Quote of the day: “Kind words can be short and easy to speak, but their echoes are truly endless.” ~ Mother Teresa of Calcutta
Charlie wrote, "I was struck by how hurtful the resident's words were. How often so many of us say something without thinking about the impact of what we say on the person who hears us. Why do we so often assume the worst about someone, rather than the best? How much better our world would be if we were all like Tricia, quick to defend those who cannot defend themselves or who might not even be there to hear what was said (although the ripples of the words continue with or without the presence of the person who was discussed). How hard would it have been for the resident to make no assumptions but just say, you seem tired, is there something I can do to help? and then wait to see the response rather than assuming something about your personal situation. We can all learn from this. Extend the helping hand rather than the critical tongue."
Mattie woke up this morning and had a visit from Ann. Ann came with a bag full of tricks, and Mattie always knows Ann doesn't disappoint. Ann gave Mattie a remote controlled tarantula. Creepy crawling things just fascinate Mattie, and Mattie couldn't wait to get the batteries into the toy to scare a few people. This toy was a lesson in humility. It took me, Ann, and Meg to put this thing together, and after all of that we deduced the company gave us a defective 1.5 volt battery. None the less, Mattie was having a great time directing all three of us and using a screw driver to assemble the spider pieces. Ann even ran to the hospital gift shop to try to get a new battery in order to get this spider to crawl. While Ann went in search of batteries, Mattie, myself, and Meg did another activity that Ann brought. The activity produced a cute smiley face washcloth. When Ann got back, we all headed to the playroom, and Ann helped Mattie build a volcano. Ann entertained Mattie for quite a bit of time, while I had a minute to myself. During that time, another mom on the floor found me and wanted to talk. The same mom you may recall me talking about, the mom whose daughter was on life support several weeks ago. I can't explain this, but HEM/ONC parents instantly feel a sense of camaraderie with each other. This mom invited me into her room and she introduced me to her baby. The baby was very sweet and had every possible tube connected to her. The mom even showed me her photo album of the baby before she developed cancer. It was a very touching visit.
After my visit, I was greeted by Dawnee. Dawnee is the former assistant director of Resurrection Children's Center, Mattie's preschool. Dawnee brought us a lovely lunch, smoothies and all. I had a wonderful opportunity to catch up with Dawnee and our family appreciates her support. Dawnee and I then went into the playroom to see what Mattie was up to. Before we got there, we could smell some serious vinegar in the hallway. Mattie, Ann, and Linda were mixing up some sort of "lava" mixture to send shooting up the three volcanoes they created. Ann was showing Mattie a map of where you would find a volcano in the world. Mattie was having a great time in the playroom, and you could see and hear great joy and laughter filling the room. Mattie created and colored each of the volcanoes before sending lava through them. Take a look at this great activity......................
Left: Mattie with his three volcanoes!Right: Linda working hard to make sure the volcano erupted.
Mattie, Linda, and Ann playing and chatting!
Soon there after, Anna arrived and Mattie had another amazing PT session. Before the session began Mattie was asked to wash his hands in the playroom because they were covered in vinegar. I was trying to get Mattie's walker (aka: the cat - Mattie named his walker today and he selected that name because of the tail of beads trailing behind the walker), and before I knew it, Mattie literally took two or three steps by himself, unassisted by the walker. I wish I caught a picture of that, but today he gave me a taste of what is to come.
Jenny, Jessie, and Denise all came from the clinic today to participate in Mattie PT session. Mattie was surrounded by all his favorite women. Just the way he likes it. Jenny and Jessie used their creative skills to set up an incentive chart, a chart that Mattie could relate to. Wait until you see this chart. I am sure you can imagine a chart with lines, stickers, and so forth to monitor Mattie's progress. But Nope that is not what they created! We know that type of behavioral chart doesn't work for Mattie, so what about a chart with a cockroach? Check out this creative box/chart.
By the lower left corner of the box, you will see the word, "start" and of course a model magic cockroach. This roach looks VERY real! As Mattie walks using the walker and moves from one place to another in our house, the cockroach gets to move ahead to another circular velcro piece. So in essence Mattie has to walk at least four times with the walker at home in the day, in order for the cockroach to be able to walk through the "bug spray" tube. At the end of the tube, the roach drops into a cup filled with wood chips for him to eat. Once the roach gets to his finishing place, Mattie qualifies for earning a prize. It is a very clever way of illustrating Mattie's progress in a day, and an incentive system that hopefully will work for Mattie. I can't thank Jenny and Jessie enough for their creativity, and for taking into account Mattie's interests which will more likely motivate him to use the boxed chart.
Anna had a goal for Mattie today. She wanted him to walk one whole lap around the fifth floor. This is not a short distance, and Mattie has never been able to go more than 1/4 the way before. However, the roach chart, all the ladies, and the singing motivated Mattie to not only walk one lap around the floor, but he walked an additional 1/2 lap. Here are some pictures of this conga line below. Again people came out of their offices to watch this, and it seems to me most people on the fifth floor know or have heard about Mattie.
Mattie walking out of the playroom to start his PT goal of one lap around the floor.
The conga line: Mattie in the lead (with the scrub hat that Jey brought up for him today!), Jenny, Denise (Mattie's social worker), Jessie, and Marla (Anna's intern). Picture this group moving down the hallway and singing!
You can see Mattie talking to Jeff Turner. Jeff is the HEM/ONC nurse manager and he came out of his office to see Mattie in motion!
