Sunday, January 15, 2012

Tonight's picture was taken in January of 2009. We took Mattie to New York City to start his experimental treatment of MTP at Memorial Sloan Kettering. Our experiences at Sloan Kettering were LESS than stellar. In fact, the majority of the staff we interacted with were surly and attitudinal and I am thankful we did not have to stay there for more than one week. I will explain more about this below. In this picture, Mattie was in the childlife playroom at Sloan. The playroom was HUGE, as big as a warehouse and just as noisy and chaotic. The blue plane behind Mattie, was made by him. Linda (Mattie's childlife specialist) contacted Sloan's childlife director and gave her a heads up that Mattie loved constructing with boxes. So she saved several for Mattie and gave them to him for his day in the hospital. As you can see, Mattie had a way with boxes and the Sloan staff seemed overwhelmed by Mattie's desire to create and be different. I do want you to know that we did take this blue plane in a taxi with us back to the hotel, and though we did not transport it back to DC, we took many pictures for Mattie to remember his creation!

Quote of the day: The human heart feels things the eyes cannot see, and knows what the mind cannot understand. ~ Robert Valett

Today was like living in the land of the lost. I never got out of bed today, that is how good I am feeling. I have spent the day watching Hallmark movies and thankfully having big windows in our bedroom, I can see the birds and see the traffic going by at the same time.

As I was selecting the picture for the blog tonight, I couldn't help but reflect upon our experiences at Sloan. Sloan Kettering was not a positive experience for us for so many reasons. It was at Sloan that the head of pediatric sarcomas let us know that there were NO known cases of children with multifocal osteosarcoma who survived treatment in the world! Therefore in his perspective he recommended palliative care and no aggressive treatment for Mattie. That was a monumental piece of information to receive, and I felt he was talking to me as if Mattie were a number and not a live human being. We then had the pleasure to meeting the head of orthopaedic surgery, who was equally as depressing and just as dysfunctional at communicating with families. This surgeon had an overinflated ego the size of a watermelon. He made us wait in an exam room with Mattie for over two hours. It was beyond insensitive. If that wasn't bad enough, when he graced us with his presence he started talking about very grave things in front of Mattie. At which point I literally stopped him and told him that I was going to bring Mattie outside to wait with my parents and Karen who were in the waiting room. When I got back into the room, the doctor literally looked at Peter and I for five minutes. Neither Peter nor I knew what to make out of this odd behavior. Mind you we were paying for this staring contest. Any case, after the ridiculously long silence, he then began shaking his head and said he did not know what to say other than he was sorry. He too recommended NO surgery and palliative care. By the time we finished with both of these doctors we felt mortally wounded and that we were given a death sentence. Interestingly enough neither doctor seemed concerned by this emotional bomb they laid upon us that day.

Naturally these two doctors were ultimately right, but here is the thing..... could we follow this advice and not try our hardest to give Mattie some quality of life? I recall after hearing this news, we contacted Georgetown Hospital and Mattie's oncologist. The difference between Sloan and Georgetown was like night and day. Georgetown believes in hope and treating every childhood cancer aggressively, and as I always say, Georgetown gave us 14 extra months with Mattie, time we may not have had otherwise. Was the battle worth it in the end? Some may disagree with our choices, but there is NO way I could have lived with myself if we did not try everything to save Mattie. All the decisions, each day of the cancer battle, all the ups and downs of the process, and Mattie's death remain within me. They are memories all trapped within my mind and body and this stress (though some would say this stress is no longer a real threat) simply builds up at times and makes me sick.