Tonight's picture was taken on August 5, 2009. The day we learned that Mattie's diagnosis was terminal. Six weeks off of chemotherapy, Mattie's cancer spread to his lungs, liver, and stomach. Which explained why Mattie couldn't eat or consume fluid. I also will never forget how Mattie's doctors felt that he was either manipulating me or had a psychological issue. Rather than contending with the reality all along, and that was that the medicine failed him, and his cancer had metastasized. I will never forget taking this photo. We went to the Hospital gardens to get a break from testing and hearing results. It was a snapshot in time, in which it captured the only happy moment we had on August 5, 2009.
Quote of the day: The weird, weird thing about devastating loss is that life actually goes on. When you're faced with a tragedy, a loss so huge that you have no idea how you can live through it, somehow, the world keeps turning, the seconds keep ticking. ~ James Patterson
As today marks the tenth anniversary of Mattie's terminal diagnosis, I thought I would re-post a portion of the message from August 5, 2009's blog. You will find it below. Two things quickly come to mind after reading this posting, and that is 1) Doctors were quick to conclude that Mattie's issues were psychological, when indeed they were really physical. Never listening to my mother's intuition.
2) The blog was clearly read by hundreds and sometimes thousands of people in any given day while Mattie was in active treatment. So much so that in my message below, I ask that our support community not share with Mattie his terminal diagnosis, until we figured out how to tell him. To me that speaks volumes about the power of the blog!
Recently I was contacted by a National Cancer Institute researcher. She wants to nominate me to sit on a NIH pediatric cancer solid tumor steering committee. I am hesitant about this because the sole focus will by on medical research. Not that this doesn't interest me, but I think the committee needs to understand what my mission is, before they want to sign me up for this for three years. Certainly I can read about medical trials and provide commentary, but they have to understand my lens will be looking at trials with a social, emotional, and quality of life focus. Let's be honest, the medical treatment for Osteosarcoma hasn't advanced AT ALL since Mattie's death. Medicine is still using drugs from the 1950's and 1960's. Keep in mind that Mattie died almost ten years ago! Pitiful no? Which may help to explain why I choose to spend my time on actively helping children and families HERE AND NOW. Not decades or a lifetime from now.
--------------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.
I also want to acknowledge Linda (Mattie's childlife 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.
Mattie seemed concerned that he had to take an unscheduled CT scan later this afternoon. He had to drink a contract dye, and then also had to have one injected through his central line. The prospect of the injected dye sent Mattie into a state of anxiety. He did not want to do the test, and it took a great deal of effort and calmness to talk him through the process. Peter left work today, so he was with me, and Linda also came to provide assistance. Linda is great at managing the techs, who clearly need managing. This tech had no empathy or understanding for what Mattie has and continues to go through. She was in fact annoyed that he wasn't complying with her instructions. Linda removed the tech from the room, and I basically had to give Mattie a pep talk so that he would tolerate the test. I told him I knew he was scared, that he did not want to go through the CT scan, but I had confidence he could do it. I told him there is nothing he can't do if he puts his mind to it. He eventually settled down and the test was completed.
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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