Sunday, February 1, 2009

Sunday, February 1, 2009


Quote of the day: “This very moment is a seed from which the flowers of tomorrow's happiness grow." ~ Margaret Lindsey



Charlie wrote, "I think the blog took me to flowers with the picture of Mattie holding up the flower he made for you. Somehow the image that comes to mind right now is Mattie as a bulb, unseen, full of life, waiting for the spring and his opportunity to once again show us who he is. These glimpses are like the false spring thaws we have here in Virginia, you see the green from your daffodils peek above the ground (and you know your bulbs are alive there) but they stop growing and wait every time the weather changes back to winter. So it seems to be with Mattie, in the hospital, a kind of holding pattern waiting for the chance to be home for an extended period and show once again that the wonderful spirit is waiting for an opportunity to reemerge. Keep the flame of hope alive, Mattie's spirit is there and just waiting for an opportunity to start growing again."



Peter stayed with Mattie last night so that I could get some rest. However, I did not have a restful night of sleep for some reason. When Mattie got up this morning, I cleaned him up and dressed him for the day since he had a visitor coming over in the afternoon. Mattie spent the morning doing puzzles and building with Peter. I went out this afternoon with two friends I hadn't seen in a long time. It was lovely to go out to lunch and to be able to sit and chat like an adult. One of my friends made Mattie homemade marshmallows, which Mattie thought were great along with moon shaped cookies. I also received the book, Living with childhood cancer, today which I plan on reading. It was the first weekend that Peter and I split up parenting duty. I decided to take a break this afternoon, since Peter was invited to go out to see the Super Bowl with our neighbor, JP. This actually worked out well.

At around 2:15pm, Louise (who is a senior at SSSAS), came over to spend some time with Mattie. Louise met Mattie at the hospital last week, and she and her sister hit it off with Mattie. Mattie was happy to spend this time with Louise, and Mattie told me they did a lot of fun things together like playing with his trains, legos, looking at seashells, puzzles, and even helping Peter finally take down our Christmas light display outside! It was a very productive visit, and Peter was even able to run out and do some chores while Louise was with Mattie. Louise had a busy weekend between her school's formal on saturday and a squash tournament today, yet she volunteered to help us. I was very impressed with her generosity of time and her mature priorities. After all, she could have spent her time this afternoon doing anything she wanted to do, but I think it says volumes about her that she took this opportunity to get to know Mattie better.

When I got back from lunch today, Mattie was saying good bye to Louise. I then helped Mattie get ready for his playdate with Charlotte. Ellen and Jeff, Charlotte's parents, invited us over their house this evening for dinner. Mattie and Charlotte had a great time together. Charlotte has a contagious laugh, and hearing that sound is good medicine. Ellen served us a fabulous dinner, which I told her needs to go into Mattie's recipe book that Liza May is assembling. It was a pleasure to see Mattie eating broccoli and sitting at a table and conversing. It was a special treat for us to eat in a dining room, with a family (Tyler, Charlotte's brother was home too, and as many of you know Tyler has put extraordinary effort into Mattie fundraising activities), and having a home cooked meal. It made us feel normal. After dinner, we all played a card game called, Apples to Apples. I heard of this game from my niece, but never actually played it. We all had a good time, and Mattie and Charlotte played together as a team against the rest of us. Mattie had a good time climbing up and down Charlotte's staircase. I guess when there is a will there is a way. Mattie crawled up and down on his rump, and you should have seen him moving. Charlotte was a good motivator. At around 8:30pm, Mattie just announced he was tired and wanted to go home, but he told Ellen that he would play with Charlotte anytime. I could tell that Mattie had a good time at Charlotte's tonight!

When we got home, we checked in with Peter. He was enjoying his break watching the Super Bowl. Peter rarely takes any personal time, so I was thrilled that JP invited Peter out and that Peter actually went. For all our Pittsburgh Steeler fans, it must have been a great night for you! I knew when the Super Bowl was over tonight, because my neighbors next door were screaming with excitement!

Tonight, Mattie and I played three rounds of the game, Sorry. He was thrilled that he beat me three times. I am not even trying to lose, he just seems to win! When Peter came back tonight, we both changed Mattie's central line dressing, and cleaned him up for his hospital admission tomorrow. I noticed while trying to flush his lines that one is completely blocked. So we have to address this issue tomorrow at the hospital. I always get nervous when one of these crucial lines gets blocked up, since this is how Mattie's medicines and chemos are administered.

Mattie opened up a special package he received in the mail yesterday. The package was from Mrs. Fischer. Mrs. Fischer is my dear friend Karen's mom. When I met Karen I was only 11, and so therefore, her mom will always be Mrs. Fischer to me. She sent Mattie an INCREDIBLE book. I have never seen a book like it. It is a pop up book with the title, Birdscapes. Bascially each page has a different bird habitat, the birds pop up, and you can also hear the calls that each of the birds make. It is a wonderful book for Mattie because he simply loves looking and hearing the birds. This is a book we will really cherish!

As I sign off for the evening, we are preparing to go back to the hospital tomorrow. This routine is getting wearing! Mattie will be in the hospital monday through friday, because Ifosfamide and Etoposide are administered five days in a row, and of course we still need MTP-PE on monday and thursday. Wish us luck!