Meet Kim, mother of Jared, a childhood cancer hero. Today, we ran a condensed version of this story on our social media but intended to publish the comprehensive first-hand story here, on our blog. 
Q. Were you aware of the childhood cancer world prior to your child’s diagnosis? Did you have any connection prior?
R. Not really. I saw the commercials on TV so I knew childhood cancer existed but I never had any connection to anybody that it directly affected. 
Q. Tell us about the day your child was diagnosed. What events/issues led to your child’s diagnosis? How did you feel/react to the initial news?
R. On July 31, 2017 I took my 15 year old son Jared to the doctor for a lump in his neck. He also had red spots on his legs and had a bloody nose that was hard to stop bleeding. He had been feeling well and I thought he had possible allergy issues. They drew blood and I’ll never forget the look on the doctor’s face when she came in. She had been speaking to the head of the ER at UK Hospital. Jared’s white blood count was sky high, His platelets were rock bottom. She said we think Jared has cancer. Nothing can prepare you to hear those words. We were told not to even check out at the front desk but to go as fast as we could to the Emergency Room where they were waiting for us. Calling my husband to tell him was so hard. On that ride to the hospital with Jared I tried to keep it together but was falling apart inside. I know he was scared but was being so strong. We were quickly taken back in the ER and admitted directly to the PICU unit of Kentucky Children’s Hospital. He was diagnosed with T-Cell ALL Leukemia the next day and would spend almost 3 weeks at the hospital. Our life was turned upside down so quickly and life has never been the same again. You want your “old” life back but it will never come back. You see how much you had taken for granted and how much you enjoyed such simple things. I knew we all had to be strong and positive for Jared and that is what we tried to do every single day. I never wanted him to feel like he should just give up fighting. Fighting cancer is hard and he needed to do the best he could every day to beat cancer. It’s hard not to wonder why this happened to your child. What did we do wrong? What could we have done to stop this? Leukemia is not something we could have prevented even though we don’t know why this happens to so many kids. We did the best we could to adjust our life to take care of Jared, try to continue working and take care of our other children. It’s extremely overwhelming but I know we did the best we could and Jared knew every single day how much he was loved. 
Q. Did your child follow a COG protocol for treatment or did they follow a different protocol tailored to their situation? Thoughts on their overall treatment experience? How did you feel watching your child go through treatment?
R. He did follow a COG protocol. Hearing that treatment for leukemia was 3 1/2 years was overwhelming. I am a planner and like to know what is coming. That’s so hard with leukemia even though I did know all the upcoming stages of treatment. Kids react so differently to treatment and Jared had multiple side effects from chemo/steroids. We watched kids in the clinic play like nothing was wrong with them but Jared had adult doses of chemo and treatment was not so kind to him. He lost 38 pounds in the first month along with his hair. In the second month he lost his ability to walk. Jared is a twin so it was very hard watching him see his twin have a normal life and be able to do all the things he should be. Instead his life was all about clinic visits and hospital admissions along with dealing daily with the harsh side effects of treatment. We kept counting down to the time that the worst treatment should be over in March 2018. As a Mom you want to stop the pain for your kids. Watching him struggle was so hard for me. He often just wanted me to sit by him even if we didn’t talk. In the hospital he wanted to feel my touch even though he was 15. While I will always wish I had done more I know that Jared felt loved by his family and was a fighter until the end.
Q. Share with us obstacles and triumphs that you faced personally during your child’s cancer journey. How did it feel to be thrown into the childhood cancer arena? We hear so many talk about joys and sorrows, triumphs and obstacles they faced throughout their journey – please share any of yours or your child’s. Overall – how did your child’s journey shape yours and your families new normal?
R. No parent ever thinks they will hear the cancer word. I had no idea this world existed. I thought cancer was typically a quicker treatment time with nausea, throwing up and being tired. It’s so much more than that. Life changed so much when caring for a child with cancer. It was difficult to continue to work, try to keep up our home and take care of other kids. Luckily I was able to work from home and be there to care for Jared. I wasn’t prepared for so many clinic visits and hospital visits. We never dreamed Jared wouldn’t be able to walk on his own. The steroids did so much to him and the chemo didn’t help either. The hospital admissions were tough mentally as well as physically. Jared just wanted to be a normal kid but that was so hard with cancer. We had to adapt our home to a walker and wheelchair. The simple task of getting him around the inside of our house and to the car wasn’t easy. Falling was a huge risk for him. I’ll never forget his first fall and the look of terror on his face. Physical therapy helped him a lot but he was never able to walk unassisted again. Watching him be unable to gain weight was hard. He knew he needed to eat and couldn’t. Fighting cancer is so much more than I ever dreamed. Despite all of this we have been blessed to meet some amazing people that we wouldn’t have in our lives otherwise. To this day I still talk to our social worker, his doctors/nurses and so many other cancer families. We were supported by our community in so may ways that helped make this journey a little bit easier. We were overwhelmed at the support we received from so many that didn’t know our family. For that we were forever grateful.
Q. What point is your journey at now? What survivorship issues are you facing? How do you handle the unknowns?
R. Jared passed away on March 22, 2018. We were in the last intense phase of treatment (Delayed Intensification) and just had one chemo treatment left when things went wrong. What should have been an admission for low counts and finishing up the last intense chemo turned into C-diff, an extremely rare bacterial infection and even more rare fungal infection called Mucor. The fungal infection spread to his brain and many of his organs and nothing else could be done. Things happened so quickly and in less than 24 hours Jared would be unresponsive and never be awake again. We experienced things in that last admission that nobody ever should. We never expected to lose Jared. Life without him will never be the same. Jared was the sweetest and most giving kid ever. He worried more about his family than he did himself. Now I volunteer for Jarrett’s Joy Cart at KCH hospital and participate on a Family Advisory council as well to help make the hospital experience better for children and their families. We have helped raise donations for the Joy Cart for the last 3 years and will continue doing so. Jared would love seeing that so many kids that were in the hospital are getting smiles put on their faces by the work we are helping to do.
This Social Media Takeover ran on ACCO’s social media on April 24-25, 2024. If you’re interested in submitting your own Social Media Takeover, click here.