Wednesday, August 5, 2009

Wednesday, August 5, 2009 - Today our world changed forever!

Quote of the day: "Oh, the comfort, the inexpressible comfort of feeling safe with a person, having neither to weigh thoughts nor measure words, but pouring them all out, just as they are, chaff and grain together, certain that a faithful hand will take and sift them, keep what is worth keeping, and with a breath of kindness blow the rest away." ~ Dinah Craik

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 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.

I snapped a picture of Mattie in the gardens today and at physical therapy. He had an abbreviated session, but did get up and walked, which is amazing considering he was in pain.

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.

Ann came over tonight to play with Mattie, so that Peter and I could just let this news be absorbed. Despite the fact that Peter and I feel like we have been hit by a truck, Mattie had a wonderful time with Ann. He loves his water play (in fact I found him washing one of our Victrola records), and then he and Ann built a barrier to keep Peter and I out. I know Mattie's news hit Ann hard as well, since she has been my force of Hope throughout the entire year. To some extent it is hard to admit or accept defeat, and we have to pause and figure out what are the next steps in Mattie's care. Peter and I can't thank Ann enough for sitting in this with us, and accepting us in whatever state she found us in tonight.

Peter is coming with me tomorrow to the hospital, so we can discuss options of care, and how long Mattie has to live. I just can't believe I am even writing this.

I end tonight's posting with two messages. The first message is from my friend, Charlie. Charlie wrote, "Unfortunately, it really doesn't take much to throw many adults off of a sleep schedule and once that happens it is very difficult to resume any sort of normal rhythm. I know it is awful to lie awake in the small hours of the night and think about the "what ifs." All the advice in the world seems to pale in contrast to the very stark issues you are facing with Mattie right now. I have to say that I agree with you that it is very possible that Mattie has a physical reason for his abdominal pain and refusal to eat. I hope that the problem can be found and resolved quickly so that Mattie can begin to enjoy eating and gain strength once again. I realize that in addition to this being a major obstacle to Mattie's recovery physically, it is also an emotional issue for you as it would be for any of us who are moms. All mothers want to provide good nourishment for their children, to be unable to do so is a tremendous problem and can make you feel as if your mothering skills are inadequate. This could not be further from the truth; Mattie is currently surviving on your love and emotional strength; I truly don't know how he's come this far in recovery with these digestive problems plaguing him. I pray the doctors find the source of the difficulty quickly and that the answer is one that is easy to implement and gives both you and Mattie quick relief so that he can begin to eat and grow in strength."

The second message is from my mom. My mom wrote, "I have no doubt that you are suffering from some effects of PTSD as I feel afflicted by the same syndrome every time I read the blog and vicariously experience the HELL you are living through. It is very easy to offer armchair advice from a safe distance away from the situation you contend with daily, but living "in the trenches" as you are, there is no clear pathway to the goal of restoring Mattie back to good health that has been tried before and proven to work.. Just when you think you have a workable plan to restore Mattie back to good health, new complications arise and must be immediately addressed. You discover through your experiences that there are unintended consequences in the original treatment plan that can not be controlled and that are serious enough to interrupt the functioning of the body''s healthy organs and cause chronic long term problems. Suddenly the targets that once seemed so reachable require modification or must be delayed to attend to other more immediate health threats . Since you have NO control over medical events or any of the side effects of chemo and drugs, you are at the mercy of a landscape that can change unexpectedly and a roadmap that remains forever elusive. It would be wonderful if every step was predictable and easy to follow as ABC but that is not the reality of cancer. You have done an outstanding job of staying on top of things no matter how treacherous the pathway ahead. So remain alert, avoid the pitfalls and take all the necessary detours you must till you once again find the magical " yellow brick road" that will give Mattie the best possible chance to be healthy and lead a normal life., If anyone deserves to be like Dorothy in "The Wizard Of Oz" it's you!"