Thursday, April 16, 2009

Thursday, April 16, 2009

Quote of the day: "However long the night, the dawn will break." ~ African Proverb


Typically when we are home, Thursdays are clinic days. But Mattie no longer receives MTP-PE on Thursdays. According to protocol, Mattie is now receiving MTP-PE only once a week, on Mondays. MTP-PE is administered for 36 weeks in total. The first 12 weeks, it is administered twice a week, and then for the remaining 24 weeks, Mattie receives it only once a week. I can't believe 12 weeks have already passed us by since Mattie started MTP-PE at Sloan Kettering in January!

Since Mattie and I had no plans today, I had high hopes to sleep in rather than get up early. However, my complex where we live had other plans for me. At 7:30am, Mattie's room was vibrating, and then the demolition began outside our balcony door. The drilling sound was beyond intense. It made me stressed out and it did not help my headache. I actually wanted to get out of bed and yell at a few people, but I figured who would care about my plight. Needless to say I can safely say there is NO peace for me whether I am home or in the hospital. Fortunately the sound did not seem to bother Mattie.

Mattie and I spent a great deal of time today playing with his Lego police headquarters set. I had to play the bad guys who were in jail, since Mattie prefers playing the good guys. Fine, the mood I was in, the bad guy role was perfect for me. I also administered GCSF (a white blood growth factor) through Mattie's central line. Mattie started the day off with a lot of energy, but as the day went on, both he and I were dwindling. In addition to being tired, that intense stomach pain I experienced a few weeks ago, came back in full force. So Mattie and I spent some time lying down in bed, while he watched a couple of Scooby Doo episodes.

This afternoon, I had a visit from my friend Joy. I met her at Resurrection Children's Center, Mattie's preschool. Joy made us a home cooked dinner tonight. Thank you Joy for the wonderful roasted chicken, potatoes, and asparagus. I loved Ari's favorite cake, thank you for sharing that with me! Mattie loved the maracas and the marionette that you brought back for him from your vacation in Mexico. It is so nice to be thought of while our friends are on vacation! I appreciated Joy's visit and the opportunity to have a few minutes of adult conversation!

Peter and I want to thank Alison McSlarrow (our Team Mattie Media and Communications Coordinator) for connecting us with Lauren Maddox (a SSSAS mom and a public affairs and communications professional) today. Peter had a wonderful lunch with Alison and Lauren, as they brain stormed an awareness outreach campaign for Mattie's walk and beyond. Peter told me how productive the lunch was, and we are so fortunate to have access to these talented women who are willing to share their time, talent, and expertise with us. Alison gave Peter a business card that she wanted him to pass along to me. When Peter gave it to me, and I read it, I laughed hysterically. What was on the business card? The words, "Stop Talking." Alison feels I should carry this card around with me and could use it in various contexts when someone is lecturing me or giving me unsolicited advice. I love it! Some of you may recall that in the Fall, Alison gave me a nail file. I still carry this file with me, because it was symbolic of my desire to break out of my own private Alcatraz.

Mattie's Osteosarcoma walk is scheduled for May 9, 2009. Our goals for this Walk are: 1) to raise funds for Mattie's fight against cancer, 2) to celebrate the amazing community who has helped us in extraordinary ways with this fight, and 3) to build outreach and raise awareness of Osteosarcoma. I am proud to announce the launching of Mattie's Osteosarcoma Walk ("March for a Mattie Miracle") website tonight. Peter did a great job designing this site, and we want to thank Liz Chiaramonte (walk chair), Christine Cooper, Ann Henshaw, and Alison McSlarrow for helping to populate the site's content. You can find the link to this website at the top left hand corner of this blog. However, the address is www.mattiemarch.blogspot.com. We spent a long time developing a logo for this March. We want to sincerely thank John Griswold, a SSSAS parent with his own comprehensive, direct mail, and marketing business (www.griswold-griswold.com), for designing Mattie's logo. John donated his services to Team Mattie, and I feel he did a stunning job capturing our hope theme, sentiment, and energy behind the walk. The logo is very meaningful. All the children on the logo were drawn by Mattie's friends, and the sun background is actually Mattie's "Mr. Sun" painting that he created with Debbie Pollak, his art teacher at SSSAS, in November 2008. I love how the sun was incorporated into the logo, and I also love how John embedded a head shot of Mattie in the logo. Mattie is featured right below the "Osteosarcoma" sign. Please check out the March website and feel free to circulate this March webpage. We thank you in advance for pre-registering for the walk on May 9.

As we head into Friday, we will be taking Mattie to the Lombardi Clinic for a check up and blood check. We have to determine that Mattie's white blood cell counts have risen enough to qualify for another round of chemo on Monday the 20th. While Mattie is in Clinic, Peter and I will be meeting with Dr. Nita Seibel. Nita is an oncologist who works at Children's Hospital in DC, as well as at NIH. Nita has graciously consulted with us on Mattie's case right from the beginning. We will be talking with her about the next steps for Mattie, especially if the lung lesions happen to be bone cancer that has metastasized to the lung. In addition, Peter and I will also try to meet with Dr. Chahine tomorrow at Georgetown. Dr. Chahine is the chief of pediatric surgery at Georgetown. Mattie will also have the opportunity to say good-bye to Meg, since Friday is her last day of her Childlife internship.

I would like to share two messages I received today. The first one is from my friend Mary. Mary wrote, "Yes, life has many unexpected turns. You are probably more aware of that than most people. Your blog reminds me how we have to make each day count no matter what. The way you are with Mattie, making life as happy as you can for him, is a good example of accepting what is and trying to make the best of it. Let's face it, you have way more right to complain than most of us and you try to stay positive for Mattie. You're a good example for us all. Nobody could stay positive all the time, under any circumstances (especially yours), but you do give it your best. Mattie has been blessed with wonderful, loving parents and you have given him a wonderful and happy life. That means so much. We never know how long or short our lives will be, but we do know when we've been really loved by our parents."

The second message is from my friend Charlie. Charlie wrote, "Wednesday’s blog was hard for me to read. I was pleased to see that Mattie continues to make strides in regaining his confidence in himself and his ability to make and retain relationships. It is wonderful that he is back to being comfortable without you right there within arm’s reach; he has come so far from where this started. As I read your comments about watching the children run and play and knowing that Mattie’s life right now is so far from this wonderful playful situation I empathize with your painful feelings. I have this mental picture of the child looking through the window at a party and wondering why she or he was not invited. Grief, sadness, perhaps even a little envy for what others have and take for granted; all of this is perfectly normal, you would not be a mother who wants the best for her child if you did not feel this way. Getting back to that situation will take time and patience but I believe it is achievable because of your determination and Mattie’s strength of will. And I know you will not be one of those who ever takes it for granted, knowing how precious and fragile it all is."


I end tonight's posting with a video my mom sent me. It is entitled, "Never Judge a Book by its Cover! Susan Boyle on Britain Got Talent." "Britain Got Talent" is like our American Idol. I personally love the song that Susan sang for the talent competition, but what impressed me about this clip is it spoke volumes about how our culture makes a quick evaluation of a person, and such assessments are usually biased and not accurate. Enjoy!

http://www.viralvideochart.com/dailymotion/susan_boyle_on_britain_got_talent?id=x8ymn0