Tonight's picture was taken in June of 2006. I snapped this photo quickly so it was blurry, yet it is still a great photo! It is great because it captures the essence of Mattie. Mattie LOVED boxes and had great creativity to transform them into whatever he wanted to play with..... a car, a train, an apartment building, etc! Mattie would work on reconstructing the box and then spent days incorporating it into his play schemes!
Quote of the day: How resilient was the body, to return to its prior form so quickly! Yet the mind was formed of a less pliable substance. The emptiness in her thoughts would not be so easily filled. Instead there was a hollowness among them-a place she had reserved for future joys which now would never arrive. ~ Galen Beckett
The next five slides you see tonight are a continuation of the presentation (which I posted about on yesterday's blog) Peter and I gave on the webinar for the National Child Traumatic Stress Network. I presented last night's slides on the webinar and Peter did a great job presenting the ones below. I unfortunately can't replicate what Peter said, so instead, I will walk you through the slides as I see them.
The beauty of this slide is it says a thousand words! The photos depict the actual psychosocial consequences of Mattie's treatment on him and us.... depression, exhaustion, sadness, pain, and isolation. These were not issues Mattie faced prior to having cancer but they were pervasive once the treatment began. With regard to isolation, some of this was forced on Mattie because he would get infections or low white blood cell counts and to protect him from picking up germs he needed to be around fewer people. However, I also have to admit that Mattie became isolated because his friends were scared to visit him. It is daunting as an adult to see a child endure cancer, but for a child it can be very confusing and the natural instinct from parents is to protect their child from witnessing such a harsh reality.
It was also painful for us to hear Mattie come to the realization that his friends did not want to see him and also that he felt he "looked ugly." But as treatment continued and more mental health issues began to surface, Mattie became very sensitive to sounds. Even the sound of people talking. In the last several months of Mattie's life, he refused to allow Peter and I to talk in front of him. ABOUT any topic! The way Peter and I communicated, even while in the same room, was by text messaging each other. This greatly impacted our relationship and marriage. In addition, we never had time together because one of us was always with Mattie 24/7 for 14 months. So though these are not things we talked about back then on the blog, I can assure you that Mattie's cancer impacted all three of us profoundly.
However, the days and weeks off of chemotherapy were just as wicked as on treatment. Mattie complained of pain, he never was hungry and rarely ate, and worse he wouldn't consume fluids. He was truly emaciated and to keep up his hydration he was constantly on IV fluids, even while at home. Though off chemo, Mattie still had to go to the hospital twice a week for his experiemental immunotherapy. So we were in constant contact with his treatment team. Yet things weren't getting better and I shared these concerns with the doctors. First we were told Mattie could have an ulcer and he was tested for that (which turned out to be negative) and then the ultimate insult was I was told that Mattie was most likely addicted to pain medications, which was why he was always asking for them, and that he was manipulating me by NOT eating, and probably had the start of an eating disorder. Keep in mind Mattie was only 7! I wasn't buying any of this!!! So I kept pushing until finally the doctor ordered follow up scans. The scans revealed that Mattie's cancer spread throughout his body only six weeks off of high dose chemotherapy.
I honestly think the doctors were shocked by this, which is why they did not order the tests when I initially started complaining. But the difference is I wasn't interested in the science, I was LISTENING to the patient in front of me and I knew Mattie wasn't a manipulative child. If he complained of something it was always legitimate. Imagine denying a child pain meds who literally had cancer metastasized throughout his body?!
In the photo on the upper left, you can see Mattie was in a wheelchair and looking up at Peter and me. He was trying to assess our faces! Because his medical team pulled Peter and I to another room to discuss the fact that Mattie needed end of life care. THERE WERE NO OTHER TREATMENT OPTIONS! Another nightmare for a parent to hear. Mattie remained out by the art table with his nurses and art therapists during this conversation, but he knew something was up.
Hope is a funny thing because naturally when your child is diagnosed with cancer, the hope is for a CURE (a word I hate, because it truly doesn't exist once cancer has come into your life). However, over time, your perspective on hope changes, it evolves. You hope that you can get through a chemo infusion without having nausea, or you may hope that today's blood infusion provides no serious side effects (as we experienced that too!) or the ultimate hope... you hope you can help your child die without a lot of pain and with dignity.
