Sunday, July 19, 2009

Sunday, July 19, 2009

Quote of the day: "How far you go in life depends on you being tender with the young, compassionate with the aged, sympathetic with the striving and tolerant of the weak and the strong. Because someday in life you will have been all of these." ~ George Washington Carver

Mattie was in an excited mood today, because he was getting to go to his favorite place with Peter. Can you guess where this is? If you guessed the Lego store at the mall, you would be correct! While Mattie and Peter were out, there was complete peace and quiet around me, which I can assure you is very welcomed. I spent the beginning part of the day resting, and then doing chores like laundry and grocery shopping.

While I was out shopping, Mattie and Peter started building a Lego train and track set in our living room. I am trying to come to peace with the fact that my home is turning into a Lego factory. Over the course of this last year, we have collected quite a number of Legos! These are the only things that consistently bring happiness to Mattie. He gets a certain amount of joy with the challenge of figuring out how the Lego bricks connect together, and of course he loves the sheer joy in building and creating something. Under normal circumstances, I would hope Mattie would diversify his interests, but at this point, I support whatever motivates him and brings him some happiness.

Later in the afternoon, we all headed to Ellen's house (Charlotte's mom). Ellen invited us over for dinner and a playdate with Charlotte. Ellen and Jeff served dinner outside on their deck, which was lovely. I embrace fresh air always! It was lovely to see Mattie reconnect with Charlotte. The irony is, Mattie held his own physically. He did a lot of moving around on his rump, but he also attempted to stand, and grab things like tables in order to walk around. To my amazement Mattie also maneuvered his way up and down steps on his rump. He showed no fear! Of course internally I was not comfortable with this, but I did not let it show. I know he needs a certain level of freedom back, and once I assessed he was moving around safely, I walked away, and let him be. But I can assure you walking away WASN'T easy for me.

Mattie and Charlotte played all sorts of imaginative play, and Mattie literally moved all over Charlotte's house, inside and outside. I guess when motivated, and with a friend, anything is possible. That is the key word, a friend. Throughout this year, Peter and I have learned the true meaning and value of friendship. We have a core group of friends that work hard to secure our happiness, even when all hell seems to be breaking out around us. It is always special to see Mattie and Charlotte connecting, because on some level it reminds me of "old times." When they were in kindergarten together. That is a time in his life I wish I could recapture for him and us, and when I see him laughing with Charlotte, for a moment I forget about our year of torture, and just reflect on their friendship.

At dinner time, Mattie wasn't very motivated to sit at the table with us, however, he became motivated when he had several eating competitions with Charlotte. Mattie and Charlotte competed to see who could eat all their flank steak, then corn on the cob, and finally a tomato. Well this race to the finish worked like a charm! Mattie ate more tonight than I have seen in a while. Mattie even encouraged Charlotte to eat a fresh tomato, which she isn't wild about. But because Mattie wanted to have a tomato eating contest, Charlotte was a good sport, and attempted eating a tomato. You can see in the picture on the left, Charlotte's reaction to eating a tomato. We were all laughing hysterically! In the picture on the right, Mattie and Charlotte were having a meat eating competition. However, after Mattie finished the meat on his plate, he was going to help Charlotte and eat hers too!

Left: The tomato eating competition. Clearly tomatoes are not one of Charlotte's favorites. But she was a good sport, and wanted to be part of the tomato eating race.

Right: Mattie attempting to eat Charlotte's meat.

I can't thank Ellen and Jeff enough for including us in another wonderful family meal. Charlotte's sister and brother were home for the summer, and it was nice to be able to catch up with them and hear how they are spending their summer. We feel very lucky to be able to connect with Charlotte's family, and can't thank them enough for their dedication, support, and care for our family.

As we head into Monday, Mattie has an x-ray scheduled of his right elbow at 2pm at the hospital. I think Dr. Synder and Anna believe that Mattie's bones by the elbow are growing at different rates, and therefore it may explain why things look askew by his elbow. However, I would like to hear this confirmed from Bob. It is hard enough to look at Mattie's body deformed with scars from surgery, but now factor into the equation that his bones are growing at different rates (because you need to understand that in almost all of his surgical sites, the growth plates in the bones were removed) and this further compounds my emotional reaction to this illness. It may be hard for you to understand why bones are growing at different rates. I know I had a hard time grasping this at first. So I will give you an example. In November, a tumor was removed from Mattie's left radius (one of the long bones that extends from the elbow to the wrist, the tumor was at the wrist). The tumor went through the growth plate, which regulates growth. So when the tumor was removed so was the growth plate. The other arm bone that extends from the elbow to the wrist and is parallel to the radius is the ulna. The ulna was unaffected by osteosarcoma, so it remained intact. Therefore the ulna has its growth plate. So the reason Mattie's wrist is twisted, is because the radius at the wrist isn't growing (no growth plate) and the ulna at the wrist is growing. Perhaps the same thing is happening in Mattie's right elbow. The x-ray will hopefully confirm what is going on, and a part of me is afraid to ask how this is corrected. I guess I know deep down the answer is through surgery, but really, how much can one child and family handle? For osteosarcoma families this is a rhetorical question, that has NO answer. After Mattie's x-ray tomorrow, he will have his physical therapy session with Anna.

I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Thank you Vicki for the lessons you continue to teach us. We have a tendency to close our eyes to the unpleasant and to think that this will not happen to us or to someone we love and cherish. But of course it will, we will all age and we will all need help and will that assistance be there if we don't step up and make it be what it should be. Something to think about and for anyone who can, to begin to make things better, one person at a time. The project that Mattie (and Peter and you) completed of the Taj Mahal is amazing. I've seen lots of pictures of it and this Lego project looks amazing. What a wonderful idea to turn it into a lesson about geography and history now that the building is completed. Mattie has completed so many Lego projects which you have been kind enough to share with us, that perhaps a "picture" book of projects would be a good way to remember them before you have to take them down."