Quote of the day: "The greatest gift you can give another is the purity of your attention." ~ Richard Moss
Mattie had a busy Sunday night. Mattie and Peter worked and completed an 1600 piece Lego set. They created a classic 1960 VW bug. It was actually a tricky set to put together, and at one point all three of us were sitting together to try to figure out how the pieces fit together. You can see the final product pictured below. After Peter and Mattie built the car, Mattie and I then played with it. We got out all his other Lego cars, and created a play scenario for the next two hours. By 11pm, he wanted to go to his room, but of course couldn't shut off and sleep. So we watched a video together and finally I resorted to massaging his legs and head and he eventually fell asleep. It is in quiet moments like this, when Mattie's illness normally hits me. Mattie and I have always loved rubbing our cheeks on our faces together, and because Mattie is an active fellow, cuddly moments can sometimes be few and far between. But I savor these moments when they happen, and recently I can't help but ponder how long will I be able to have these times together? Not a question most parents of healthy children reflect upon. Not I question or doubt I wish upon any of you either.
Recently I was reflecting upon the time I met Peter in college and we started dating. We had many hopes and dreams back then, and of course never in our foggiest imagination would we have guessed how our life would have turned out. I guess I am writing this because that is just it. None of us know what life has to offer us. We are all under the faulty delusion that we control our life and our world, until something traumatic happens to us, and we realize so much is out of our control. So don't wait for the right moment to go on vacation, to make a friend, to hug your child, etc. I have learned the right moment never presents itself, you just need to stop and make it happen. That we do have control over! I woke Mattie up today at 11am. He was very groggy and did not want to wake up but he had two appointments at the hospital and in order to get him there on time, we had to get the process started. He was less than happy with me that we had to head back to the hospital. In fact, he started playing with his toys and gave me a guilt trip that he did not have time to play with me this morning. I felt very stressed out trying to get him ready, pack up snacks, and get to the hospital in time. Eventually I convinced him to work with me, and the planets aligned and we found a great parking space at the hospital. Mattie had an audiology exam this afternoon, and Linda met us at the office. I was happy to see Linda, and it is always helpful to have her assistance on scan and exam days! I was less than thrilled with the audiologist we were assigned. I almost felt that she disliked people and particularly disliked children. She asked me questions about Mattie's health history, and I explained he had cancer, went through 10 months of chemo and two surgeries, but that he had another surgery coming up on his lungs. She asked why, and I had to explain that the cancer spread from his bones to his lungs. It was the way she asked the question that rubbed me the wrong way, and we had this whole conversation in front of Mattie. I thought that was insensitive of her too, because how did she know that Mattie was completely aware of his medical history and upcoming surgery? She did not, but frankly she did not care. She rushed us through the first portion of the exam, and the second portion where Mattie goes into a sound proof booth, I felt was poorly done (and was a very different exam from his previous tests). She shared the results of the exam with me today, but frankly I question the results because of the poor nature of the exam. In fact, Mattie's results from this audiology department show anything but consistency. For example, in December Mattie's tests revealed a hearing loss. Then in February 2009, the tests revealed no hearing loss that was measurable. Today's results indicated a hearing loss in both ears at the higher frequencies, 4000-6000 Hz (which can typically happen with high dose chemotherapies). At first I was upset with this, but then said to myself, how accurate are these results? Then I rationalized this by saying as long as his ability to hear the spoken word isn't affected, then in the grand scheme of things these are great results!
Once the exam was over, she had me wait for the report, which took her about 15 minutes to generate. Fortunately Linda was with me and could take Mattie back to the Lombardy Clinic to play with Jessie and Jenny. There was no way I could have held him captive in that office another minute. When I met up with Mattie in clinic, he was busy working on a swimming pool project with Jenny. They then told Jenny and Jessie about his birthday party! They both oohed and aahhed over hearing about the creepy crawlers at the party. Mattie also ate turkey and drank a half pint of milk while in clinic. That was fabulous! Of course we head back to clinic tomorrow, and Mattie will be able to continue working on his pool project with Jenny and Jessie.
At 3pm today, Linda took us to the pulmonary department so that Mattie could have a pulmonary function test (PFT). I wish Mattie allowed me to take a picture of him, because the set up was priceless. But to do a PFT, you basically have to sit in a glass booth, that reminds me of a phone booth. It is the same dimensions. Mattie sat on a stool in this booth, and had his nose plugged, and a tube placed in his mouth. Mattie did a GREAT job following the technician's instructions, and he did intense breathing for about 20 minutes. The technician was delightful, and at times it looked like she was directing a choir with her hand movements, as she was trying to signal Mattie what to do with his breath through the glass booth. All his breathing was recorded on a computer, and from my very layman's understanding, his breathing looked good. Dr. Synder wanted to have a baseline breathing level, so that she can compare it post surgery. Makes sense to me!
Once all the testing was over, Linda gave Mattie a wonderful gift, a Noah's Arc play set. Mattie loved it and we spent the rest of the afternoon at home playing with it. However, in true Mattie style, Noah wasn't only saving animals two by two. Mattie got out all his plastic bugs, and was saving them and jamming them into the arc. We played for hours with this arc, and then got out the play snakes and frogs that Michael (Ann's son) gave Mattie over the weekend. Each of the frogs had their own island, along with the snakes on our living room rug. I snapped a picture of Mattie surrounded by Legos, frogs, and snakes!
When Peter arrived home, Mattie was happy to see him. We had dinner together, and we want to thank Honey for a wonderful and very generous dinner! Thank you for the balloons and toy car too! We appreciate all your continued support.
This evening, I decided to do laundry, which is not an easy task at our complex. Because our machines are located on a different floor. In order to get to the machines, I have to literally walk outside. Our weather in DC is back to being hot and humid, which is my FAVORITE time of year. I love heat, and as I was walking outside I saw things lighting up. It was the first time I saw fireflies for the season. Somehow seeing these creatures brought a smile to my face. I rarely go outside these days, since Mattie prefers being inside, so doing chores forces me outside. Fireflies remind me of summer nights when I was a child, and it is funny how certain sights and sounds can take you back in time. When I came back inside, I wanted Mattie to come outside to see and enjoy the light show, but he wasn't interested.
As we head into Tuesday, we are going back to clinic for an infusion of MTP-PE. I can't wait to see what reaction we get this time. No infusion reaction is ever the same. I don't do too well with lack of consistency!
I end tonight's posting with a message from my friend, Charlie. Charlie wrote, "Wow, what a wonderful Saturday night and Sunday for all of you. I am so glad that the sleepover went well. This was an amazing gift from Ann and definitely reflects Mattie's trust in her, the great job you've done to reestablish his independence and Mattie's own resiliency. I can hear both the happiness and the sadness in the blog, the first because you are happy Mattie got to enjoy this weekend with friends and that things are the way they should be; the sadness as we move forward toward the surgery that will turn things back (hopefully temporarily) and make Mattie once again a patient and very dependent. Every time I read or write "doing normal things" I am saddened that we have to identify what every healthy child gets to do on a regular day as something outside the scope of Mattie's "regular schedule." I hope we get to a place where these outings are no longer "special" but just part of Mattie's everyday life."
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