Wednesday, June 1, 2016
Tonight's picture was taken on August 18, 2009. Literally Mattie died three weeks after this photo was taken. Which is hard to believe. Mattie was sitting outside on our deck playing with his remote controlled boats in a kiddie pool! Something Mattie always loved to do. Back when Mattie was healthy, he would have jumped right into the pool with all of his toys. But cancer left Mattie very weak and depleted. Nonetheless, he had his "Captain Mattie" hat on and was ready for sailing. Mattie's greatest wish (when healthy) was to own a boat. Not a toy boat, but a real boat, and we always got a kick out of hearing him explain to people that he saving his nickels, dimes, and quarters for this purchase.
Quote of the day: There are wounds that never show on the body that are deeper and more hurtful than anything that bleeds. ~ Laurell K. Hamilton
Peter and I participated in a 90 minute webinar today hosted by the National Child Traumatic Stress Network. We were asked to speak for 20 minutes about our personal experiences with childhood cancer and its traumatic effects on both Mattie and us. I remember in graduate school, years ago, a trauma expert did a guest lecture for one of my classes. During the session he mentioned that you can't re-traumatize a person by having them retell their story. I am not sure where I am at with that notion, because all I know is after 90 minutes of this webinar today I landed up in a terrible funk. Sure I am not re-traumatized, because I actually live with all the visions and feelings I describe below. But I definitely do not feel better about talking about them! So I am not sure why I feel the way I do. I do know however, that the phone is not the ideal venue for me to talk in general, much less to talk about emotionally laden material. It is hard to express the stressors, turmoil, and trauma we felt to a phone receiver and not get any non-verbal or verbal feedback from a live person in front of me.
I developed the 11 slides you see below. I spoke to the first six and Peter spoke to the remaining five. Unfortunately I did not capture what Peter actually said, but I can assure you he was eloquent, spot on, and delivered a meaningful presentation! The presentation was taped, so at some point, I will be able to include a link to the web, if you want to see our portion of the presentation.
Given that I was going to talk on the phone and had a tight time line, I made notes to myself! So I share my thoughts with you below.
We want to thank the National Child Traumatic Stress Network
and Dr. Anne Kazak for including us in today’s presentation and for giving
parents a voice on this important issue.
An issue which is not socially acceptable to truly discuss in our everyday
lives. So venues like these are vital.
My husband Peter and I will present the impact of childhood
cancer through our own lens. I will cover the first half of our slides and then
Peter will cover the second half.
For those of you who have our slides in front of you, you
will notice that we included photos of our son Mattie and our experiences with
him along his cancer journey. It is our hope that the photos help emphasize
what we are discussing and also serve as a reminder of the fact that we are sharing
our personal stories and perspectives with you.
Mattie was our son and only child. He was born a healthy and happy child and remained that way until the summer of 2008, when he enrolled in a tennis camp. During the first week of camp he complained of arm pain. We did not think much about it, since we thought perhaps he pulled a muscle. By the second week in camp, Mattie was in a lot of pain and couldn't lift his arm. So I took him to the pediatrician and fortunately she took my concerns seriously and ordered an xray of Mattie's arm. The xray revealed a tumor in Mattie's bone that was indicative of Osteosarcoma, bone cancer. However, after extensive testing we learned that Mattie had four primary bone tumor sites (in both arms, his left wrist, and right leg), which is very rare. Mattie endured 10 months of high dose chemotherapy, two limb salvaging surgeries (to remove the bones with tumors and replace them with prosthetics), experimental immunotherapy, radiation, and a sternotomy to remove 9 tumors in his lungs.
All of Mattie's treatments occurred in-patient and we were rarely home, which had consequences on our home and our cat. I gave up working and Peter worked by day so that we had health insurance, yet after work Peter spent his nights at the hospital with us. What I learned about childhood cancer is it is not just about the medicine. There are real psychological, social, and emotional consequences from the medical treatment. Four months into Mattie treatment, he was diagnosed with clinical depression, anxiety, and medical traumatic stress.
Mattie died on September 8, 2009, and shortly thereafter we established the Mattie Miracle Cancer Foundation in his memory. The Foundation increases access to psychosocial services and is funding the creation and implementation of National Psychosocial Standards of Care.
