While I was in San Diego, life, of course, went on in the close-knit childhood cancer Facebook community that revolves around Letters for RJ. We may not have ever met each other personally, but each of us feel close to one another because we have a dream in common. It is the dream where politicians and other important people read the words that we write and send to them and their hearts are moved and they reach out and real change takes place. It is the dream where childhood cancer gets way more than 3% of government funding. How in the world do they expect to find cures with just a measly 3% of $3 billion? That is like a million dollars. And split that 12 ways (for the 12 types of pediatric cancer), it doesn’t even add up to enough.
Kayla Jo Kaufman is RJ’s little sister. She is 15 and a half months old. She won’t remember her brother at all. All she has of him are the pictures and the stories other people tell her about him, and the memory of the memory of her angel brother. And now, sweet Kayla needs prayers as well. On July 6th, her mama got a call from the oncology team that treated RJ. They said that Kayla’s HVA/VMA (urine test) had elevated creatinine levels. The normal level for Kayla’s age is 18, but hers was at 35, and it has just gotten higher each time they retested her. This is a marker for neuroblastoma, the same kind of cancer RJ had. Familial neuroblastoma is possible, but it is “extremely rare.” There they are again, those awful, untrue words.
Extremely rare? Yeah, right. You know what is rare in this day and age? Chicken pox. Mumps. Measles. Scarlet Fever. The plague. Not childhood cancer. Pediatric cancer is not extremely rare. Every single year, an estimated 12,060 children will be diagnosed with it. Does that sound rare to you? It does not to me. It is a travesty that people are ignoring this. It is just so unfreakingbelievable.
Yesterday, we found out that Kayla’s test results show that her chest, abdomen, and pelvic area do not show any masses, but her lymph nodes are swollen/enlarged. They are waiting for results of the latest HVA/VMA urine screen to determine the next course of action. The Kaufmans would greatly appreciate your prayers during this trying time. This is devastating to not only them, but also to the people who have rallied around RJ, and are now rallying around Kayla. Also, I’d like to ask prayers for Rodney and his father as well. Rodney’s dad has had a stroke and bleeding in his brain. He has had brain surgery to stop the bleeding. I do not know much more than that, but needless to say, it’s a tough time all around for this family. God, you have promised us your mercy. We hold on to that promise, and we place Kayla Jo and her grandpa in your hands. We know you have got this.