Quote of the day: "The power of love to change bodies is legendary, built into folklore, common sense, and everyday experience. Love moves the flesh, it pushes matter around.... Throughout history, "tender loving care" has uniformly been recognized as a valuable element in healing." ~ Larry Dossey
Charlie wrote, "I know it seems to you that Mattie is taking a long time to heal but to me it seems nothing short of a miracle. Last summer, the folks at Sloan Kettering were suggesting that you take him home for the time he had left and now, less than a year later, he is up and moving about on his affected leg, using both of his hands and making social and emotional strides that any of us would be proud of. It is due to the ongoing "tender loving care" of you and Pete with the help of the Mattie team and the wonderful staff of Georgetown. The value of love in healing is so obvious to all of us who read the blog; I can't imagine what things would be like without it."
I am just not in my happy place today. When I was getting Mattie dressed this morning, I noticed that his left arm was twisted again in the shape of the letter L. At first I thought he was joking with me, because he was fine all weekend, and in fact, went to bed and was fine. But when I asked him to touch his tummy with his left arm, I could see that he just couldn't do it. So I called Dr. Bob even before I finished packing for the hospital. Bob said that Mattie's arm would need to be derotated again this week. However, I felt the need to know more about this arm and what the future of this arm would look like, so I kept asking Bob questions. In essence the only true way to stabilize Mattie's left arm is to go back and do surgery on it. However, surgery can't be done now until the chemo is completed, which will not be until mid-May (and MTP-PE, which is considered a liposomal antibody, will be completed in September). The reasoning for this is that surgery and recovering from surgery prevents Mattie from being able to receive chemo, which would not be wise at this point in time. The thinking is that Mattie tore through the formed scar tissue in his left arm when he pulled on our hotel blinds in New York City two weeks ago. So naturally I have spent the entire day beating myself up for this, because I should have watched him more carefully in the hotel room, and I should not have allowed him to play around with the blinds. It is a hard call being the mom of a child with cancer. I have the need to protect Mattie, but I also understand he is a curious 6 year old, who likes to know how things work and operate. So I allowed him to explore our hotel room, and to move around in the room, but now I see that if I prevented him from doing some of these things he may not have torn through his scar tissue (which destabilized his arm at the shoulder socket, which is why the prosthetic is rotating). So I have been working through this today, plus the sad fact that Mattie will need further surgery once chemo is completed. I hate to admit it, but the past few days I have been thinking we are on an upswing and that perhaps there would be an end for us soon. Of course I realize this is delusional thinking in a way, because once you have cancer, especially multifocal osteosarcoma, you will always be dealing with cancer. The question is just when! When Mattie's arm rotated again today, it set me back about 10 steps. I just feel in a way defeated, that there is so much out of our control.
I also asked Bob about the reported calcification in Mattie's right arm that showed up on the x-rays last week. The radiology report indicates the calcification and that this could be further evidence of disease. I asked Bob about this, but Bob seems to think the coincidence is too high between the time of surgery and the appearance of the calcification. Despite hearing this, it is still on my radar scope. So it is funny how you can feel somewhat happy and hopeful one day to being right back to square one the next. So sometime this week, Bob is visiting us to derotate Mattie's arm and we are going to attempt to do this without sedation.
Peter helped Mattie and I get to the hospital today. Peter carried all of Mattie's things to his room and then had to go to work. Peter knew I was in a state today, so he really tried to lighten the mood and ease my tensions. Miki was Mattie's nurse and she started MTP-PE at around 1pm. Mattie handled that administration beautifully. Mattie had a ton of visitors today: Linda, Jenny, Jessie, Anna, Meg (Linda's intern), and Liza (one of Mattie's favorite volunteers). Liza and Mattie did many wonderful projects together. The first project was transforming Mattie's room into an archeological dig. We put a sheet down on the floor, and both Mattie and Liza were wearing googles. They were working hard on digging for stegasaurus bones. They were very successful! Liza read to Mattie about dinosaurs as he was digging. Liza and Mattie also played with cars and planes and they had a good time together. As he moved along to legos, he wanted to have some time with just me, and he asked Liza to leave. Liza handled this well, and we are happy that Liza is now volunteering on mondays instead of saturdays.
While Mattie and I were building with Legos, he had a visit from Anna (his PT). Anna paged Linda, and all three of them started playing and Anna had the opportunity to watch Mattie and to try to have him stretch his leg. Anna and I are strategizing ways to straighten Mattie's knee, and for keeping his left arm from rotating. It is my thinking of making Mattie wear a sling to bed for his left arm, and a leg immobilizer at night for his right leg. To me, Mattie's right knee just doesn't look normal, and he has it frozen in a bent position. So I feel the need to take night time measures. Tomorrow, Anna, Linda, and Dr. Matt (Mattie's psychiatrist) are going to work with Mattie on walking and the fears associated behind walking. I am happy that they are all teaming up together.Later in the afternoon, Mattie had a visit from Jenny and Jessie. Jenny and Jessie are helping me generate ideas for our osteosarcoma stamp. This is a real challenge. There is so much we want the stamp to capture, yet it has to be catchy and simple. Any case, Peter and I are brainstorming ideas. But if our Mattie readers have ideas, please do not hesitate to e-mail them to me or post them on the blog. I would appreciate the insights. Jenny and Jessie googled osteosarcoma today and they couldn't get over how little attention it gets. Which of course is part of the problem! Jenny stayed and worked with Mattie on creating a cardboard house for Mattie's hornet. Mattie made a hornet out of a yellow balloon. Linda gave Mattie a set of balloons today that he can blow up, twist, and transform into animals. Mattie had a good time with Jenny and he even created a marker picture of the hornet on a piece of canvas that he placed in the hornet's house for the hornet to appreciate. Got to love it!
