Sunday, April 26, 2009

Sunday, April 26, 2009


Quote of the day: "It is not always by plugging away at a difficulty and sticking at it that one overcomes it; but, rather, often by working on the one next to it. Certain people and certain things require to be approached on an angle." ~ Matthew Arnold

As many of you know, Mattie's March website was launched about a week ago. In that amount of time, we have had about 150 people register for the walk and for those unable to attend, we thank you for making donations to Mattie's fund. We are very grateful for this incredible support and for the difference you are making in my family's life.


Mattie enjoyed the gifts his nurse, Ellen, gave him last night. Ellen was one of the first nurses we met back in August. Ellen is extremely competent, an amazing advocate for her patients, and very compassionate. Peter and I fondly remember that Ellen was the first nurse that Mattie hugged. In September, Mattie was having a rough time with chemo, and when Ellen entered the room, Mattie ran toward her. We thought at first he was running up to her to hit her, and even Ellen prepared herself for the worst. However, to our surprise, he gave Ellen a hug. This is a story we reflect upon often! Ellen has two boys of her own and her husband was stationed in Iraq for over a year.


On Saturday night, Mattie was up coloring using the Crayola Color Explosion book that Ellen got him. Ellen even joined Mattie for a little while coloring. Mattie and Peter also built a model police car together before the night was over. Mattie finally went to bed at 1am. You can see a picture of Mattie and Ellen together, and also a picture of Mattie with his model car.


Peter and Mattie had a very busy day together. They spent the majority of the day in the childlife playroom. We are thankful that Linda found a way to keep this room open on the weekends. It makes a huge difference.



Mattie was examined today by Dr. Gonzales in the childlife playroom. Normally doctors are not allowed in the playroom, but either Mattie had to go back to his room for an exam, or invite Dr. Gonzales into the playroom. He went with the latter. Dr. Gonzales also assessed Mattie's range of motion with his left arm. Needless to say, everything Dr. Gonzales had in her pockets were removed by "Sam," which is the name Dr. Bob gave to Mattie's left arm.




Peter and Mattie spent a good part of the day designing a wonderful suspension bridge. In fact, when I arrived at the hospital, I was amazed by what I saw. Mattie cleared Methotrexate in record speed. We are told by Mattie's nurses that this is not unusual as we get to the end of Mattie's treatment. His body gets used to Methotrexate, and therefore, can flush it out easier. At 24 hours, Mattie's blood Methotrexate level was 3.33. A record low, so Dr. Gonzales started to prepare us for a Sunday discharge. She was right. By 4pm today, Mattie's Methotrexate level was .07, and his level must be .1 or below to be discharged. I arrived at the hospital at 4:15pm, to help Peter pack up the room and move out. However, to my surprise, Peter had already packed up and things were ready to go. While Peter was loading the car, Mattie and I walked around the PICU, talked to the nurses, and even went to feed Linda's fish. Mattie was happy to be going home.

We return to the Lombardi Clinic on Monday for a full day, including an infusion of MTP-PE. It feels like we never left the hospital, and I believe Mattie will go back in-patient on Wednesday for the next round of Methotrexate. Mattie ONLY has two more rounds of chemo left. The infusion coming up on Wednesday, and his last one scheduled for the week of May 11. In some ways it is hard to believe that almost 10 months have passed since we started. In fact, the 10 months are a blur, and the only way I put this time period into context is that I know school will be finishing up for Mattie's friends, there is a GW graduation coming up, and the weather is getting warm again. Needless to say, there are many emotions wrapped around this last chemo date. Certainly it should be a happy occasion, but instead we have Mattie's lung surgery looming over us, and then of course the moment that every cancer patient dreads, the wait and see game. Living from one scan to the next, hoping and praying nothing is revealed.


When Mattie arrived home, he happily played with his suspension bridge that he built. I think it is an impressive structure, which has now joined his train village in the middle of our living room! Mattie also had a visit from JJ, our resident Jack Russell Terrier. I think JJ missed Mattie while he was in the hospital! We had a nice dinner together thanks to Kathie, Mattie's occupational therapist. Thanks Kathie for the homemade lasagna, fresh vegetables, and wonderful strawberries!

I end tonight's posting with a message from my friend Charlie. Charlie wrote, "I am really glad you got some sleep. I do wish you could spend 24 hours in bed at this point to catch up on some of the sleep that you've missed rather than having to run around and do errands but I know that is not practical. Maybe once your parents are here, you can take a little more time to rest. I really worry about you. Sounds like Mattie had a full day on Saturday with the company (visit from Brandon and the medical staff) and the play. I am so glad that you got to see the play on video even though you were not there. The prop was certainly terrific and I am sure the actors were just as special if not more so. What Dr Bob said about the wrist makes perfect sense; two bones, two growth plates, remove one and the other keeps going so we have an uneven growth pattern. Although it will take surgery to fix it, realize that it is not life threatening, could not be fixed sooner even if identified by you, and that this happens to children who are not fighting cancer as well. When you get to the point of this surgery it will mean that the finish line is in sight and that Mattie's chemo and chest surgery are done and that he is on the road to recovery. Look at it as a last marker on the road to wellness."