Monday, March 9, 2009

Monday, March 9, 2009

Quote of the day: "If nothing ever changed, there'd be no butterflies." ~ Author Unknown

Before I tell you about Mattie's day, I want to acknowledge that today is indeed a very sad day in our world, the little six-year-old boy I told you about, who has been fighting for his life for four years, died on friday. When I heard the news today, I had no reaction other than great sadness. For me it is always a delayed response. However, as I visited this little fellow's blog tonight, I couldn't help but become absolutely hysterical. I know Peter had the same reaction at work when he read the blog. I attached the link below to Cody's blog. Normally I wouldn't do this for privacy reasons, but I feel that Cody's life should be celebrated and acknowledged. His fight, and it indeed was a battle, should not be for naught! Cody was a spirited little boy, and he seemed so strong, that nothing, not even cancer could squelch his amazing personality and will for life. Imagine suffering intensively with painful treatments for FOUR years? I went on Cody's webpage today and as I read more about him, I saw that he and Mattie had a lot in common. Especially their love for legos. When someone you know, who is getting treated with you at the same time dies, it really hits you like a ton of bricks. I am not sure how Cody's parents and siblings are managing, but I know such a profound loss like this will never leave you. Our hearts are heavy tonight, because six year olds are NOT supposed to die!

http://deckapes.blogspot.com/

As for Mattie, he had a hard time falling asleep on sunday night. In fact, he was in bed at 11:30pm, and watching a video, with the hopes that he would fall asleep. However, at 12:30am, he yelled out for me, and I jumped off the bed on the floor and tried to calm Mattie down for the night. Literally that meant sitting next to him and massaging his head and neck, and holding his jumpy legs down with my arm. Finally he fell asleep. Mattie was up every three hours going to the bathroom because of his IV fluids, but other than that, it was an uneventful evening.

Mattie and I headed off to the clinic this morning for his check up, blood draws, and MTP-PE infusion. Mattie was greeted by Jessie and Jenny and he had a great time creating a mosaic with them. In fact, an older patient inspired Mattie to do a mosaic today, because I think he admired what she created. During the exam today, Dr. Synder asked Mattie about his walking. She asked me how often he walks at home and so forth. I told her about my struggle with Mattie and getting him up and moving, so she then turned the attention over to Mattie to see if he saw things the same way as me. With that, Mattie started crying and buried his head in my lap. Clearly talking about walking, or the fact that he isn't doing it yet is a very sensitive topic with him. Dr. Synder dropped the topic and we tried to pull him out of this reaction.

Mattie did have a productive day in clinic and was very busy. He even used the pottery wheel and shaped a vase, which he is very proud of. I snapped a picture of him working at the wheel.

Later in the afternoon, Meg, Linda's intern, came downstairs to play with Mattie. Meg worked very hard because Mattie can put you through your paces. Meg and Mattie worked on a mosaic, built a lego race car, and then they played with Mattie's Haunted House box that he created back in October. Remember ALL of Mattie's boxes are taking up space all over the clinic at the moment, so he could easily grab one to play with. The clinic is being nice to hold onto these boxes for me, but we really need to let them reclaim their space. Check out Meg and Mattie in the Halloween spirit. Mattie is cackling like a witch and Mattie piled a bunch of ghosts on top of Meg's head.

While Mattie was working with Jessie, Jenny, and then Meg today, I was working on a creativity project. The hospital has asked children and parents to design what they think a hospital should look like. Mattie is working with Peter on a lego design for this, but Jenny and Jessie asked me if I would like to do a separate one. So I am struggling through it. My creativity is not what it once was, I may have it in my head, but how to implement it is another story. I want my art work to make a statement, particularly that an ideal hospital has its own HEM/ONC unit. So I am brainstorming how to do this. It keeps my mind busy, since we were at the clinic from 11:30am to 4pm!

Mattie had no problems with his MTP-PE infusion today, and in fact, was ready to go as soon as it was over. But we had to wait two hours post-infusion to make sure Mattie wasn't going to have an averse reaction. When we arrived home, Mattie wanted to continue to play. So we played with his Star Wars lego set. Apparently I was the good guy getting attacked by some evil looking thing! When Peter got home tonight, he delivered a package to Mattie that my parents sent him from California. My parents sent Mattie two Lionel trains. He was besides himself and was thoroughly thrilled. He said, "I love that Grammie and Pop Pop." Needless to say the trains were opened and are now on his train track. He is a happy boy with his new trains!

We want to thank the May family for a wonderful homecooked dinner tonight. Thank you Liza for roasting us a chicken and for the wonderful side dishes as well. Mattie also loved your jam filled cookies! We all enjoyed dinner and we appreciate your kindness and effort with dinner. Tonight we also did some laundry. You never know when you will be heading back to the hospital, so you always have to have a clean bag packed!

As we settle into the night, Peter is playing with Mattie downstairs, and as soon as I finish the blog, I will be helping Mattie get ready for bed and to try to settle him down for the night! Tuesday is a free day for us, and in a way it is nice not to have a structured day ahead of us. Of course, I may be singing a different tune tomorrow night!

I end tonight's blog with two messages I received. The first one is from my friend Charlie. Charlie wrote, "It was wonderful to read the blog and see Mattie and the family all enjoying a "normal" day with friends. Mattie and Campbell looked like they were really enjoying their time together. Although it is hard to leave the security of the hospital, life outside has its advantages including no 5:30 AM blood pressure checks! Change is always tough even if you don't particularly like what's going on anyway. There is security in familiarity. I know you wonder and blog about the future and I am sure on the worst days you wonder if you did the right thing in putting Mattie through all this; when I see pictures of his smiling face and his connection with friends and family, I can see it was the right thing to do. I hope that like the glorious weather that arrived this weekend, the long winter of Mattie's treatment is drawing to a close and he will bloom like our beautiful spring plants."

The second message is from Tanja. You may recall Tanja watched Mattie for five hours this passed saturday. After reading last night's blog, she sent me an e-mail. I included part of the e-mail here. Somehow this e-mail came at the right time last night, as my head was spinning with all sorts of thoughts about the future. Thank you Tanja. Tanja wrote, "I just finished reading your blog tonight and I can't even imagine how you must feel when you try to look into the future. But one thing I am sure of- even though I don't have crystal ball either: Team Mattie will not go away once Mattie finishes his treatments. Through this horrible ordeal that your family is fighting through, you have made so many strong connections with people. These type of bonds and people don't simply disappear. People will still be there: willing to listen, offerring to help, giving companionship and the gift of friendship. Also, you and your family have mastered every stage of Mattie's illness and treatment so well, that despite the unknown ahead of you, you should trust your skills and personality that you will be able to handle whatever is coming at you with flying colors!!!! You have proven this over and over again."