Wednesday, July 29, 2009

Wednesday, July 29, 2009

Quote of the day: "It is not so much our friends' help that helps us, as the confidence of their help." ~ Epicurus

Mattie had another busy day at home today, full of all sorts of imaginative play. However, unlike earlier in the week, I am just SO tired today, I can bearly keep up with Mattie's energy. Last night, another mom whose child has Osteosarcoma posted a comment onto our blog. Karen described my level of tiredness as, a "bone deep feeling of utter fatigue." I can't think of a better way to describe this all encompassing feeling, that affects my body, mind, and spirit. It is a level of fatigue in which moving, playing, and functioning are all overwhelmingly difficult. Needless to say when I feel this tired and have a migraine, I emotionally feel as if someone sucked the life out of me. I reached the point today that I wasn't sure I even had the energy or was safe enough to drive Mattie to the hospital. My head and eyes simply hurt. We did make it to the hospital and back, but when I got back home, I knew I couldn't drive any more for the rest of the day.

This morning, Mattie created another soup for me to try. He loves this restaurant play scenario we created earlier in the week. So today, he decided he would move away from acorns and rocks, and try serving me bugs. After all I love bugs, don't I?! I took a close up of the "stew" and then of course of Chef Mattie cooking up this surprise. We did this for hours, and also continued playing when we got home from physical therapy.

When it was time to go to physical therapy, Mattie did not want to leave the house. Of course that wasn't an option. He made up every excuse under the sun why he couldn't go. Needless to say, I gave him Tylenol for his supposed pains, and put him in the car. He had a productive session today, but Mattie refused to try to walk, or stand. Tomorrow we will begin his session with walking, in hopes that he will have the energy in the beginning of the session. But Thursday is a MTP day, so I never have great expectations therapy wise on those days. Anna, did get Mattie to do lots of great activities with his arms, and he extended his left arm, passed 135 degrees. Remember the goal is 180 degrees (straight up over his head). However, Anna is going on her honeymoon in a week, and will be gone for three weeks. She is helping me line up therapy with other professionals during that time, but I am concerned naturally to be losing Anna for so long. For Mattie, the rapport with his therapist is paramount. Fortunately I will be bringing Linda (Child Life Specialist) in with me to help transition Mattie to his interim therapists until Anna returns. Where would I be without Linda? I am not sure, but fortunately for Mattie, Linda is very open and willing to assist us even if we are not inpatient! I snapped some pictures during physical therapy today to give you some idea of what Mattie accomplished!

Left: Mattie throwing a weighted ball (about three pounds) to Anna, who is sitting at the opposite end of the mat.

Right: Mattie rolling a barrel up a ramped mat. Anna is holding both Mattie and the barrel, but Mattie is indeed building up his arm strength as he pushed this barrel up the ramp.

Left: Mattie pushed the barrel off the ramp, and onto the floor. On the floor were plastic bugs, so the goal was to push the barrel as hard as he could to squash the bugs. A great motivator for Mattie!

Right: Mattie using his legs to roll the barrel down the ramp.

Left: Mattie wanted me to take a picture of this creation he made today. Mattie loves Anna's bunny bowling pins. Notice the "king" bunny pin that is front and center. Mattie particularly LOVES him! Any case, in the previous picture you saw Mattie rolling the barrel down the ramp with his feet, well he was rolling it down the ramp to knock over this bunny pin creation at the bottom of the ramp!

After therapy, Mattie and I headed home and played a while. But while I was playing, I could feel myself shutting down. So I connected with Peter and told him that when he got home, I would have to lie down. Despite Peter being tired too, he did mobilize forces and has been working with Mattie now for hours. While they were playing, I went to lie down, and two hours later woke up. I still feel very tired, and two hours went by as quickly as 20 minutes.

As we head into Thursday, Mattie has his clinic appointment and will be receiving MTP-PE. Mattie has a busy day in clinic planned, and we are very happy that his buddy, Jocelyn is coming by to play with Mattie. In addition, Bob Weiman, Mattie's head of the lower school, is also coming to perform a magic show in the clinic with Mattie's help. Bob wrote me a very touching e-mail the other day that said in essence that we wants Mattie to experience people staring at him for a positive reason (because he will be performing some great tricks) rather than because he is a child with cancer. I am solidly behind anything that empowers Mattie and builds up his self esteem. Thanks Bob!

We want to thank the Ferris family tonight for a wonderful dinner. We all enjoyed it. We can't thank you enough for all the lovely gifts too! The t-shirt that you brought Mattie back from your trip to China was extremely thoughtful. Thank you for thinking of him across the Pacific! I know he will enjoy the Knex ferris wheel as well! We appreciate your family's love and constant support!

I would like to end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "I am sorry that you spent so much of Tuesday in pain from your migraine. I don't know how anyone with a migraine functions at all; it always seems the pain is so overwhelming. Unfortunately, Mattie is currently functioning in a way that 95% of the time is about his own needs and wants, only occasionally is he able to move out of that situation and acknowledge someone else's. I think part of that may be that he knows how dependent he is on you and Peter so any illness or weakness in you frightens him terribly. This maybe part of why he refuses to leave you to rest when you so clearly need to do so. I know you are going out of your way to make Mattie's time away from the hospital and treatment fun and memorable and that it hurts you a lot when he cannot or will not acknowledge that; this is much like the situation where he was with Peter and had a good time but his report of it was that he did not. Try not to overreact to what Mattie says, watch how he acts and enjoy his smiles and laughter. Perhaps Dr Biel can shed some light on this but it almost seems as if Mattie needs to deny that he is enjoying himself when he goes out with friends. Several reasons come to mind but since I am not the one working with him, I don't know about the validity of those thoughts. However, it is clear that he does enjoy doing things once he starts and you need the interpersonal connections as well so keep doing it."

The second message is from my friend, Mary M. Mary knows that I am up late most nights. I can't tell you how nice it was to receive her message at 1am. It made me feel like I wasn't the only one up at that hour and worrying about my situation. Thank you Mary for writing, and understanding the complexities of the night. Mary wrote, "It's almost one in the morning, and I'm wondering if you are up, as you are so many nights. I woke up in the middle of the night (like I do many times) and as I do on those nights, I think of you, Peter, and Mattie and I check the blog. Tonight, after reading about your day and your ABBA experience, I wondered how you managed to go to Wolf Trap when you were so tired and had a terrible migraine. I resist going there because it makes for a long night, when you include the drive out there, etc. Somehow you managed to go and even have fun! I love ABBA too and I don't think I will ever be able to listen to ABBA without thinking of Mattie. If you are up tonight, I hope you know you are not alone with your worry about Mattie. I think it's hardest at night, when it's dark and everyone is asleep. It's easy to go to the very darkest places. At those times (day or night) when you are feeling very scared, I hope it helps to know that there are so many people who are scared with you. We are all praying for Mattie to have the outcome of the young man in the video who climbed those mountains. Life is full of miracles, as that video proves. Mattie may be one of them."