On 8/14/14 we took Austin to Scottish Rite for severe leg and back pain, a limp and a persistent fever that had lasted 3 weeks. Had we known anything about the signs of cancer, we would have been scared s**tless. We were naive and thought it was either arthritis or a bone infection. Both of those diagnosis sounded scary enough. Early on 8/15/14 Austin got an MRI. We watched him being sedated and then struggle to breath. **At the time**, I thought to myself, this is the most traumatizing thing Ive ever witnessed. They told us it was going to be a few hours, so we should go walk around and theyd call us back when he was done. We had only been gone for about 30 minutes when the nurse called me. She assured me nothing was wrong, but that she needed us to come back and sign some paperwork. Instead of the nurse coming into the room, it was the radiologist. She seemed visibly shaken and nervous. She mentioned a study and an experimental scan theyd like to do on Austin and asked us to sign some paperwork. I immediately knew this was even worse than what we had been expecting, but my mind wasnt even speculating what it could be. It was like my common sense had shut off and I was going into denial mode. Fast forward 5 months to todays scan. As we were waiting for Austin to wake up from sedation that same radiologist came into the room. She said I just wanted to let you know that Austins scan looked AWESOME today. We were all just back there looking at it and crying. So much better. The oncology team will call you tomorrow with the results, but its great. Its hard for us to be over the moon excited, though. I know when people who arent familiar with stage IV cancer treatment hear that a patient has little to no disease left they think Oh, good, so youre done, then? I thought thatd be the case at the beginning of this, but UNFORTUNATELY it doesnt work like that. Being declared NED (no evidence of disease) or close to it, is normal (and what they were hoping for) at this stage of treatment. Austin still has a long way to go before the oncology team is done with him. And really, the worst of it is still ahead of us. Stem cell transplant involves incredibly high doses of chemo that would kill him if it wasnt for the stem cell rescue and a month long hospital stay. Then on to 3 straight weeks of radiation which can damage organs and cause secondary cancers. After that hell have about 5 months of antibody treatment. While hes receiving that hell need to be on morphine because its so painful. Im extremely thankful that hes on the right track to being cancer free. Chemo doesnt work on all patients and the fact that chemo worked on him is key to his treatment being successful. We met a 3 year old little boy on the North Pole trip with neuroblastoma who was diagnosed only a month before Austin. Chemo wasnt working on him and his mom told me they were running out of options. We learned from another family at the hospital that he has already passed away. I kept wanting to ask the nurses if it was the same little boy I had met, but couldnt get up the nerve. I didnt want to get confirmation that it was him.
Posted on: Fri, 23 Jan 2015 01:42:23 +0000
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