Quote of the day: "We are all connected to everyone and everything in the universe. Therefore, everything one does as an individual affects the whole. All thoughts, words, images, prayers, blessings, and deeds are listened to by all that is." ~ Serge Kahili King
Mattie woke up in a very good mood today. He wanted to eat and he wanted to play. Erin was his nurse and some of you may recall that Erin and Mattie made a deal with each other a few weeks ago. He gives her hugs and in return Erin gives Mattie syringes to squirt water at people. Mattie was just in rare form today, he was talkative, lively, and engaged for the most part.
His first visitor for the day was Sally the story lady. Sally dresses the part of whatever story she is going to tell during her visit. Today she was dressed to go on an archaeological dig. Before Sally told her story, she had Mattie tell her a story about his Lego creation. Specifically the lego hospital creation he designed for the art show this weekend. Fortunately Mattie was able to tell a story around the set, because he and I played extensively with this model when we were home last week. So Mattie told Sally his story about the two bad pediatric patients who live in his model. Why are they bad? They are bad, because they cleverly find a way each night to escape the hospital because they do not like the food. Each night they escape to the International House of Pancakes! Sally got a kick out of this story, and wrote it down. Apparently the story will be blown up on paper and framed for the art show. I can't wait to see Mattie's story on display. I will be sure to take plenty of pictures on Saturday!
Mattie then headed to the childlife playroom with Sally and had the opportunity to hear one of Sally's stories. I unfortunately missed the story because Mattie had me running back and forth getting things from his room. I also had the wonderful opportunity to chat with several of the HEM/ONC nurses today. Just lovely, bright, and charming ladies! I feel like Peter and I are taking fatigued to a whole new level. In fact I feel so tired that there is no amount of sleep at this point that will help my situation or my mood.
Mattie and I worked on his Alice and Wonderland puzzle this morning and then we met up with Anna, Mattie's physical therapist. Mattie wasn't in the mood to do physical therapy at first, but after our conversation last night, he had a change of heart. Yesterday evening, Mattie and I were sitting on his bed and building a pirate Lego set, when he stopped, looked out the window in his room and told me he didn't like looking out the window. When I asked why, he said because all he sees through the window are people who can walk and run. Things he can't and will never be doing. I explained to him that his disability is temporary. That he will not always be in a wheelchair. He did not understand this at first. I have explained this to Mattie numerous time and so has Peter. But I think this is a hard concept to grasp, a temporary disability! Why are some people temporarily in a wheelchair and others in a chair permanently? I told Mattie that he needs to work hard in physical therapy and to exercise his legs, and it is through doing this that he will be able to walk again. Well something seemed to have clicked, because today he did FOUR laps around the entire fifth floor. I assure you that is a lot of walking. He kept requesting to do another lap! In the past Mattie, at his best, could do two laps. I think my conversation with him helped, but I also attribute Mattie's motivation and energy to do these laps to Meg.
Meg is one of Linda's interns, and she is Mattie's racing partner. Meg hams up her racing skills, and pretends to trip, fall, and be out of breath. Meg also made gold medals for Mattie today after each race that he won. He was loving the attention, and he enjoyed watching Meg struggling to keep up with him. Mattie set up an obstacle course with cones, bowling pins, and balls. You just had to see him in action. I need to take Meg and Anna home with me, because they both really get him up and moving. Check out some of the wonderful photos I took today during the races. Jey, Mattie's "big brother," Jenny, and Linda also observed these races and everyone was impressed with Mattie's stamina.
Left: Mattie in action with Anna
Right: Meg, Mattie, and Anna
Left: Mattie, the gold medal winner!
Mattie had a special visitor today, Mary Dressendorfer, his technology teacher at St. Stephen's. Mattie said he wanted to do computer time today, but in true Mattie form, when Mary arrived, Mattie did not want to do this. Instead, Mary worked with Mattie on his puzzle and on the creation of his huge cardboard box worm house. We have moved passed roaches today, and are focusing in on worms and snails! Quite a box, no? But what you can't see is inside it is stuffed with worms and snails made out of model magic.
Mary gave me some time to myself to actually eat lunch. I really appreciated her visit and her commitment to Mattie. I had an opportunity to chat today with Mary about a list of websites and educational software that Linda could consider for the childlife computers. Mary has been giving this request a great deal of thought. Actually so much thought, that she has been designing a portal system for Linda so that all the pediatric patients could access it through the Web. Mary has designed a fabulous portal resource for St. Stephen's, and I am not only thrilled she took this on for Georgetown, but am deeply honored. In addition, Mary wants to name the portal after Mattie, so that Mattie's presence will always be remembered at the Hospital. I was very moved by Mary's meaningful idea, but of course will need to see how Linda feels about this. I want to remind our readers that Mattie's school in having a spring break this week, yet Mary came to visit Mattie and on her own time is working on this Web resource for the Hospital. What do you say about such a lady? She is a gem and from what I can see she has found some great educational links for children. Thank you Mary for your generosity of time, energy, talents, and skills.
