New Year's Day

Thursday, January 1, 2009

Quote of the day:

"When the Japanese mend broken objects, they aggrandize the damage by filling the cracks with gold. They believe that when something's suffered damage and has a history it becomes more beautiful." ~ Barbara Bloom

I found this quote today, and it just spoke to me. I helps me put Mattie's illness and scars into perspective, and it also gives me hope as a parent who has seen some of the worst things performed on my child. I guess one can only wish that these experiences deepen not our external beauty, but instead provide internal growth and introspection, which can bring about a sense of peace and acceptance about the injustices in our world. In a way, when and if one reaches this true understanding, then and only then can one really appreciate beauty within one's self and the world around us.

How did we spend New Year's eve? Well Mattie was so wiped out from his special playdate that he requested to go to bed at 8pm. Totally unheard of! So Mattie wasn't up at midnight. While Mattie was sleeping, Peter and I decided to watch a movie. Peter knows I am an old movie fan, so I got to choose a holiday movie I wanted to see. I chose "Going my way." I am a big Bing Crosby fan, and the movie has one of my favorite songs in it, "Would you like to swing on a star...." A song you RARELY ever hear now a days, but this song brings a chuckle to Peter and I, because Jerry and Nancy (one of our favorite musician volunteers at the hospital) did a name that tune game with us on the first week Mattie was hospitalized in August. They did not think we would be able to guess the song. Not only did I guess the title, but I knew a lot of the words to the song. We all became instantaneous buddies after that name that tune game.

Mattie went over to Zachary's house today for a playdate. Zachary is a good buddy of Mattie's from RCC, his preschool. It was very thoughtful of Katie to invite Mattie over, and despite the fact that Mattie is probably becoming neutropenic, I feel as if I can't isolate Mattie from these social experiences. Peter took Mattie over today, as I am still congested and not feeling 100%. With Peter going back to work next week, and then the following week we are taking Mattie to Sloan Kettering in NYC, I have to pull it together. I can't afford to be sick much longer. Mattie spent about two hours today with Zachary. Mattie woke up in a funk and was in a bad mood, so I am happy that he at least got a change of pace with Zachary. Thanks Katie for making lunch for Peter and Mattie too, and for the soup!

While Peter and Mattie were out today, I checked e-mails. There are several families from around the country who have a child with osteosarcoma who have found us through Mattie's blog. I try to communicate with them on a regular basis. One family lives in Pennsylvania and their daughter was diagnosed almost on the same date as Mattie and the other family is in Nevada. The family in Nevada has a caringbridge website, which is like our blog, but I get e-mail alerts when this family's blog has been updated. So this morning I checked David's blog. David is a teen and has osteosarcoma (he had a tumor in his leg, and had tumors in his lungs as well). David is about a year ahead of his treatment in comparison to Mattie. So he has had his surgeries and all this chemo, but continues to have other challenges, like limb lengthening surgeries, and of course periodic CT scans to rule out other tumors. At the moment, David is recovering from limb lengthening surgery, which is painful, and his scans have revealed a possible spot in his foot. So you can imagine how this family is feeling. Today's blog submission that I read insensed me. David's mom has been maintaining the blog for over a year, and yet reading between the lines it appears that people have written to her privately making negative comments to her about what she writes. In particular I surmise that others told her that the blog should be about David, not her, and why does she write about herself and her family? Well when I read that today, I was livid. So much so, that I wrote back to Kristi (David's mom) several times because here is a woman who is doing everything right for her son, and yet she is being critiqued. I just couldn't get over it. Cancer is a family disease, and if one person has cancer, guess what? The rest of the family might as well be diagnosed, because we are all experiencing this illness in some way. None of my readers have ever asked me this, because I sense on some level, you all get how important this blog is to us, but writing about how this disease impacts Mattie, Peter, and myself is a wonderful emotional release. We are a family unit, it would be impossible to write about one of us, since what happens to one directly affects what happens to the other two. I am priviledged to have electronically met Kristi in Nevada and Carey in Pennsylvania. Not that misery likes company, but on many occasions we live life in parallel, and it is nice to know you are not alone in how you are experiencing osteosarcoma.

Mattie and I this afternoon watched the movie, Lilo and Stitch. I had never seen it before, but he was excited to introduce it to me. It was lovely to be able to sit in one place for over an hour and watch this movie with Mattie. Mattie also had a hungry moment where he practically ate an entire box of macaroni and cheese. As we moved into the evening, Honey provided us with a major feast (all the way from Hawaii!). What a way to bring in the New Year. The pastas, salads, and pizza were fabulous. I look forward to eating the chocolate cake too. I hope this is an indication of other sweet surprises headed our way in 2009, and I don't mean dessert surprises, I am hoping for medical ones! Thank you Alison for helping Honey deliver us a wonderful dinner tonight!

Mattie also opened up several gifts today that he received in the mail. We want to thank my cousin Maria for the DVDs of Reading Rainbow. We look forward to watching them together. I want to thank my dear friend, Lorraine, for the soothing sounds CDs. Mattie and I actually listened to them today while we were playing on the floor. It did take us away for a little while! JP, our neighbor, gave Mattie a HUGE calculator, and Mattie just loves it. He likes stumping me with the long numbers he comes up with, as if I wouldn't be able to read them on the screen. He makes me laugh! We want to thank Grandma and Granddad for the homemade gingerbread cookies you sent to Mattie. Mattie already ate one, and gingerbread for some reason agrees with his tummy. Mattie also loved the interactive Eve toy you sent him from the movie Wall-E.

I have been remiss for a few weeks and haven't consistently checked Mattie's e-mail account. But today we had the chance to look at e-mails and e-cards. On the electronic front, we want to thank Jacky, Grammie, Laurie, JJ (our resident Jack Russell Terrier), Emily W., Allen, Brian Boru (our feline friend), and Karen for the wonderful cards and e-mails.

As we head into friday, Mattie has a physical therapy appointment with Dan in the morning and then goes back to the Lombardi Clinic for another blood draw to assess his counts. Is it possible Mattie won't become neutropenic? A mom has got to dream, no? We have had a week at home so far, and it is a great and yet unsettling feeling. Because you wait and wait, for the next shoe to drop. As I sign off for the night, I hope you all started the New Year on a positive note, and know how much we value your support and friendship.