Wednesday, October 1, 2008

Wednesday, October 1, 2008

I have to start out by saying that Mattie is such a good sport. He literally spent his exciting "road trip" in a hospital the entire time. We arrived at Sloan Kettering today at 9:45am and did not leave the building until after 5pm. Mattie amazes me, because he does get impatient at times, but for the most part puts up with all of this far better than I do. Where he finds the courage and the strength for this is beyond me, but maybe that is the beauty of being six and not completely aware of the ramifications of things. I will try to recount this day for you, but I will let you know that these consultations left Peter and I feeling very depressed, and though we realized the seriousness of Mattie situation before today, there is something about today that was a real wake up call for us. A wake up call that Mattie has a finite time with us, and the bigger question becomes how do we want to play out his remaining years.

Our 10am appointment was with Dr. Paul Meyers. Dr. Meyers is the Vice Chair, Academic Affairs, Department of Pediatrics. Mattie was quickly examined and then spent the rest of the appointment with my parents while Peter and I spoke to the doctor for over an hour. Dr. Meyers talked in detail about three things: 1) the origin of Mattie's cancer, though unknown, he gave us a plausible theory, 2) alternative treatments to surgery, and 3) discussed an experimental drug called MTP-PE, which can only be administered (at least the first couple of doses) at Sloan or MD Anderson in Texas. Dr. Meyers highly recommends that we consider MTP-PE, but at the moment the drug company (IDM Pharma) will not allow this to be administered to new patients for another 5 weeks because of manufacturing issues with the filters, which help to form the drug. L-MTP-PE stimulates the innate immune system, or the body's first line of defense, to kill tumor cells, and based on data from clinical studies, when used in combination with surgery and chemotherapy, L-MTP-PE reduces the risk of recurrence of osteosarcoma and improves long term survival (of course we are not sure this data applies to children with multifocal osteosarcoma). Dr. Meyers had some major concerns about Mattie's quality of life if we indeed proceed with three protheses (both arms and leg). Dr. Meyers encouraged us to talk with Dr. Healey today about alternatives to surgery. But I could clearly see that Dr. Meyers felt that Mattie's situation was very serious and somewhat grave. In a nutshell the problem is from Dr. Meyers' perspective he couldn't recall a child with multifocal osteosarcoma who did not get recurrent cancer. This was a major blow to Peter and I. Mainly because we could help Mattie through this major crisis, which involves debilitating chemotherapy and life altering surgeries, but to hear that this cancer will happen again (who knows at what time frame), and that with each recurrent cancer, a child's body becomes more resistent to chemotherapy was too much for us to take.

After this appointment, we met up with Mattie and my parents. We took a picture of Mattie in front of the big apple outside the Sloan Kettering child play room (which is a misnomer, since the room is enormous, but Mattie refused to go in, probably because it was sensory overload for him). My mom found this special FAO Schwarz bag for him that you can see in the picture. He loved the bag and was using it to carry his toys around with him in the hospital. We had lunch at the hospital and then arrived on time for Dr. Healey's appointment at 2pm.

Dr. Healey is the Vice Chair, Conferences and Education, Department of Surgery; Chief, Orthopaedic Service. People had warned us about Dr. Healey. He devotes a lot of time to each of his patients, so we were prepared that the 2pm appointment time, wasn't actually going to take place at 2pm. However, what we did not factor into the equation today, was Dr. Healey had to be in NJ by 4pm. So what in essence happened was that our appointment was rushed. I did not feel that Dr. Meyers and Dr. Healey had talked with each other before hand about Mattie's case, and therefore at times Peter and I got conflicting opinions from them.

Before I continue with the story, I took a picture of Mattie and Peter while waiting for Dr. Healey. You have to understand that they put us in a holding room (just the three of us) for two hours, while we were awaiting the doctor. We played every possible game with Mattie, and he was climbing the walls. At 3:50pm, the doctor walks in, and pulls up a chair and starts to talk about these very serious issues in front of Mattie. Peter stopped the conversation after about 10 minutes so that we could have Mattie leave the room and wait with my parents outside. What I want to convey to you is the fact that Dr. Healey seemed visably disturbed about Mattie's case. He sincerely said to us, "I don't know how both of you are doing this." Peter and I read him differently, but I felt as if he came into the room with the resolve that there wasn't much that could be done for Mattie. That his fate isn't a positive one, and instead of doing more radical approaches (three prothestics), he is encouraging us to talk with a radiation oncologist. He feels if Mattie has three protheses, this will limit his ability to lead an active lifestyle in the short time we have with him. In addition he was VERY concerned about infection rates. He said with each major surgery, Mattie has the chance of complications and infection, that could prevent him from getting back on chemo in a timely fashion. Which Peter and I understand is vital considering Mattie's presentation of cancer. So Dr. Healey is recommending radiation in the left arm, and if the tumor grows back again, then we always have the option to do a prothestic at a later date. He is in agreement though that Mattie needs a prosthetic in the right arm and leg. There seemed like so many questions we wanted to ask, but Dr. Healey had to go, so he shook our hands and left for the day. After our appointment, we had a visit in the same room from Dr. Melinda Merchant. Melinda is actually a good friend of Artie (a friend of ours). Melinda was kind enough to stop by, chat with us, and answer many of our questions. She even walked us out of the hospital and later e-mailed saying she would help us in any way possible. Thank you Artie for this wonderful contact!

In the midst of all of this, my dear friend, Karen, met us at the hospital. She waited with my parents, helped entertain Mattie, and stayed the rest of the evening with us. Karen is a true friend and would drop anything in a flash to help us. I have known Karen since 6th grade, and our friendship has withstood the test of time.

After this horrible day, I was disillusioned, and basically wanted to curl up in a ball and not deal with the outside world. But our former neighbors, Goli and John, invited us over for dinner. Mattie's one request about going to NY was seeing Goli and John, and we were looking forward to connecting with them. So Peter, Karen, Mattie, and myself jumped into a taxi and met up with John and Goli. Thank you John and Goli for a fabulous buffet of foods. You really spoiled us and it was wonderful to be able to chat and reconnect. Below you will see some pictures from our lovely evening out.

Karen, Mattie, and Goli

John, Mattie, and Goli

Vicki, Mattie, and Karen

Goli, Vicki, Mattie, Peter, and John

I sign off tonight with two thoughts. I think I had high expectations for Sloan Kettering. I was hoping they would have some alternatives to present to us. Maybe some sort of magic pill to take this all away. Kind of like when you put someone falsely up upon a pedistal. It isn't realistic of course, and I had this painful reality lesson today. The last thought is we plan on making Mattie's day tomorrow a happy one, since his only experience in NYC so far has been within the walls of Sloan Kettering. We will head back to DC late tomorrow since we have our first MRI scan on friday at Georgetown Hospital.