Toby was born in 1995. He was a hoot! He had the weirdest sense of humor, dry and witty, like someone much older than he. In 1997, on our way to Alabama, while in Texas, he was feeling miserable. We at first thought it was just the flu, but then his stomach started bulging and when he rubbed his eyes they bruised. After a series of crappy attempts, we finally arrived in the correct ER and were told that he had cancer. Neuroblastoma. Stage 4, aggravated, deciminated, amplified by genes. Yeah- cruddy prognosis.
Toby practically lived in that hospital. He went through chemo and radiation. He took it like a champ (because no one ever told him that this was an abnormal thing to go through- seriously, it's yucky, but we gotta do it). He showed 11 year olds how to take medicine without complaint. He wooed all the nurses. Firemen gave him real fire boots, a helmet, and a patch. He represented the hospital's religious division, cancer floor, and cancer charity. He basically rocked.
After 6 months of treatment, Tobin had a bone marrow transplant. His older brother (5 at the time) was kind enough to exchange his bone marrow through a painful procedure for a "happy meal and balloons".
A few weeks later, he stopped breathing. I think something happened with the meds they were giving him to make him pee- but I can't be sure. He was brought down to the ICU from the Bone Marrow unit and put on life support (that breathing machine).
We sat with him and talked to him, and left tapes to play to him when we weren't there just in case he could still hear us. They had put him into a drug induced coma so he'd rest better and not fight the machine. But the machine can hurt the lungs so that was a crap shoot anyway. We fought for him when the mean old doctor told us to give up.
The nurses in the ICU were great. The rest of the hospital staff that visited the ICU stunk. They walked into his room without a mask and without scrubbing- Hello! he had no immune system! Then one of them rinsed Tobin's nose sucker out with tap water (there were boxes of sterile water in the room just for that reason). Texas tap water harbors a fungus called aspergillus. To normal human beings it is fine, to immuno-suppressed humans, it is dangerous. The fungus quickly invaded his body and killed him.
The autopsy showed the cancer had come back. We were losing a downhill battle anyway. But I was upset over lack of protocol. I wrote to the hospital and expressed my concerns. I was told by one of Toby's favorite nurses, that now there is a huge book outlining BMT to ICU protocol because of Tobin.
He had died 3 weeks before his third birthday. We held him one last time and said our goodbyes. His good friends, the pigeons outside his window, flew away as he drew his last breath. We were, I was, extremely blessed to know him for the short time I did.
I love you, Bo-bo, Mom