This is Caleb. He looks like any other 4-year-old. He loves trucks, animals, and doing anything outside. He’s the youngest of 5, with the second youngest being 16! His middle name is Able, from the verse Ephesians 3:20. “Now to Him who is ABLE to do exceedingly abundantly above all that we ask or think…” (emphasis mine) since he is a special, bonus blessing; above all we could ask for.
In October 2022, we brought Caleb to Vanderbilt Children’s ER. Caleb was having “growing pains” in his hips on and off for two months, which suddenly became worse. I just knew we’d finally get an answer, meds to fix it and be on our way back to our normal lives. Instead, our world was turned upside down.
On the day Caleb turned 23 months old, he was diagnosed with stage IV high-risk neuroblastoma: a rare, aggressive cancer only seen in children. It was all over his body: his scan lit up from the top of his head all the way down. The best chance for his survival was a very aggressive chemo/radiation/immunotherapy regimen, and with that he was given a 50/50 chance. I felt like God and the devil were flipping a coin for my baby’s life.
The first month after diagnosis was a blur. We spent two weeks straight in the hospital. Scans, biopsy, port placement, and the first round of chemo. I spent many nights crying and having hard talks with God. I had to watch my baby being poked, held down, given med after med after med. We told him this is to make his legs better and him walk again, and mom and dad will be with you the whole time, but it was still so very hard on him. And us.
We decided early on regardless of the outcome, we were going to live like Caleb is going to make it. We tried our best not to think of the worst, but take each day as it comes, one day at a time, trusting God in each moment. Because God is good. Even when our circumstances are not. And nothing can truly take our child from us if we believe, because this world is not our home.
Caleb began responding to chemo right away. Even though he lost his hair, he could walk and run again (when he wasn’t knocked down from treatment), and we got our baby boy back. We did our best to live and play and celebrate little wins each day even when he was at his sickest. Kids are so strong and teach us so much about life. Cancer warriors are truly so brave and special.
Caleb’s scans continued to show improvement at each one. We prayed he would always go forward and not backwards. We prayed he would come through the fire not even smelling of smoke, and on 7-7-2021, he was declared NED (no evidence of disease) with a Curie score of zero (clear scans) and negative bone marrow! A date we will always remember God’s goodness on.
In the summer of 2021, after much prayer and lamenting, we decided to switch Caleb’s care from Vanderbilt to MSK Cancer Center in NYC, to opt out of the traditional path of back-to-back stem cell transplants with high dose chemotherapy. While the overall *survival rate is better with the traditional approach, MSK’s treatment path is cutting-edge and less toxic. Additionally, MSK has been treating cases like Caleb from all over the world for 20 years now. Furthermore, MSK pioneered the development of immunotherapy that is now being used in children’s hospitals worldwide for neuroblastoma.
Both hospitals have taken excellent care of my son, and Caleb still has follow-up care at Vanderbilt to this day.
Caleb finished his front-line treatments at MSK and is currently in a 3-year clinical trial there for a vaccine to prevent a cancer recurrence. Imagine that! A vaccine against cancer! He will finish his part of the clinical trial in January 2025. This research will prayerfully save other children from neuroblastoma relapse (very high relapse rate at 50%), as well as pave the way for other cancers to have more treatment options.
We are thankful Caleb gets to be a part of making a difference in how children survive cancer in the future. He does not look like a childhood cancer survivor; he looks like a (mostly) regular kid. We believe this is the future as more and more children have better treatment options and survival rates. Until one day there is a cure. Or better yet a vaccine to prevent cancer all together.
That future is possible, but we need your help. Book for Hope donates 32% of all its funds raised each year to childhood cancer research. In 2022, $58,000 went to Memorial Sloan Kettering in Caleb’s honor to fund research. We must keep up the good work, we must keep up the good fight. Together we are changing the face of childhood cancer.
Written by the mom of Caleb