Saturday, April 30, 2016
Transplant talks from the tub ~Part 2 "It's the first time I'll actually be waiting for a hospital stay to get here."
As most of you know, Rowan is no stranger to hospitalizations, surgeries, and other medical procedures. It's what he has dealt with his whole life so far...repeatedly. But the prospect of getting a bone marrow transplant is still a HUGE deal. When he was in the tub the other night (remember I mentioned there was more to the conversation), Rowan said excitedly, "It's the first time I'll actually be waiting for a hospital stay to get here." I told him I was glad to hear he was actually excited about it, because it has been such a big decision for our family, we wanted to make sure he was ready and willing too. I told him that since he was under 18, his health care choices are up to his Dad and I, but that we feel he knows his body better than anyone and that he is mature enough to 'help' us make decisions about his care.
See, if Rowan had cancer, or was in complete bone marrow failure already, we wouldn't have a decision to make...it would be a no brainer...it would be time to transplant. But Rowan is much more complicated than that. He does have a primary immune deficiency, anemia, iron deficiency, chronic neutrapenia, and has required daily neupogen and biweekly ivig and iron infusions for years. His repeat battles with sepsis have been threatening his life since before he was even a year old. Coupled with his other health issues, his poor functioning gut, seizures, asthma, migraines, hydrocephalus, Chiari malformation, endo-lymphatic hydrops/meniere's, etc, Rowan's medical condition is very complicated. It took Seattle 2 full years, with repeat trips up there, extremely in depth testing, over a dozen specialists, and many modifications to his treatment, before the transplant board finally came to the consensus that it is time to transplant. Brian and I know that they have left no stone uncovered, that they have not taken this decision lightly. Nor have we. I just wanted to make sure Rowan was on board. And boy is he.
He told me, "Mom, you know me. I hardly have patience to fall asleep, I hardly have patience for a game to load, I feel the same way about my transplant...I just wish it was sooner. I'm ready for it. I'm ready to get better. I'm ready to not be so sick anymore, to stay out of the hospital more, and to finally go to real school. It's time Mom. The doctor's know it. You and Dad know it. I know it."
I sat there in tears, thinking, "Thank you God. What more could I ask for?" Rowan is completely ready to fight through this transplant...and to get better. I thought that was all the confirmation I needed...but Rowan of course had even more for me...
To be continued...