After Mattie's lap and a half, he then wanted to play twister again. He got all of us down on the floor twisting about, and then Marla and Mattie had several toe wars. This was actually a creative way to get Mattie to stretch out his right leg. I am working hard at trying to massage and stretch Mattie's right leg. Now that I understand the importance of getting this leg straight, I am trying to make a conscious effort to grab a hold of Mattie's leg while he is sitting still and watching TV.
Mattie spent a good part of the afternoon today in the playroom with Jenny and Jessie and several local high schoolers who came in to work with the kids at designing valentine's day cards. Jenny and Jessie gave me the opportunity to come back to the room and catch my breath, while Mattie was creating. I knew he would be working on a valentine's card for me, but what transpired, I would never have expected. Mattie made me an entire valentine's day box, and inside the box was a bracelet made out of pipe cleaners, a crown made of hearts, and a pile of beautiful hand cut and designed Valentine's. The one valentine that got me was the mommy and baby butterfly, or as Mattie called it the Mama and Mooshi (my nick name for Mattie) butterfly. Jenny took some pictures of Mattie surprising me with my gift! I think the photo of Mattie and I looking at each other is priceless.
Mattie was visited by Dr. Bob. Mattie's arm was de-rotated tonight for the third time. We are placing Mattie's arm in a sling now, and putting a tight shirt over his arm to prevent it from moving at night. Let's hope this is a viable solution to chickenarmitis (Bob's term that he uses with Mattie to describe the rotation of his prosthesis). Mattie showed Bob his cockroach chart and the special valentine that he made for Ann. In fact, Mattie asked to go back to the playroom late this afternoon with the specific desire to make a valentine for Ann. I thought that was very touching. While we were chatting with Bob tonight, Bob asked Mattie where his huge cockroach was. We explained that we lost the model magic roach, which I was very sad about. Mainly because it meant so much to Mattie and I remember him creating it with Jenny and Jessie. Well Christine, the Hem/ONC resident and Ellen, one of our favorite night nurses, were in the room, and told us they knew exactly where this roach was, they just did not know it was Mattie's. Apparently a nurse from the transplant unit found it and loved it so much, she had it on her desk. The roach has now been reunited with this rightful owner. This all happened because Bob innocently remarked about where the cockroach was!
We want to thank the Tordella family for an incredibly tasty dinner. Denise made pasta with shrimp. It was delicious and needs to go into Mattie's cookbook. In addition, Denise supplied me with my two favorite things, chocolate and fruit. She also made us homemade coffeecake, which was delicious. Mattie thanks you for the dunkin donuts too! Thanks for visiting tonight Denise and for all your support. Mattie loved the erector set, and has already built the bicycle with Peter, has read the books, and is now assembling the puzzle. Mattie is keeping Peter very busy!
I am saddened by the news I received yesterday from Mattie's school. We learned that there is a fifth grader at Mattie's school who was just diagnosed with a rare form of brain cancer. I can't believe two children on such a small campus have been hit with such rare diseases. One child on a campus dealing with cancer is hard enough, but two, just seems to compound the pain. I feel for this family and I remember these initial couple of weeks after Mattie was diagnosed. I felt like I could bearly function. My thoughts are with this family, and this little boy who has a tough road ahead of him. I think when children so close to us are stricken with these horrible diseases it gives us great pause. The only consolation for us and I am sure the other family is that we are both a part of the SSSAS community, which is extremely supportive.
We would like to thank Murray and Carol Tinkelman for their lovely Dinosaur poem book they sent Mattie. Murray is a mentor of Debbie Pollak's (Mattie's art teacher), and he did the wonderful illustrations in this book. Murray autographed the book for Mattie as well. This is such a special gift, and we are honored to have a copy. We look forward to exploring this book with Mattie.
I received the following e-mail from Ann today after her visit with Mattie. It meant a lot to hear her feedback. Ann has been a trustworthy and steadfast friend to both Mattie and I, and I feel despite living with this daily pain of knowing Mattie has cancer, it is a wonderful feeling to have this opportunity to be connected to such a selfless and loving individual. Ann wrote, "I was driving to gymnastics and I remembered something Mattie said today. He told me that in April, for his birthday, he would be "almost done with the hospital, at home and walking around just fine." He was totally positive and excited for his party. It made me realize how wonderfully you and Peter have managed his expectations - despite your conviction to be totally honest with him and tell him the truth always, he has not become afraid of the treatments or the plan he has to undergo - he sees it as a necessary part of his treatment, trusts you to help him through it and is such a brave and logical character!! The conversation was fascinating to me. God has given him (through you), the ability to cope in a way that is beyond adult comprehension. WOW!! He is a remarkable little person!!"
Mattie is scheduled to be released from the hospital on saturday, after he receives the rescue bladder drug, Mesna in the morning. We have a long day ahead with packing up and coming back home. We received a lovely e-mail tonight from Tamra, who let us know that Tamra's daughter, Louise wants to play with Mattie tomorrow night. What a special gift. Sharing one's time and energy to play with Mattie is about one of the best gifts someone could give us now. We are headed back to Georgetown on monday for a clinic visit, but technically Mattie is "off" for two weeks now to recover. From his last etoposide and ifosfamide infusion in December, Mattie became very sick and hospitalized for 8 days only four days after being released from the hospital. So to me this is the wait and see game. For a person who likes some sense of control, security, and stability in one's life, I can tell you the wait and see game is not well suited for my personality. Wish us well during move out day!
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