Thursday, October 16, 2008

Thursday, October 16, 2008

Thank you Leslie and Mike for the wonderful book of Hope quotes. Today's quote: Courage is doing what you must, when doing what you must, is the hardest thing of all.

Before I begin telling you about Thursday, I was remiss last night, because I forgot to share with you that Ms. Mary Dressendorfer, Mattie's technology teacher, came to visit Mattie wednesday afternoon. Mary visits Mattie every wednesday. Mattie was in a bit of a mood, but Mary went with it, sat with him, admired his art projects, and eventually he warmed up to doing computer time. While Mary was with Mattie, my mom and I went outside, and it was a lovely break. Thank you Mary for this opportunity and for also sharing with Mattie the wonderful book of funny faces created by Mattie's friends using the photo effects shop on the Mac. The pictures are hilarious. This is a special book, and we also love the printouts of Mattie's face.

If you recall Mattie received a wonderful keyboard from Jerry last night. Jenny took a great picture of Mattie playing the keyboard wednesday night, and I wanted to share it with you. I am saddened I missed this moment, but I am so happy Jenny captured it for us.

Mattie woke up this morning and was quite grumpy and moody. This is becoming a regular occurrence. He let me know that he refuses to eat all hospital food now. He tells me it doesn't taste like "Mommy's food." Thank God, otherwise, I would immediately be signing up for cooking lessons! I could tell Mattie did not want to be in the room. So I helped him put on his robe and shoes, and I grabbed a Donut for him from one of Mattie's gift boxes he received yesterday and we left the room and went walking. I knew exactly who Mattie was looking for. He was looking for one of his childlife girlfriends (Linda, Whitney, or Lesley). To his dismay, he couldn't track one of them down, so I encouraged him to walk further with me and sit on a bench and eat his donut. So he followed along, and we sat together. What transpired was what I call a teachable moment. You know as a parent, these moments are fleeting, and they don't happen often, but when the stars and planets align, you seize the opportunity. Mattie was sitting next to me calmly, and snuggling up to me. He was eating his donut, so I just started talking. I told him how proud I was of him, how I think he is a very brave and courageous boy, and how he is my one and only special boy. He continued to listen. So I started to talk about surgery. I told him the story of my experience with surgery. Mattie knows that I had a c-section when he was born. So I told him that after I had surgery I wasn't feeling well. I was in some pain and in fact, I had trouble moving and walking around. But then I asked him, how did I turn out? Do I look like I am in pain or have trouble moving around now? He answered no. So I told him, the same thing would happen to him, that it is natural to have pain after surgery, but there are medicines you can get to help with the pain, and that he would have to keep his arm still for several weeks because it would need to heal. He was taking all of this in. I reminded him of what the ultimate goal is, to feel better and remove all the bone bugs so he could lead a healthy life. He said he was going to die, and again I said to him, we are all going to die eventually, but that wasn't going to happen to him now. I then moved into the fact that after the surgery he will be my bionic boy. That he will have stronger bones than anyone I know. He seemed to like that idea and then asked what if someone bumped into him at school with his new bones? I told him they better watch out, because his bones will be so strong, the other kids may bounce right off of him. Well he thought that was an absolute riot! I felt that I conveyed the point about pain and mobility in a meaningful and respectful way. After our conversation, we started walking again, and this time bumped into Anna, Mattie's physical therapist.

Anna convinced Mattie to take a walk down to the PT office, where all the equipment and games are located. Mattie was hesitant, but he did go. Once in the PT room, he looked around, but he was pretty much focused on returning back to the childlife area and PICU. Anna understood and followed Mattie's cues. Anna tried to show Mattie how to do some simply pendulum exercises with his arm, but Mattie told Anna he was bored and that he already knew these exercises. Which of course he doesn't. I feel a little frustrated by Mattie's reaction, because I know PT will be key to him regaining motion and strength. But then I take a deep breath, and realize one step and hurdle at a time. After our meeting with Anna, Whitney came to find us and brought Mattie to the childlife playroom. Mattie had a day of creativity. In the playroom today, he worked on his halloween costume (which we are not sure how he will wear it yet), created an IV pole creature, and even participated in a science lesson today about creating bubbles using glycerin and dry ice. See some great pictures below.

Mattie designed another haunted house. He plans on using this somehow as his halloween costume.

Mattie was inspired to create an IV pole creature after seeing Brandon's creation of Wall-E on his pole. Mattie's pole creature is a caterpillar named Smiley. Thanks Jenny for helping with this project.

Mattie holding a dry ice/glycerin bubble! He was fascinated!

While Mattie was busy with lots of activities (thank GOD for this childlife playroom, it is absolutely vital and fantastic!) I had a lovely visit from my college friends, Leslie and Mike. Leslie was my freshman year roommate, and we have stayed close since. Leslie and Mike brought Mattie a vanilla shake and lots of wonderful gifts, such as illustory. Mattie will be able to create his own story and then I can send it into this company and they will bind the story and pictures, like a real published book. Lord knows we have a lot to write about these days. Thank you also for the Hope book. I love it. It was wonderful to see you, and wish we lived closer to each other.

