Sunday, August 31, 2008

Sunday, August 31, 2008

Mattie woke up this morning full of energy and ready for an activity. As you can see, Mattie has lost most of his hair. Ironically, though Mattie knows he doesn't have hair any longer, he seems totally fine with this. Initially I was unsure how he would react when his hair started falling out, but like every step of this process so far, he has risen to the occasion, and it is me who is learning from Mattie. I am seeing the world through my child's eyes. It is a world in many ways that is more innocent, non-judgmental, and not clouded by previous experiences.

Mattie wanted to go for a walk with Peter soon after breakfast, so he put on his new bathrobe (thanks Charlotte!) and grabbed his IV pole and was headed out of his room. He walked the entire fifth floor unit, until Dr. Synder came to find him. Dr. Synder is our Hemonc (slang for Hematology and Oncology) doctor on call this weekend, and she has examined Mattie each morning and has gotten to understand his strong willed personality. But she told Mattie she is just like him, so they seem to understand each other well. Dr. Synder told Mattie that he was doing very well and most likely would be going home on Monday morning sometime.

While we were in Mattie's room this morning, someone knocked on our door. There at the door was a tech with her mobile CT scan machine. She told Peter and I that a chest x-ray was ordered for Mattie and she wanted to proceed with the CT. Even in my tired state, I knew that wasn't going to happen. I literally said, "I don't think so!" I told her that I wanted to hear from our nurse why an x-ray was ordered and who ordered it. Nguyet, our nurse, came running back to our room, telling us that this was a mistake, that no test was ordered for Mattie. I guess I mention this because for the past four weeks that we have been in the PICU, I have observed several children in the hospital, day in and day out, who do not have a family member/advocate present during their treatment. I worry about these children, because even though the health care industry may be well intentioned, a close eye needs to be kept on each patient. I am pretty confident that if Peter and I were not here in the room this morning with Mattie, he would have been given a needless x-ray.

Mattie had another visit today from his cousins. Mattie was very excited by their visit, and Nat, Sydney, and Will were great with Mattie. I can now say I know how a Ninetendo DS and iPOD work. My niece and nephews are bringing me into the 21st century. The funny part is Mattie just needed to see these things only once and he got it instantaneously. Again, this is the beauty of being six and being exposed to all sorts of technology at a young age. Below you will see some photos of our day together.
Mattie was fascinated by Sydney's ability to do back flips. So we had to document this moment!















Mattie, Nat, Will, and Sydney




















Will, Mattie, Vicki, Lisa, Nat, and Sydney


Later on in the afternoon, we received a visit from several of Peter's buddies from Arthur Andersen. These have been loyal friends and colleagues to Peter over the years. Enron can impact a company, but not the fine people who worked in it. Below you will see a picture of this reunion. I would like to mention that the fellow in the lower right hand corner of the picture is John Bonds. John is a melanoma cancer survivor, and once he found out about Mattie, he has been incredibly supportive of Peter and our family. Thank you John for all the wonderful materials, t-shirt, wrist bands, and other gifts from Lance Armstrong's foundation, LiveStrong.





Nat, Sydney, Chris Crowder, Jeanine Bonds, Tom Disantis, Cassie Disantis, Will, Peter, Mattie, and John Bonds

After Mattie said good-bye to his cousins and the Arthur Andersen folks, he then had some additional visitors. Linda (Child Life Specialist) and Jenny (Art Therapist) stopped by to visit with Mattie. They had taken over 100 children today, who have or had cancer, to a National's ballgame today. They knew Mattie wasn't able to attend the game, so in their usual classy and thoughtful style, brought National's stadium to Mattie. They showered him with gifts from the game and lots of tasty snacks. Thanks Linda and Jenny for always being there for Mattie!

Right after Linda and Jenny's visit, Jude came into our room. Jude is a volunteer musician at the hospital and he comes to the PICU on Sundays. He entertains the children, and comes into each room with a wagon full of fascinating instruments. In minutes Jude got all of us playing instruments and having a good time. In fact, Liz Chiaramonte (a wonderful SSSAS mom) came to visit us and to drop off dinner while Jude was in our room. Before Liz knew it, Jude had her playing a rain stick and even a drum. Thanks for being a good sport Liz! Above, you will see a picture of Mattie with Jude. Mattie is holding a huge rain stick. Thanks Liz for the wonderful homemade chicken soup, bread, salad, and wonderful cake. Actually all the nurses who came into Mattie's room commented on the tasty smell of the soup! Who wouldn't feel better after eating homemade chicken soup?

On the electronic front, thank you Barbsie, JP's mom (Jacky), Charlotte, Susan, and Phoebe the dog for your wonderful e-mails. Thank you Kim for your wonderful e-card. I don't know how you find these great cards! Thanks to Kazu for the great get well dance video. All these good wishes and thoughts make Mattie feel very cared about and special.

I want to end this e-mail on a spiritual note. I received a lovely e-mail today from Ashley Goff Glennon. In addition to being a RCC mom, she is also a minister. She wrote the following to me and I found it so meaningful that I wanted to share it with you. Thanks Ashley and goodnight to all!

Ashley wrote: "I was struck a week or two ago when you wrote that Mattie wanted to be "reborn" again. I've been thinking about this over and over again, picturing Mattie utter the words and the conversation going on inside of him to prompt that hope and dream. My mind did wander to the story of Nicodemus in the beginning of the Gospel of John. Nicodemus was a Jewish leader and came to Jesus and said "your a pretty amazing teacher, you clearly can't do the miracles and healings without God." Jesus then told Nicodemus, "You can be part of the movement of God if you are re-born, born again, or born from above." Nicodemus' literal brain started to go into action and asked how he could go back into his mother's womb. You can't do that twice! Jesus said to Nicodemus, "well, you are a pretty important theologian with lots of religious training. But you still don't get it, do you?" Jesus was telling Nicodemus you can have all the "smarts" in the world, but you need to be transformed by God, changed by the Spirit not by just "thinking and intellectualizing" but participating in the healing and compassionate acts of Jesus. To be born again means you are changed, you become a new being for the sake of Life. Mattie's request to be "reborn" has biblical roots! He isn't the first to ask of this. Jesus wants Nicodemus to catch on that he is being born again, he is being changed, transformed and will come out a new person. I picture the liquid in those IV's being Mattie's "re-baptism." The baptism language is used in the Nicodemus story. You can't be re-baptized literally but those liquids are immersing Mattie into this journey to new life and rebirth."