We decided to present the impact of childhood cancer on us
at every stage of Mattie’s cancer journey. We feel this is important because
what we hope to illustrate to you is that children and parents face multiple
medical traumatic events and losses throughout cancer care and the aftermath of
these events do not end when the medical treatment does.
At the time Mattie was diagnosed with cancer, we felt as if
our world had just come crashing down or had ended. We were in complete shock
over hearing this news and yet there was Mattie looking to us for care and
guidance. So I believe in our case this initial numbness over hearing this news
helped us to mobilize forces and get Mattie into treatment two weeks after his
diagnosis.
Things you never thought you would do while raising your child, you land up doing after a cancer diagnosis. For example
the day Mattie was diagnosed with cancer, which was in July, he asked if we
could take out and set up all of our outdoor Christmas lights and decorate our deck (see bottom right photo). Typically we wouldn’t be
honoring such a request, but from the moment you enter a diagnosis, your role
as a parent begins to change. Mainly because you realize the magnitude of the
life and death situation you are facing and also have to quickly adjust to
others helping in the care of your child.
Though health care professionals understand how to provide
standardized medical treatment, what they do not know is how best to provide
this to each individual child. Which is where parents come in. It is crucial at
the time of diagnosis to embrace and empower parents to be part of the
treatment team. After all NO ONE understands the child better than his parents.
For example, the treatment team looked to us regarding how to explain Mattie’s
diagnosis to him. We explained to them how much Mattie loved bugs. So together
Mattie and his art therapists designed a bug made out of clay. I then explained
to Mattie that this represented the “bone bugs” that were crawling around inside
of his body. Though he liked bugs he did not want such bugs inside of him and
that the medications he would be receiving were going to stomp out these bugs (which is what the top right photo illustrates, Mattie’s foot acting like
chemotherapy and stomping out his bone bugs).
What I think is sometimes overlooked is that entering into a
hospital or treatment site can be traumatic. Especially if your treatment is
inpatient... you will be living there for a long period of time. Like we did with
Mattie. Hospitals have their own culture…. Language, hierarchies, and
rhymes. And since we weren’t oriented to
our surroundings before treatment started this only added to the stress and
crisis we are already facing. I included a photo of Mattie in the aqua blue
hospital hallway (lower left). I realize this color maybe soothing for some, but when we
first walked off the elevator to enter into treatment I wasn’t prepared for
this blue fish tank theme and literally these surroundings depressed me because
I felt that my environment captured my internal feeling of drowning.
Understanding a family’s dynamics prior to cancer is
imperative and this should be part of the health care treatment team’s initial
assessment. Parents react to a cancer diagnosis differently and because a
parent isn’t crying and curled up in a ball, doesn’t mean that we are not
facing our reality. For me it was very traumatic when Mattie’s health care team
tried to separate me from Mattie while he was undergoing chemotherapy for the
first time because they felt as if I needed time away from the hospital unit to
care for myself. I wouldn’t have left Mattie alone at age 6 when he was
healthy, so rest assured it wasn’t happening while battling cancer. A lot of
additional stressors can be avoided by making the time to understand family
dynamics.
Undergoing scans and procedures were problematic issues for
Mattie and us throughout Mattie’s cancer journey. Mattie came into his cancer
diagnosis with a pre-existing issue. He had sensory processing disorder,
meaning that sensory signals didn't get organized into appropriate responses. Mattie
had sensitivities to loud sounds, tight spaces, and being touched. Knowing this
information before undergoing CT scans and MRIs would have been important. But
Mattie’s health care team insisted that they thought he could manage these
scans without a problem.
Unfortunately this wasn’t the case. Mattie became hysterical
with each scan, crawled under scan tables and was shaking in fear. Needless to say many
important scans couldn’t be completed. If scans aren't done, treatment doesn't
move forward! From that day on any time Mattie needed a scan or procedure he
had to be sedated because of his heightened anxiety from his initial
experiences. Again, including parents in decisions and part of the treatment
team from the beginning can help to avoid some of these unexpected issues.
I do want to mention that the sounds of Mattie panicking and
the pain he experienced as his body was being manipulated in place for scans
are things that we still live with. While we were going through this with
Mattie we weren’t able to process what was happening to him or to us fully, but
these images of him remain with us and it is our continual journey forward to
be able to manage, cope, and not allow these thoughts or feelings to completely
take over our lives.