Around lunchtime, Ellen visited. She brought me a lovely lunch, which we had together in the parent lounge, while Mattie was with Linda. Linda even took Mattie outside for fresh air and they launched rockets by foot. He loved it, and then went to visit Jenny in the clinic. Litearlly he got around today, to see all his favorite women! Ellen and I talked about a lot of things, which is nice, because I feel so unifocused these days. I feel like I am always in crisis mood, and in the midst of crisis mood, you really lose who you are. Thank you Ellen for the wonderful food, the happy meal, and the tasty cakelove cupcakes.

Later in the afternoon, Mattie had a visit from Mrs. Joan Holden (SSSAS' head of school) and Mr. Bob Weiman (SSSAS' head of the lower school). Both Joan and Bob have been incredibly supportive and Joan brought loads of Saints gifts for Mattie. Thank you for the Saints stuffed lion animal, the Saints hat, and water bottle. The lion is sitting on Mattie's bed tonight. Bob shared a new magic trick with Mattie today. All the kids in the childlife room were intrigued and then wanted to try it themselves. Bob also gave Mattie 'Zolo a go go.' I have never seen this toy before, but it is a very creative building set, in which you can make all sorts of people and things with shapes that connect to each other. Bob then got creative and silly with the kids, and started creating pipe cleaner glasses. I took a picture of Bob in action, see below. What impresses me about Bob, is he came from a full day at school, but jumped right in, sat on the playroom floor, even took out his computer to look something up for Brandon. He is a true educator that loves children. We appreciated Joan's and Bob's visit a great deal.

Bob Weiman with pipecleaner designed glasses!

Mattie had the opportunity to play with a friend today. His buddy from RCC, Sam, came to visit along with his mom, Ashley. Sam watched the magic trick and even designed a special pinch pot for Mattie while in the playroom. Thanks Sam for bringing Dunkin Donuts, and sharing them with the other kids in the room. I think they were appreciated by everyone!

Sam and Mattie in the playroom together!

This evening I had the opportunity to talk to Dr. Synder. During our conversation, I mentioned to her Mattie's grumpiness and moodiness. She explained to me that the steroid he is taking for nausea could cause this result. I am not sure this is definitely the case, but it could explain the intense mood change I have been observing.

I want to thank Julianna, a SSSAS mom for delivering us dinner tonight. Though Julianna and I do not know each other, Mattie's situation has given us the opportunity to meet. Thank you for coming tonight and for a wonderful dinner. Mattie ate the mac and cheese and loved the adorable halloween cookies. I am still enjoying the chocolate pretzels! Thanks Mommy and Daddy for the spaghetti tonight. His favorite! Mattie had two dinners, and we are so happy we can accomodate him!

I would like to share two e-mails with you tonight. One is from a colleague of mine, Karen L. and the other is from my friend Charlie. Karen L. shared a story of hope with me. Karen wrote, "The school superintendent in our district—who both Rodney & I have gotten to know fairly well—was diagnosed a year and a half ago with a rare form of lymphoma. The diagnosis was not good with the doctor saying that at best 50% of people might make it 5 years. He was pretty discouraged by the diagnosis and felt he had a lot more to do. So, he took a year and a half off and decided on an aggressive form of treatment-including a transplant. He was very sick, lost at least 50 lbs., was not allowed to see his grandchildren (or most people) for 16 months because of the risk and was pretty isolated—tough for Mr. Social. As with Mattie, the community rallied around him. The high school kids had blood drives and organ donor sign-up events as well as informational events on how to become a bone marrow donor. To make a long story short, we saw him last night at a school dedication and he was able to report complete remission and although the doctor’s won’t say ‘cured’ they said that they expect he will stay in remission until they find a way to cure the cancer! He had also just spent the weekend celebrating his grandson’s birthday by spending the day with a new remote control car ‘trying out’ the brand new football field as their playground. And, I want to support your decision to follow your instincts (and training) to keep Mattie informed about what is going on. I strongly believe that a good mother knows what her child needs and is willing to stand firm when necessary. Remember that you are the one who has to deal with the aftermath and who he needs to be able to trust."

Charlie wrote, "In my experience as a diagnostic x-ray tech, I found that children did best when prepared for exams, surgery and such. "Protecting" them from what will happen, like trying to protect them from death and grief, never works, it just causes them to trust us less, make up their own "stories" and have to deal with things over and over again, rather than processing with us and moving forward. I know that you as both a mother and a counselor (one of the best I've ever met) instinctively know this. Follow your feelings with respect to Mattie; they won't steer you wrong. No matter how much you discuss things, not everyone will agree, but that's okay. In the final analysis, the decisions are yours and Pete's."

On the electronic front, I want to thank Kim and Karen for the wonderful e-cards and Ms. Pollak and Coach Dave for your lovely e-mails. Peter sent me home again tonight and despite having two nights of sleep at home, I still feel very tired and can only imagine how Peter is feeling working a full day and being in the hospital at night. Keep your fingers crossed that we will be discharged from the hospital tomorrow. At the moment Mattie's methotrexate level is .25, and it needs to be below .1 to be released.