"I Strong" those are the words we are teaching Hyrum to tell himself daily. Those are the words he confidently says as he lifts his arms to flex muscles that are still developing. Hyrum was diagnosed with Acute Lymphoblastic Leukemia (ALL) Oct 20, 2019. We always knew there was a chance we would be here as the kids with Down Syndrome have a 30% chance of developing this type of cancer. We get hospital living. Hyrum has other heath challenges that have landed us at Scottish Rite in Atlanta more times than we can count. Someone in the family has a sore throat and he goes into acute respiratory distress. Every ER visit is a hospital stay and we come prepared with a go bag. He has Epilepsy, Asthma, Chronic Croup, FPIES and now Cancer. Wow. That's a lot. Any one of them is a lot.
Hyrum is the youngest of our 7 children. He's the glue. The sunlight in our day. Hyrum reminds us all to be at peace and have joy. His smile is infectious. His hug is healing. Hyrum is facing a tough three years of chemotherapy. We are currently living in the hospital... Because of his extra chromosome and already fragile health, Hyrum's treatment, which would typically be mostly outpatient will require long stretches of inpatient stays. Weekly inpatient stays with our family living our lives in the in-between days.
We are just beginning this journey. Our needs are not yet fully understood. We understand there will be a financial strain. We understand there will be a family living apart and lots of trips back and forth to the hospital and meals that will need to be provided both for the family and me, who stays by Hyrum's side through the whole process. Not to mention the medical expenses.
We are grateful for your generosity... As Maui, Hyrum's hero from his favorite movie would say... and thank you!