Somehow even with all these lovely ladies who came by to help me with Mattie today, I am still exhausted and we just started methotrexate at 8pm. So the yellow highlighter medicine will infuse for four hours, and then every four hours thereafter we will be capturing urine for Mattie. The problem with methotrexate though is the large amount of fluid that is pumped into Mattie to flush out his system post infusion. It literally leaves Mattie running to the bathroom every hour. So there is no peace this week. At the moment, Peter is working hard on building legos with Mattie. Mattie is relentless. He wants a constant play companion. I am not sure how Peter does it. He works a full day, and then comes from work and works an intense evening at the hospital. When I met with my colleague this weekend, who is a mental health professional, her question to me was when am I planning on breaking down? Don't know, good question! But what scares me with this disease is it too is relentless, and I would love to hope that this is a one shot deal (treatment and then recovery), but I am also a realist. I think the left arm set back today makes me further reflect on the reality of our future.
We want to thank the Bentsen family for a wonderful lunch today. I loved the soup, salad, and chocolates. Mattie ate all his chicken in his happy meal and drank most of his shake. Mattie loved the happy meal toy, because it was a toy from the movie "Hotel for Dogs." The fresh mozzarella was GREATLY appreciated too! You have saved me running around during the week. But what Mattie really loved was the Chinese New Year gift that Tamra enclosed with lunch. There were some plastic fish inside the gift that tell you your fortune. Mattie's fortune revealed that he is passionate, Peter is the same, and apparently I am jealous. Got to love it, certainly there is a lot for me to be jealous about. Perhaps their is a lot of truth from these plastic fortunes. Thanks Tamra for the lovely lipstick holder too.
We want to thank Sara tonight for a lovely dinner. Mattie ate an entire small pizza and we loved the salads and dumplings! Thanks for supporting us. I would like to end tonight's blog with a true story my mom sent me. We all need more Kurtis' in our lives, don't we?!
KURTIS THE STOCK BOY AND BRENDA THE CHECKOUT GIRL
In a supermarket, Kurtis the stock boy, was busily working when a new voice came over the loud speaker asking for a carry out at register 4. Kurtis was almost finished, and wanted to get some fresh air, and decided to answer the call. As he approached the check-out stand a distant smile caught his eye, the new check-out girl was beautiful. She was an older woman (maybe 26, and he was only 22) and he fell in love. Later that day, after his shift was over, he waited by the punch clock to find out her name. She came into the break room, smiled softly at him, took her card and punched out, then left. He looked at her card, BRENDA. He walked out only to see her start walking up the road. Next day, he waited outside as she left the supermarket, and offered her a ride home. He looked harmless enough, and she accepted. When he dropped her off, he asked if maybe he could see her again, outside of work. She simply said it wasn't possible.He pressed and she explained she had two children and she couldn't afford a baby-sitter, so he offered to pay for the baby-sitter. Reluctantly she accepted his offer for a date for the following Saturday. That Saturday night he arrived at her door only to have her tell him that she was unable to go with him. The baby-sitter had called and canceled. To which Kurtis simply said, "Well, let's take the kids with us."She tried to explain that taking the children was not an option, but again not taking no for an answer, he pressed. Finally Brenda, brought him inside to meet her children. She had an older daughter who was just as cute as a bug, Kurtis thought, then Brenda brought out her son, in a wheelchair. He was born a paraplegic with Down Syndrome. Kurtis asked Brenda, "I still don't understand why the kids can'tcome with us?" Brenda was amazed. Most men would run away from a woman with two kids, especially if one had disabilities - just like her first husband and father of her children had done. Kurtis was not ordinary - - - he had a different mindset. That evening Kurtis and Brenda loaded up the kids, went to dinner and the movies. When her son needed anything Kurtis would take care of him. When he needed to use the restroom, he picked him up out of his wheelchair, took him and brought him back. The kids loved Kurtis. At the end of the evening, Brenda knew this was the man she was going to marry and spend the rest of her lifewith. A year later, they were married and Kurtis adopted both of her children. Since then they have added five more kids. So what happened to Kurtis the stock boy and Brenda the check-out girl? Well, Mr. & Mrs. Kurt Warner now live in Phoenix Arizona, where he is currently employed as the quarterback of the National Football League Arizona Cardinals. Is this a surprise ending or could you have guessed that he was not an ordinary person. It should be noted that he also quarterbacked the Rams in Super Bowl XXXVI. He has also been the NLF's Most Valuable Player twice and once the Super Bowl's Most Valuable Player. And, on February 1, 2009 he will lead his Arizona Cardinals into the SUPER BOWL.
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