Thursday, August 28, 2008

Thursday, August 28, 2008

This morning we checked into the Lombardi Clinic at around 10:30am. At which point Mattie went through his usual routine. He got his vitals checked (blood pressure, temperature, weight and height check) and then got hooked up to an IV sodium bicarbonate drip for the next several hours in preparation for the administration of Methotrexate tonight (the third chemo drug that he is receiving in this treatment regimen). Literally we were in the clinic from 10:30am until 3:30pm, so the question you are probably asking yourself is how in the world did we keep an active six year old entertained for five hours while in the clinic?! Well I can answer that in two words... Jenny and Jessie. They are fabulous art therapists and they know how to energize Mattie. Mattie was so engaged in crafts and activities that he did not even stop for lunch! We took three pictures today in the clinic. Two of the pictures show Mattie's Scooby Doo ceiling tile that he painted. The tile is dry and now up in the clinic for others to enjoy. The third picture shows Mattie hard at work at an art project. Mattie has been able to learn to work with clay and he has created some wonderful models of things (below you will see his version of a drive in movie theatre) that have been fired in a kiln, and today he got to glaze his works. Peter is enjoying this process as well, since this is an art form that he always excelled at. Needless to say all the art projects are therapeutic for the whole family.

Dr. Toretsky was on vacation last week. He went on a musical retreat to Canada with his son. Based on what I have experienced over the past couple of weeks with Mattie, I can completely understand the need to retreat and escape away from the reality of the oncology world. Seems to me, one needs to do this to keep one's mental sanity. In any case, we caught up with Dr. Toretsky today and told him about Mattie's episode of neutropenia over the weekend. But in all reality, we are all thrilled with how well Mattie is handling this. Mattie is a trooper, and his strong willed personality may actually turn out to be a real positive in this situation! Dr. Toretsky discussed what kinds of things to expect with Methotrexate and spent a significant amount of time answering our questions.

At around 3:30pm, we headed up to the PICU. We were greeted by Dr. Jung, one of the wonderful pediatric residents, as well as Tricia and Kathleen (Mattie's nurses). Seconds later, Linda was on the scene and Mattie was very excited to see his buddy. Linda rearranged our room for us and helped us ease back into being inpatient. Mattie was in good spirits and entertained all the ladies with his trick spider and some of his creations from the clinic today. Everyone was laughing with him, and they could all see that he was a live wire today. Again, the beauty of being six! To be able to live and appreciate the moment is a wonderful gift Mattie is teaching me. Somehow we lose this ability as adults. We are too wrapped up in what is coming next or better yet how to prepare for what is coming next. With all this worrying it is hard to enjoy the moment, or even sometimes observe what is happening in the moment.

I had the opportunity to talk with both of our social workers today, Denise and Mary. I found both conversations very helpful, and I feel they understand the pressures Peter and I are up against. In addition to these conversations, Dr. Toretsky introduced me to Maria. Maria is the mom of Teresa. Teresa is 7 and is an osteosarcoma survivor. Teresa came to play with Mattie in his room, while Maria and I got a chance to talk and share our stories. Teresa gave me a lot to think about, but I found her very supportive and sensitive to just how unique Mattie's case is. On many levels is it hard to be so unique (to have bone cancer at such a young age and in four different locations). I always knew Mattie was special, but really, must he be this special?! I am not sure what God's plan is for Mattie or for us, but I just hope he gives us the strength and energy to see it through.

This evening, Mike Doane (a RCC Dad) came to visit us and brought us a special treat. Crab cakes from Clyde's. What a lovely and tasty surprise. Who could ever turn down a Clyde's crab cake. Needless to say they are all gone, and Mattie loved his Ben and Jerry's Vanilla Shake. I want to thank the Doane family for all their generosity with dinner, gifts, and support. In addition, Mattie received several lovely e-mails today. Thanks Kim and Elizabeth for the great e-cards, and Charlotte for the wonderful picture of you and your kite on the beach. There is something very freeing to see this picture of a kite floating and flying in the breeze. It brought a smile to all our faces. For those of you who do not know, Mattie is very fond of Charlotte. Charlotte was his first kindergarten buddy and for many months Mattie would report to me that Charlotte was his girlfriend and he was going to marry her. In fact, when he won a ring at the dentist's office for a good cleaning, he proudly gave it to Charlotte!

Mattie is blessed to have such devoted e-mail pen pals too. Thank you Allen, Kazu, Charlotte, and Ms. Pollak (Mattie's SSSAS Art Teacher, and a good soul who is devoted to keeping Mattie stimulated and engaged. Debbie is planning a wonderful and meaningful activity for Mattie next week... the design of a prayer feather) for your daily e-mails. Mattie also received a lovely e-mail and great pictures from his cousin Nat today too!

As for this evening, Mattie began Methotrexate at 8:15pm. Methotrexate is a powerful drug that disrupts the pathway of how cancer cells feed themselves, specifically by removing hydrogen from the enzyme that allows them to feed and grow. Methotrexate will be infused over a four hour period. Then 24 hours later, Mattie will be given Leucovorin, which is the rescue drug that replaces the missing hydrogens for the regular cells. We will then monitor Mattie's urine every 4 hours and perform blood tests at 24, 42, 48, 72 and 96 hours post-administration to ensure his kidneys are not failing, that his liver is not being damaged, and that the Methotrexate is being eliminated from his body. Mattie vomited approximately 90 minutes after the drug administration, so it looks like we're in for another nausea/vomit ordeal over the next few days. The Zofran given 30 minutes in advance apparently did not help so Mattie is now on Ativan, which makes him act tipsy and spacey, but hopefully this will cut down on the nausea and vomiting.

Tomorrow, Peter and I will meet with Ann, Alison, and Carrie to discuss fundraising ideas. We are also researching the best legal entity to create for Mattie (i.e. a foundation, 501(C)3, etc.) so that we have the proper vehicle in place to benefit Mattie and/or research for osteosarcoma (thanks to Adam K. and Alison for your help in this effort). I know there are many people around the country who want to contribute to a Mattie fund, so we plan to get something in place quickly. As I close tonight, I just wanted to reflect on the fact that Peter spoke with his buddy John today, a cancer survivor, and I spoke with my friend today, Beth, who is also a cancer survivor. When Peter and I reflect on our friends who have survived some of the worst odds, it gives us hope and deep respect for the power of hope, love, and faith. I thank all of you for your unending support and friendship.