It’s been 5 years since our family stepped into the childhood cancer world… also what we call “the club” we never chose to join. Many thoughts went through my head. I couldn’t imagine what a 3 year old could possibly be thinking being stuck in the hospital against their will. I thought to myself “He is just 3 years old and has his whole life ahead of him….how could this be happening?”
Caleb’s journey began Memorial Day weekend of 2015. This is when my husband, Lee, noticed a swelling on the left side of Caleb’s neck. It wasn’t until June 16th, 2015, when our family got the dreaded phone call that no parent ever wants to receive. The doctor on the other end of the line had to tell Lee and I that our son, Caleb, had cancer. It felt as though I had been punched in the gut. I remember specifically falling to my knees, numb and unable to speak. It was a horrific feeling. Caleb was just two months shy of his 4th birthday. It was also my husband and I’s 8th wedding anniversary. This started an emotional roller coaster that only those going through something similar could relate to. We went from a normal carefree day to scheduling a day full of tests on our sweet little Caleb.
After six weeks and one incorrect diagnosis, Caleb was diagnosed with Histiocytic Sarcoma, making him just the 8th documented case in the whole country. Because of this, Caleb had no “road map”. Unfortunately we were a trial and error treatment plan. During these 6 weeks Caleb became very sick…he had fungal pneumonia, bacterial pneumonia, after a lot of CT scans and xrays we found that Caleb had appendicitis and had to have an appendectomy with an ANC (absolute neutrophil count) of zero which was incredibly scary…basically Caleb had no immune system at all. This in turn led to ileus as his belly just wouldn’t wake up after anesthesia and a couple days after his appendectomy he had to have drains put in which was another procedure. Caleb became so swollen and his heart rate was in the 220’s (normal for his age is around 120) and he was getting extremely high fevers up to 105 in which no medicine was bringing the fever down. Caleb now had 4 teams of doctors working with him…HMOC team, Infectious Disease Team, the Wound Care Team, and the Cardiac Team……because of all this Caleb earned himself a room in the PICU for a week. His poor body was filled with fluid, he was on a lot of drugs that made him sedated and not himself. His breathing was affected and he had to be on oxygen 24/7. After a week the swelling came down and Caleb was doing much better.
My son, who is now 9 years old, has had to endure more than I have in my 35 years of living. Caleb has undergone 4 MRI’s, 18 CT scans, 23 X-Rays, 5 ultrasounds, 16 rounds of radiation, 7 PET CT scans, and has had to be sedated 20 times. Having to starve your child all day while waiting for them to be sedated is not a fun nor an easy task. Caleb had 2 lumbar punctures, 2 bone marrow biopsies, 1 needle biopsy, 1 biopsy from ENT and surgeries including an appendectomy, drains placed, and surgery to remove cancerous lymph nodes on the left side of his neck. He also had necrosis of the bone on his left thigh bone and above each of his ankles, also called an infarct. This was a result of taking steroids and in fact was killing his bones. He had to stop taking steroids immediately. Caleb has had 5 cycles of treatment in which 2 were induction cycles (one for AML and the other for the correct diagnosis of Histiocytic Sarcoma), consolidation, interim maintenance, and delayed intensification.
We received the news on June 10, 2016 that Caleb was in remission, his scan was clear and there was no evidence of disease (NED)! This was exactly one year from his original biopsy.
Cancer is an awful life-threatening disease. Children are suffering and going through so much. These little people are true heroes and know how to fight. They are fighting so they can live. They want a normal carefree life and be a normal child. They do not want to be hooked up to IV poles and locked in a hospital, but they do it with a smile and a positive attitude. Cancer has become an epidemic…it’s not only in the United States, it’s all over the world. We must do something to change this.
We are so thankful that Caleb is here with us today. Caleb has lost two friends to cancer. Brady in June 2016 and Morgan in March 2019. He talks about them all the time, we pray for their families, and we give thanks that Caleb is still here. Caleb is confused at times why his friends are no longer with him and gets upset and mad…definitely a mixed bag of emotions as he wonders why he is still living. As Caleb gets older he has become more aware of what he went through, how lucky he is, and how sad childhood cancer makes him. But along with the sad, comes the good. He has wanted to learn more about pediatric cancer and wants to get more people to help fundraise and make a difference to get more treatments available to children and to cure childhood cancer.
Caleb is a wild, crazy and rambunxious 9 year old boy with a loving and sweet side. He is in the 4th grade at Thomas Jefferson Elementary School in Louisa, County Virginia. He loves football, basketball, baseball, nerf guns, mini segway pro, kickball, Spiderman, Star Wars, Unspeakable the youtuber, Nintendo Switch, camping, riding his bike, fishing, swimming, his two dogs, and his family.
When asking Caleb what his wish is for the future his answer is, “ I just want everyone to feel better and be cured.”-
– Blair Gibson, Caleb’s Mom.
Read about Caleb’s Crew walk team here!