Tonight's picture was taken on August 5, 2009. How do I know? Because it is a day I will NEVER forget. On that day, I learned that Mattie's cancer metastasized throughout his body and that he was going to die. Mind you Mattie's doctor did not believe that he was as sick as I was reporting. I get it, as Mattie completed chemotherapy only six weeks earlier! However, Mattie wasn't eating, drinking, and was complaining of pain. I was told that Mattie was manipulating me and was developing an eating disorder and an addiction to pain medication! May be so if he was an adult but NOT a seven year old! I wasn't buying it! I finally demanded that Mattie get scanned. That day, my worst fears were confirmed. During difficult moments, Mattie and I headed outside to the hospital rose garden. Near the garden was this beautiful elephant sculpture with pretty tiles all over it. In fact, one of Mattie's nurses created a Curious George (named after Mattie's curious left leg -- the only leg not operated on) tile in his honor. We snapped a photo of Mattie by the elephant and then went to the rose garden. It was in that garden that Mattie crawled out of his wheelchair and wanted to sit in my lap and hear the story about the day he was born. It was a story Mattie never got tired of hearing and I never got tired retelling it!
Quote of the day: And now that I have had an empty place at the dinner table for the over three years since Claire died, I still would never say to a parent who is watching their child fight cancer that they should just be thankful that they are still alive. It goes without saying that any parent whose child is fighting a life threatening disease is thankful every minute that their child is still breathing. But the cancer journey is still hard. Very hard. And painful. And scary. Scary because of the words we all dread to hear from the doctors…”I’m sorry, there’s nothing more we can do for your child." ~ Jane Frick
It is hard to believe that 17 years ago, I learned that Mattie's cancer had metastasized throughout his body. It is a day that I will never forget. I can see the day, and everything we did, in the back of my mind. It is like it is stored on a hard drive, when I do a cognitive search in my head for August 5th, the story you will read below pops up. Can you imagine having to advocate HARD to get testing for Mattie on that day? He wasn't eating and had intense stomach pain for weeks! Instead of doctors believing me, they felt that Mattie was either developing an eating disorder or was manipulating me. By August 5, 2009, I had ENOUGH of this nonsense and when I have enough, watch out! I demanded testing and testing happened! NOTE: in a hospital system, the one with the loudest voice, gets the most attention! Any case, Mattie endured testing that day and even he knew the results weren't going to be good. Can you imagine that a 7-year-old had more wherewithal and insights than that his own doctors?!
I can still feel the turmoil, chaos, fear, and hopelessness of that day. It is etched into my being and yet no matter how devastated I was that day, I had to keep it together for Mattie. He was relying on me and what I learned as a parent is HOPE changes during a cancer journey..... first I mobilized forces in search of a cure, and when that failed, I actively looked for ways to manage pain and to help Mattie live his last days with dignity. Something NO PARENT should have to do!
Today, I had to go for a cat scan of my heart. It was a five minute procedure, but while on the scanner, I immediately thought of Mattie. The sound of the machine was something that I am all too familiar with, as I used to tell Mattie to visualize a hot wheels car racing around him on a circular track (because that is what the machine sounds like). What should be any easy test for the average adult, is not so for me. All testing, takes me back to 2008 and 2009. Testing equals fear and anxiety. It takes a great deal of inner strength for me to keep it together. Then of course I worry, because if something happens to me, I don't have my other half helping, supporting, or advocating for my care.
Before going into the scanner, I was sitting in the waiting room with my mom. There were three other ladies in the waiting room with us and we all started chatting. You would have thought we were at a party and not in a waiting room. When I told the front desk admin that she had a lively waiting room, her response was...... it is NEVER like this! Any case, all the women in the waiting room were moms of only children! So we all immediately bonded. They shared photos and stories. When they asked how old my son was, I said he would have been 24, but unfortunately he died from cancer. I seriously thought one woman was going to pass out hearing this pronouncement.
In any case, it is moments like these when I say to myself, how do I respond when asked do I have children? I remember struggling with this question soon after Mattie died, but now 17 years later, when asked, the answer will always be..... YES I had a son. Mattie existed and his spirit and presence still exist for me.
I am sharing an excerpt below from the August 5, 2009 blog. Going back in time is important, because you have the chance to read my thoughts and feelings in the actual moment. All those actual moments are within me, I live with them daily. I have never forgotten them, and yet the large task is finding a way to live with all this grief, trauma, and chaos. It isn't easy and even harder now that I share this journey alone.
.......................................................................................
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 my friend 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 she 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. X
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, X 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 X 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.
X 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 Kettering 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.
No comments:
Post a Comment