Quote of the day: "Judge each day not by its harvest, but by the seeds you plant." ~ Anonymous
One day away from the March for a Mattie Miracle! I can't believe this day is almost here. Back in the Fall, I mentioned to Ann that I wanted to have a walk for Mattie, but I had no idea there would be such momentum behind this event. You have already exceeded my expectations. We look forward to seeing you there, and for those who can't be there with us, we know you are there in spirit.
I called Georgetown today to make a x-ray appointment for Mattie. Catherine, our case manager, helped me secure a prescription for a x-ray, and I contacted Linda immediately. Linda always knows how to get things done. Linda contacted Theresa, the x-ray tech. So Theresa was expecting Mattie. Linda met Mattie in clinic, and promised him a wonderful remote control car for his bravery. Mattie rose to the occasion. What I was happy about was Dr. Myers, the oncologist in the practice today, ordered a script for both an arm x-ray and a right foot x-ray. I was thrilled because to me, something is very wrong with Mattie's right foot. He can't put any pressure on it, and can't stand on two legs. So right now, you can't touch him on his left arm, and he can't stand. I assure you it is like mission impossible transferring him from one place to another, and today my back is killing me. Mattie isn't heavy per se, but when you move him for everything he does, and have to lug the wheelchair around, it wears on you after a while.
After the x-ray was over, Linda, Karen, and I took Mattie back to clinic to wait for the results. Mattie received a wonderful remote control Jeep of his choice. He was very excited, and opened it up in clinic. Linda ran around finding batteries for this Jeep, and when she returned she brought Robbie, a wonderful volunteer and friend of Brandon, with her. Robbie, Mattie, and I did several races in the clinic today. Even the Jeep apparently can move faster than me! Robbie is delightful, and I am so happy he is connecting with Mattie, and will be coming to the Walk tomorrow.
We waited quite a while in the clinic for the results, but Dr. Myers was very busy today, and I decided at 2:30pm to leave and left my cell phone number for the doctor to call me with the results. However, the more I waited the more I worried that something was wrong. So here is the story. Mattie's left arm is fine from a physical standpoint, so I imagine his pain is muscular. The issue lies with the right leg. Mattie has developed Osteopenia. Osteopenia refers to bone mineral density (BMD) that is lower than normal peak BMD but not low enough to be classified as osteoporosis. Bone mineral density is a measurement of the level of minerals in the bones, which indicates how dense and strong they are. If your BMD is low compared to normal peak BMD, you are said to have osteopenia. Having osteopenia means there is a greater risk that, as time passes, you may develop BMD that is very low compared to normal, known as osteoporosis. Mattie will be receiving some sort of supplement once a month to address this issue. The second issue is it appears that Mattie may have a fracture in his ankle. Mattie said that he hurt his ankle during physical therapy on Wednesday. This registered with Anna and myself, so when Mattie complained of pain, I was already clued in that there was a problem. The real test was Mattie actually consumed Tylenol. That doesn't happen unless he is having a real issue. So today, I just about had it. I am worn out from transferring Mattie, and to me there is no end in sight to this. So what has appeared to be a temporary disability, to me is becoming a prolonged one. I also guess a part of me hoped that Mattie would be able to walk by his March, so a part of me is just disappointed.
We took Mattie out to lunch today and he had a good time chatting, eating, and building at lunch. I am happy he can enjoy this normal activity that we used to do. I am also happy to report that the Karo syrup and the Prevacid seems to be working. Mattie is no longer complaining of intense stomach pain! After lunch, Mattie went outside the restaurant to feed the fish in the pond. He loves doing this and watching the fish!
We headed home after a late lunch, and we all played with Mattie's new race track. In addition, Linda's Jeep was the hot item for today. Mattie used the Jeep to knock down his Lego creations. I tried to get an action shot! As the evening went on, Karen continued to play with Mattie. She played race track with him, played a Scooby Doo interactive game, and even read some wonderful pop up books, such as Birdscapes (which is an outstanding pop up book Karen's mom gave Mattie, the bird lover). Karen has been a lifesaver, because I am on overload. I am tired physically and mentally, and I just don't have the energy to play with Mattie tonight.
Peter has had a busy, but energizing day at Ann's house, running chores and helping with the coordination of Mattie's walk on Saturday. When Peter got home tonight, I enjoyed hearing all the details. I am in amazement by what these marvelous volunteers have been able to accomplish. Ann even had a lady from her mom's nursing home helping with the plans today. So it was a great day for people of all ages.As we head into Saturday and Mattie's walk, I have no idea what to expect. I also have no idea how Mattie will take all this attention. Mattie will either rise to the occasion or be totally overwhelmed and disengaged, since Mattie is usually all or nothing. It is my hope that others will understand that how ever he reactions, that on some level he is grateful. But I can't deny that this cancer experience has changed how he interacts with people. Fortunately I know Mattie will also have the support of Linda, Jenny, Jessie, Anna, Brandon, and Robbie tomorrow. These are people who are used to helping Mattie through difficult transitions. As for myself, I have planned conferences in the past and understand the excitement of hosting such an event. But somehow the personal nature of Mattie's Walk makes tomorrow seem in a way overwhelming. One thing is for certain though, it seems impossible to know how to thank all those involved with the planning of this event. It is a labor of love!
We would like to thank the Brandt family for a wonderful dinner tonight from our favorite Chinese restaurant. Thank you for your constant support.
I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "You certainly have planted the seeds of cancer awareness in a significant audience now. I hope that those seeds sprout and produce more funding and support for childhood cancers especially osteosarcoma. I was very impressed with the interview; I thought you and Peter did a great job of presenting the issues with both clarity and passion. I hope we have some sunshine for the march tomorrow or at least, no rain to dampen our parade.”
The second message is from our friend and fellow SSSAS parent, Tad. Tad wrote, "I am proud to know you and Pete and be considered your friend. You honor all of those of us who now fight or have battled cancer by getting the word out and sharing your experience in so many ways. These efforts will reverberate with far more effect than we perhaps sense now. If your blog, your daily caring and speaking about these issues cause even one parent, caregiver, friend or family member to pause at one child's wince and decide to get it checked, and this obtains for the child needed early cancer intervention and care, it is worth more grace and honor than most of our fellow humans can claim in their lifetimes."
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