Mattie's Methotrexate level cleared at midnight on thursday. So we knew that we would be discharged on friday morning. We are SO thrilled to be home! Each hospital stay seems to become harder and harder on all of us. At 7am, I started packing up Mattie's hospital room, while Peter jumped on several conference calls. It literally took me two hours to sort through the room, and pack in an organized fashion. We enter the hospital SO organized, and by the time we are discharged, things are all over the place. When Mattie woke up today, and said he did not want to come home. But as that thought of being released became a reality, his mood changed for the better. He hopped out of bed, got dressed, and was even helping me pack. I think Mattie and I were close before he developed cancer, but now we have a very tight bond, and though we may get upset with each other now and then, we both know it is out of frustration. Mattie was an excellent helper and had good insights about how to more efficiently pack our boxes with things. Peter and I packed up our car with Mattie's things, while Whitney and Lesley played with Mattie. Thank goodness for Childlife! We would have a real problem without these fine individuals. It made the move out process go much smoother today!
Mattie and I dropped Peter off at work, while we continued on home and met my parents in our parking garage. They helped us bring bags upstairs, and I slowly started to unpack. Unpacking is one of my LEAST favorite activities, after a long week at the hospital. While I was unpacking, my parents took Mattie for a walk, which was very good for him. On their walk, Mattie stopped by our local CVS and picked up a balloon and a remote control car. He was very animated about this purchase. Thanks Grammie and Pop Pop! See a picture of Pop Pop watching Mattie with his car below!
At 1pm today, Peter, myself, and Alison (our Team Mattie director of communications and public relations) had a conference call with Ted Kennedy, Jr. Thank you Brian and Danelle Fortune (RCC parents) for making this possible. Mr. Kennedy lost one of his legs to bone cancer in 1973 at the age of 12, and devotes much of his professional and personal energy to working as an advocate for the civil rights of people with disabilities. We spoke with Mr. Kennedy about his own battle with osteosarcoma, and then spoke about Mattie's current situation and treatment issues. Mr. Kennedy shared many valuable insights with us, and even mentioned his interest in learning more about MTP (the experimental drug at Sloan Kettering). At one point in the call, Mr. Kennedy basically said that Mattie was lucky to have parents who are devoting their time, energy, advocacy skills, and intelligence to help him. He commended us for doing the right thing, which is exploring all possible options for Mattie's treatment, so that by the time we make a choice about post surgery chemo options we will have no regrets. He also told us, never to be afraid to challenge a doctor, and that a good doctor should welcome such a challenge. We told Mr. Kennedy that we agreed with him 100% and challenging doctors is not a problem for us. Mr. Kennedy was very generous with his time and thoughtful in his responses. It is our hope that we will be able to keep him updated about Mattie's progress. Mr. Kennedy even told us that he has checked out Mattie's blog on occasion.
After our conference call, my parents and I took Mattie out to lunch. Mattie ate up a storm, as he cuddled up right next to me while eating. We fed some fish after lunch, in the pond outside the restaurant, and then we took Mattie to Toys R Us. He has been planning this toy store visit now for a week. It was so funny watching him in the store, because I could see him scanning the aisles, and I knew exactly where he was heading. He wanted a remote control airplane. He found exactly what he was looking at, and when we came home, we assembled it and though it was dark outside, we went out and flew it!
Thank you to the Ferris family for a "New England" feast. We loved the Lobster rolls and the fish soup from Kinkaid's. What a special treat, the chocolate dessert was demolished tonight as well! Much thanks! The food from Johnny Rockets for Mattie was a hit too! That was so thoughtful of you, we can't thank you enough for your support.
Mattie had the opportunity to open up some packages tonight. Thank you Grandma for the shirts. They are very appreciated and needed. Mattie loved the homemade halloween cards from his cousins, Nat, Sydney, and Will in Boston. Mattie also loved the scratch magic and story telling game. We also want to send a special thank you to the Morris family for enrolling Mattie in the Lego Brickmaster Club. Mattie was thrilled to get his first gift today, and is currently working on it. In addition, a former student of mine, Mary, was very generous with us, and sent us a Brookstone Sound Machine. While building legos, we have a peaceful sounding stream running in the background. I am loving it! It is a fantastic sensory experience for all of us. Thank you Mary!
On the electronic front, we want to thank Emily W., Brian Boru, Karen, and Grammie (great animal videos!) for the wonderful e-cards! As we head into the weekend, Mattie has a lot of wonderful things planned, and it is hard to imagine how in only a couple of days our world is going to change dramatically. Mattie will be truly disabled, and we will need to learn how to assist him as well as motivate him through this recovery process. In addition, our living room will be transformed next week into a hospital room, so that we can make Mattie comfortable when he returns home post surgery. I thank all of you for sending me links to adaptive children clothing links today! I appreciate all the thought you are putting into this and for those of you sewing and designing clothes for Mattie so he can be comfortable post-surgery. I end tonight with a quote from Leslie's hope book that she sent me. It seems so fitting for Peter and I.
"Even the strongest people must step back, take a deep breath, and summon their courage now and then."
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