Today in the clinic, at around the 6th hour of being there, we were approached by the ever so delightful and self-deprecating Dr. Gold. Whenever a Doctor approaches me with a different look on their face, I always want to yelp out, “What is it?!?” In this case, it was a simple request — would it be OK if our #LukaTheLion is “presented with something from some group to celebrate something?” Turns out that something is The Millionth Pillowcase from Ryan’s Case for Smiles – formerly ConKerr Cancer to celebrate one million pillowcases that have been sewn by volunteers in honor of Ryan, a patient whose mother started the nonprofit because “in order to heal better, feel better.” I think this is our lion’s second gift from the organization, as we have an adorable pillow a volunteer gave him one of the first times he was in the hospital as a tiny baby.
The presentation of this millionth pillowcase was a little media event at our infusion chair as the Rituximab finished up. Our lion gave some squeals and was quite interested in all the people looking at him with this pillowcase. He pointed to the balloons on it, and was a bit shy with his smiles, but he entertained the group nonetheless. They did think he had cancer (happens all the time), but when I saw it was the millionth, I told them that he had a rare disease and he was like one in a billion! They asked his diagnosis, which made me stop in my tracks. “Well, that’s the thing — we’re really not sure.” I was met with, “What should we write down?” This was an interesting question because I had just finished talking with a social worker about an upcoming disability hearing and how the lack of a “box” to check for his diagnosis was the cause of getting erroneous denials by our Social Security Association. So, we settled for, “a rare primary immunodeficiency disease that is most likely unique to him.” They were amazed. And even more amazed that he’s been going to the clinic since he was 3 weeks old, had a bone marrow transplant, goes to clinic twice a week — sometimes every day — and just finished a 5 hour infusion — and seemed like a happy 18 month old. It was like jaws were on the ground. Moments like that put this all in perspective.
And a lot of smiles from the pillowcase! Thank you Ryan’s Case for Smiles — you brought us many.
