TRUSSVILLE — A Paine Elementary student has been named the beneficiary for this year’s Trussville Witches Ride (TWR) on October 22, 2022.
According to the TWR Facebook page, Caleb Wilson currently fighting a type of cancer called Neurofibromatosis Type 1 (NF1), a genetic disease that results in the growth of tumors in the patient’s nervous system
Caleb’s mother, Heather Wilson, explained to TWR that her son’s journey began when he was born.
“All new children are a journey for sure but unbeknownst to us, ours was about to take a turn no one expected but God,” Heather told TWR. “Caleb’s life and his fight started at the same time really. He was born premature due to prenatal complications and left the hospital with a “clean bill of health” in 48 hours yet weighing only 4 pounds 12 ounces.”
However, within two weeks, the family was back at the hospital trying to tamp down a fever in their newborn son, and would spend the next two weeks in the pediatric intensive care unit.
Heather said that Caleb was diagnosed with viral meningitis and was the “unwilling recipient of a spinal tap.”
“I had never seen such quarantine for a ‘healthy’ child while we waited to see what his culture would produce,” Heather said to TWR. “Thankfully we were released and spent the next few years in relative peace as a budding family, only that relative peace was to be short-lived.”
Around summer 2014 at Caleb’s three-year check-up, the Wilson family was given another hint of what their journey was shaping up to be.
“His pediatrician informed us that he had been monitoring Caleb over the last few years and was ready to diagnose him with Neurofibromatosis Type 1,” Heather said. “See, Caleb had always had multiple ‘birthmarks’ on his body, at least that is what we thought they were. In actuality they were cafe au lait spots or ‘cow spots’ and they along with a few other signs proved the pediatrician’s diagnosis true.”
This day marked the beginning of their next phase, the search for answers.
“Answers we were to find. Answers we never wanted but needed so we could help our child,” Heather said to TWR. “We were given the name of a geneticist at UAB qualified to confirm the diagnosis of NF1. From there, over the next several years, we were referred to neurologists, oncologists, neuro-psychologists, orthopedists, and ophthalmologists, to name a few. All trying their best to help our son.”
Heather explained that the doctors were handed the role of delivering bad news after bad news to the family visit by visit. Caleb was ultimately diagnosed with a plexiform tumor in his right foot and an optic glioma (brain tumor).
“His foot was the first we noticed,” Heather told TWR. “It was much flatter than his left and it was obvious that as he developed in his mobility something was wrong. His tumor was unlike other tumors in that these types don’t grow as a solid mass like typical tumors. These grow like a ‘bag of worms.’ They wrap themselves around tendons ligaments and nerves and in his case, the sciatic nerve running from your feet all the way to your back.”
The family’s newfound scenario rendered few treatment options due to his specific disease (NF1) and the location and type of the tumor now in his dominant foot. After consulting with the head of pediatric neuro-surgery at Children’s Hospital they were informed that surgery was 100 percent out of the question.
“We also were unable and still are unable to be treated with any sort of radiation due to the effects of NF1 growing tumors in the nervous system,” Heather explained to TWR. “Radiation only exacerbates tumor growth in these patients. The only bullet in our gun was a chemotherapy pill that was still in trial form. We were suddenly faced with a decision no parent wants to face, put your young child through a trial chemo medication or potentially watch his foot die as he begins to drag it, slowly losing motor function all the while his vision decreases starting with the peripheral. We, after much thought and prayer, chose to fight. The risks were high and so was the stack of paperwork we had to sign releasing all rights to a legal suit if the worst turned out to be true, releasing rights to matters such as infertility and internal bleeding.”
For a solid year and a half, Caleb was on chemotherapy for his foot and his brain tumor. Luckily, it appeared that the specific medication, future risks aside, was helping. His brain tumor (optic glioma) shrank slightly after a few months and it appeared to be softening up the plexiform tumor in his foot.
“We were excited,” Heather said. “This was the first good news we had received since his original diagnosis but this peace too would be short-lived. By about the 18-month mark we had to pull Caleb off of the trial because of large amounts of internal bleeding, one of the side effects we were dreading.”
For just shy of a year, Caleb continued to meet regularly with his oncologist receiving regular MRIs. In July of 2021, the family received a call from Caleb’s oncologist with the results of his most recent MRI and vision test. Caleb’s brain tumor had doubled in size and the cells in his peripheral vision had died resulting in vision loss in his right eye.
“A phone call I will never forget; It was a Thursday,” Heather told TWR. On the following Monday, we were scheduled to receive a port for traditional chemotherapy starting Tuesday, the next day,” Heather told TWR. “We were scheduled for 70 treatments. Visits once a week for roughly the next year and a half. Throughout the run of traditional chemo, we have actually seen positive and hopefully lasting results. His brain tumor is now roughly half the size it was when we started.”
Although Caleb’s vision is gone in some respects and will not return the family has been able to stop the growth so far. His plexiform tumor in his foot however is not treatable with this chemo and has grown significantly since Caleb was removed from his trial medication. They are currently in the seventh of eight total phases of the 70-week treatment for his brain tumor and hope to attack his foot tumor next. Heather said that nevertheless, in all of these things let it be said that Jesus Christ is faithful.
“For you who may find yourself reading this and relating or hopefully you cannot, understand that without Christ we would have folded under the pressure long ago,” Heather said. “He has been the one who strengthened us and sured up our foundation. He placed us on the Rock of Himself and has never left our side. I have often found that life rarely goes according to plan and this has been the hardest journey we have walked down to date.”
Heather said that this journey would prove and is proving to be a kind of crushing, a breaking and molding that none of them would have chosen but The Father has used for their good.
“In His mercy He has walked beside us step for step never too far ahead or behind,” Heather said. “He has proven to be all that He testifies of Himself in His word. He is faithful.”
TWR stated they are blessed to be able to provide some support for Caleb and his family through the ride.