Caleb was just like any other 3-year-old. He loved playing outside, attending pre-school, and playing t-ball, soccer, and bowling. But that all changed on August 30, 2018. What started off as a normal morning quickly turned into a day that changed our lives forever. After Caleb had a seizure he was rushed to the hospital where they found a mass on his brain. They performed surgery the next morning to remove the tumor, and we waited 2 weeks for pathology results... and then we got the news that he has AT/RT. We were told survival rates are poor, and we were devastated.
We researched treatment options and decided on St. Jude in Memphis. St. Jude had a treatment plan that differed from other hospitals, and that included trial chemo as well. We moved to Memphis 4 days after we received the news and spent almost a year there in treatment. Caleb underwent 30 rounds of proton radiation, followed by 5 rounds of high dose chemo. We were able to return home to Tampa in July 2019 with Caleb classified as NED. We finished with 6 more rounds of oral chemo at home.
March has and will be one of the most important months every year for the rest of Caleb’s life. March 12, 2020, marked the official end of Caleb’s treatment and was the day he officially rang the bell to mark that amazing milestone. A milestone his first oncologist all but said he would likely never see.
March 2021 Caleb and I traveled back to St. Jude not only for his every 12 week scans, but this time for his 1 year off treatment scans. And I am so happy to share that Caleb’s scans and CSF are completely clear and Caleb remains No Evidence of Disease! His doctors are absolutely amazed with his progress and will continue to monitor every area of his development.
Unfortunately, his overall treatment hasn’t come without long term side effects that have continued to develop over the past year:
Caleb has now permanently lost 100% of his high frequency hearing and 50% of his vocal hearing in both ears (this was identified right after treatment and has gotten progressively worse each visit). Caleb will require hearing aids for the rest of his life.
During this visit, Caleb’s team identified a newly developed Cataract in his right eye (right below the original tumor area) caused by radiation which is now impacting his vision in that eye requiring him to need glasses. Something that will be closely monitored going forward.
Lastly, it appears the radiation has begun to affect Caleb’s “seated height”. While not out of range, his seated height has now reduced from the 75th percentile to the 50th and is expected to require growth hormones going forward.
While the above are minor bumps in the road, these haven’t slowed Caleb down…
Caleb is now a thriving Kindergartener and attending in person. This has been a key aspect of his overall development, mental health and continued ability to surpass expectations!
Since the day he went in for his first surgery, Caleb’s superhero has been Batman. To this day, Batman remains Caleb’s favorite, above all else.
Caleb is also very well known for his signature color green. Whether it is his jacket or his shoes or the popsicle in his hand, it will always be green!
Speaking of green, Caleb’s favorite food…green popsicles…well at least he will tell you that is food! If not eating a popsicle, you are likely to find him with a piece of cheese pizza, cheez-its or most likely a Chick-fil-A chicken nugget!
Caleb also loves to ride his scooter, swim in our pool and play hockey or basketball. If you can’t find him outside he is likely inside playing Roblox or Minecraft on his iPad, perfecting his “building and design skills” (his words), as he wants to be an engineer and scientist when he grows up!