Saturday, January 10, 2009

Saturday, January 10. 2009

I received this message from my friend, Charlie today, "It is very clear from reading the blog that you and Pete have been successful beyond belief in helping Mattie achieve strength in his heart and mind to support the work that is being done on his body. His turn around in attitude tells you that it is all worth it, that even if you have some additional trips to the hospital ahead of you, that the wonderful, vibrant boy who is Mattie will make his reappearance once you are away from that environment. Have faith, we all continue to pray and to celebrate Mattie's victories!" This leads me to the Quote of the Day!

"Know, then, whatever cheerful and serene supports the mind supports the body too." ~John Armstrong

It is 10:30pm, and I have yet to pack us up for New York tomorrow. Great, no? I will get to it soon, and hopefully once I finish writing the blog, I will be inspired to pull it together. I have received several e-mails this week wishing us well on your trip to New York, but I have not made it clear to our readers why we are going. So I wanted to take this opportunity and explain. As many of you recall our last trip to Sloan Kettering was HORRIBLE! In fact, I never thought I would be heading back there again. As a recap, Sloan basically said that we should be doing pallative care for Mattie and not treat him aggressively, because no child with multifocal osteosarcoma has ever made it. Upbeat, no? The chief of surgery at Sloan said he wouldn't do limb salvaging surgery on Mattie, because he questionned the quality of life Mattie would have. I don't know, but some sort of life is better than none at all, no?! Again, thankfully we knew Bob Henshaw, who not only has talented hands, but a compassionate heart.

So what on earth could Sloan be offering us? Well there are ONLY two hospitals in the country that are approved to administer the experimental drug, MTP-PE, to osteosarcoma patients (particularly patients who are at high risk or who have lung metastases). The drug IS NOT chemotherapy, instead it is an immune system enhancer. The drug is administered twice a week, and only takes an hour to infuse. This is done for 12 weeks. There after it is administered once a week for an hour for 24 more weeks. The FDA only approves this drug to be initially administered at Sloan Kettering or MD Anderson in Texas. So geographically Sloan makes sense for us. Fortunately for us Georgetown applied for compassionate access, which means that all remaining dosages for Mattie after the initial one can be giving at Georgetown rather than Sloan. The clinical trial Mattie will be entering at Sloan is entitled, LIPOSOMAL MURAMYL TRIPEPTIDE PHOSPHATIDYL ETHANOLAMINE (L-MTP-PE): COMPASSIONATE ACCESS FOR HIGH-RISK OSTEOSARCOMA. L-MTP-PE stimulates the innate immune system, or the body's first line of defense, to kill tumor cells, and based on data from clinical studies, when used in combination with surgery and chemotherapy, L-MTP-PE reduces the risk of recurrence of osteosarcoma and improves long term survival. To learn more about MTP-PE, please visit this website: http://www.drugs.com/nda/l_mtp_pe_070723.html

It is our hope that the infusions go well, and Mattie doesn't have an adverse reaction to MTP-PE. There is a possibility he may develop fevers and rigors (chills), and if so, he may need to be hospitalized. We certainly hope the whole thing is uneventful. Will MTP-PE help Mattie? I have no idea. Frankly when I read the research literature on the drug, I was underwhelmed. But with that said, do I care what the statistics actually indicate? Or do I care if the drug could potentially benefit Mattie? After all, each patient responds differently, and we never want to look back and say, what if? What if we could have done something and did not. Considering there are NO known side effects to MTP-PE, we felt it was worth the trip. I hope this helps explain our thinking for returning to New York. We are fortunate to have support in New York. My lifetime friend, Karen is there, along with our former DC neighbors, John and Goli, and Mattie's babysitter, Emily. It will be wonderful to see them, despite my hesitation about Sloan Kettering.

