Harmon Jones is an active, funny, spirited, social firecracker of a little guy who at 3 years old, idolizes his big brother Win, our athletically gifted and bright 7 year old boy. Harmy was diagnosed with Alveolar Rhabdomyosarcoma at 26 months old last year on August 8th, 2018. He completed 43 weeks of frontline chemo and 8 brachytherapy radiation treatments as well as five surgeries to remove his nasopharyngeal tumor, implant his port and confirm that the cancer had not spread. We just completed his Maintenance Chemotherapy treatments in December. We are so thankful and blessed to have Dr. Noah Federman and the team of Peds Hem/Onc fighting alongside Harmy's Army! Harmon was pulled from preschool and constantly begs to go to school, play sports & go to camp like his bro every day. He loves people and making friends. He's a natural comedian who lives to make you laugh! The chemo has presented walking challenges but he doesn't break stride when he trips; he just gets right back up and doesn't let cancer keep him on the sidelines. Rhabdo is a very aggressive, rare cancer affecting one in a million kids. We've gone from 20% chance to 50-60% chance of survival and you can get lost in statistics until you look at your own child and decide with an unshakeable faith that he is going to make it. This has been the hardest year & a half of our family's lives. Cancer presents challenges that are unimaginable. But our Harmy is very special & a fighter. He has a light inside him that gives people joy.
The Child Life Dept has been instrumental in Harmy’s healing. From the first day I met Katie, I knew we would be relying on their team for much needed emotional support & distraction for Harmy during upsetting procedures. My first question is, “Where’s Child Life?” when we arrive for a scan or when he has to be accessed at Infusion Clinic. Millie and Harmy have such a beautiful relationship and system. She knows what he needs and presents choices for him that help him get through the hard stuff. She would read the Hungry Python book or the construction truck book to him every time to ease his worry and distract him from “the stuffs” which is what he called getting his chest port accessed each week. Christynna helped a lot inpatient at Westwood as well as our beloved 6th floor team at Santa Monica! Harmy’s first request was always, “Where’s Waywah?” He wanted to ask Layla when he could go in the playroom. And they were always so great at sending volunteers into our room if he was unable to go. They walk with us around the floor or play with him on a mat to give me an hour to actually leave the hospital for a walk.
This is a crucial team who has been invaluable to us all on this journey. Child Life doesn’t merely play with our kids; they are giving them joy & fun in an otherwise horrible situation. They give us parents relief, comfort, & confidence to stay positive for our kids. They provide a break so you can shower or get some fresh air to stay sane. They basically keep us going, give us encouragement and become close friends to us and our little warriors. I adore this team. Harmy needed Child Life and they are there for us without fail.
Harmon told me he isn't going to heaven yet and he is going to stay with us. I believe him when he says that too. Go Harmy!!!!! We love you to the moon and back again!
