Tonight's picture was taken in August of 2009. This was the last month of Mattie's life and he was really struggling. On August 5th, Mattie's cancer was diagnosed as terminal. Mattie had been complaining of intense pain and was unable to eat or drink ANYTHING for weeks! Over a month to be specific. I would tell Mattie's doctors this at each clinic visit, but there would be one reason or another to explain away these behaviors to me. Either Mattie was recovering from high dosage chemotherapy, or he had an ulcer, or my favorite was he was manipulating me and the situation and refusing to eat (so as to have the beginnings of an eating disorder). NONE of these theories made ANY sense to me, and I voiced my distaste for all them. I tolerated the first one for a while, because I had no education on the side effects of chemotherapy and it seemed plausible that it could impact Mattie for a bit of time. But not so significantly that he had NO hunger and couldn't keep down water. It was only after I demanded further testing, did we learn that Mattie's (only six weeks off of chemotherapy) cancer spread to his stomach and his lungs. Which meant that Mattie's situation was terminal, since we had exhausted all treatment options in his care.
Quote of the day: Shared joy is a double joy; shared sorrow is half sorrow. ~ Swedish Proverb
Periodically I like to refer back to the blog and reflect upon our history. August 4, 2009, may have been six years ago, but as I read over part of the posting (which I copied below), the recounting of that moment seems so real to me. However, here is the irony of this. I did not need to read it for it to be fresh in my mind. I can recall that day and many other crises along our journey so vividly.
Would it be better to forget about these difficult moments and Mattie's battle with cancer, and only remember the time we had with him in which he was healthy? I don't know. I am sure every parent who lost a child could potentially feel differently about this question. Yet I do know there is a level of guilt that ALL of us who lost a child to cancer live with, which is why I suspect so many of us become advocates. We want to solve a wrong, correct an ill. We will always be captured by the beauty of our child and of course Mattie's memory, but tied to Mattie's memory is his heroic battle with cancer. Not reflecting upon it, and not expressing what he endured and how it impacted us as a family would mean that there is nothing to be learned from our great loss and that Mattie's death serves no meaning. Therefore in celebrating Mattie's life, I believe it is also important to acknowledge and value his cancer journey and what he endured. For what he endured (having two arm bones removed, a leg bone, not being able to walk again, function independently, undergo 9 months of grueling chemotherapy, a sternotomy to remove tumors in his lungs, and be diagnosed with clinical depression, anxiety, and medical traumatic stress), I am not sure the average adult could have managed with any degree of sanity or dignity.
An Excerpt from the Blog (August 4, 2009):
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As I suspected last night was a hard night. Not that any of our nights are easy, but Mattie's stomach pain was out of control. Tylenol did not work, Kytril (his anti-emetic) did nothing, and forget Prevacid! As the night wore on, I saw that the only relief Mattie was going to get was to break down and give him Morphine. I was so thrilled to have all these pain medications behind us, but somehow, this wasn't meant to be. After about 30 minutes post-morphine consumption, Mattie started to slow down. But he was highly anxious, so I decided to lie next to him and rub his head and arm, until he finally shut off for the night. However, after a four hour ordeal of crying and screaming in pain, I was so worn out, yet so strung out I couldn't sleep! Prior to Mattie's illness, I was the best sleeper, now, I am a walking case study. I can't fall asleep, and even if I am asleep, my body is naturally programmed to wake up every two hours. I thank the PICU very much for this new and unhealthy sleep pattern. I remember Mattie's psychiatrist telling me there is a high correlation between children with cancer, and their parents who develop PTSD. I don't have PTSD, and neither does Peter, but I can see definite aspects of it developing in myself. Being on heightened alert, with constant memories of the tortures of surgery and chemotherapy on your child, are indeed hard things for a parent to live through and survive. After Mattie went to bed, I sat in his room, in the dark, and I couldn't fall asleep mostly because that is when my mind goes into over drive. Fortunately for me, Ann and Alison (our manager of the Mattie fund, and our communications coordinator) e-mailed me about things, which kept me engaged, and frankly I couldn't make it this year without technology. It is through text messages and e-mails, that I keep my sanity. Every e-mail I receive and supportive comment means a great deal to me during these lonely and difficult times.
I went through the day today, very concerned about Mattie's stomach. Mattie is virtually eating nothing. Not just today but for the past few days. Between not eating, and his intense pains, I couldn't stand the stress. I left Mattie's doctor several messages today and we eventually connected in the afternoon. Mattie had his therapy appointment with Dr. Biel, his psychiatrist. Mattie looks forward to these meetings, but I could tell Mattie was annoyed at me when I told Dr. Biel about some of my social concerns regarding Mattie. Dr. Biel always meets with Mattie and I five minutes before his session starts. Today, Mattie couldn't wait for me to leave the room, and he found the concerns I was expressing highly inflammatory. Dr. Biel will be meeting with Peter and I alone next week to discuss Mattie's progress and our next steps.
After his therapy session, Mattie started to complain of pain, was getting anxious about the pain becoming out of control, and insisted on going home. Mind you Mattie had a physical therapy appointment this afternoon but he refused to go. I could have forced him, but I could see he was in no physical or mental state of mind for a productive session. I was so overwrought by all of this, I called Peter. Not that I wanted him to say anything, I just landed ranting on the phone. Basically I was more determined than ever that get to the bottom of this stomach issue, because I can't believe the not eating in Mattie's case is psychological. I feel he has a true physical issue going on.
Later this afternoon, Dr. Snyder, Mattie's oncologist, called me. We spoke for over 30 minutes. She shares my concerns, and is taking an aggressive stance about this. Tomorrow I will call to schedule an abdominal ultrasound for Mattie. If this is inconclusive, we will arrange for an abdominal CT scan. In addition, Dr. Snyder is having us consult with a GI physician, who will determine if a potential endoscopy is necessary. Dr. Snyder doesn't feel as if Mattie has an ulcer, based on where the pain seems to be radiating from. Mattie's pain is on the right side, near his rib cage. Dr. Snyder said that if he had an ulcer, he would feel it more on his left side, where the stomach is. She also feels that we need to rule out issues with Mattie's liver and gall bladder. Though all of this is down right scary, Dr. Snyder told me that if Mattie doesn't start eating soon, he will be placed on a feeding tube. She asked me if it made sense to tell Mattie this. I told her I believe being honest with Mattie, and I stick to that conviction, however, I told her that I don't think this potential threat will inspire Mattie to eat. I told her that I as a parent, can't force Mattie to eat when I believe something is physically wrong with him. If all the testing proves to me that nothing is wrong, then I will deal with the psychological issues around not eating. But for now, I am not taking this stance, because in my heart of hearts I feel something is medically wrong!
Dr. Snyder did say that she is sorry I am dealing with this now, because for most cancer patients who are three months post-chemo, things should be on the upswing. I haven't experienced that high yet and frankly wonder if I ever will. I did appreciate Dr. Snyder acknowledging the emotional side of this, which is one of the reasons I find her so unique to her profession.
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