I am so excited to participate in this year's CureSearch Walk. The Walk benefits CureSearch for Children's Cancer and the money our team raises supports their mission to fund and support targeted and innovative children's cancer research! I need your help to be successful! Please, join my team, register as an individual, or just make a donation to CureSearch for Children's Cancer on Caleb's behalf. We would LOVE for you to join Caleb's Crew and help us to raise money to help children fighting for their lives.Together, we are fighting for the future every child deserves and every parent dreams of.
Take a moment to read about Caleb. This is a write up from me, his mother, that summarizes his treatement and feelings we as a family experienced. Most of this comes from one of my very last blog entries, but has since been updated.
Please find in your heart to give what you can to help these children who fight for their lives. They want to live and need your help!
It's been 3 years since our family stepped into the childhood cancer world also what we call the club we never chose to join. Many thoughts go through your head as you can only imagine what a 3 year old is 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?” Every single awful thought went into my head and I realized that I would have to take this new life one day at a time because planning ahead just wasn't an option.
Caleb's journey began Memorial day weekend of 2015 while at the beach visiting with friends. This is when my husband noticed a swelling on the left side of Caleb’s neck. Lucky for us one of the friends who was with us had a sister who was a pediatric doctor. He gave her a call and she explained that sometimes when children are fighting off an infection their lymph nodes swell….give it a week and see what happens. We called Caleb’s pediatrician as well and they requested that we do the same thing….continue to monitor it. Unfortunately for Caleb after a week it was still there…..we had a couple doctor visits in which blood was drawn and the tests came back fine…..then while Caleb and I were playing he started to laugh and I noticed a bump on the roof of his mouth. After a day it had grown even bigger.
We went back to the doctors and Caleb was given an antibiotic and also referred to an ENT, the same ENT doctors that removed his adenoids just a year earlier. The ENT gave Caleb a different antibiotic to try….this didn’t do anything either. On June 8th we followed up with the ENT and decided we should have it biopsied. I called the following day, June 9th, and said Caleb couldn’t wait until the 15th. Caleb wasn’t himself and as his mom, I could sense something wasn’t quite right. Dr. Landes, Caleb’s ENT, put Caleb as an “add on” for the following day, June 10th. While we waited to get the biopsy results…..which took 6 days….. the bump on the roof of his mouth had grown from the size of a lima bean to the size of a large strawberry. This obviously had me scared and worried and even more so when doctors hadn't seen something like this before.
On June 16th, 2015, is 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 and numb and unable to speak. It was a horrific feeling. Caleb was just two months shy of his 4th birthday. It was also my 8th wedding anniversary.This started an emotional roller coaster. We went from a normal carefree day to scheduling a day full of tests on our sweet little Caleb.
We reported to UVa the following day which consisted of x-rays, EKG, ECG, bone marrow biopsy, lumbar puncture with his first dose of chemo, and an MRI. And to top it off he wasn’t caring too much for the IV and we had to starve him the entire day as the MRI didn’t happen until around 7pm. We had no clue that we would be admitted less than 24 hours after finding out Caleb had cancer and be inpatient for a total of 6 weeks from June 17th-July 31st.
Caleb was first diagnosed with AML (Acute Myeloid Leukemia) based off the pathology results from Martha Jefferson and UVa pathologists who were both in agreement that this was in fact AML.
Ten days after diagnosis Dr. Belyea, Caleb’s oncologist, sat down and spoke with us and was concerned that even after this cycle of induction of AML therapy Caleb’s tumors hadn’t responded and the tumor in Caleb’s mouth had grown to the size of a clementine. Our options were to do radiation and if radiation didn't work Caleb would have to undergo surgery to remove this tumor on his palate. Caleb’s tumors were in three spots…roof of his mouth and on either side of his neck. Now Caleb had to have another biopsy on his neck to have fresh tissue on slides that would be sent to AML experts in Utah….they concluded it wasn’t AML and they believed it to be Histiocytic Sarcoma. Dr. B then sent the slides to an expert with Histiocytic Sarcoma in Pennsylvania who confirmed this diagnosis. Caleb’s diagnosis was then officially changed, but not until week 6 of us being in the hospital. This was a lot of waiting and anxiety for me to handle not knowing what Caleb was up against.
After Dr. B gathered all the information about this disease he had only 7 pediatric cases to lead Caleb to the right treatment plan…..Caleb was now just the 8th documented case in the whole country.
