Mattie Miracle 2021 Walk was a $125,000 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

June 4, 2016

Saturday, June 4, 2016

Saturday, June 4, 2016

Tonight's picture was taken in April of 2009. We took Mattie out for a walk that day and one of his favorite places to visit was this fountain. I think what intrigued Mattie about the fountain was the sheer volume of water that comes shooting out of it. It feels almost like standing at the edge of Niagara Falls. Ducks also love it and on a hot day, the mist off of this fountain is very refreshing. Peter and I can't pass this fountain now without thinking of Mattie. In fact we call it Mattie's fountain. 

Quote of the day: The greatest fine art of the future will be the making of a comfortable living from a small piece of land. Abraham Lincoln

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. 

What you may not be able to see, because it looks like a speck, is that behind me in the center of the pond was a wonderful great blue heron. 

These roses surround Mattie's favorite fountain in DC.

This is a photo of Mattie's favorite fountain taken today. Clearly in comparison to the photo above, a very significant person is missing from this scene. 

We worked for some time in our garden this morning. Lincoln was absolutely correct... a lot can be done with a small plot of land! 

In our garden can be found two fountains, which were designed by Mattie and Peter for my birthday in 2009. These fountains mean a lot to me and Peter re-starts them every year on Mother's day. 

Mattie's favorite HEM/ONC nurse, Tricia, gave me the wonderful plaque that sits behind Mattie's fountain. It says......

"Some people come into our lives leaving footprints, so that our hearts can never be the same." 

On the other side of our deck we are growing beans and carrots. The last time we grew beans Mattie was alive. 
Can you see the second fountain? Right now our hose is somewhat wrapped around it. But what you will also notice in our garden is we have Mattie wind chimes everywhere, as well as sun themed items. 

Though I love roses, I do not like growing them. These roses are Peter's. He grows them every year and after Mattie died we began putting plants on top of our deck walls. It helps to create the effect of "MY SECRET GARDEN."

Apparently plants are not the only thing we grow..... check out this weed Peter pulled out. It is about as tall as me. 

June 3, 2016

Friday, June 3, 2016

Friday, June 3, 2016

Tonight's picture was taken on August 6, 2009. The day after we learned that Mattie's cancer had spread throughout his entire body. Honestly I did not know if we were coming or going, but one thing we did not do was scare Mattie about the status of his diagnosis. Though in all reality Mattie knew his condition better than any of us. How a seven year old knew he was dying was beyond me, but despite his young age he understood. Sitting around the art table in clinic with Mattie was Jocelyn (on the right with the Mattie orange wrist band) and Jocelyn's two sisters. Jocelyn was battling osteosarcoma too and despite the age difference between the two of them, Mattie related to Jocelyn and vice verse. It was wonderful that Jocelyn and her sisters were in clinic that day because they served as a great support system and distraction for Mattie. They created all sorts of things that day and even had a boat race in the clinic sink! 

Quote of the day: Until it is taken out of your mind, it is never lost and it is never gone.  Ernest Agyemang Yeboah

I described the boat race that took place on August 6 of 2009 above. These are photos of that actual moment in time. 

First of all it is hard to believe that both people in this photo are now dead, thanks to osteosarcoma. 

Jocelyn and Mattie constructed a sailboat made out of cups, tin foil, wire, and paper! The goal that day was design your own boat and race it in the sink.

This was a bin filled with water over the sink. The bin served as the platform for the boat races! Despite the fact that Mattie was weak, he was able to stand and prop himself up against the bin. 
Jocelyn did all the blowing of the boat, since Mattie had no wind power in his lungs. Mattie and Jocelyn were a racing team and they competing against Jocelyn's sisters!
Here are Hannah and Megan (Jocelyn's sisters). They designed a boat called "the super duper boat." With poms poms and all! These ladies were good sports and hammed it up because no matter what they were going to make Mattie win. 

Mattie had a special and fun day with Jocelyn and her sisters, which truly was a feat given all we were living with. 

June 2, 2016

Thursday, June 2, 2016

Thursday, June 2, 2016

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. 

As a reminder, when I created these slides my ultimate goal was to illustrate to our listener that there are medical traumas and losses along the ENTIRE cancer trajectory (journey). Not just on the day of diagnosis. 

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.  

After chemotherapy ended, after 10 months into his journey, we thought the next phase was going to be about rehab.... regaining strength and to learn to walk and use his arms. I had the hysterical notion that we would do intensive therapy and Mattie could try to go back to school in the fall of 2009. 

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?!

Mattie knew he was dying before his doctors did! He even asked if he was going to die. Of course this was a hard question to answer and we always tried to stay as positive as possible with Mattie. 

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 death was also traumatic. Mattie had five very intense hours of extreme pain and being unable to breathe. He had something called the death rattle, which literally sounds like the body is filled with fluid and you can hear that fluid rattling with each breath. It is a horrific sound! 

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. 

As for the aftermath of Mattie's death..... we still live with it. It doesn't go away! Even our cat, Patches, was affected by Mattie's death (lower right photo). Patches sat for days on top of Mattie's pillows after he died. This was not something she normally did. 

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. 

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!

May 31, 2016

Tuesday, May 31, 2016

Tuesday, May 31, 2016 -- Mattie died 350 weeks ago today.

Tonight's picture was taken in May of 2006. We took Mattie to Pennsylvania for Memorial Day weekend and as you can see Mattie got a hold of my camera and decided to take some of his own photos. This was Mattie's perspective of his feet!

