Quote of the day: "An acre of performance is worth a whole world of promise." ~William Dean Howells
Mattie had his second infusion of doxorubicin and ifosfamide last night. He handled that quite well, but at 1am he was still wide awake. This was shocking considering what an active day he had on Tuesday. When Mattie woke up this morning, he was in the mood to play an April's fool prank on his nurse. Erin was Mattie's nurse today. Erin was one of the first nurses we met back in August, and Erin taught me how to do a central line dressing. This was such a daunting technique back then, but Erin was very supportive and was a good teacher. Mattie handed Erin the gift he made in clinic on Monday. A cardboard box stuffed with plastic spiders and flies. When Erin opened the box she gave out a big yuck! She was a good sport, and Mattie enjoyed the whole process.
Mattie had a lot of visitors today. Whitney and Lesley (Linda's former interns) both came to spend the day with Mattie. In addition, Brandon came back to the hospital as well to spend the day with us. So it was like old home week in the PICU. Mattie had fun with them in the playroom. They watched the movie, "Hotel for Dogs" together, painted, and even had pizza. I snapped some pictures of this great foursome.
Left: going clockwise - Mattie, Brandon, Lesley and WhitneyRight: The group paintings that were created in the childlife playroom. I love Mattie's hand print on the bottom picture.
Left: Mattie played a game this afternoon, in which his bathroom was a jail. He threw each member of the group in jail at some point during the game, and the others had to help Mattie block the door so there wouldn't be an escape. Check out the picture, where Brandon is trying to escape from the "jail," and Mattie, Whitney, and Lesley were sitting on a chair in front of the door blocking the way. What you can't see in the picture is Mattie moved all the garbage cans, his wheelchair, and table in front of the bathroom door as a barricade. Mattie had a wonderful time playing this game over and over again, and Whitney, Lesley, and Brandon were good sports throughout the game.
While Mattie was busy, I had a surprise visit from Charlotte's mom, Ellen. Ellen and her family just got back from a trip to England last night, and I am honored that she would visit me when I know she had to be jet lagged, with a lot to catch up on. Ellen brought me a wonderful hot tea and chocolates from Harrods in London. Thank you Ellen for the nice visit, it was great to catch up.Later in the afternoon, I attended another HEM/ONC parent support group. Different people attended today's group, but again, it was interesting to hear the issues others are dealing with. The irony is every time I introduce myself and explain to the group what Mattie is dealing with, you can see people are in shock. I think cancer is horrible, but combine cancer with massive surgeries and it is a parent's worst nightmare.
I did not meet with the thoracic surgeon today that I spoke about last night, however, I did have an opportunity to informally chat with Dr. Chahine. Dr. Chahine works out of Children's Hospital and Georgetown. I am familiar with Dr. Chahine, because he is the surgeon who placed Mattie's central line in his chest. I explained to Dr. Chahine that Mattie will need lung surgery in May or June. I was under the impression that Mattie's surgery was going to be laproscopically. However, after Peter sent Dr. Bob an e-mail, I quickly could see that in fact Mattie's surgery would be much more invasive. Mind you Dr. Chahine hasn't seen Mattie's scans yet, but based on what I was telling him and the small nature of the lung lesions, he doesn't think that laproscopic surgery will be an option. He feels that Mattie will need a thoracotomy. Why? Because the lesions may be too small to capture through laproscopic procedures. In addition, Mattie could potentially have other lesions in his lungs that are too small to show up on a scan. So the only way to remove all possible lesions is to collapse the lungs and manually feel each lobe for lesions. This can be done two ways, in which incisions are made through Mattie's sides or by through the chest cavity, which would mean cutting through the sternum. He told me more, but I will spare you the details. Needless to say, after this hallway conversation I was deeply saddened. Dr. Chahine told me this is major surgery, with a long recovery time, and it is painful. All devastating news to a parent, a parent who has already observed great suffering in her child. I am not sure what I am more upset about. The fact that Mattie needs this surgery or the fact that I was led to believe that this surgery was going to be laproscopically. This news has clouded my whole day, not that I need any more clouds. We have plenty over our heads already! But how do you plan a summer, plan for intensive physical therapy, while attempting to reclaim your life? The answer is you CAN'T! Our life is filled with uncertainty, with no end in sight.
At around 5pm, Linda, Whitney, Lesley, Brandon, and myself wheeled Mattie down to the physical therapy gym. On our way down, we ran into Susan DeLaurentis, Mattie's Director of School Counseling at St. Stephen's. Susan brought Mattie a wonderfully large and colorful butterfly balloon. It is very special, along with a fabulous singing birthday card that was signed by several of Mattie's friends and teachers! The song playing inside the birthday card is the hamster dance. If you haven't heard this song, you are in for a treat. Click on this youtube link
Left: Mattie with his butterfly balloon and singing birthday card!
Susan stayed with us through Mattie's physical therapy session, and she had the opportunity to see Mattie's progress. I think some pictures will help you see what Mattie was up to in therapy!
Left: Mattie swinging on a platform swing. IV and all!
Right: Mattie climbing through a tunnel!
Left: Mattie is using both of his arms quite well and bending his knees to pick up blocks to form a wall!
Right: Mattie couldn't wait to knock the wall over on Linda, Susan, and Anna! Despite getting hit with blocks, everyone cheered and was very proud of Mattie.
Left: Mattie built such a high wall to knock over, that we could hardly see him from behind the cones. But it was wonderful to see Mattie using his arms, standing, and balancing!
While Mattie was with Susan and Linda in the PT gym, I called Dr. Bob. Bob and Anna spoke about casting options for Mattie. Bob is recommending that Mattie have a cast placed on his right leg next week. The cast will immobilize Mattie's right leg, with the goal to straighten his leg at the knee. Until Mattie's knee can straighten out, Mattie will be unable to walk normally. Right now Mattie's leg is frozen in a bent position. Bob has requested to do the casting himself. I am very grateful that Bob is willing to do this personally and to oversee the casting process. It is true that Bob is our friend, but I have a feeling even if he weren't his attention to detail, follow through, helping patients and their families throughout the entire process (from surgery through recovery) make him an excellent match for my personality.
After therapy, Mattie, Linda, and I headed back to the PICU. Susan gave Mattie a beautiful loaf of bread and container of creamy butter. This made Mattie's evening. He literally ate four pieces of bread with a lot of butter. It continues to be Mattie's meal of choice this week! Thank you Susan. We also want to thank Kristin Emory for visiting today and for her wonderful dinner. Her chicken was delicious and she brought me my favorite salad, arugula! Thank you also for the cheesecakes and happy meal for Mattie!
I end tonight's blog with a message from my friend Charlie. Charlie wrote, "Tuesday's blog spoke to me of promises made and not kept and those which were, even past the point of expectation. Dr Cox did the right thing with his efforts to procure the medication for Mattie; however, I hope he sees that this process should not take the head of pharmacy, there are not enough hours in the day for him to run around and personally procure medications that are needed. This is a broken process and it needs to be fixed; when someone identifies a medication that is required for a patient and the stock is low, a reprocurement process should start and that means finding solutions to supposed shortages ahead of time. On the positive side, it is wonderful to see Mattie regaining his physical agility, to become more willing to try physical challenges and to continue to progress on the social level as well. I think that those of us who are able bodied don't appreciate how much effort all this takes. He can do this only because you and Pete are there to be his safety net; he's tried that net many times and knows it will hold him so his confidence level continues to improve. I know and share your concern about the thoracic surgery but I feel Mattie will come through like the trooper he is. However, I will continue to pray that the chemo makes the surgery unnecessary so that Mattie's healing can continue at this same great pace."
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