As for today, Mattie had another GREAT day. Mattie was invited to Abigail Henshaw's birthday party (Abigail is Ann's youngest child)! He was very excited about this, because as you can imagine Mattie doesn't attend many parties. I was somewhat nervous about today. I was always a mother hen to begin with, but now that Mattie has cancer, I try to assess things ahead of time that may cause him distress. The only thing that eased my mind about today was I knew that Ann was running the party. But none the less, you just never know how Mattie is going to react with other kids, and my concern was would he get frustrated or upset because he couldn't do what the other kids could do. The resounding answer to this was NO! Mattie did great. He started out slow, but by the end, was full of life, shuffling around, and fit right in. He got into the spirit of the party and what was a sight to see was how the kids included Mattie. Talking about embracing differences. You all would have been impressed with these children. It seemed to me they all treated Mattie just like any other kid and of course Ann and all our RCC and SSSAS friends were right there encouraging Mattie and helping him integrate into the party.

Ann did a fabulous job today, and all her activities Mattie was able to participate in, and he really got into being a part of the Dolphin team. The party's theme, was "under the sea," and Mattie loved it. The kids sat on beach towels and worked very cooperatively. Frankly I am seeing we adults could learn a lot from the children around us. I tried to snap some pictures of all the fun, spirit, and energy at the party. Personally I think Ann worked so hard at putting activites together, that the kids were guarenteed fun.

This picture features the birthday girl, Abigail with Ann. You can see Mattie in the lower right hand corner, looking on and smiling!

I snapped a picture of Abigail with Ann and Bob as she was blowing out her candles. The cake was beautiful and creative. It was made of cupcakes frosted together. So it was very easy to plate this cake, it just meant grabbing a cupcake.

After the kids had cake, they were happy and quiet, and Ann read them a dolphin story. They were glued to the story, and I was able to capture this moment of calmness. Mattie loved the cupcake so much, he had blue frosting all over his mouth! What was particularly special about this event was the interaction between the RCC and SSSAS communities. Both of our worlds under one roof.

When the party came to an end, Mattie stayed a little later to see Abigail open up her presents. In addition, he continued to play his chasing game with Ann (the one that started at the hospital on thursday). But this time, the kids got into it as well. Tanja (a RCC and SSSAS mom and friend) was a great sport. She chased Mattie for quite some time, and she really hammed it up. Mattie loved it and he got a great work out. I snapped a picture of Mattie with his scary face trying to corner Tanja and Ann! Abigail and Mattie's friend, Sara Catherine were also joining in on the fun. Tanja's daughter, Katharina (a SSSAS student) also helped Mattie out tremendously at the party. Doing crafts with him, helping him collect candy from the pinata, and just being a big buddy. These are just highlights from today, but Katharina's kindness and that of all the children have left a lasting impression on me.

I could go on and on about today, but I better get my act together and pack. But I guess what I want to say is I know we are a part of the RCC and SSSAS communities, and today more than ever confirmed this. We may not be in school this year, but our presence and Mattie's spirit is there and I can see he is NOT forgotten. What a great gift for a parent to receive. I also thank Ann for inviting Mattie. Mattie is very fond of Abigail, and it is great they can continue their friendship. But what can I say about Ann? Here is a woman that loves my son almost as much as I do. I am learning a lot from my relationship with Ann, because I have deep respect for her and I feel that our cancer experiences have bonded us together forever in the heart and mind.

We want to thank the Peterson family for an absolutely fabulous homecooked dinner. The roasted chicken was outstanding, and Mattie ate a good portion of chicken, carrots, and potatoes tonight. Dinner was fabulous, and then Karen even baked us an apple/cranberry pie. Karen thank you for the magazines for the road and a special thank you for the chocolate supply for my trip to NY. My addiction thanks you. Mattie loved his gifts too. We have already had a sword fight, flew some planes, and will end the evening with the pop pop shark book. We also want to thank Elizabeth for the bionicles. These will keep Mattie very busy. Mattie received a wonderful shark's tooth today from Sylvie. She got this tooth on her trip to Florida, and she wanted to share it with Mattie. How special. We also want to thank Rev. Beales (chaplain at SSSAS' lower school) and Susan DeLaurentis (Director of Counseling at SSSAS) for their wonderful cards to Mattie!

I end tonight with another song for you. I learned that in good times and in bad times, you all are on my side. That is indeed what friends are for. You all enable us to keep smiling and keep shining! Enjoy Dionne Warwick's, "That's what friends are for."

http://www.youtube.com/watch?v=cv1oPvSg5G0&feature=related