Tuesday, September 9, 2008

Tuesday, September 9, 2008

Peter and I had an appointment today with Nita Siebel. Nita is a well known oncologist, specializing in osteosarcoma. She is the former director of the oncology program at Children's Hospital, but is now at NIH. Because of Mattie's hard weekend, and intense leg pains, I did not feel comfortable leaving the Georgetown Campus today, so only Peter went to the appointment. Peter came back several hours later and briefed me about the very informative and positive meeting he had with Nita. It was wonderful to hear Nita's perspective and we appreciate her willingness to share resources and information. Peter left her office today with contact names and numbers, and the confirmation that we are doing all the right things treatment wise at the moment. Nita also very generously shared her cell phone number with us and is willing to talk with us anytime about Mattie's case.

Mattie wasn't released from the hospital today until around 4pm. The doctors wanted to run another blood test on Mattie to confirm that his methotrexate level was indeed falling to 0.1 or below. So you may ask, how did he spend his long day at the hospital? Well never fear, when Linda, Jenny, and Jessie are around, the answer is very simple. He had a great time. In addition, Ann came to the hospital today and spent several hours with Mattie, while I got some fresh air(okay well maybe humid, moist air - but even that was a welcomed change) today. Ann brought Mattie two vanilla sprinkled dunkin donuts. His all time favorites, and he actually ate both of them! Ann played with Mattie for hours, and when I finally got back in the room, he was totally engaged and happy, a completely different child than what we saw over the weekend. Clearly Mattie made a good friend today, thanks Ann, and thanks for the tasty banana chocolate chip bread!

We met up with Catherine Silver today at the hospital. Catherine is a nurse and she is also assigned to manage Mattie's case. While I was out getting some air, Catherine administered a pediatric quality of life survey to Mattie. Ann was present in the room while Catherine was doing this, and they both told me how funny and entertaining Mattie was while completing the questions. Basically from Mattie's perspective, he doesn't feel like his disease is impacting his physical or emotional self in any detrimental way. In addition, there were some questions that asked him about his social life and if other children treated him differently now or if he had a hard time making friends. With that Catherine said, Mattie laughed. He said, "everyone loves me, I am cute." Catherine said that Mattie said this in the most innocent but truthful way. Catherine showed me Mattie's survey responses, and in all reality I am so happy she administered this survey to him when I wasn't in the room. I wouldn't want to bias his responses. However, I must say I was delighted to see the results. I realize he could have skewed his own results because he was in a good mood when he completed the survey, but I don't think so. I think for the most part, Mattie is very even keeled and is handling this all very well considering.

Later on in the afternoon, Mattie had a visit from Whitney, one of Linda's child life specialist interns. Whitney is also a special young lady, who seems to know how to engage Mattie. We also had the opportunity to get to know, Mary, a new hospital volunteer. Mary wants to become a doctor one day, but she is working in Georgetown's pediatric unit entertaining children to learn how to effectively work with them and their families. I was truly impressed by her as well. At around 3pm today, Dr. Gonzales came into our room beaming and she shared the good news that Mattie could go home. She talked with us for a while, and examined Mattie's legs. Mattie did not break anything, nor are his knees infected. But he does have BIG scabs on his knees from when he fell last week at home. Dr. Gonzales told us that the scabs looked funny and are probably extra sensitive because methotrexate can impact the skin and its ability to heal itself. So this explained a lot, and we realize that Mattie's limping is a direct cause of the scabs on his knees. Dr. Gonzales was truly happy that we could leave and she helped normalized the five week process we just survived and told us that we have been through an awful lot and we are handling it beautifully. She really loves observing Mattie, and she especially loves his art projects.

When we got home, we had a lot of things to unpack and organize. Mattie received 11 packages in the mail today, which thoroughly made his day. Thank you all for your generosity! Mattie had a visit from his puppy pal, JJ as well, and then at 7pm, in walked Mattie's grandparents from Los Angeles. Mattie was thrilled to see Grammie and Pop Pop, and spent the next hour or so playing and chatting. We had dinner together and then started planning our day together for tomorrow. Peter and I are thrilled to have some fresh blood living with us.

We received two lovely e-mails today. Ann sent us a flyer promoting the carwash fundraiser being organized for Mattie on September 20, from 8am to 1pm at the Fairlington United Methodist Church (3900 King Street, Alexandria, VA). I will have to consult with Peter about how to attach the flyer to this blog. So stay tuned. For those of you helping to organize this event and attend this event, thank you in advance.

I also received an e-mail today from Liza May, a SSSAS upper school mom. Though we have never met, she sent a very supportive and empathetic e-mail. She let me know that the seniors at SSSAS are coming up with their own ideas about how to support Mattie. I was truly touched by the level of effort the seniors are making, and I can say in September of 2007, we did not only join a school, but we found a solid and nurturing community. Thank you SSSAS seniors!

Tonight, we had a visit from Carolyn Coker. Carolyn is a friend of ours from RCC. Thank you so much for a delicious dinner, and the very tasty cupcakes. Mattie loved the lasagna. Mattie also loved the the 3-D dragon and knight kit as well as the Hello Wally Book (as any good Bostonian would know, Wally, is the name of the Green Monster at Fenway Park in Boston).

On the electronic front, thank you Grammie (for the animal stories), Barbsie (for the wonderful knock knock jokes!), Abigail (we loved your art work!), and Maria for your e-mails, as well as Kim, Susan, and Karen for your e-cards. We enjoy reading and hearing all of Mattie's e-mails each day. Mattie received an e-mail today from Paul Breakman. Paul is a friend of John Bonds (a friend of Peter's who is pictured on a bicycle at the top left hand side of our blog). Paul joined John on the recent Lance Armstrong Livestrong bike ride in Philadelphia. Paul also dedicated his ride to Mattie. Thank you Paul for your incredible support!

I also want to thank Richie Orlando and Kristin Goodwin for their incredible generosity. They do not know Mattie personally, but both sent Mattie incredible military patches, a beautiful belt buckle from the USS Enterprise (upon which Richie's son is stationed), and an autographed and inscribed picture of Lt. Col. Kristin "Duchess" Goodwin in front of a B2 bomber. I end tonight with part of Kristin's inscription to Mattie, "Never give up on your dreams." How well said, and I would imagine you could guess what our dream would be.