Quote of the day: "The smallest deed is better than the greatest intention." ~ Unknown author
Mattie and I headed to the hospital today and we arrived around noon in the clinic. Mattie was greeted by Jenny and Jessie and as soon as his vitals were taken and his blood was drawn, he headed to the art table. Mattie at first wasn't sure what he wanted to do, but then he spotted a cross stitching hoop in one of the art boxes. One thing lead to another and he used the hoop as the door into the space ship he created. In addition to designing a space ship out of a cardboard box, he also designed his own space aliens. This took on a life of its own today, and in fact, two other children came over to play with Mattie and the space ship. Of course no play scheme would be complete in the clinic without Mattie's pretend character Pinkie and his other creation, Nanny Nobody. Nanny Nobody is who you call when all else fails, and Pinkie needs to be disciplined and reined in. Jenny and Jessie played with Mattie for some time, and then they said their good-byes and headed to their conference in Tennessee.
However, the good news for Mattie was that Meg (one of Linda's former childlife interns and Mattie's racing buddy) came in today to play with him. I have asked Meg to work with us for the next two weeks while she is in town. It was delightful to have Meg around and she stepped right in, played intensely with Mattie, and did not skip a beat. Meg even helped me while Mattie was getting an x-ray today! Her help was invaluable, because while she is focused on Mattie, I can oversee what is happening and going on with his treatment. Dr. Bob ordered an x-ray today of Mattie's arm. The irony is Peter and I have noticed over the past couple of weeks that Mattie's left hand is angled toward his body. He can't straighten out his hand, with his fingers pointing away from his body. I made a mental note of it, but I figured this is the result of a bone graft and just chalked it up to that surgery. Frankly with everything else we are dealing with, I never gave Mattie's left hand much attention until the x-ray results!
Linda came down to the clinic to say hi to Mattie and I told her about our need for an x-ray. Linda mobilized forces and helped coordinate things for us so that Mattie could get an x-ray before his favorite x-ray tech, Theresa, left for the day. The right tech can make a huge difference for Mattie. This took coordination because we were unable to check into the hospital until after 3pm. There were no beds available. So we camped out in clinic for several hours before we could be admitted. Dr. Synder even gave me the option of starting chemo on Monday instead of today, but when I pulled out the calendar, I realized we really had to start today, otherwise, Mattie may not be healthy enough to attend his own walk.
Dr. Synder was very attentive and helpful to us today. She spoke with me in clinic about Mattie's pending surgery, and answered some of my concerns that I have been reflecting on. When Peter and I met with Dr. Chahine, he mentioned that he wouldn't recommend lung surgery if other primary tumors appear on the CT scans post-chemotherapy. This piece of information has been whirling around in my mind. At first I did not think much of it, other than what he was saying was a fact to consider. But as time passed, I thought perhaps he knew something from Mattie's scans that I did not. So I asked Dr. Synder about this. Dr. Synder said that Dr. Chahine was concerned about Mattie's most recent right arm CT scan. You may recall that the last time Mattie's scans were done, the nuclear medicine doctor practically gave me a heart attack. He couldn't understand what he was seeing, so he had the tech continue to do more bone scans on Mattie. It turned out that the worry was over calicification, which Dr. Bob has explained to me is a very normal reaction to such a limb salvaging surgery. Needless to say, I think Dr. Chahine's comments were reflective of this concern, but we all defer to Bob's expert opinion on the right arm, and so for the moment, I have to believe that Mattie has no other primary bone tumors.
Later this afternoon, Dr. Synder found me and told me that the radiologist who read today's x-rays feels that Mattie has fractured a bone in his left wrist, which could explain why his left hand is twisted inward. None the less, Mattie's arm pain, from sliding out of his wheelchair, is not down by his wrist. The rest of Mattie's arm x-ray was normal. I called Bob immediately, and Bob wants to examine Mattie tomorrow to determine the status of things. However, Bob looked at the x-rays from his hospital across town, and his initial feeling was that the bone wasn't fractured. Dr. Synder did observe Mattie playing today, and Mattie can handle great pressure on his left hand, and she felt if he had fractured a bone, he wouldn't be able to tolerate the games he was playing.
