Mattie Miracle 8th Annual Walk & Family Festival was an $88,000 Success!!!

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.

As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter

The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

Random Shots of Mattie, Family and Friends

June 1, 2016

Wednesday, June 1, 2016

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!

No comments: