case. More changes his nurse left and so we had to adjust to lots of new things. Brian adjusted much better then i, lol. In 2009. Brian developed a huge tumor on his spine that would eventually paralyze him. So once again faced with the unknown. It was a time where the hospitals neurosurgeon had left. We went back to original hospital. And Brian started hyperventilating. So we knew that was not a good fit. So off to Memphis we went. Dr Boop was a surgeon who had did the impossible on a friend and Brian liked him.The dr told Brian the work was up to him. They expected us to be there a month but Brian had the fight to get home and we were home in 10 days! Dr Boop was amazed! Brian again fought to walk and get out of his wheel chair. And for the next years he did just that. He remained on chemo therapy until 2 years ago when his body started to fail. Too many years of therapy they said. So Brian has amazed the drs by remaining stable. He is not cancer free but he is doing well. Adjusting to the new norm. Life without hospitals and needles. I like this new life, he would say! Don't get me wrong, it has come at a high cost and it will always be with him but he survived and loves life. Cancer is horrible but the blessings it has given him out weighs the bad. Brian is living life to its fullest. He loves to volunteer at camps and for organizations that helped him throughout his journey and loves being s mentor and counselor to young kids going through cancer . He also plays on a hockey team.

Thanks for reading his journey