Mattie had an infusion of MTP-PE today and did very well through the administration. Mattie had a good lunch and we read two books together while he was eating. After his lunch, he worked with Laurie, a volunteer, on his worm house. He really loved making grass for the house today.
Then of course without a doubt, out came his ABBA CD. Even Dr. Shad, the director of the HEM/ONC practice stopped by today and told Mattie how much she likes ABBA. The music is catchy, it is hard not to like it or feel good hearing it!
As the evening approached, Mattie was looking forward to having a movie night with Meg (Linda's intern). They literally made a blanket fort in the room, and had Linda's star projector machine going in the room. They watched the movie Curious George together. The room is small, so I gladly removed myself from the process. There was literally NO where to sit on the fifth floor this evening, so I had to leave the floor, and sat on the second floor of the hospital. It was an uncomfortable position, because I do not like venturing far from Mattie while in the hospital. But it speaks to my former comments weeks ago, that a place to turn to for serenity and peace on the fifth floor is so needed. While Mattie was watching the movie, Peter arrived from work and we ate together on the second floor. We want to thank the Wright family for a wonderful dinner from the California Pizza Kitchen. Mattie loved the bread and butter. Butter is his food of choice this week!
After dinner, I had some work to do, and Peter went back up to play with Mattie. We are still awaiting Mattie's methotrexate level to fall. It is currently .15, so close to .1, but not low enough yet to be released from the hospital. We have no doubt that by tomorrow morning, he will be good to go. So Peter and I have a night of packing to look forward to, just so we can turn around and come back to the hospital on Monday for a week. Lovely! But next week is a special week, because next Saturday is Mattie's birthday! I can still remember the day he was born. He was the picture of health, and I would never have expected him to become so ill. Needless to say, his illness continues to be an eye opener for me. You can't put off something you want to do until tomorrow or until things settle down, because in some cases tomorrow may never come, or perhaps not the tomorrow you expected.
I end tonight's blog with two messages. The first one came from my mom today. My mom wrote,
"The thoughts that follow are inspired by your blog and the pictures of Mattie with all his friends and his spectacular creations: We always knew that Mattie Moon lights the sky and shines through the inky night when everything that surrounds us is obscured by darkness. Now, his daylight personae has found its true identity: Mattie Sun is like the center of the universe where instead of planets revolving around him there are a collection of people: talented artists, musicians, poets, dancers, storytellers, healers, nurses, therapists, technicians, counselors, teachers, friends and family that are drawn to him by his unique magnetism and their hope that like the sun, Mattie's magical presence in their lives will long endure so that his special "sunshine" exhibited throughout his struggle for survival will remain alive and an inspiration to all people dealing with cancer. What a profile in courage our little hero has given all of us."
"The thoughts that follow are inspired by your blog and the pictures of Mattie with all his friends and his spectacular creations: We always knew that Mattie Moon lights the sky and shines through the inky night when everything that surrounds us is obscured by darkness. Now, his daylight personae has found its true identity: Mattie Sun is like the center of the universe where instead of planets revolving around him there are a collection of people: talented artists, musicians, poets, dancers, storytellers, healers, nurses, therapists, technicians, counselors, teachers, friends and family that are drawn to him by his unique magnetism and their hope that like the sun, Mattie's magical presence in their lives will long endure so that his special "sunshine" exhibited throughout his struggle for survival will remain alive and an inspiration to all people dealing with cancer. What a profile in courage our little hero has given all of us."
The second e-mail is from my friend Charlie. Charlie wrote, "It is 5:30 in the morning and since I work nights, I am not particularly lucid early in the morning but I wanted to let you know I had gotten up, read the blog from Wed and wanted to respond as best I could before I left on my trip. It certainly was a tough day on Wed for both you and Mattie. Exhaustion makes everything so much harder; doing even the simple things is like wading through quicksand. Every time you stop moving sleep wants to pull you back down into the pit. And if you are not feeling well on top of that, well, it takes a hero to keep going. Lots of people were helpful and kind whether it was actively bringing things and entertaining Mattie or doing their best not to disturb you when you were trying to rest. I do want to tell you that I especially love the picture of Mattie and his hat; I just don't think you could have done it justice with a description. Is Mattie going to design a line of hats for Easter? I am sure he can come up with some creative, colorful designs for his friends. Maybe we'll get to see cockroaches in Easter hats (That comment is from Brian Boru, Mattie's feline friend)?"
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