Friday, April 24, 2009

Friday, April 24, 2009

Quote of the day: "We delight in the beauty of the butterfly, but rarely admit the changes it has gone through to achieve that beauty." ~ Maya Angelou

Mattie had quite a night on Thursday. He was very entertaining, talkative, and wanted to have fun. We played all sorts of games such as letter games, Candyland, and even Battleship until 1:30am. Mattie could have kept on playing, but enough was enough, and I needed to sleep. Mattie was up and down throughout the night because he had to go to the bathroom due to all the IV hydration he is given to flush Methotrexate from his system. Mattie's night nurse on Thursday was Erin. You may recall Mattie and Erin have a deal going in which he gives her hugs and in return he receives empty syringes. So they got along fine last night and he even allowed Erin to sign his cast! But poor Erin, when she had to take blood from Mattie at 5am, he wouldn't cooperate with her. He literally was sitting on his central line tubes and wouldn't move. So I got up and sat next to him, rubbed his head, and helped Erin fish around for the tubes in the pitch darkness of the room. We were both a sight!

Mattie's nurse today was Tricia. Tricia was one of our first nurses back in August to give Mattie chemo. She has been through a lot with us and has helped me in difficult times with Mattie. Tricia is a wonderful advocate and I have witnessed her speak up on our behalf many a time so that things would run smoother for Mattie. You don't forget those acts of kindness. Tricia started my day off with hot tea. She always spoils me this way, and after a night of very little sleep, hot tea was very needed. Mind you I went to bed at 1:30am, was up every two hours or so, and then finally got up at 6:40am. So I was a zombie today, on top of my already sleep deprived state. Tricia, like many of the other wonderful HEM/ONC nurses, told me today that she reads Mattie's blog and is humbled by it. She says that it makes her appreciate what she has and how lucky she and her family are to have their health. I think these HEM/ONC nurses live Mattie's illness and his treatment with me, but the blog may reveal my feelings about all of this in a way that may not be transparent otherwise. I was honored to hear that our nurses take the time to read Mattie's blog, and to me they are the unsung heros who help us each and every day. They look out for us, take excellent care of Mattie, and make an unbearable situation more tolerable.

Though I think Mattie's health situation is particularly devastating and painful to accept, one thing is for certain, when living in the PICU there is an inordinate amount of suffering that we witness and observe. For example, there is another family within the PICU whose teenager has cancer, a different type of cancer than Mattie's. The cancer has left this young fellow mostly blind, unable to hear, and wheelchair bound. When I think I am having a hard day, I think about the challenges this fellow faces and has to deal with each day, along with his family who cares for him religiously. I know the old saying that God only gives those as much as they can handle, but I am not sure sometimes. It seems to me, I am witnessing a lot of things that are almost too impossible to handle, manage, and accept.

At around 11:30am, Ann came to visit us. Mattie was still sleeping! In fact, he did not wake up until 1pm. It is hard to know if he was tired or perhaps not feeling well. Ann brought a box full of Mattie walk brochures and flyers. They look wonderful, and I have been distributing them around the hospital. Ann also brought me some wonderful breads and a great lunch that the Dunn family provided us. Thanks Kim for the delicious sandwiches and treats. Mattie loved the panda thermal cooler bag with all the Easter eggs inside! Ann stayed with Mattie for almost an hour while I went outside to get some fresh air. Thanks Ann for giving me a break, and for making the trip into the city, when you had a meeting in Alexandria, VA at 1pm.

When Mattie awoke, Meg had arrived. Meg worked with Mattie today for about three hours. During that time Mattie managed to see Anna (his PT), who measured his right leg for a dynasplint. I attached a link, in case you wanted to see what this knee extension device looks like. The thinking is once Mattie's cast comes off, he will need something to help him maintain his extension, so that the leg doesn't freeze back up on him which could require another cast. http://www.dynasplint.com/type/knee.php

While Mattie was with Meg, I actually left the PICU floor and sat outside to get some fresh air. It was a beautiful and warm day in Washington, DC. I sat in the sun, something I normally do not do, but being cooped up inside for months on end, I feel as if I look as sickly as Mattie. I had lunch outside and had an opportunity to have an uninterrupted phone conversation with Peter and then my mom.

When I arrived back in the PICU, Mattie did not seem like himself. He and Meg were in the childlife playroom, and he was pale and quiet. I noticed Mattie and Meg built a beautiful aquarium, including paper fish, which was made out of a cardboard box. But shortly there after, Mattie wanted to head back to his room. We learned that today is Meg's birthday! Even though Meg completed her internship and is headed home in about a week to graduate, she still came in to work today for us, on her birthday no less! Meg also gave Mattie and I these lovely handmade wrist weavings that her family received from their mission work in Africa. Mattie was thrilled to have one to wear, because apparently he has been admiring the one Meg wears. I look forward to having Meg around next week as well, when Mattie receives his second infusion of Methotrexate.

