Day 23: MGH - Massachusetts General Hotel?

Tuesday, October 2, 2007 - We are now into our fourth week at Massachusetts General Hospital, and in some ways it has been a surreal experience. Contradictions abound.

The time at the hospital has passed quickly, yet Family Camp, where this all started, seems like ages ago. What happened to the last three weeks? Even with this blog, it's difficult for me to remember.

We wanted to aggressively fight this terrible disease, while keeping our lives as normal as possible. As doctors pump and inject powerful chemicals into Mady, the normal we came up with was dinner together each evening as a family. We eat, play games, sometimes watch a movie, then I drive Julia home. Next day, the same thing. Not normal, but we're able to make it work. The crisis is draining, yet the routine is comforting.

Mady has gotten some cool stuff that she's always wanted... a laptop, an iPod, etc... It has sometimes seemed like a big crazy birthday party at the hospital. The gifts have absolutely done their job and helped to distract her from worrying about the chemotherapy... but they are just things. A couple of days ago she tearfully told me that she didn't want Leukemia, and she would gladly give up all the stuff forever not to have the disease.

Mady is receiving life-saving treatment in the Pediatric Unit of one of the best hospitals in the world, and Chris and I are basically living there too. The hospital completely expects parents to stay and is set up for it, yet it feels so strange to pad out of the room each morning headed for coffee and some breakfast. I say good morning to nurses and doctors as if they are also staying or working at this nice big hotel. Then I pass a room and notice parents who, I think, spent the entire night holding their child's hands and crying... this is definitely not a hotel.

This experience is emotionally and physically exhausting, but we're gaining perspective and strength. We learn, we love, and we're getting stronger. The four of us had never faced anything this difficult before, yet we're each coming through in our own way... especially Mady. Our family and friends are excelling too--they visit, they comfort, they support, they love. We will not only survive the next 2 1/2 years of cancer treatment... we will thrive.

When Mady began her chemotherapy, her bone marrow was almost entirely filled with Leukemia... allowing virtually no blood cell and platelet antibody production. Without these cells, the human body can survive for only a very short time, thus the long inpatient stay at MGH. Now, the chemo drugs have killed most of the invading cancer, allowing her marrow to start production of blood cells and platelets again. Her ability to resist infection with her own antibodies is key to getting released from the hospital and becoming a chemotherapy outpatient.

We still have a few days to go before the critical bone marrow and spinal fluid tests on Day 29... unfavorable results could radically change her treatment protocol. But this is separate from her antibody production, which is now increasing. It seems likely, according to Dr. Friedmann's analysis of Mady's current blood tests, that she may be allowed to become an outpatient within a week... and maybe even by Friday. (Yay!)

As nice as this place is, we will not miss the deluxe accommodations at Ellison 1816.