Because Caleb’s tumor on the roof of his mouth was so large he could no longer eat. Caleb at this point began radiation and received a total of 8 radiation treatments on either side of his neck and 8 radiation treatments on his palate.He wanted so bad to eat but the tumor was so large he would choke on his food. Caleb was so frustrated and mad. It was then decided he would receive his nourishment through his PICC line with TPN and Lipids.
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. We spent one more week inpatient before we were discharged to come home!
This was some exciting news as it had been 6 weeks since our family had been together in our home. Because of Caleb’s diagnosis changing his treatment plan also changed. From here on out we received outpatient treatment at UVa’s Battle Building every Friday. We did have 3 scheduled inpatient stays for a certain chemo drug called Methotrexate in which Caleb had to be monitored but each of these were about a 3-4 day stay. Over this first year Caleb did spike fevers which put us back in the hospital for a week each time for a total of 4 stays. Waiting for 5-6 hours each time in the ER before making it to the floor was quite a process and not fun for a 3/4 year old in the middle of the night. Caleb spent close to 13 weeks in the hospital.
I feel as though I have also picked up some new job descriptions that can be added to my resume including how to flush a PICC line and hep lock it, administering IV antibiotics and IV Chemo from home, administering TPN/Lipids from home including spiking a bag and adding liquid vitamins, learning how to work a pump, and crushing lots of meds and finding all sorts of ways for Caleb to take medicine he doesn’t care for. Not only that but learning all this medical vocabulary.
My son, who is almost 6 years old, has had to endure more than I have in my 35 years of living. Caleb has undergone 4 MRI’s, 16 CT scans, 21 X-Rays, 5 ultrasounds, 16 rounds of radiation, 6 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 was killing his bones. He had to stop taking steroids immediately. Caleb has had 5 cycles of treatment including 2 induction cycles (one for AML and the other for the correct diagnosis of Histiocytic Sarcoma-current treatment plan), 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! This was exactly one year from his original biopsy. But with our amazing news came sad news….my son’s best buddy Brady, who was also receiving treatment at UVa passed away on June 10th, just hours before we found out Caleb was in remission. June 15th we celebrated Brady’s life and everything amazing about his sweet soul.
On June 17th, 2016 Caleb had his PICC line removed! No more baths with a plastic sleeve which he was very excited about as he was able to go swimming and play at the beach. This was a great day!
Caleb is currently in his 6th cycle of treatment called maintenance and from June 2016-June 2017 he required monthly visits to the Battle Building to draw labs and check counts and for him to receive chemo. For this year Caleb took a 50mg pill mercaptopurine daily, and every Friday he added 7 2.5 mg pills of methotrexate and 6 doses over the weekend of Bactrim. June 2017 is when Caleb no longer required any oral medications including chemo. He continued to go monthly to get blood work done and he has required transfusions of IVIG to help boost his immune system on average every other month. As of June 2018 we have begun to schedule appointments every two months and if Caleb needs IVIG it will be given.
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 a normal carefree life and so that they can be a normal child not hooked up to IV poles and locked in a hospital. Cancer is an epidemic….it’s not only in the United States, it’s all over the world.
Because of childhood cancer I have created life-long friendships with others whose child is currently going through cancer treatments or have had their child in treatment. Caleb has also made many friendships. None of us would have liked to have met this way but it is what it is and I am so grateful for these friendships as they all know and can relate to what this world entails.Caleb has loved his oncologist Dr. B. He is such an amazing man and loves Caleb as if he were his own. The relationship between the doctors, nurses, and all other care providers with Caleb has been exceptional. Caleb enjoyed visiting with the child life specialist, therapy dogs, volunteers, and preschool teacher. Caleb has been a fiesty one over these years and although he was acting out in ways that's hard to describe, the staff always were supportive and understanding which made it a little easier. But as a parent and as a teacher it has been difficult to watch Caleb go into some crazy temper tantrums...yikes! In addition to the doctors and support staff, we have had an amazing support system from family and friends, fundraisers, and organizations that have helped us not only emotionally, but financially. The UVa sports teams have been amazing and I hope this never stops. These children need to have smiles and need to know people love them and care for them. I can tell you from first hand experience how much it has made a difference with Caleb. Caleb has met an older best friend, Matt. He played football at UVa who just happened to have Fridays off from class. He visited Caleb quite frequently and Caleb really enjoyed all these visits. They have created such an amazing bond and friendship even with the many years between them. It makes my heart so happy. Caleb also got to spend some time with a few UVa basketball players which was special as well. It amazes me how these college athletes make the time to visit. Without this support I am not sure how we could have gotten through this challenging time.
#curechildhoodcancer #morethan4 #calebscrew #calebkickscancer #calebtheconqueror #calebtheovercomer #curesearch2018