Once Meg left, I challenged Mattie to another game of Battleship. When I play with Mattie, I try to give him every advantage so that he can locate my ships. Mattie is not much of a board game fan, but it is my hope that having him experience the fun of playing, and allowing him to have the confidence to try things out, make mistakes, and yet feel the excitement of winning, that this will inspire him to continue to play. Once he understands the nature of the game, then I feel he can handle the competition between players better. While I was playing with Mattie, Tricia came in to give Mattie some medicine. One thing led to another, and Mattie recruited Tricia to be his Battleship assistant. Mattie had a really good time playing with Tricia, so much so that he asked her to come back to his room and play Candyland with us. Tricia was balancing other patients, but she did manage to play a round of Candyland with us, which made Mattie very happy. While he was waiting for Tricia to come in and play Candyland, Mattie was singing a mantra of "Tricia, Tricia, Tricia, Linda!' It was a riot, because I think he really believed if he sang it enough, somehow both of these ladies would magically appear to play Candyland with him. After the game was over, Tricia left the room. But minutes later Mattie called Tricia back to give her a hug. It was very sweet, and Mattie also allowed Tricia to sign his cast!

Meanwhile this afternoon, Peter had a meeting at the St. Stephen's and St. Agnes School's upper school campus (where Mattie's walk will be taking place). Peter met with Coach Dave, Ann, and Samantha (an assistant athletics director on campus). The meeting enabled Peter to see how things would be set up on the day of the walk. Peter felt very good about the meeting, and was so pleased and impressed with Coach Dave's ideas and plans for crowd management and for pacing of the events. Thanks Dave for all the incredible work you are doing to ensure the walk is a success!

When Peter arrived at the hospital this evening, he also had to play Candyland with Mattie. Like me, Peter lost miserably to Mattie. Mattie was happy to see Peter and they were looking forward to a boys night together!

We want to thank the Peterson family for a wonderful dinner tonight from Legal Seafood.
Karen hand delivered us many tasty treats (thanks Karen, it was wonderful to see you!), and literally Mattie ate like no tomorrow! He ate shrimp, sweet potatoes, and a roll with butter. It was truly impressive. I think he ate more tonight than what I have seen in a week! The power of Legal Seafood!

I was planning on staying late at the hospital in hopes of seeing Dr. Bob. Dr. Bob was planning on checking out Mattie's wrist and then rewedging Mattie's cast tonight. I wanted to hear Bob's perspective on the wrist, so I was desperately trying to maintain my energy to make it until he arrived. However, Bob called me and was still stuck at work, and headed to perform another operation at around 8pm. Bob wants to see Mattie on Saturday to check out the wrist on his left hand. Bob wanted to know why I hadn't mentioned the wrist to him before. Honestly I have no real answer for this other than, I thought perhaps this is what the wrist would look like after a bone graft. Or maybe deep down, I just can't handle one more problem, and was in denial. Not sure, but I guess not vocalizing my observations doesn't seem to be consistent with my usual style. Bob and I did talk about how this wrist situation could be straightened out (which relieved my fears), and I really look forward to hearing Bob's final verdict when he examines Mattie tomorrow. Mattie's cast rewedging procedure will most likely happen on Monday.

As we head into the weekend, Mattie will remain in the hospital as he clears Methotrexate. It is my hope that he will be discharged sometime on Monday, and then be given two days at home, before returning for the next round of Methotrexate on Wednesday or Thursday of next week. However, on Tuesday, my parents are flying back into town. They will be staying in DC for at least a month or longer, depending on the kind of support we will need for Mattie's third surgery.

I end tonight's posting with a message from my friend Charlie. Charlie wrote, "Usually as our children go from infant to child to adolescent, they and we face some challenges and obstacles but they are usually relatively minor, negotiated in days or sometimes weeks and forgotten in the long run. Instead of that, your family has had a series of changes and challenges that most of us will never have to deal with. Pain, multiple surgeries, tests, exhaustion and lots of sleepless nights all take their toll on your stamina and strength. Unfortunately, like the transition from crawler to butterfly the choices are to change or expire. You've made the challenging decision to go for it and now Mattie is going through this transformation; regaining many of his lost skills and gaining new ones. None of us would choose this way of doing it, it takes real courage to face it down everyday and keep going. Keep going, one who has not seen a caterpillar enter a cocoon and a butterfly emerge would ever believe that it could happen, but it does."