Tuesday, August 5, 2014 -- Mattie died 256 weeks ago today. Today is Mattie's terminal diagnosis anniversary day.
Tonight's picture was taken on August 5 of 2009, the day we learned that Mattie's cancer was terminal. It is hard to believe this was five years ago today. I remember this moment in time like it were yesterday. As if it were just happening. I have reposted the story of our day below from the blog in 2009. Thank goodness for the blog, it is my memory in time! It captures pictures, stories, memories, and details! Things I would not want to forget! Details are important to me. However, one detail from August 5th 2009, I did not write about on the blog interestingly enough, which I will capture in tonight's posting instead. In fact, I checked on ALL August 5th blog postings for EVERY year I have been writing, and unfortunately I NEVER wrote about the story I will tell you tonight. At least NOT on August 5th. Since my friend Mary Ann remembers the story, I know that means I wrote about it somewhere on the blog. Nonetheless, I want it captured and tied to August 5th. So therefore I am writing it below for documentation. This photo was taken near the Hospital's rose garden which was where we went that day between scans. The hospital has an art project where nurses and staff create clay pieces and attach it to an elephant. The pieces can have inspirational words, poems, or quotes on them! Mattie was posing by a clay piece his nurse Kathleen created in his honor. It was a piece in the shape of a monkey, because he was her "monkey boy." Mattie's left leg was called "Curious George," who is a story book monkey, and Mattie's left leg was known to roam and be quite curious. Actually it was as skilled as an arm and hand! Mattie loved that clay piece and therefore wanted to take a photo by it that day (it was right by his head)!
Quote of the day: There's no tragedy in life like the death of a child. Things never get back to the way they were. ~ Dwight D. Eisenhower
For our faithful readers who reached out to us today, I thank you! Cassandra
I saw your message attached to the blog! We thank you for visiting Mattie's brick at Georgetown!!!!
Below I reposted the blog entry I wrote on August 5 of 2009. As I reread it tonight, two things struck me about it. I asked myself back then, how does one live without one's child? What an excellent question! One never elects to live without one's child. It was something that was thrust upon me, and I have been forced to deal with it. So I have had to figure it out. I have no other choice. Life gives you two options, to find a way through it, or not. So I would say, I am still figuring it out.
The second observation was I was concerned about not telling Mattie about his terminal diagnosis and his pending death. But the real newsflash is, Mattie already knew his condition. He was trying to tell me and ALL of us around him that he was very sick. He knew it for quite some time. The doctors were in left field really. They just couldn't believe that a child only six weeks off of chemotherapy could have a recurrence. Therefore they did not even want to scan him! When I said he couldn't eat or he was in pain, instead of these issues being taken seriously, I got answers like..... these are the side effects of treatment, or he is manipulating me by not eating, or he is addicted to pain meds! I got it all! It was only because I was at my wits end and I have a mouth on me, that I was able to get the scans done which revealed more tumors. I think the results stunned the medical community! This is what continues to shock me about medicine! I think doctors think that they have control over cancer! That to me is a total joke and a half. There is so much out of ANY OF OUR control and to some extent control has to put back into the hands of patients. Patients need a voice, they need to be heard!
One of the stories that I distinctly remember from August 5th, which I did not write in the blog in 2009, occurred in the Hospital's rose garden. The rose garden was my safe haven. Mind you it was SMALL! I mean small. It had two benches, a little fountain, a couple of roses, and so forth. But it was a charming space, and it was somewhat removed from the actual building where the cancer treatment was taking place. On rare occasions when I would take a break, I escaped to this garden. That infamous day after the first scan, Mattie and I went to the rose garden. Mattie was very edgy because he knew something was up since he needed a CT scan as a result of something that was found in his ultrasound.
I pushed Mattie's wheelchair into the rose garden and I sat on bench. We both looked at the fountain and the roses for a while. But Mattie wasn't happy with that, instead he wanted to get out of the chair and sit in my lap. Mattie could hardly move at that point, so literally I had to scoop him up like a baby. Yet he was not a baby, he was seven years old, a bag of bones in a way (emaciated from cancer treatment), full of pain, and had been through an ordeal no one should have had to live through. Once he was in my lap, he just did not sit there, he kind of burrowed in looking for safety, comfort, and protection. It was in my lap that Mattie asked to hear the story of the day he was born. But it was the way he asked me. It was as if he was asking me because he wanted to be reminded for many reasons...... that he was my baby, that he did not want to forget the story, and in many ways, it seemed like he was asking because he thought as if he was never going to be able to hear the story again! I felt as if he wanted to hear the story because he was bracing himself for a great tragedy and he needed to hear this story to help ground and prepare himself. It may sound strange given that Mattie was only seven, but if you were in this moment with me, you would understand the depths of how unbelievable and tender that moment was for both of us. Which maybe why I couldn't process it or write about it on August 5, 2009. But I remember it very well even today. It was a haunting moment in time.
While Mattie sat in my lap I relived the story about the night I went into labor, my c-section, and the fact that I was the first one to touch his toes after he was born. Mattie loved when I tried to replicate the sound I heard coming from him when they pulled him from my body! A very large
WAAHHH! WAAHHH! The sound itself always made Mattie LAUGH!!! We needed that laughter that day. When I think about August 5, 2009, I naturally think of Mattie's terminal diagnosis day, but I also think about the Hospital rose garden and that tender moment he was in my lap! It is a moment and memory that is captured ONLY in my mind that none of you ever knew about, but it happened, it was special, and just like Mattie I believe it showed the insights and depths he had about his own situation and his own mortality.
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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! 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.
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.
