Beginning a few months prior to Blake’s 2nd birthday, he began to lose his balance and fall more and more. Assuming this was due to how big of a boy he was, we weren’t too concerned. He drooled a lot—so much so that every day, sometimes multiple times a day, it would soak his shirt all the way to his belly button. He had always been a “drooler”, though; our doctor said he was just a drooly kid. The big red flag for us was when I noticed him not using his right hand—at all. On Wednesday, June 24, 2009 we took him to see his pediatrician. She was out that day, so we saw another doctor in her office, who immediately sent us to Children’s Mercy to get a CT. At that point, I knew something was very wrong; however, nothing could ever prepare me for the next words the doctors would tell us. “Your son has a very large brain tumor. He needs surgery tomorrow, first thing, or he could die”. Blake was immediately admitted to Children‘s Mercy Hospital, in Kansas City, Missouri. He had an MRI done first thing that very next morning, June 25th, 2009 followed by an 8 hour craniotomy. Due to the tumor’s location they were unable to resect it all. The biopsy revealed he had a fibrillary astrocytoma, a low grade tumor that can typically remain stable for many years after surgery.
Blake’s stay at Children’s Mercy was only 2 weeks long. Immediately after we were sent home, Blake started outpatient therapy at Ability KC for Occupational, Physical & Speech therapies. We were scheduled for an MRI’s every 3 months. Unfortunately, Blake’s tumor didn’t exhibit this characteristic. In December 2009, only a week from Christmas we learned his tumor was rapidly growing. In February 2010, Blake began chemotherapy, by May 2010, we learned that his tumor was not responding to the chemo and that his tumor was continuing to rapidly grow. Our doctor said it was almost back to the same size as pre-surgery.
Our oncologist didn’t have a plan for what to do next, and we were told “Enjoy your time with him, there is nothing more we can do.” We did not take that for an answer and so I began searching for another option. After researching several hospitals, we decided to take Blake to MD Anderson Cancer Center in Houston, TX, for a second opinion. There we learned that Blake was a candidate for a type of radiation known as Proton Beam Radiation Therapy. Blake spent his summer in Texas being sedated daily Monday through Friday. At his 1 month follow up post radiation, his tumor had stabilized. 1 year later (summer of 2011) his tumor has shrunk substantially. Since 2011 Blake’s tumor has remained stable & fall of 2015, Blake’s officially joined the SURVIVOR CLUB!!
Blake is now 13 years old. His brain tumor/craniotomy caused him to have right sided paralysis/weakness, epilepsy, ADD, & a learning disability. For the last 11 years, Blake has spent countless hours receiving PT, OT & Speech therapies (formerly at Ability KC & currently Playabilities in Prairie Village). Spending evenings, summers & winter breaks doing intensive therapy. Blake will need these services indefinitely. He gets muscular Botox injections every 3-4 months to help with his tone on his right side (tightness in the muscles he is working to use) and takes oral baclofen to help too. Blake also takes growth hormone injections. He has minimal use of his right hand & currently wears a AFO (leg brace) on his right leg. He is hoping to get the Walk Aide to improve his walk and strengthen his leg!
Blake loves Batman, video games, arts & crafts, Legos, and spending time with family & friends. He is an old soul & has a big heart. He almost always has a smile on his face. He has inspired so many people with his miraculous journey & positive outlook.
Blake is a living miracle. He has overcome so much & is an inspiration to many! He doesn’t let his disability hold him back. You should see this kid play xbox one handed-its pretty remarkable! As he has gotten older, he has taken his therapy seriously, doing home exercises/stretches. Blake has had a leg brace since he was 2. He doesn’t complain much about wearing it, but I know he just wants to be “normal” and not need the brace.
After working with Blake, his therapist recommended we go to Hanger & try the Walk Aide. Blake tried on the cuff & was so impressed. One little cuff on his calf – his walking almost immediately improved. Not only that but after talking to the orthotist-it would help strengthen Blakes muscles + improve his gait. Seeing him so excited about something & knowing that it will help improve his walking and his life-was emotional for me! With leg braces, we have to get a new one every year, cuz he out grows them. The Walk Aide would last him his entire life. Its adjustable & the components are replaceable if something breaks or needs upgrading. Not having to ever buy another brace would be so fantastic! I really think Blake‘s confidence would improve and who knows-with the Walk Aide-maybe one day he would no longer need a support device!!
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