A week and a half after Atia took those monumental first steps in the hospital playroom, she completed the 1st phase of treatment called "Induction." Up to that point, she had been receiving chemo for 28 days straight. That prompted an 8-day break; time her body used to recover and rebuild its immune system.
From the moment of diagnosis, our lives had been a whirlwind. We were forced to make innumerable decisions quickly, under immense pressure and with no guarantee that they were "correct." We struggled to maintain clarity, while painfully aware that every selection was critical and impacted Atia's road map to recovery.
However, there was one MAJOR decision that was made FOR us. We would have liked to have made it for ourselves but, due to the gravity and urgency of the situation, we weren't allowed. That decision was - where should Atia be treated? Being forced into receiving treatment from a hospital that was NOT of our choosing, haunted us the entire time Atia was going through the "Induction" phase.
Because Atia began treatment immediately upon diagnosis, we had no opportunity to explore and research hospitals. Her treatment facility was directly linked to her treatment plan. The same team of doctors worked both hospitals - and they gave us little choice - stay at this hospital and don't participate in the clinical trail or go to that hospital and participate in the clinical trial.
As I mentioned in a previous entry, we opted to participate in a clinical trial, so off we went to the other hospital.
Honestly, we were never thrilled about either hospital option. And I really hated and resented the fact that "where my daughter received treatment" was out of my control. Some might call me a micromanager, but I like to think of myself as organized, particular and deliberate - someone who intensely researches EVERY option, thinks through EVERY detail, imagines EVERY scenario and forecasts EVERY outcome before making a decision.
When I was diagnosed with melanoma, we had time to explore various treatment facilities. We checked out Northwestern Memorial Hospital, went down to MD Anderson in Houston, TX and ultimately ended up at the University of Chicago Medical Center (U of C). In the end I had three "second opinions" before making my final decision as to where I'd be treated and under which treatment plan.
So, during Atia's treatment "break", Steve and I eagerly took the opportunity to investigate other medical facilities. I had been lobbying to move Atia to the U of C since day one. I liked the facility and care I had received. I simply felt more comfortable at that hospital.
I called my oncologist and asked him for a "good" pediatric oncologist referral. He told me that Dr. Charles Rubin was a well respected pediatric oncologist. So, we immediately arranged a meeting at the U of C with Dr. Rubin.
Upon initial introduction, we really liked him. He was kind, empathetic and soft spoken. He seemed to calm us not only with his words, but also with his soothing voice. As we discussed Atia's case, we found that we appreciated and respected his treatment philosophy. The U of C was going to handle some of Atia's procedures differently than our current hospital; namely, they were NOT going to keep her awake during the dreadful spinal tap procedures.
I will never understand why any medical professional would think that keeping a child awake during such a painful procedure is acceptable. Anyone that's had an epidural can understand the pain and discomfort - now, imagine that you're having one of those done practically every week, you're a child, you don't understand why this keeps happening and you're NOT suffering from contractions that are so bad you don't care what the epidural feels like as long as you get some relief. In my opinion, sedation is the only way to go (as long as the child meets all health requirements necessary to receive anesthesia).
So, with hope and optimism, we promptly transferred to Comer Children's Hospital at U of C.
Hope is that thing with feathers that perches in the soul
and sings the tune without the words and never stops...at all.
(continued in 2 weeks)