Throughout the treatment process, parents are constantly
subjected to the stress of undergoing scans to assess how effectively treatment
is going and then of course having to wait for the scan results. While waiting
for results it almost feels as if time is standing still, that we are in
suspended animation because we know full well that this news can have positive
or devastating consequences for our child.
Having to manage a cancer diagnosis is scary and intimidating
enough, but what can compound the stress and complexities of this reality is
how we are treated by the health care team. After Mattie began treatment, he
then went for an MRI to see if there were any changes in the size of his
tumors. What I will never forget were how the MRI results were communicated to
me. I was with Mattie playing in the hospital hallway, when I saw a team of ten
people approach me…. including the chaplain, social workers and so forth. I did
not even need to hear the scan results because I immediately knew that BAD news
awaited me. So I quickly whisked Mattie into his room with his child life
specialist.
How results are delivered is important and when possible it
is important for the treatment team to consult with parents ahead of time to
work out the details regarding how and by whom they wish results given. Many
times families align with one or two people in the treatment team, and it is
vital to have these people around to help with support. Also giving accurate
results and being honest is vital because sugar coating the truth has a way of
back firing down the line. Parents rely on their health care team to be honest
and being honest doesn’t mean killing our hope. It just means that you trust us
with this news and are including us in the next stages of the treatment
process.
There are logistical and secondary problems that arise while
undergoing cancer treatment. Issues that Peter and I could never have imagined
we would face, until placed in the actual situation.
Mattie’s cancer care did not occur in a separate
hematology/oncology unit. Instead all of Mattie’s in-patient care occurred in a
pediatric intensive care unit. A PICU is constantly ON, lights are blaring at
all hours of the day and night, sounds and alarms from machines are constantly
going, and frankly it is impossible to discriminate from day versus night. They
seem one of the same, which was why Mattie NEVER SLEPT. He literally was wired
on constantly which made it impossible for Peter or I to ever get any sleep.
In addition, hospital walls are paper thin, and we could
hear other families crying, children in pain, and even worse children around us
dying. Some nights the only way I could get rest was blocking out sounds with a
pillow over my ears. As you can see in the photo on the lower right, Mattie was
also hyper alert to sounds and would cover his ears during the day
with any item he could get his hands on.
Another thing we weren’t prepared for was infections.
Infections can occur normally just living in a hospital, but they can
be deadly for a child with cancer. Some of these infections, like MERSA, were
contagious and many times Mattie had to be isolated in his SMALL two by four of
a hospital room until testing revealed whether he had the infection or not.
Weeks when Mattie was quarantined in this manner where highly stressful, very
depressing because Mattie wouldn’t leave the room, see other people and go to
the playroom, and made it overwhelming on me to manage.
After Mattie’s second limb salvaging surgery, which was four
months into his treatment protocol, he started to develop severe and disabling
symptoms that made it difficult to care for him. Mattie was home during this
time recovering from surgery, so his treatment team wasn’t seeing what we were
experiencing. Mattie couldn’t sleep, had constant nightmares where he would
wake up screaming, he seemed emotionally detached and wanted nothing to do with
the outside world and those around him, he was very agitated, irritable, and had a lot of fears and anxiety. To me
these were classic PTSD signs, but I wasn’t aware of the fact that one could
develop these same symptoms after exposure to medical events.
In any case, we were constantly on the phone with Mattie’s health
care team. Instead of diagnosing the issue, we were told that all the symptoms
we were reporting were probably Mattie’s reaction to pain meds and we would see
it getting better in time.
Two weeks after that point, we brought Mattie into the
clinic for a follow up. By that point Mattie was hysterical, wouldn’t let
doctors or nurses ten feet near him and it was at that point I demanded to see a
child psychiatrist. Which was when Mattie was officially diagnosed with
clinical depression, anxiety, and medical traumatic stress and started on
psychotropic medications. Which of course is equally traumatic to manage given
that there is no real data about the impact of combining these drugs with
chemotherapy on children.
I will share the next five slides that Peter presented with you tomorrow!
Peter and I took a walk today around the Capitol Mall. This is something we did often with Mattie. Everyone was out and about today, not to mention the fact that there was a ton of bird traffic all around us. 
