Tuesday, December 23, 2008

Tuesday, December 23, 2008

Quote of the day: "Stand up to your obstacles and do something about them. You will find that they haven't half the strength you think they have." ~ Norman Vincent Peale

Mattie has been a real trooper. He dealt with doxorubicin and cisplatin beautifully last night and even this morning experienced no nausea. This of course is spectacular, but it is unnerving because it is such a different experience from the first two times these drugs were administered. The first two times, Mattie was very sick and did non stop vomiting. This was before we found Kytril, a very efficient anti-emetic. Now we have Kytril on board, so perhaps this explains the major difference. Mattie got up this morning, but was too tired to get out of bed. He wanted me next to him, so I jumped into bed and rubbed his head and face and he fell back to sleep, and so did I. What you need to understand though is while Mattie is getting this chemo he is also getting something called mannitol. Mannitol in a way is like a diuretic, and literally Mattie has to go to the bathroom almost on the hour. This would be fine during the daytime hours, but not so fine at night while you are trying to sleep. In the past Mattie would not get up in time, and we would land up having to change him and the bed each time he had an accident. Last night there were no accidents. Tricia, Mattie's nurse, did remind me though not to discard Mattie's urine without wearing gloves, because the chemo is excreted in the urine. So I heeded her advice and each time he voided I used gloves. However, it did not matter, the chemo went right through the glove and today I have a small blister on my finger. So now I am moving to wearing double gloves, but if these chemo drugs are affecting my skin this way, God only knows what it does to Mattie's body?!

While we were resting this morning, my friend Susan S. stopped by. She brought me a hot chocolate and a chocolate muffin. You just can't have enough chocolate, any good counselor (as she is) would know this! Susan also brought Mattie some wonderful gifts such as activity books, a snowflake picture frame kit, many wonderful stories to read, and a game board called, Zooreka. Mattie and I had a good time playing this game together. The goal of the game is to build your own zoo, and taught some clever trading and bartering skills. After we played the game, Linda had invited Mattie to the floor's pizza holiday party. So when Mattie heard about pizza, he seemed motivated to get into his wheelchair and out of his room. Mattie ate four pieces of pizza, which was incredible. He practically did not come up for air. He then moved to some of the craft activites. While doing crafts, we had a visit from Ellen. Ellen brought me a wonderful lunch and she brought Mattie a shake and a happy meal as well. I appreciate you giving Mattie the game Clue and a new movie called, "Everyone's Hero." We look forward to seeing it with him! I personally appreciate the dreamtime neck wrap that I can put into the microwave and work out some of the amazing tension both Peter and I hold in our necks. That was a very thoughtful gift! But Ellen really saved the day for me. I have developed huge canker sores in my mouth. But I never had sores like this before. They are so bad and painful, the left side of my face is swollen, I can bearly eat, and talking is painful. I was going to wait for Peter to bring me some over the counter medication after work, but Ellen took it upon herself to get them immediately for me. I really appreciate this thoughtfulness and I am hoping it helps me feel better soon.

In the midst of trying to have lunch, Mattie demanded a lot of attention as he was struggling with creating a foam santa house. I don't know if you have ever worked with a foam structure, but it is like working with jello. It isn't easy. Both Ellen and I were trying to work with him, but then I suggested that we use hot glue on this structure otherwise it wouldn't stay in place. So Linda jumped in and worked with Mattie for a while, until Dr. Matt Biel (psychiatrist) came up to work with Mattie. Matt and Mattie, played for a while in the hallway and then eventually they migrated to Mattie's room. Mattie is building a rapport with Matt, and I am very pleased to see Matt trying to relate to Mattie and play with him on his level. I think this is very therapeutic, and Mattie is in a hospital surrounded by women, and I think positive role models like Jey and Matt are very important for Mattie to see on a regular basis! After Mattie's appointment with Matt, Anna arrived. Today Mattie and Anna had a long physical therapy session. Mattie did try to walk twice, but he complained that his feet were bothering him. It is hard to know whether this was his excuse or the reality of the situation, since in the past chemo has affected the skin on his feet. I was so pleased to see Mattie and Anna interacting so well.

