Before I start telling you about our day, I can't help but reflect on what day today is, September 11. I will never forget where I was on September 11, 2001 (I was home preparing a lecture for my class, and also about two months pregnant with Mattie). I am sure you can relate to this feeling... of never forgetting that moment. This is a tragedy of massive proportion, and no matter what is going on in my life, I hope I will always take a moment to pause and reflect on the loss of all the innocent lives that were taken that day. I think just in general this day is filled with great sadness, and now add Mattie's situation to our mix, and well, this makes for a deadly combination.
We met today with Dr. Bob Henshaw, Mattie's surgeon. Bob had patients back to back today, but he made the time to see us because he wanted to check out Mattie's knees and also talk with us about the surgical plan. First and foremost, thank you Ann for playing with Mattie for over an hour while we met with Bob. Ann, has become a good buddy of Mattie's. Clearly our conversation with Bob wouldn't have been appropriate for Mattie. We talked with Bob about the pros and cons of metal expandable prothestics (repiphysis) versus natural bone grafts. Of course as a mom, the natural bone graft appeals to me, because a foreign object wouldn't be placed in Mattie's body (a bone would be taken from one part of the body, such as the leg, and used to replace the arm bone containing the tumor). Also if a bone graft is successful, Mattie would not need another surgery as he got into adulthood (because a natural bone graft would grow with Mattie, unlike an expandable child prosthetic which would need to be replaced with an adult prosthetic).
One comment continues to stick with me today from this meeting. As we were discussing the fact that Mattie would need two protheses (a child one and an adult one) for each of the three major tumor sites, Bob basically said that this was an ideal problem to have, because that would mean that Mattie had survived the cancer and lived into adulthood. This is resonating in my head all day today.... "that is if Mattie lives this long." Not that I did not realize that Mattie could potentially die, but hearing this from a renouned surgeon made it much more real and much more daunting. After the meeting, I cried and was deeply saddened, and I have carried this sadness throughout the day. I realize you can't think this way, but when you think about the amount of pain we are putting Mattie through, you expect there to be a cure.
After the meeting at Washington Hospital Center, we came home and had lunch and then had a visit from Joy Isaccson. Joy is a former RCC parent and a friend. Joy recently heard the news about Mattie and she was truly devastated. So much so, that she came to give me a hug and to tell me how concerned she is for us. She also brought Mattie a wonderful poster sized spiderman coloring set. Joy, it was great to see you today and to reconnect! Thank you for understanding.
We had a 2pm appointment at the Lombardi Center for Mattie's weekly check up with Dr. Toretsky. Jeff spent a great deal of time talking with me and my parents. He answered all of our questions, and could see that something wasn't right with me today. What could be right in the world, if you think your child could die? I appreciate Jeff's honesty, yet infectious optimism, which is very much needed in such a challenging time as this. Mattie had a good exam and got to play with his buddy, Jenny. Below are some pictures from Mattie's visit to the clinic.
Left: Grammie, Mattie, Jenny, and Vicki
The second bright spot I received today came by e-mail from the Caribbean Conservation Corportation (Roxana's sponsor). You can read the e-mail they sent Mattie, and I am following up with Rocio, because saving sea turtles and also educating others about osteosarcoma are both vital causes.
Hi Mattie,
My name is Rocio Johnson, and I work for Caribbean Conservation Corporation. I came across your blog today and saw that you adopted Roxana, one of the turtles competing in the Tour de Turtles marathon. I read your story and was very moved by your courage. I was hoping that you would help us write a story for our e-newsletter about you and your family. Not only do we want to show how Roxana is now a part of your family, but I would like to link the story to your blog. This way, new people can learn about ways they can help you. If you are interested, please get in touch with me as soon as you can. The story is scheduled to go out next Tuesday. I hope you are feeling better, and I want to wish you lots of luck. You are a brave little boy. Take care Mattie, and I hope to hear from you soon.
Best regards,
Rocio Johnson, Marketing and Communications Coordinator Caribbean Conservation Corporation 4424 NW 13th St. Suite B-11Gainesville, FL 32609 Phone: 352-373-6441Fax: 352-375-2449 rocio@cccturtle.orghttp://www.cccturtle.org/
The third bright spot came from The Peterson Family. They sent me a lovely "HOPE" shirt from St. Jude's. You can be assured, I will be wearing it (and my necklace) with pride and I truly hold dear its message. Thank you also for the wonderful St. Jude's shirt for Mattie. He is looking forward to coloring it himself.
The fourth bright spot came from an e-mail we received from Carolyn Schugar. Carolyn is a childhood friend of my sister-in-law, Lisa. Carolyn is a cub scout troop leader. Carolyn heard that Mattie was going to start cub scouts this year, but because of his illness, will not be participating in activities. Carolyn has invited Mattie to join her troop, and is willing to come work with him in any way possible. Thank you Carolyn for such a generous offer and for the wonderful tiger cub t-shirt.
On the electronic front, thank you Julie Nelson (one of my wonderful GW students and now a colleague) and Bunny for your lovely e-mails of support. Bunny we loved seeing a picture of Annie, your dog. Thank you Bob, Kim, Margaret, Lorraine, and Susan for your great e-cards. I leave you tonight with the e-card that Bob Weiman generated for Mattie today (see the link below). Mind you we saw this card after we came home from two doctor appointments. Somehow it was just the right medicine. I thank all of you for sharing this hard day with us and your willingness to stay with us through the long haul.
2 comments:
Thank you soo much for always updating despite the exhausting long days you have. I love the lessons from running my first marathon-I'm going to print it and put it in the office! I'm so glad the grandparents got here safely, can't wait to meet them! I'm going to be away all next week and plan on returning on Friday so I will not see you guys but Whitney is going to take great care of you! I've left the art box with some new goodies for Mattie in the office that Whitney knows to give to you!!! Have an awesome weekend!!!! GO TEAM MATTIE!
Hi!
My daughter Emma had a natural bone allograft in her femur. Although there have been some problems (mainly because of the some problems with allignment during the healing process) overall we think it was a very good solution. She walks well and without pain. She has enough range of motion to sit in cramped quarters and ride a bike. She "got on her feet" a lot faster then kids that had the prosthetics and in fact we had difficulty keeping her from trying to bear weight for the entire 12 weeks we were supposed to. It's been great so far. I should mention that she did not need a knee replacement and the surgeon was able to save both growth plates. Emma's operation was done by Dr. Conrad in Seattle.
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