What was Dr. Synder observing? Well this afternoon, Anna (Mattie's PT), Sarah Marshall (Mattie's wonderful HEM/ONC nurse), Meg, Chrissy (the dance therapist), and of course Mattie acted out the Eric Carle story, The Very Hungry Caterpillar. It was a wonderful sight to see. Mattie loves the story, and he had a great time acting it out. The funny part was he was so engrossed with the story, I am not sure he realized he was moving his body, his arms, and even taking a few steps WITHOUT the walker! I snapped some pictures of this art in motion.
Left: Chrissy gave everyone tissue paper butterfly wings which are attached to their backs. Here you can see the caterpillars inside their cocoon, waiting to emerge as butterflies.Right: The Mattie butterfly has emerged, and is taking butterfly steps with Anna and Meg.
When Peter arrived at the hospital after work, he brought all our things from home. I began to unpack Mattie's room, and then I went to pick up dinner for us. Peter headed home tonight, and I am at the hospital with Mattie as he gets an infusion of high dose Methotrexate. I am thrilled to report that Mattie started chemotherapy at 5pm, rather than 10pm. This occurred because Mattie's nurse in the clinic had the where with all to start him on an IV hydration that included bicarbonate to help make his urine basic. Mattie's urine pH must be around 8 in order to qualify to receive Methotrexate. Typically it takes Mattie six hours once he is admitted to the PICU to reach the appropriate pH, but since this hydration was started in clinic, by the time he checked into the PICU, he was ready to go. Fabulous. So tonight, I will be playing the urine capturing game. Methotrexate is a VERY high maintenance drug, because Mattie's urine must be monitored every four hours and then his blood must be taken every day to assess how the Methotrexate is leaving his body. To qualify to be discharged from the hospital, Mattie's blood Methotrexate level must be .1 or below, this usually takes Mattie four to five days to achieve. In order to flush this drug from his body, he is placed on very large amounts of fluid. So he is going to the bathroom every two hours. So consistent with my life, there will be no sleep tonight. I can't wait until tomorrow night. Friday and Saturday are my OFF nights, and Peter takes over. I need a night of sleep, as the week wears on and I don't get consistent sleep, my migraines get worse, and I feel more and more weak. Thankfully, Meg is coming back to help me tomorrow! At the moment, Mattie is playing with a wonderful educational toy Linda gave him today. It is a word, letter, and number electronic tool, in the shape of Wall-E!
Peter and I want to thank all of you who are pre-registering for the walk. We want to thank you for passing along the flyer and the website to your friends and family, and having them support Mattie. We are touched by your kindness and generosity. In fact, I received a lovely e-mail today from Mary D. (a RCC mom and now friend). Mary let me know that she and her two lovely daughters went door to door to local restaurants and businesses today to advertise Mattie's walk. They handed out flyers! If this is not the epitome of community spirit and support, I don't know what is. Thank you Mary for sharing your story with me today. It means a great deal! We also learned today that Mattie's walk is listed on the HEM/ONC nursing calendar, and we hope many of these fabulous nurses will be able to be at the walk. I know you have read about these incredible ladies for months now, and you deserve to meet them in person, along with Linda, Anna, Jenny, and Jessie.
I end tonight with a message from my friend Charlie. Charlie wrote, "What struck me most about Wednesday's blog was how even the best days have upsetting or down sides to them. I think it was wonderful that you had time to get out and run errands, however in a normal life, none of us would remark on that. Whitney's gotten her first job (truly something to celebrate) but it means she will be moving on and no longer available to be with Mattie on a weekly basis. Every positive has its matching downside. I read how you connected the film to cancer as the hunter and bodies (i.e. Mattie) as the hunted. I definitely see that connection but I also see the hunted in this (i.e. the doctors) setting traps for the hunter and working to reverse that equation. The traps and snares may still be inefficient but progress is being made and hopefully their efforts will pay off for Mattie. And lastly I would like to note the thoughtfulness of Jenny and Ruby which went above and beyond for Mattie. Most of us would have stopped at the effort to open the shop and when that did not work, would have said, "I gave it my best" but they found a pin and a cap so that Mattie did not have to go home empty handed and the event ended on a very positive note rather than on a negative one. This is so important when you are making life memories. Thank you to these special people."
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