We want to thank Tyler Gehrs for organizing a successful music event fundraiser for Mattie and the community last night in Alexandria, VA. We know that several SSSAS high schoolers helped Tyler, and I want all these wonderful teens to know that our family is very grateful for their energy, their creativity, their ability to work effectively together, and their passion to help Mattie by raising funds for his treatment. Tyler goes to school in Delware, and he needed to get special permission to leave school during a week night to run this event. In addition, Tyler kept us posted throughout the night by sending us text messages. He is a special young man, and our family is very grateful for his willingness to share his talents and abilities to help our family. These teens raised around $1400 for Mattie's fund! Congratulations!
We packed up this morning and left New York City around 12:30pm. The hotel was just lovely and throughout our stay they could not do enough to help us. They made loading the car and transferring Mattie into it relatively simple. The drive itself went smoothly, and we were door to door in four and a half hours. We only hit traffic as we were approaching DC, otherwise, the roads were open and clear. It was delightful! Mattie watched movies in the car and it was pretty much an uneventful trip back. Of course getting acclimated to being home again took some doing. We had a lot to unpack and reorganize and we are slowly coming to terms with the fact that we will be in the hospital for the next three weeks coming up. According to Mattie's new protocol, he will be given methotrexate starting on monday, and then the following week (January 26) he will get his second dose of methotrexate. The week of February 2, Mattie will then get Ifosfamide and Etoposide (and you may recall that during his last dose of I and E, he became neutropenic in about four days and then remained in the hospital for 8 days recovering). We have had the luxury of being out of the hospital for three weeks now, and the thought of returning is far from pleasant. Where are we going to get the strength, courage, and energy to go back on this horrific schedule? I don't know, I don't have the answer to this question, but let me tell you it requires Peter and I to dig real deep on reserves we did not even know existed. But these are the things you do when you love someone. I feel like we are fighting a war, and we can't let up because the enemy doesn't take a vacation. In fact, if the enemy is left unchecked it comes back with a vengence!
This evening I received a call from Kathy at the Lombardi Clinic. Kathy is Mattie's nurse practitioner, and she called to let me know that Mattie is all set to receive his MTP-PE at Georgetown next week while being admitted for methotrexate (remember MTP-PE is administered over the course of 36 weeks, and I calculated this in the car coming back home today and I realize Mattie will be receiving this through July! Will this nightmare ever be over?). Kathy explained to me that Dr. Gonzalez was going to meet with Peter and I on monday to go over the informed consent for MTP-PE. Interesting no? Sloan Kettering could learn a thing or two about this, rather than flinging an informed consent on us with two seconds to read it.
Mattie enjoyed being back home tonight and started playing with his trains. He even was dancing around the living room. Peter snapped a picture of Mattie in motion singing and dancing.
We are all tired here, so I plan on signing off, but wanted to end tonight's blog with a message I received from Grace (a friend and RCC mom). Grace wrote, "I'm just catching up on reading the blogs and had to say "hooray" to you for having the chutzpa to stand up for your rights at Sloan. You are the best medicine Mattie could ever have. With you in his corner, anything is possible. And boy did you make the right decision in choosing GT as your hospital! It's a very personal decision and you were so wise to choose GT over Children's. I think Children's is a great hospital and is perfect for some, but I think Mattie just flourishes under the care at GT. And again, it's a tribute to you for advocating for Mattie so he does receive the best care possible. You are amazing. Regarding the TV in the taxis in NYC, we just went to NYC for a quick weekend over the holidays and was mortified to find TVs in the taxis. Here you have this amazing city to watch out the windows and you have this ordinary, every-day TV to distract you. Before I realized you could shut the TV off, I had to keep telling the kids, don't look at the TV, look at this amazing city around you! And I just had to respond about the Joshua Bell violin story. I don't know if you caught the original story which was a cover story in the Washington Post magazine a few years back, but it was phenomenal. In fact, the writer, Gene Weingarten won a Pulitzer for it. He's an amazing writer and wrote a beautiful story about life and taking the time to stop and appreciate it. It made me happy when I read the story because I know I would have stopped to let the kids watch a beautiful violinist. And your blog has had the same result on us; you help us stop and focus on the beautiful things in life that we don't think we have the time for, but really do."
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