Tuesday, September 2, 2008

Tuesday, September 2, 2008

Picture:

Mattie in his Oilers Jersey and hat. Thank you Capital Health (one of Peter's clients in Canada)! We'll get the whole family in the shot next time with our matching Oilers jerseys and hats.

Despite being very tired, I find that each night I become wired at 1opm, and it is then that I get my second wind. I was researching things last night as it relates to Mattie's health, but at midnight, Peter said enough is enough, and literally walked me to bed and tucked me in. He took all my papers away from me. It was a good plan actually considering what the night held for us. So picture all of us asleep and resting peacefully last night, with an emphasis on resting in our own beds (which I must admit I took for granted prior to all of this). Then at 4am, out of deep sleep I am awakened to the words, HELP! HELP! HELP! I literally flew out of bed and down the hallway and came crashing into Mattie's room. Mattie was in his bed, curled up in a ball, and looking very frightened. Peter and I asked him what had happened and if he felt okay. He really did not respond to what was bothering him, other than he wanted me to stay with him in his room. So every parent who has ever spent a night of sleep in their child's room, knows the extent of sleep I got last night.

So today is Tuesday. As many of you know, Tuesday has become one of my least favorite days of the week. It is shower and dressing changing day! Mind you before Mattie was diagnosed with cancer, he used to love taking a bath or a shower. Now, showering is like pulling teeth. We encouraged him to get the process over with, since his buddy Charlotte was coming over in the afternoon. However, as soon as he heard the water in the shower, he literally had a tantrum and started crying hysterically. After trying to reason with him for 45 minutes, Peter and I were getting worn down. But we held our ground, since he very much needed to get washed up. I have concluded that he doesn't like putting a plastic bag over sparky to protect it from getting wet while he showers. Specifically he doesn't like the tape that is used to hold the bag in place over sparky. A friend of ours recommended we wrap this portion of Mattie's body in the press and seal saran wrap. I will have to try it, because I will not use the bag idea again. I was surprised by his reaction today, because I thought the big problem would be around getting his dressing changed. But he handled that quite well instead.

This afternoon, Mattie had a visit from Charlotte and her mom, Ellen. As I always tell Ellen, I am very grateful to her. She is the mom who told me about the tennis camp Mattie was enrolled in this summer. Thank God for tennis camp. In my mind tennis camp aggravated Mattie's condition enough to bring it to our attention. The kids had a great time, examining things under Mattie's new microscope (a basil leaf, a marigold flower, and even a dragonfly) and playing all sorts of games together. While they were playing, Ellen and I chatted. We chatted about Mattie and a lot of other things not related to Mattie. Ellen then asked me if I minded talking about other things, and she told me that she felt bad that we got off on this tangent because that did not mean she wasn't thinking about Mattie or us. I found that comment to be very sensitive, and it got me to think about how others in our life are processing what is happening to Mattie, Peter, and I. I must admit that I have been very wrapped up in our own processes, that I forgot how this may be impacting others that care about us. It was very interesting to learn today how Charlotte is understanding and processing Mattie's illness. I am not sure why I am so surprised by Charlotte's reaction (Charlotte is very devoted to following Mattie's progress and is really trying to understand what is going on with him and how to support him.), maybe because I never really thought that friendships (like I understand them to be at the adult level) were expressed or felt as deeply at the child level. Again, I am learning a lot about the capabilities of six year olds.

Below you can see some pictures of Mattie and Charlotte running around. Charlotte brought some stuffed animals for Mattie today that she got for him on her beach trip. Mattie was working hard at getting Charlotte's attention with these animals, mainly because I think he loves to hear Charlotte laugh (she has a wonderful laugh, that when you hear it, you can't help but laugh yourself). Thanks Charlotte for the Hair Fairy book! Mattie really loved it tonight.

Today was the first day of school at St. Stephen's and St. Agnes, but I am not sure Mattie understood this. However, it was so nice to get a phone call from Bob Weiman (Mattie's head of school) today. Bob acknowledged in his message to us that even though it was the first day of school (which is always exciting) on some level it was bittersweet for him since Mattie wasn't there. A phone call is such a simple gesture, but his message meant the world to Peter and I. It meant a lot because it helped us to feel like we are still a part of the school community and that Mattie will not be forgotten.

Today, Pete made a few phone calls, first to Dr. Melinda Merchant, an Oncology doc at Sloan-Kettering, and a personal friend of Arti and Srinivas Varanasi (Srinivas works with Pete at Voxiva) who helped get us connected to Melinda. Melinda was very helpful and we will likely travel up to MSKCC to get a second opinion/consult on Mattie soon. Pete also spoke with Dr. Nita Seibel, formerly of Childrens and now with NIH on the same topic. Nita has been following Mattie's case indirectly, and we are going to see her next week for a consult. Many thanks to Allison Portnoy who got us in contact with Nita. Both Doctors were very helpful over the phone and gave Pete a fresh perspective on things as well as made us more comfortable with the decisions that we have made and the steps we have taken.

Of course no day would be complete without a visit from JJ. JJ loves to come into our home and he is very intrigued by Jack (Mattie's special Jack Russell terrier stuffed animal - thanks John!). Below you will see a picture of JJ trying to play with Jack. We suspect that JJ thinks Jack could be a play buddy! It is amazing how our furry friend JJ brings such happiness into our lives.

Later this afternoon, we had a wonderful visit with Beth Engiles. Beth and Peter worked together at Arthur Andersen, and Beth delivered us a tasty dinner (one of my favorites, a vegetable pizza from Bertucci's) and some gifts for Mattie. Thank you Beth for the Scooby Doo pjs, and for the wonderful magic set collection. I must admit I can't follow magic trick instructions, and I am going to turn to Bob for some assistance! Mattie loved going through the box of tricks, and I am certain that it is only a matter of time, until he figures it all out. Beth, thank you also for treating Peter and I to a day at a spa. What can we say!! The picture below shows Mattie trying to perform a magic trick for Beth.

On the electronic front, thank you Kim and Margaret for your wonderful e-cards. The cards brightened up our day and brought a smile to our faces. I also want to thank Karen, my lifetime friend in NY for her thoughtful e-mail today. She sent Mattie an e-mail with pictures of a bunch of FAMOUS and well accomplished bald men in our society. Mind you one of the pictures was of Charlie Brown. Mattie loved it! Thank you Ann and Alison for checking in today and for always asking how we are doing. We plan on enjoying our Wednesday at home before returning to the hospital on Thursday. Thank you all for your love, support, and prayers. We consider ourselves very blessed to have you in our lives.