Wednesday, August 5, 2015

Wednesday, August 5, 2015 -- Mattie's cancer was diagnosed as terminal six years ago today. 

Tonight's picture was taken on August 6, 2009. The day after we learned that Mattie's cancer was terminal. That day we went back to the hospital to consult with Mattie's doctor about palliative care options, in order to help ease Mattie significant pain. PAIN that he had been having for WEEKS! Pain that should have been dealt with much sooner than it had, but the fact of the matter is no one really could wrap their heads around the fact that Mattie's cancer could come back so rapidly only six weeks off of chemotherapy. Therefore, I have to imagine pain due to cancer wasn't in the forefront of his care team's mind. But it was on my mind. It was on Mattie's mind. So much so that when we finally broke the news to Mattie that his cancer was back, his response was..... "I knew my bone bugs were back, why didn't anyone believe me?" As for this photo, it says a thousand words! Peter and I were separated from Mattie for a period of time to talk with his doctor. Mattie remained with Jenny, Jessie (his art therapists) and Kathleen (in pink, and one of Mattie's wonderful HEM/ONC nurses from the inpatient unit came down to the clinic to support Mattie). After our meeting was over, we walked into clinic to find Mattie and this was when the photo was taken. You can clearly see we look overwhelmed and Mattie was checking out our facial expressions to determine exactly what was going on.  

Quote of the day: Nothing is ever really lost to us as long as we remember it. ~  L.M. Montgomery

Today I went to Georgetown University Hospital for a doctor's appointment. I did not pick this date, the doctor's office did! It was the first available date they could give me, and I waited a month for the appointment. Therefore, I took it. Yet in so many ways, returning to the hospital on August 5th, is like returning to the scene of a crime. Sometimes I wish that certain key dates for us actually meant something to everyone in our lives and the world around us. That these dates did not only matter to us. Taking it one step further, I also wish that these dates could be flagged within Georgetown's system! After all Mattie was treated there, our history is there, and one would think moving forward from a psychosocial standpoint what would help one hospital distinguish itself from another are such personal touches. Wouldn't it be nice if in the Hospital's computer database they just knew key/sensitive dates for us, and therefore understood asking us to come to the hospital on those key dates (Mattie's diagnosis date, his terminal diagnosis date, anniversary of his death for example) for medical appointments would be challenging? I don't know, that seems like a no brainer to me. This isn't rocket science, this is just being human, and performing medicine with a heart. While on campus, I snapped a photo of Mattie's memorial stone. I was captured by the way the shadows played on the stone. Because to me it looked like a sun with its rays. 

Last night, I included an excerpt from the blog dating back to August 4, 2009. Given that today is the sixth anniversary of Mattie's terminal diagnosis, I included another excerpt from the following day, August 5, 2009. This excerpt sheds further light on the chaos, physical pain, unrelenting advocacy, and deep sadness that we lived with CONSTANTLY for months on end. Such memories unfortunately do not get locked and buried away, they remain with us. Which is why acknowledging anniversaries is not only important but part of grief journey. 

-------------------------------------------------------------------------------------------

Excerpt from the Blog on 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!

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.