Everyday is a Gift, Not a Given

Oliver is a smart, sweet 14 year-old boy from Kenosha, Wisconsin. At the age of 7, he was diagnosed with standard risk Acute Lymphoblastic Leukemia on May 3, 2011. He underwent 3.5 years of the treatment at Children’s Hospital of Wisconsin. His treatment was difficult, but with 90-95% success stats, there was hope. 3 months after ringing the bell, marking the end of treatment, the unexpected happened. Oliver was experiencing chronic headaches and double vision before an MRI was performed revealing accumulation of spinal fluid and swollen optic nerves. An LP revealed relapse in his spinal fluid. After following a 2 year protocol treatment plan, which included radiation to his brain/head, Oliver's second port. 2 short months later, he relapsed once again. At this point, the therapy options were limited and Oliver decided against enduring additional aggressive chemotherapy followed a bone marrow transplant. Thankfully, CAR-T was proving to have success at the time, and his mom was able to convince Oliver to give it one last fight. He qualified for a clinical trial at Children's Hospital of Philadelphia, but had a 5-6 month wait. A double-lumen central line was placed and this sent Oliver into a depression. He lived with the line for more than a year, while his mom flushed it daily and changed the dressing. Certain types of the experimental chemotherapy that were used caused seizure-like side effects and irritation/inflammation after repeated doses. At one point, his oncologists were convinced he had formed a rare tumor of leukemia cells on his spine and they performed biopsies and surgery to rule it out in order to remain eligible for the clinical trial. In July of 2017, Oliver received what would be his first of three CAR-T infusions. The T cells failed to persist so he received a transfusion in November and again in January. Currently, Oliver's blood is tested monthly and he receives IVIG to compensate for low IgG levels.

Throughout this journey, Oliver has learned that there are things in life that are out of your control. It's a priceless gift he learned at the age of 7 and again at 10 and 12 with relapses. His mother states,

“I learned to grieve for the first time, which has proven to be a lifesaver in all areas of my life again and again. We learned how to live life while holding hands with death at the same time. We learned to make the most of what we have - each day, week, month. We learned to hold any plans and expectations loosely, and to be immensely thankful when the future became the present. We learned to sacrifice for one another and forgive reality for disappointing us. Last, but not least, there are a bajillion awesome humans on this planet fighting cancer in the lab, in the hospital bed/crib, on their knees, behind the radiation, making wishes come true, placing IVs, donating blood, dispensing medications, knitting hats, and even designing dream bedrooms!”

We were SO excited to make this dream bedroom happen. Oliver is a curious boy, and he can't help but be drawn to all things magnificent in creation. He loves history, maps and geography, and biology. Oliver is a serious birder. He loves collecting plants, rocks, feathers and eggs. He is known to paint beautiful pictures of birds when the mood strikes him, and his camera is his best friend. When he isn’t creating masterpieces or traveling to find species of birds that he’s never seen, he enjoys watching nature documentaries, reading, listening to music, and doodling maps. His favorite colors are coral and turquoise. Oliver deserved a special oasis filled with his favorite things - a place where he can explore, learn, create, dream and recover. We helped this come to life in November of 2018.

by Kelly O'Donnell

Executive Director

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