Without a Word_ How a Boy's Unspoken Love Changed Everything - Jill Kelly [33]
September 3, 1997—I’m sitting on an airplane returning from Duke University after meeting with Dr. Joanne Kurtzberg regarding a bone marrow/cord blood transplant for Hunter. This has been a very difficult day. I saw so many sick children at Duke, and yet their parents were so pleasant and optimistic. They have so much to deal with, yet they walk around with smiles. It baffled me to see that. I wonder how they do it? I wonder if I will be able to smile soon.
Dr. Kurtzberg doesn’t think Hunter’s body can withstand the chemotherapy and everything involved in having a cord blood transplant because of all the damage Krabbe has already done to his little body. Even if a transplant could stop the relentless destruction of Krabbe, she estimates that it could take up to a year. Meanwhile, the disease would continue to fully progress with irreversible results. Hunter would still need a feeding tube. He still wouldn’t be able to swallow or smile or move his body like a healthy baby. He wouldn’t develop or achieve the milestones he’s supposed to as a six-month-old. Even the simplest things like reaching for toys, Hunter would never be able to do because he can’t hold his little head up or grasp things with his hands. He’ll never utter his first word. What if he wants to say “Mama” or “Dada”? He can’t. A transplant won’t reverse any of that. And it won’t save Hunter. So, he won’t be getting one.
I’m sad and fearful for Hunter. I just want to hug and kiss him forever. I’m scared to watch him die and I don’t know if I can handle it.
September 28, 1997—Well, we’re in NYC right now. I’m sitting here in our hotel room, a nervous wreck because tomorrow Jim and I will appear on The Today Show to talk about Hunter and Hunter’s Hope, the foundation we formed to help children like Hunter. This is way beyond my comfort zone… but we have to do whatever it takes for Hunter. There’s no limit—we’ll always do whatever it takes to help our son. He needs us. I need him….
January 28, 1998 (Children’s Hospital, Buffalo, NY)—We’re in the intensive care unit because Hunter has pneumonia. He’s hooked up to a ventilator and all sorts of machines and IV medications. I can’t even hold him because he’s attached to all these tubes.
We’ve been in here for ten days already. Jim, my mother, and I take turns staying here day and night, and when we’re not here, we have to be at home with Erin Marie. One of us is always by Hunter’s side—always.
Some people from the hospital asked if we wanted to sign DNR papers in case something happens to Hunter. I don’t care what any doctor says or what Krabbe disease will try to do to my son—he needs me and I’m going to fight for him as long as he’s living and breathing.
February 14, 1998—It might seem like a typical day but it’s not—Hunter’s one today. Every day he’s here is a celebration of life. He’s such a beautiful boy. I could stare at his face all day long.
Erin loves snuggling with her brother. She has no idea that her brother might not live very long. I’m afraid for her… I’m afraid for all of us. This is all so scary and there’s so much we don’t know and understand.
People are rallying to support Hunter’s Hope and our family. It’s comforting that people we don’t even know, complete strangers, care about helping Hunter and children like him. We need all the support we can get.
Hunter never smiled, and yet he did. For some reason, during the first year of his life we wanted so badly for him to smile. I guess because ordinarily a smile is considered an outward expression of happiness and joy. We had to learn that inward joy could be expressed in other, more profound ways. Just the fact that Hunter was breathing, that he was alive and fighting in