Mattie also had visits from Jey, Jessie, and Jenny. All his favorite people. They all came to wish him a Merry Christmas and Jey even gave Mattie one of his flashlights. Mattie was very pleased by this acquisition. Jenny has been working on transforming a large cardboard box into a Christmas house. This project is looking good and has a realistic looking TILE fireplace inside of the structure. After all Santa needs a way to enter this house! If you recall, one of Mattie's clay pieces that he designed with Jenny and Jessie is on display in a gallery in the District of Columbia. This gallery features the artwork of other local cancer patients. Though I would like to see Mattie's work in person, it most likely isn't going to happen. But Brandon and his family stopped by today. Though Brandon (Mattie's big buddy) isn't undergoing chemo anymore, he still needs scans and check ups. Today was a scan day for Brandon. Mattie got to meet Brandon's sister, Ashley, who is home from college. The wonderful treat though besides seeing this lovely family, was that Brandon's dad took a picture of Mattie's art work which was on display in the gallery. He sent me the picture, so that I wouldn't miss out on this experience. Thank you Jim! Below you will see Mattie's picture. It is a butterfly holding a large acorn, and Mattie described this art for the therapists by saying, "This little butterfly is strong and can carry this acorn on its back." Mattie is my little butterfly for sure!

While Mattie was working with Anna, Ashley (as many of you recall Ashley led the prayer service for Mattie a few weeks ago) came to visit and she brought her son, Sam, with her. Mattie and Sam went to RCC together. Ashley brought several very special gifts for Mattie, all from Bob #2's, Aunt Alberta. Mattie is now the proud recipient of a Boston Red Sox blanket and a beautifully framed official MLB, Dustin Pedroia photo (Peter really liked this one!). In addition, Aunt Alberta is very artistic and painted two beautiful Christmas ornaments for Mattie. One ornament acknowledged the years the Boston Red Sox won the world series and the other ornament had Mattie's name on the front surrounded by holly. I took pictures of these creations to share with you. I want to thank the Glennon family for yet again supporting us and we are touched that these gifts came all the way from Massachusetts. Thank you Mema and Pipa for the lovely card explaining the gifts, it meant a lot.

In the midst of a given day here, Mattie can accumulate a lot of gifts. The gifts are coming from
very generous families who donate Christmas gifts to the children in the hospital. Mattie also received three lovely Christmas stockings from Linda. Mattie liked them so much, he put them on his feet. I just had to capture this with a picture. When I snapped this picture, you have to understand Mattie had a full day, and was beginning to unwind and watch the movie, Wall-E.

This evening we had a visit from the Holm family. Evelyn was one of the first mom's I met at SSSAS, and little did I know that her husband was Coach Dave. They are both such wonderful, sincere, caring, and supportive people. They delivered us a marvelous dinner, and the brownies are incredible. Those of you who read the blog must think I am physically turning into a piece of chocolate. Maybe so, but what a way to go. In addition, to a lovely visit and dinner, they also gave Mattie a gift right up his alley. In line with the bug theme, Dave got Mattie a remote controlled tarantula. You got to see a picture of this thing to appreciate it. It is life size and looks very real. Mattie has scared four nurses and Linda today with it. It was the perfect gift for Mattie, and he became very energized by the whole thing. I also want to thank Evelyn's mom for the meaningful book and healing tapes by Bill Johnson. It was very thoughtful of your mom to think of us and to be praying for Mattie.

As we head into Christmas Eve, I sense a major push to try to get Mattie home. Since Mattie handled chemo well today, the thinking is if he does well tonight and into tomorrow morning, Mattie will be discharged from the hospital. The hospital staff is trying to coordinate the delivery of medications for Mattie to our home today, because they are afraid that if they did not do it today, Mattie would not get it in time if he does go home tomorrow. Certainly going home would be nice, but I also have to tell you packing up again, after we just got here is a total killer. In addition, Mattie will most likely become neutropenic next week and land up right back in the hospital. This is a torture beyond belief on so many levels. Yes I realize it is the Christmas season, tomorrow is Christmas Eve and the next day is Christmas, but to me, it feels like another day in this never ending journey. In addition, we have learned that Mattie's follow up CT scan to monitor the lesions in his lungs is scheduled for January 8th at 10am. This date weighs heavily on my mind. Living life from one scan to the next, one chemo drug to the next, and from one doctor to the next is not only frustrating but it further emphasizes the powerlessness we feel.