Tonight's picture was taken in August of 2008. We were home from the hospital, which was a rare occurrence, and Mattie decided to create a big face made out of a cardboard box. Mattie loved cardboard boxes and he had quite an imagination with them. He created a haunted house out of a box, an apartment building with its own elevator, a car, a boat, a plane, a house, and the list went on! This was classic Mattie and his art therapists and child life specialist caught on quickly. They would save all sorts of packing boxes for Mattie, because they knew he would enjoy working on them in his hospital room. Thank goodness for these creativity projects, as they kept us all sane.
Quote of the day: The purpose you wish to find in life, like a cure you seek, is not going to fall from the sky.... I believe purpose is something for which one is responsible; it's not just divinely assigned. ~ Michael J Fox
Today was a day both Peter and I were agitated. Peter most likely understood why since he is more clued into dates and time than me. Unless I am looking at a calendar, I truly am not always oriented to days on the calendar. However, as I sat down to write tonight's blog, I looked at the calendar on my computer. There low and behold was today's date.... August 5th. This is a day that neither Peter nor I shall ever forget. Why? Because on August 5, 2009, we learned that Mattie's case was terminal. Cancer had spread throughout his body, only six weeks off of chemotherapy. I remember the shock and horror of the day so vividly, and whether you believe it or not, the reverberations from that day 8 years later still affect our lives today. So much so that neither one of us was quite right today. Now I know why.
Earlier in the week, I got an email notification from the Kennedy Center for discounted tickets tonight or tomorrow night for the King and I. Without thinking I got tickets for tonight's show. Again, totally not paying attention to what the actual date is today! If I was cognizant of the date, I would never have chosen to go to the musical tonight. As I take anniversary dates seriously. When I was a child, my parents used to take me to all sorts of musicals. I loved the stories, the music, the grand sets and costumes. This was something I always hoped to share with Mattie. Unfortunately Mattie did not live long enough for this to happen. Which of course saddens me deeply. As I go to the show tonight, I have mixed feelings and I am upset with myself that I booked something on a date that changed our lives forever.
To put today into context for you, I have copied and posted the blog from 8 years ago below.
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Blog Posting from August 5, 2009
Tonight, I write with a heavy heart to let you know that Mattie's fight is coming to an end. We learned today, after I insisted on an ultrasound and an abdominal CT scan, that Mattie's cancer has spread back to his lungs, as well as his liver and stomach. It is everywhere! This is a fast moving disease in Mattie, because you will remember he had a sternotomy in June, and every known osteo lung tumor was removed at that point. Almost two months later, there are tumors everywhere.
Mattie has been complaining of stomach pain since May. In May, we started running tests for an ulcer, but as many of you know, we did not get the test results back until last week. Part of me wishes we did an ultrasound and abdominal CT scan in May, but then again, that most likely wouldn't have changed the outcome of things. One thing is certain though, I know my son. I stuck to my convictions that something medically was wrong with Mattie and that this was the explanation for him not eating and drinking. This wasn't a psychological issue, and I knew this in my heart of hearts. Clearly today, medical science confirmed what a mother's love knew all along. I just wish medical doctors would listen to us more often! When I called the hospital this morning, they told me they couldn't fit Mattie in today for testing, so I booked an ultrasound for Friday. Then Ann called me and she asked me in a nice way, what I was doing about this scheduling issue? I am not sure if I gave up the will to fight or was just exhausted, since I would have challenged this testing delay in the past. But the more I thought about what Ann was saying, the more I realized I had to mobilize forces and advocate once again to get this testing done today. Thank you Ann for the courage and support to do the right thing.
I also want to acknowledge Linda (Mattie's child life specialist) today. She helped me every step of the way, getting the ultrasound and CT scans done, quickly and timely. After all I did not have appointments for either, we were add ons. But Linda can make anything happen at the hospital, and I can't say enough about how much she means to us.
Today, I fought every step of the way to make sure Mattie not only received an ultrasound, but a CT scan. Mattie's doctors did not feel he needed both, of course, until a large mass was spotted in the ultrasound. So in essence Mattie went through an ultrasound (smoothly thanks to Linda, and his DS player - something he never plays with, but it caught his attention today) first. I started getting very edgy during the ultrasound, because the tech asked Linda what type of cancer Mattie had. I thought that was a telling question to ask during the test and this prompted my immediate attention and concern. I couldn't shake that question all afternoon. After the ultrasound, Mattie and I sat outside the hospital in the rose garden and had lunch. Normally Mattie doesn't want to sit still, but today was different. He had me telling stories about his baby years. I retold the story of how he was born, how he learned to sleep, walk, and talk. None of these things came easy to Mattie, but he learned them, and through these struggles, Mattie and I became very close. When my mom describes Mattie as an extension of me, she isn't kidding! This is a fair assessment! The conversation in the garden today was so special, loving, and priceless moment between us, which I will never forget. Unfortunately this moment, was disturbed when the doctor called to tell me she saw a mass in Mattie's liver, and would need to do a CT scan.
When we got home, the doctor called us with the news. She actually did not want to tell me over the phone, but there was NO way I was going to wait until tomorrow. Needless to say, Peter and I are devastated. As you know, I follow the story of Sammie, a young teen with osteosarcoma in California. She too is dying from this hateful disease, and I always marvel how her family is managing and supporting Sammie. I always feared that Mattie was going to die because of the severity of his illness, but to some extent I lived with some hope. Today the hope within me is dead. I do not know how Peter and I will handle Mattie's disease progression and pain, nor do I know how you live without your child? It goes against the laws of nature to see your child suffer and die before you. Part of me is in shock and not in touch with my emotions yet. Which makes writing tonight very difficult.
Peter and I spent the evening sitting in silence and occasionally walking around. Caring for Mattie tonight was truly challenging, since our minds and hearts are racing. Mattie doesn't know about his disease progression. I haven't figured out how to proceed with that, so for now, I would appreciate this not be discussed around Mattie. After all, he gave the fight of his life this year, and now was supposed to be the recovery time. In fact, today, he told me he misses walking, and wants to walk again. This whole day is heart breaking, and I can't get over all we put Mattie through just to get to the point which we most feared. The words of Sloan Kettering come back to haunt me, as they always will. Sloan felt that Mattie's disease should NOT be aggressively treated since he was most likely going to die. Funny, how I thought that perhaps all our efforts could change the course of Mattie's future. What I have learned through all of this is we humans control very little. We only delude ourselves into this false complacency.
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