Thursday, September 4, 2008

Thursday, September 4, 2008

Mattie slept through the night! However, Peter and I are so used to getting up at 4am, that we were wide awake today and couldn't go back to sleep. We are on hospital time and are learning to sleep in two hour increments. Needless to say, we were scheduled to be in the clinic today by 10:30am to get Mattie hydrated to prepare him for Methotrexate. But I was so tired and I couldn't get it together, that we arrived at the clinic over an hour late.

Mattie started his day checking his e-mail. His preschool director, Kim Messinger, sent him two e-mails. Kim has adopted a sea turtle for Mattie, and Mattie will be receiving information soon about his turtle, as well as ways to track his turtle on line. This is a wonderful way to keep Mattie stimulated, and we want to thank Kim for such a thoughtful gift. We will keep you posted about this new addition to the family. Last night, I also received an e-mail from Kathy Harris, one of Mattie's preschool teachers at RCC. Kathy is a talented and dedicated teacher, and Mattie is very fond of her. So much so, that Mattie pined for Kathy the first couple of months of kindergarten. In Kathy's e-mail to me, she mentioned that she and Kim are concerned about our level of isolation this coming year. Kathy knows that Mattie and I thrive on interacting with others. Kathy would like Mattie to serve as her junior classroom aide this year in the block room. She will welcome him whenever he is able to come to the school. RCC, to my knowledge, has never had a junior aide in the classroom. Though Mattie is no longer a student at RCC, the RCC community continues to stand behind its own, and has no trouble coming up with creative and novel ways to do this.

The first fundraiser for Mattie occurred today. Thank you Siobhan Starr and Ann Henshaw for coordinating this. The bake sale was held at the Braddock Road Youth Club Soccer Annual Uniform Exchange in Fairfax. You can see the event listing at: http://www.brycsoccer.org/. It is very heartwarming to see all the support Mattie is receiving, and in a way this support is powerful and healing medicine in and of itself.

Mattie arrived today at the Lombardi Clinic and met up with his buddies, Jenny and Jessie (our wonderful art therapists). Jenny knows that Mattie LOVES packing boxes, so she is now saving them for him. Mattie loves to create and build with boxes. Mattie was very excited to see the box Jenny got for him today, and he instantly started working on transforming the box into a "hut." Not just any hut, but a hut he can crawl into to escape from the nurses in the PICU. In addition to creating a door with a door knob, Mattie's hut also has a rug, bats living under the roof, and wall pets. You may be asking yourself what are wall pets? Well the wall pets protect the hut. If Mattie's nurses try to come into the hut, then the pets attack by spitting and vomiting (the perfect plan for any six year old boy)! You can see Mattie's hut with Mattie in it below. He has already tried the hut out on Kathy tonight (his nurse). Kathy is a good soul and played right along with Mattie.

As you can see from the picture on the left, Mattie's knees have bandaids on them. Mattie tripped and fell yesterday while running inside. It was like a surreal experience. I could see it happening, but there wasn't much I could do about it, since he was far ahead of me. For most six year-olds, such a fall and scrape would be no big deal, but with Mattie and his compromised immune system, such a scrape could be dangerous. I found myself focusing on these scrapes throughout the rest of the day, and at some point, I had to say, enough is enough. We cleaned it, I told the doctor about them, and we will just keep an eye on it if something seems to change in his condition.

Tonight, we had a visit from the Brandt family. Thank you Hilary for a lovely dinner, and for Missy and Matthew for visiting with Mattie. Mattie loves the Leapster game and books you brought him.

We had a good chat today with Dr. Toretsky, Mattie's oncologist. We told him about our desire to consult with other professionals regarding Mattie's condition. I think part of the issue I am dealing with right now, is a sense of guilt. I feel that Mattie's diagnosis and treatment plan evolved so quickly that on some level I feel as if we did not have time to understand Mattie's case and get multiple opinions about the best course of treatment. This has nothing to do with the fact that Mattie has the most able and competent doctors overseeing his treatment, but this is more a reflection of the fragile state a parent is in when dealing with all of this. We knew Mattie needed chemotherapy right away to avoid the proliferation of more tumors, but I think we both feel now that we need to be as educated as possible about surgery options and their ramifications for Mattie before proceeding forward.

It is 9:30pm now, and Kathy is starting the infusion of Methotrexate into Mattie. If you recall my description of Methotrexate, I describe it as highlighter yellow. Kathy administers it with very thick rubber gloves. Mattie took one look at this yellow stuff tonight that was coming into his IV and said to Kathy, "please stop the pee pee." We all broke out in laughter, Mattie included. I guess from a six year old perspective the Methotrexate could look like "pee pee." We have no idea what the night will exactly hold, but one thing is for certain, we are very grateful to have all of you in our lives. I received several e-mails today from friends. I can't tell you how much it meant to hear you say we are doing a great job, and how in awe you are of what Peter and I are able to accomplish. Good night and God bless you and our Mattie!