Isaac R.
North Carolina
Birth Date - August 20, 2007
Diagnosis - Medulloblastoma
Theme: REALISTIC Amphibians, Reptiles & Insects
(No Snakes or Spiders)
Due Date: December 1, 2019
Isaac's Story
On August 1st 2018, our lives were forever changed. A few months prior to that, Isaac had been suffering from headaches that were misdiagnosed as allergies. As a last resort to figure out what was causing them, we took him for an eye exam. Midway through the exam, the optometrist stood up and said we needed to get to the ER immediately. She said his optic nerves were protruding and there was pressure on his brain. We rushed to Vidant Medical and a CT scan was performed. Moments later, the ER doctor came in and said, "Your son has a large tumor in his brain and needs immediate surgery." Two days after the tumor resection, Isaac was diagnosed with Medulloblastoma,, which is an extremely aggressive form of pediatric brain cancer. We chose to receive treatment at St. Jude. We knew the journey would be difficult from the start.
On August 26th, Isaac left for St. Jude. His treatment plan was to receive 30 rounds of high dose radiation and 7 months of chemotherapy. On August 31st Isaac developed a rash. By the next day the rash had started to blister. Isaac was diagnosed with Steven Johnson Syndrome. That is a severe and rare disorder of the skin and mucous membranes caused by an allergic reaction to medication. A few days later, his entire body was covered with blisters and open lesions. The Steven Johnson Syndrome swallowed 100% of his body. Usually, once they have found the cause, the blisters stop and about 30% of the body is effected. He was life-flighted to the Shriners Burn Center Hospital in Cincinnati, Ohio. He had multiple surgeries receiving skin graphs that covered more that half of his body. On September 19th the doctor said, "In all my years of treating patients with Steven Johnson, I've never seen a case as severe as Isaac's." In the same breath, he also said that he had never seen anyone recover as quickly as Isaac had.
Isaac was life-flighted back to St. Jude. His cancer treatment was restarted on October 1st. Just three days later, he was transferred to LeBonneur Childrens for an emergency shunt placement because the encephalitis had gotten worse and was causing massive headaches and vomiting. Over the past year, he has had 11 surgeries, and Chemotherapy has broken down his body beyond belief. The boy who once would spend all day outside looking for critters, can now only walk for about 10 minutes with his walker on a good day. We are at the point in this journey where Isaac has received as much of the highest dose of radiation that he can have for the next 10 years. He has completed 5 of the 7 rounds of chemotherapy. Unfortunately, the chemo he has received has damaged his bone marrow. It is not functioning properly. There have been absolutely no changes in his scans. While there is no new growth, unfortunately, all of the remaining tumors haven't changed, or reduced in size. This is scary because he has so many tumors that are still scattered all over his brain. He will not be able to continue treatment due to his bone marrow not functioning properly. His marrow can take anywhere from one to three years to heal itself.
We have decided that since this is what our life will be, we will make each day count. We are taking Isaac home and will let him be a kid again. We can't replace the past year of being a kid with no worries that he has lost, but we're going to do all that we can to make sure no more time is ever lost.
Here's to learning how to run again, how to ride his bike again, frog and bug hunts, time with friends and family, laying on the couch doing nothing if that what his heart desires, loving on his animals, arguing with his siblings, exploring new adventures, shrimping off the dock, playing in the river, making memories that will never be forgotten, and of course, swimming again! The possibilities are endless.
"Isaac is absolutely over the moon!! He keeps saying, 'I love it so much. Look at this one and this one! It's real animals.' Ya'll did a super, fantastic job! It is breathtakingly beautiful. I think the fact that each block is realistic makes it that much more exciting for him."