Mattie's hospital room looked like a scene from a war movie. There were pain syringes everywhere since his nurse couldn't pump it into his IV's fast enough. Yet Mattie was still writhing in pain. In addition, Mattie held on and fought dying, which was why he had to be induced into a coma. His doctor told us in all her 25 years in medicine, Mattie was only the second child she had to do this to.
Mattie is the one who elected to die in the hospital, rather than at home. Thankfully he did because we could have never managed his death at home. Mattie chose the hospital because he trusted his nurses and they were his hospital family throughout this 14 month journey with us.
Mattie died in our arms, as we heard him flat line. Also another horrible sound and memory. However, after Mattie died what surprised us was that there was an impromptu wake right in his room, around Mattie's body. We had around 20 people with us.... hospital staff who had come to love and care for Mattie. They shared memories and stories with us.
Yet at the end of the day, we had to see Mattie's body carried away in a body bag to the hospital morgue and then we had to pack up and head home. We entered the hospital as THREE and left as TWO. It was such a disturbing and profound experience that it remains with us today.
Our social circle has greatly changed now that Mattie died. In fact we lost many of our friends. We no longer fit in. We are like empty nesters but decades before it should have happened. We no longer attend school events and other things that bring kids and parents together. However, we also do not fit in with the cancer world. Especially with those fighting cancer or cancer survivors. Peter and I are daunting to them too because we represent their greatest fear.... that this could happen to their child. So basically we don't fit in anywhere! This is a profoundly problematic feeling, to feel lost and like you don't belong to anything.
In addition, Mattie's cancer battle has compromised my health. I have one ailment after the other and unfortunately many of these ailments force me to endure scans and testing. Journeying back to hospitals and having to see scan equipment can be very stressful and I will never forget last year when I had to get a procedure that put me right back into the scan room that Mattie was in when we learned his cancer had metastasized. YET hospital personnel don't care, nor are they interested in taking a history of your prior hospital experiences. Experiences which can compromise care and affect your ability to tolerate, endure, and manage through certain procedures. Because cancer happened to Mattie, our health care system never thinks..... wow this can have consequences on the parents. Their n is one! But there are real consequences and it isn't just with me..... it is with many parents of children who battled cancer.
1 comment:
Vicki & Peter, I read your blog last night, then retread this morning. All the pictures, words, descriptions of each part are so true and absolutely tragic. To see pictures of Mattie before diagnosis and then look at each picture of him throughout treatment up to his death, leaves one wondering how come the psychosocial aspect of a Childhood Cancer diagnosis has not been taken into consideration long before this.
Mattie's pictures, his expressions, his sad face, the look of loneliness are Mattie's own looks. Yet for all the years, I worked directly with children, I saw the same expressions. Yes, children miss their friends and wonder where they are in all this. Yes, children understand, even those very young, that their life has gone from fun to scary. I think your bug analogy was smart. I always encouraged families to choose a way to describe their child's cancer with an explanation, the child would understand and to use a word describing chemo and all treatment with something the child would recognize as their fighting force.
Yes, children do know when they are dying. Yet most times parents are faced with the hard decision of how, when and if, they should talk to their child. This happens also with out much if any guidance. I started noticing the far away look a child would have as their life was coming to the end, here. Yet, they like Mattie still fought to breathe and stay.
I was fortunate to work at first with a group of Drs. who did care about the whole child. However, we did not have a psychosocial team on staff, just a Play Therapist. That is not enough. Yet, I will say families were not abandoned.
Childhood Cancer is more than the medicine but it does take Standards like you are setting to make sure each child has the opportunity to received the combined care. Child Life, Play Therapy, Art Therapy, all have their place in adding something to the care of the child & family but unless a child is helped finding definite skills to help depression, isolation, etc., these aspects will not be addressed or helped for each child going through treatment.
Your presentation was excellent. I can only imagine how difficult it was to put it together and present on a phone. Mattie will always be your loved child. I know he is always in your thoughts and giving a presentation of this type along with all you do to accomplish this work to help other, is UNIMAGINEABLE. I do have the highest respect for both of you!!!!! I plan on recommending your blog site to several Pediatric Oncologist's, that I know.
Thank you for the friendship, we share. I am proud to know and support MATTIE MIRACLE FOUNDATION
Margy
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