Fundraiser set for Caleb Colyott

Caleb Colyott of Gainesville, Fla., who will turn 5 next week, is shown prior to his surgery to remove a blood clot on his brain, resulting in a massive stroke. The blood vessels in Caleb's brain were fragile due to his treatment for a brain tumor. A benefit is being held for the family in Princeton Saturday. (Photo contributed)

E-mail this story

Print this story

Share

GAINESVILLE, Fla./PRINCETON – Caleb Colyott loves a lot of things — John Deere tractors, his sister, Alexis, and the Florida Gators.

 For a child with so much love, so much heart, it’s hard to believe so much could be taken from him.

Caleb Colyott, 5, of Gainesville, Fla., whose family is formerly of Princeton, has traveled a very long, sometimes scary path filled with several life-saving surgeries.

He was diagnosed with Ependymoma, a brain tumor, in April 2004, when he was 16 months old. Since then, he has had a ventriculoperitoneal shunt placed in his head, with tubes to his abdomen allowing his spinal fluid to drain.

After doctors removed a portion of the tumor at Wolfson Children’s Hospital in Jacksonville, Fla., Caleb lost the ability to protect his own airway, so doctors put in a tracheotomy to allow him to breathe. A gastrostomy tube was also put in his stomach for food and medicine.

He underwent two cycles of chemotherapy and 33 conformal radiation treatments to his brain, after which he was in remission. When Caleb was 18 months out from the end of his treatments, an MRI showed more tumor growth, which was again removed by doctors. Caleb then went through another 30 rounds of radiation.

Amazingly, Caleb, who had been a part of a research trial with St. Jude Children’s Research Hospital in Memphis, Tenn., was only the 10th child of 27 children tested to survive to reach a second round of radiation.

Caleb was brought home again in July 2006 and was so excited to be able to play with his sister, Alexis, 7, and his John Deere tractors.

“Caleb also loved to play with marbles,” Sue Colyott said. “Some days he would choose a marble and keep it in his hand all day. There were many a night I would put to bed my sleeping boy and find the marble still clenched in his cute, little hand.”

Those moments came to an end suddenly this past summer while Caleb and Alexis were playing in the house, and he fell backwards and hit his head on the carpet.

Due to all the surgeries he’s endured, the blood vessels in his brain were very fragile, and the fall caused a blood clot in his brain.

“We knew he was predisposed to this; we knew he was fragile. But you can’t keep your child in a bubble. You can’t not allow them to try and enjoy the life they are going to have,” she said.

Caleb was life-flighted to a hospital, where doctors removed the blood clot, which caused a massive stroke to the right side of his brain. During the operation, Caleb went into cardiac arrest, and CPR was performed for 30 minutes before he was brought back to life.

After eight weeks in the hospital in a coma, Caleb finally woke up, but he wasn’t the same little boy.

Today, he’s in a wheelchair and does not respond to commands nor does he have any purposeful movements, but he does recognize faces. He also smiles and laughs at things he thinks are funny, Sue said.

He spends his nights in a hospital bed in his room, being rotated every few hours by his parents, and his days watching TV, undergoing his many therapies, or being read to by his sister.

“All that we can do is give him all the therapy and as much stimulation he needs to keep him going in the right direction. I would say he’s probably never going to walk again; he’s just been through too much,” she said.

Though his prognosis following the stroke is unclear, he’s in remission from his cancer, and his family continues to pray it will never come back; he will continue to have an MRI of his brain every few months.

“We have all these things we hold onto and believe in. We have a very strong faith and very strong friends and family support around the country,” Colyott said.

“We thank everyone who has already sent in donations, and encourage the entire Princeton area to come out for the fundraiser to support a wonderful little boy and his courage to heal and be happy,” she said.

Comment on this story at www.bcrnews.com.