Friday, December 19, 2008

Friday, December 19, 2008

Quote of the day: Thank you Anne S. and Karen for introducing me to Sean Swarner. Anne went to college with Sean, who sounds like a real inspiration for all of us, and certainly for the cancer community! To learn more about this remarkable man who is a two time cancer survivor, you can visit his website: http://www.seanswarner.com/.

"The human body can survive for about 30 days without food. The human condition can sustain itself for about three days without water, but no human alive can survive for more than thirty seconds without HOPE, because without hope we truly have nothing." ~ Sean Swarner (cancer surviver, completed the ironman 2008 championship, co-founder of the cancerclimber association)


It is hard to believe it is friday, actually it is hard to tell what day of the week it is in general. I guess that is not hard to imagine since each day is just like the next. Especially when you are a full time caregiver. Mattie woke up after 10am today. Dan, Mattie's in-home physical therapist, visited Mattie today at 10:30am. By the time Dan arrived, Mattie was dressed, out of bed, and walking around. Dan wanted to know if this was the same child he saw a few weeks ago. Dan observed Mattie walking, or shuffling along, and even saw Mattie climb up a few steps. However, Mattie started to shut down when Dan tried to show Mattie what exercises he should be doing. Dan even offered Mattie baseball cards as a reward for performing and complying with a task, but that did not interest Mattie. That really does not surprise me because Mattie has a strong willed personality and reward systems never worked for Mattie in the past. However, I told Mattie I wanted to hear what Dan said. Dan even wrote down a detailed regimen of exercises for Mattie. The only way Mattie would perform the exercises was if Dan left. So they made an agreement, Dan would leave, if Mattie did the exercises 15 minutes after Dan left. So I set a timer to make sure Mattie stuck to that deal.

At 11:30am, Mattie's paternal grandparents came over to spend the day with Mattie. Peter's parents are visiting from Boston and will be with us until monday. Mattie even performed his exercises with his grandparents. They did the exercises together! Dan would have been thrilled, because he was impacting three people today, not just Mattie. Mattie had fresh blood today, meaning two family members who were going to solely focus and play with him. He was loving it! Mattie had a good time opening up the Christmas presents that his grandparents brought him. From what I could see, Mattie built a wooden car model, built legos, did puzzles, read books, played on the piano (since Peter's mom is a music teacher by training), created an imaginary story about a dragon, and even built a gingerbread train. Mattie enjoyed today, and his grandparents commented on how lively and in good spirits Mattie is considering all that he is up against. For the most part, even during such challenging times, Mattie is a happy child. Peter's dad said to me that when he was talking with Mattie today, there were times he felt he was talking to a 15 year old. I think cancer ages not only the body but the mind.

While Mattie was playing with his grandparents, I went to visit Christine (my friend and SSSAS mom). Christine has ordered all the gifts I plan on giving out to all the Georgetown staff, and I wanted to pick up a few of the gifts today and deliver them to the hospital to lighten my delivery load for next week. Christine has done a great job coordinating all these gifts. I was determined to get to the hospital today because it was Lesley and Whitney's last day of their childlife internship. I am so happy I got to see them and thank them in person before they left. They are remarkable young ladies, and they will deeply be missed. I told them we have only known them for four months, but they have had a profound impact on our lives. Whitney's mom also gave me a gift. She gave me a beautiful silk scarf and a lovely card. That was a very thoughtful and generous gift, and it is amazing the wonderful people I have had the opportunity to get to know thanks to Mattie. We say good-bye to Lesley and Whitney and we know whatever hospital actually hires them, will be a lucky hospital.

After my gift delivery to the hospital, I headed back home, but instead of going home, I went to my parent's apartment. It was a great escape today. No noise and it was very peaceful. I even had the opportunity to go through the five large boxes that Christine and Ellen packed up for me of Mattie's toys that need to be donated. These boxes are right now being stored in my parents apartment, but their lease ends on December 31, so I want to make sure I deal with these boxes in a timely manner. Today was a rather freeing day.

We want to thank the Bentsen family for a wonderful pizza dinner tonight. We have never tried the Pizza co. but the pizza comes assembled on freshly made dough, and all you have to do is bake it. Mattie also loved the snowmen and reindeer hinged boxes. He especially loved the miniature pieces inside of the boxes, such as the tiny snowflake and Christmas tree. We also appreciate the owl (the mascot from your daughter's college). Congratulations to her for getting admitted to a great college. It was nice that we could all eat together as a family tonight, and it was wonderful to see Mattie eat pizza as well!

After dinner, Mattie wanted to open up another gift. So I went to our stake of gifts. I have a stack thanks to all of you who generously keep sending Mattie things. These gifts come in very handly and help me get him to do certain tasks in a day. Thank you! Tonight, Mattie opened up a gift from Goli and John (our neighbors who moved to NYC). Goli and John sent Mattie two wonderful pop pop books. One book was of structures and the other was of bugs. Mattie loved the bug book, and he couldn't wait to pop these bugs into my face. They are great books and we will enjoy looking at them often!

As we head into saturday, what weighs on my mind is that we are scheduled to go back to the hospital on sunday night. That certainly doesn't give us enough time at home. The nurses have encouraged me to have Mattie admitted the night before a chemo administration so he can get hydrated with fluids, and then begin chemo the next morning. While on chemo Mattie may get sick and also have to run to the bathroom every 90 minutes because of the intense hydration. Their thinking, which is correct, is Mattie doesn't really sleep at night with a chemo administration, so why not give it to him during the day while he is up anyway. In theory it would be nice if chemo was administered at night, and he would sleep through the side effects. But that never happens. So the nurses suggested I consider changing our admission time. I would really like to come in the night before, but I also want as much time at home as possible, because we will have another tough two weeks. I don't know if I can handle this 24/7 hospital life for the next two weeks without more of a break.

As I end the blog tonight, and mind you it is 12:10am, and Mattie is WIDE awake and watching the Bee movie (very cute movie), I want to thank all of you for reading the blog and staying connected. Sometimes I wonder what on earth keeps you all coming back, following the highs and lows with us, and not getting turned off to the unpleasant things I am reporting. I realize the answer is that you are all very special individuals who deeply care about a six year old boy. I guess what I want to say is that your unconditional support and steadfastness is deeply appreciated and we consider this the best Christmas gift you could ever give us.