Tuesday, September 16, 2008

Tuesday, September 16, 2008

Mattie started his day on a happy note. He wanted to get out of bed and play with me. We did two hours of legos this morning and he was able to eat all his scrambled eggs. This was big news to report! We had a good morning together and we joked about collecting urine. As the morning wore on though, he decided to venture out of his room. He donned on his fleece bathrobe and headed out into the hallway looking for Whitney, one of Linda's interns. Linda is on vacation this week. Happy vacationing Linda, it is well deserved! All the nurses get a big kick out of Mattie because they know when he enters the halls, he is a man on a mission. Mattie's mission was to find Whitney. Thankfully we found her and Lesley (another childlife intern). Whitney and Lesley helped Mattie create a wonderful beach scene on a poster board, and Mattie was able to color all sorts of fish to add to this poster creation. The poster is now up in our room and adds some nice color to the room!

We had a visit today from Tad Ferris. Tad is the father of Kazu, a SSSAS buddy of Mattie's. Tad's family has been personally touched by cancer, so seeing him in the hospital today was a very courageous and selfless act. Tad came and delivered several items to Mattie, such as scooby snacks in a wonderful dog bone shaped metal Scooby Doo tin. Mattie also was happy to receive all the wonderful scooby stickers. The Ferris family also gave us a hand held massager. You know what Peter and I will be fighting over in the hospital. Thank you for thinking of us and your support!

After Tad's visit, Mattie was still searching for something to do, and while we were waiting for his urine analysis results we decided to pay a visit to the clinic and spent some time with his buddy, Jessie (his art therapist). Mattie loves working with clay, and he is designing a whole series out of clay with a central character he named, "big head." Big head is aptly named because he has a HUGE head that seems to get in the middle of everything. Mattie designed his third "big head" clay sculpture today and Jessie and I are getting a kick out of his theme.

I then met up with Dr. Myers in the clinic and he told me that Mattie's creatinine clearance level was 120 today, and it was 52 yesterday. Amazing what hydration can do for a body. So Mattie said his good-byes to Jessie, and headed back upstairs. As we waited for the research pharmacy to make Mattie's chemo, Mattie had a nice visit from Susan DeLaurentis. Susan is Mattie's school counselor at SSSAS. Susan faithly sends Mattie a singing card in the mail each week, and today she delivered an envelope full of cards from one of SSSAS's first grade class. Thank you Ms. Fiske's class for the wonderful "funny face" cards. They are delightful and could bring a smile to anyone's face. Thank you Susan for working on this with the kids and for hand delivering them!

Later this afternoon we had a visit from Liz Chiaramonte, a SSSAS mom who we have become friends with. Liz delivered us a tasty dinner and she spent some time talking with Mattie about his legos. After Liz left, Erin (Mattie's nurse) and I were preparing him for the chemo that was about to begin. It is amazing how we went from happy and playing in one minute to serious and questioning in the next minute. Right in front of Erin, Mattie asked me, "am I going to die?" He realizes on some level how sick he is. The question was asked in such a sensitive, yet serious matter. I basically said to Mattie that we all are going to die, but this wasn't going to happen for a very long time. Again I reiterated that he is receiving chemo to fight the bone bugs so that he could continue to live a long and happy life. On one hand I felt like I answered the question well, but on the other hand I felt like I was being disingenuous. But after all, what would be the purpose of dwelling on dying? He/we have to be optimistic!

Chemo started tonight at 5pm. This is a 48 hour infusion. This point in time, I refer to as the calm before the storm. The negative side effects of this chemo appear to have a delayed reaction. So I am sure tomorrow will be quite a day. In the midst of all of this today, I received two lovely messages by e-mail that I wanted to share with you.

The first message was sent by my friend, Charlie. She sent me the "story of the geese" below. I have always used this story when doing lectures on leadership, but when Charlie sent it to me and related it to supporting a child through cancer it caught my eye. Mainly because I never looked at the story in this way, why would I? I guess why would any of us, unless cancer played a part in our lives. But basically the story of the geese has real relevance to fighting cancer and how teamwork is the way to do it. When you get tired, let others help by stepping in until you can "take point" again. This disease takes a flock to defeat. Prayers and love are part of the "uplift."Thank you Charlie!

STORY OF THE GEESE
As each goose flaps its wings, it creates an “uplift” for the bird following. By flying in a “V” formation the whole flock adds 71% more flying range than if each bird flew alone.

LESSON: People who share a common direction and sense of community can get where they are going quicker and easier because they are traveling on the thrust of one another.
When a goose falls out to formation, it suddenly feels the drag and resistance of trying to fly alone and quickly gets into formation to take advantage of the lifting power of the birds immediately in front .

LESSON: If we have as much sense as a goose, we will join in formation with those who are headed where we want to go. When the lead goose gets tired, it rotates back into the formation and another goose flies at the point position.

LESSON: It pays to take turns doing the hard tasks and sharing leadership. People, similar to geese, are interdependent with one another. The geese in formation honk from behind to encourage those in front.

LESSON: We need to make sure our honking from behind is encouraging, not something less helpful. When a goose gets sick or wounded or shot down, two geese drop out of formation and follow their member down to help provide protection. They stay with this member of the flock until he/she is ready to fly again. Then they launch out on their own, with another formation, or to catch up with their flock.

LESSON: If we have as much as sense as the geese, we’ll stand by one another like they do.

The second message came from Paul R. Mullins (Chair, Dept. of Anthropology at Indiana University). I do not know Paul, but we have gotten to know each other through a mutual connection, Rev. Rosemary's (at SSSAS) sister, Bunny. Paul wrote the following to Mattie, "I was reading your blog and see you’re a fan of doughnuts, as I am too: I even wrote a book about doughnuts, so I really have a great job. I run marathons too, so I really like the little story on your blog about marathons and beating cancer and couldn’t have said it better. Dunkin Donuts has a marathon every year, so we both should put that on our list of things we need to do. In the middle of World War One under the worst possible conditions, a team of women from the Salvation Army decided the best food to eat in the middle of the war was a doughnut, and tons of soldiers ate doughnuts before they went into battle. You’re doing your own battle now, so hang in there and eat a few doughnuts along the way. I hope we get the chance to run or maybe just walk a doughnut marathon soon." Thank you Paul for helping us understand our doughnut consumption from a historical connection. I found that fascinating.

On the electronic front, thank you Bunny, Barbsie, Charlie, Paul, and Goli (we loved the slide show) for your e-mail and Kim, Susan, Karen, and Margaret for your e-cards. I thank you for all your thoughts and prayers. We can definitely use them as we start this next round.