“I didn’t like it, I LOVED IT!!!” - Caleb
The worst news you can receive as a parent is that your child has been diagnosed with something that you are helpless to control. You feel lost, determined to find answers to make an impact on your child’s life, but realistically you take each day one step at a time and hope that the treatment works. Each day you pray, ask, beg that you can be given the disease instead of your child. Many families that Runway to Hope encounters are in a place where they cannot do anything, but wait. Wait for a cure. Wait for the chemotherapies and other treatments to work, but at the same time watch these drugs that are supposed to save their child, end up destroying their bodies in the process. Every child diagnosed with cancer has their own journey, but for Caleb and his family, they choose to remain positive even when positivity is the hardest journey to follow.
Caleb is a handsome ten year old boy with a heart of gold. This young man was diagnosed with Glioblastoma multiforme on September 28th, 2017. Caleb was experiencing headaches and vomiting before going to the emergency department. The hospital staff acted quickly and did a CT scan that found a mass on his brain. Following an MRI, the family was told he had a brain tumor. The following day Caleb had a biopsy performed. He also had a ventriculostomy, which is a device that drains excess cerebrospinal fluid from the head because he was suffering from water on his brain. Two days after the biopsy was taken, the family received the news that the tumor in his brain was malignant. He had Stage IV brain cancer lodged in his thalamus, the center most part of the brain. Caleb’s mother and father remember that day as the most horrendous day of their lives. Their whole world fell apart and they now had a new challenge, a new way to live their lives with a ten year old who wasn’t sure how to process having cancer and what this would mean for their future.
In three weeks, Caleb endured three surgeries on his brain; the first being the biopsy. The second surgery they did was a craniotomy, where doctors removed the majority of his tumor. They could not remove Caleb’s tumor entirely because he would have been permanently disabled. The rest of the tumor is being treated with radiation and chemotherapy. Caleb had an additional surgery one week after his tumor was removed due to the scar tissue, blood, and fluid build up on his brain. After some rest and two weeks of in-patient rehab, Caleb was able to start treatment. Caleb has completed six weeks of radiation and is currently on his sixth cycle of aggressive chemotherapy. Each chemotherapy cycle takes six weeks to recover, but Caleb usually takes longer between cycles because of his blood counts needing additional time to increase. The next treatment step after he finishes this cycle is to complete an additional year and a half of a different type of chemotherapy.
Caleb is being treated at Arnold Palmer Hospital for Children in the Pediatric Neuro-Oncology Program. Runway to Hope provided the seed funding for this program to begin in Central Florida to help treat children like Caleb! Caleb is being seen by three different types of therapists and eleven doctors that help him with physical and brain development, side effects from treatment, surgeries and more. Like most children diagnosed with cancer, they are not able to attend school because of the immune system. Thankfully, he is homeschooled through Home Bound. However due to his tumor, Caleb has a hard time with his short-term memory and this affects his schooling and development. His mother, Nancy had to quit her job in order to care for him. Their family dynamic has changed drastically since his diagnosis, but they stay positive and make sure they are creating good memories for their family. As a family, they have learned how to enjoy life every day with Caleb and with each other. They do not take a second for granted and take advantage of their time together as much as possible. Caleb has a phrase that God gave him since he started this process. He shares it with everyone on his journey, "Everything will be fine because God is with you" Joshua 1:9. Runway to Hope has been able to impact their lives by helping with their rent, utilities and car payment in order to help alleviate some of their financial burden. Nancy says, “Please join and be a part of this wonderful foundation. If you are considering a Pediatric Cancer Foundation to be involved in, contribute, or help, then Runway to Hope is the right one for you! We have been witnesses to their help and have been part of their events. The way they treat our children and the passion they put into every single family is enormous.”
Glioblastoma multiforme, also called glioblastoma or GBM, is a fast-growing glioma that develops from star-shaped glial cells, astrocytes and oligodendrocytes, that support the health of the nerve cells within the brain. Glioblastoma is a type of brain cancer. It's the most common type of malignant brain tumor among adults. Not much research is available for children with this type of brain cancer and it is usually very aggressive, which means it can grow fast and spread quickly. Although there is no cure, there are treatments to help ease symptoms. This is the most invasive type of glial tumors, rapidly growing and commonly spreading into nearby brain tissue. The average survival time is 12-18 months. Only 25% of glioblastoma patients survive more than one year, and only 5% of patients survive more than five years. These statistics are based on adult patients. Glioblastoma can occur at any age, but tends to occur more often in older adults. It can cause worsening headaches, nausea, vomiting and seizures. Treatments may slow progression of the cancer and reduce signs and symptoms. Caleb has been a strong young man through all of this and these facts do not frighten him! He is a survivor and with God beside him, he will fight this battle with positivity.
Runway to Hope first met Caleb and his family at the 2018 Bloomingdale’s Beauty and Boys Bash. Caleb was the life of the party! He is extremely outgoing and a truly unforgettable young man. Nancy says Caleb has always been very happy, makes friends everywhere he goes, and he is very mature. He is intelligent, thoughtful, sweet and still very innocent. When you ask Caleb if he liked walking the runway this year. His response is, “I didn’t like it, I LOVED IT!!!” with a huge smile on his face. Caleb enjoys watching cartoon network, helping the homeless, baking cookies and listening to music. One day, Caleb hopes to become a social worker for children to help families like his going through something they have no control over. Until then, we hope that Caleb will continue to participate in Runway to Hope Events because his smile and laugh are contagious and we need more people like him in this world. If you would like to help families like Caleb’s, please donate to our Family Assistance Program to directly impact these truly incredible children.
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