Cole’s Story
“Cole was born on November 1st, 2018. It’s fitting that he was born the day after Halloween because he loves all things spooky. Ghosts, bats, spiders, skeletons – he loves them all. He is the sweetest boy, and his nickname as a baby was ‘Sweet Baby Cole’. He loves his parents Brad and Brittany and big brother, Hudson, who is 7. He loves chasing Hudson around the house while dancing to music and shrieking with laugher. No one can make him laugh quite like Hudson can. The two of them are inseparable, especially after the past years with Covid and being at home together 24/7.
In February of 2021, when Cole was 2, Brittany noticed that he had a swollen lymph node beneath his ear. Over the next two months, there were many doctor appointments, multiple tests were run; including blood work, an ultrasound, chest x ray, and a CT scan with contrast. We were told specifically many times that Cole did not have cancer. However, we needed to do a final biopsy to rule out anything else that may have been going on. The evening of the day of the biopsy (April 5th) Brittany received the phone call telling her that Cole had cancer. They immediately rushed to Lurie and were admitted for more testing, x-rays, port placement and to begin treatment.
We found out after more testing that Cole has high risk B cell acute lymphoblastic leukemia. The treatment plan is 3.5 years long. Cole’s treatment has consisted of oral chemo, chemo he receives via his port, intrathecal chemo which is chemo injected into his spinal fluid, steroids that wreak havoc on his sweet personality, spinal taps, and much more. In the first 8 months of treatment, Cole spent 53 nights inpatient at the hospital, 26 of them being consecutive about a month into treatment. He has had multiple complications including norovirus, a staph infection in his port requiring removal and a new one placed, a blood clot in his jugular vein requiring shots twice a day given by Brad (dad). He also developed acute pancreatitis which is incredibly painful.
Since Cole was on a high risk protocol, he took oral chemo daily, visited clinic monthly for chemo in his port, had a spinal tap every once every three months along with intrathecal chemo, and took a 5 day monthly steroid pulse. He still enjoys going to the hospital to visit his team who he has formed a special bond with. He sat alone while getting his port accessed (even though he didn’t like it) and did so with a smile on his face. He helped the nurses flush his port and take the blood samples. He let them carry him down the hall to get a lollipop. He took multiple medications daily without putting up any fight. He is braver than any child should have to be.
Thankfully, Cole rang the bell and completed treatment in August of 2023.”
-Brittany, Cole’s Mom
What helped during treatment? In what ways were things made to feel a little lighter?
“In terms of tangible things that have helped during treatment - parking passes, gift cards for food, coffee, gas, donations to our gofundme so that I was able to stop working and care for Cole, cards to let you know that you are being thought of. A hospital grade thermometer was gifted to me by a local organization and it was my favorite item to have. We were also given a wagon from Cal's Angels. We used it consistently, especially when Cole stopped walking.
What helped get us through were the incredible staff at Lurie. Our oncology team is so special. They have loved Cole as if he was their own. We felt advocated for and really heard. His nurse, Anna, answered my millions of questions and made clinic brighter every visit. Clinic is not an easy place to spend your day. Seeing so many sick children and hearing their screams is draining and heartbreaking. Having a cheerful team makes it more tolerable. I have peace in knowing that Cole is in the best hands possible. I am so thankful that we were able to be treated at Lurie.”
What do you wish people knew about childhood cancer?
“Before Cole's diagnosis, I knew children were diagnosed with cancer. But, I didn't know it was happening as often as it is. I didn't know that children were given the same chemotherapy drugs as adults. I didn't know that 1 in 5 children do not survive pediatric cancer. I didn't know that once childhood cancer touches your family, it never goes away. Fear is a part of your new normal. For me, it is always lurking in the back of my mind. Cole having cancer gets brought up in all of my conversations because I want to scream it from the rooftops! I want everyone to know exactly what children with cancer endure. The pain, so much pain. Childhood cancer has stolen both of my boys' innocence. During treatment it took away Cole's ability to sit up unassisted, walk, and play with his brother. Thinking about it all; even now, it makes my heart race.
I wish people knew how lonely it is to be a childhood cancer family. We are often required to isolate for months at a time. We go from attending sports practices, date nights, birthday parties to staying at home 24/7. Leaving the house only for the hospital or a grocery pickup. In the beginning, there is a rush of support. Constant messages checking in, gifts arriving daily, etc. However, during a 3 year treatment plan, the check ins slow down. Most people returned to living their own lives, while ours continued to fall apart. I felt like people got used to Cole being sick. It was draining to try to explain over and over what treatment consisted of. I connected with fellow cancer moms and they are who got me through. They were who I texted at 2 AM asking for advice. I am forever thankful to them for making me feel less alone and giving me hope.”
Tell us about Cards for Cole … !!
“Let's talk about the bright side of a childhood cancer diagnosis. We have met so many incredible people. During one of the hardest phases of treatment - delayed intensification - I created a "Cards for Cole" campaign. I asked people to send birthday cards to our sweet Cole since he was able to have a party for his 3rd birthday. It blew up and we ended up receiving 10,000+ cards and gifts. We were interviewed on local news channels and were able to get the word out about childhood cancer. It brought our family so much joy during a really, really hard time. We received letters from childhood cancer survivors themselves. We also received them from the siblings of survivors. It was comforting to read them and hear about how well they were doing today. We were shown how many wonderful people there are in the world. Some have continued to stay in touch still sending balloon arches for his birthday each year.”
“As a family, we enjoy dance parties, eating homemade pasta and decorating our christmas tree really early. We don't take anything for granted and will continue to fight and raise awareness for our friends who are now angels.”