The first week of July, when we arrived at Children’s for outpatient testing, we saw a patient leave the Oncology/Transplant floor after their transplant. Staff lined the hall and sang as the the child paraded through them. We stood at the opposite end of the hallway in clinic, waiting our turn for appointments to get treatment started. It seemed as though we would never get our ‘parade.’ But today, eight months later, we did.
Over the next couple weeks we will be staying here in Cincinnati in a hotel continuing to treat the TMA and getting things started with radiation. She is still on tube feedings for twenty hours a day and IV nutrition for twelve. She has a list of ten medications that have to be given multiple times a day. The only problem with not being in the hospital is you don’t have people to do it all for you. Today was exhausting. But it was all worth it because throughout the entire day I saw her smile and say, ” I can’t believe this is really happening. It feels like a dream.”
We celebrate today because she has made it past this milestone. Thanks so much for your prayer and support along the way. We still have a long road ahead, but for now we’re just going to thank God for how far we have come.