Quote of the day: In any situation, the best thing you can do is the right thing; the next best thing you can do is the wrong thing; the worst thing you can do is nothing. ~ Theodore Roosevelt

Peter and I were invited by Dr. Anne Kazak, a core member of our psychosocial standards team to present with her tomorrow on the National Child Traumatic Stress Network webinar. In a way, a webinar is a lot like a conference call. However, callers around the Country have access to the presentation slides we are using and can follow along virtually. Anne (a psychologist), Eric (an oncologist), and Peter and I will be discussing traumatic stress and childhood cancer. Particularly Peter and I will be focused upon our personal stories and in essence how our experiences confirm the research. 

In my opinion trauma is the MOST UNDER discussed side effect of childhood cancer. Yet it is very real for both the child and the parents. In fact, mothers of children with cancer are found to have a high incidence of PTSD from the experience. It is not something I discuss freely since I feel the majority of the world can't grasp what I witnessed and lived through. So I can appear very normal and integrated in society. However, if you know me well, you know that I am cognizant of the environment I will put myself in and I am very sensitive to my surroundings, noises, and the people around me. 

In 2010, I was personally interested in trauma and childhood cancer and began doing literature reviews on the topic. It was through my searches, that I kept coming across a researcher and clinician by the name of Dr. Anne Kazak. I read many of Anne's studies and they immediately resonated with me. Not only does she conduct sound research but it is the sensitivity and insights of her results and conclusions that captured my attention.

So literally in 2010, I wrote Anne an email letting her know about my perspectives on her research. Never did I expect her to respond, or respond with such interest. From that email, we then arranged for a conference call with Anne, and it was Anne who was the scientific chair of Mattie Miracle's Symposium on Capitol Hill in March of 2012. This was the first symposium of its kind to address the psychosocial issues of childhood cancer. If I hadn't read Anne's papers, if I hadn't emailed her, or if she never responded, we may not have a National Psychosocial Standards of Care today. Anne always jokes with me.... ever since I emailed her, she now makes it a habit to respond quickly to other parents who also email her because she says she never knows if this person will be "another Vicki."

Here is some information about tomorrow's 90 minute Webinar (noon, EST):

The National Child Traumatic Stress Network (NCTSN) is hosting its first webinar in the series entitled, “Helping a Family with Traumatic Stress when a Child has Cancer.”
This webinar presents an integrated approach to recognizing and responding to child and family traumatic stress when children have cancer. The speakers, who include a psychologist, oncologist and parents of a child who lost his battle with cancer, will explore the impact of the diagnoses and treatment on the child and family, discuss cultural considerations that may intersect with a family’s response, and describe their approach for assessing, managing and treating traumatic stress.

LIVE: Wednesday, June 1st, 2016
9:00 a.m. Pacific / 11:00 a.m. Central / 12:00 p.m. Eastern
90 Minutes

Eric Sandler, MD – Nemours Children’s Clinic
Anne Kazak, PhD, ABPP – Nemours Center for Healthcare Delivery Science
Victoria Sardi-Brown, PhD, LPC – Mattie Miracle Cancer Foundation
Peter Brown, MBA – Mattie Miracle Cancer Foundation

To Register:
Use the following link to enroll or view the webinar the day of:

To Listen by Phone Only:
Call 1-866-295-5950 and enter guest code 5318986#.
To submit a question or comment during the webinar, email 

A copy of the slides may be downloaded and printed from the NCTSN Learning Center on the day of the webinar.

Technical Support
For technical issues or questions about the NCTSN Learning Center, contact

May 30, 2016

Monday, May 30, 2016

Monday, May 30, 2016

Tonight's picture was taken on Memorial Day weekend of 2007. That weekend we journeyed to Pennsylvania to take Mattie to Dutch Wonderland. Again, this was another theme park geared to preschoolers, that I learned about through Mattie's preschool. But to be perfectly honest I wasn't sure Mattie would like the park, especially the rides. As child and an adult, I truly detest rides, and I have never been on a roller coaster ever! Dutch Wonderland had many rides and this one roller coaster as pictured here. We showed it to Mattie, and he was the one who wanted to try it. He showed no fear or hesitation. Meanwhile, while I was waiting for Peter and Mattie to board the coaster, there was a child in line with his family. His family was basically forcing him on the ride and he said in no uncertain terms he did not want to go. The child was hysterical, but they weren't listening. I couldn't help myself, and approached the family and then also brought over security. Seems to me no one should be forced on a ride, especially a child. As for Mattie, he LOVED the experience and rode on that coaster several times that day. It was from his visit to Dutch Wonderland that Mattie became hooked on coasters and every park we went to, Mattie headed right for the entrance line. 

Quote of the day: For love of country they accepted death. ~ James Garfield

In honor and memory of those who lost their lives serving our Country, we thank you. Our hearts go out to those family and friends who remain behind. We would not have our freedom and way of life without the courage, bravery, and sacrifice of these men and women. 

Peter and I spent our afternoon creating this Mattie Miracle Walk & Family Festival video. This is our first Walk video we ever created. We spent part of yesterday find the right song! This took a while, but we finally selected David Osmond's song entitle, "I can do this!" David wrote this song for the multiple sclerosis community. Nonetheless, I believe it is very empowering and captures the sentiment we feel about our event and Mattie Miracle's mission. 

Our photographer gave us over 400 photos. Peter and I sifted through them and selected over 60 for this video. We chose these particular ones because we wanted to highlight our activities, the energy of the day, and most importantly the community spirit and connections formed at our Walk each year. This is our second Mattie Miracle video that Peter and I developed ourselves. We hope you enjoy our latest creation! 

Click on the photo above to see Mattie Miracle's Walk & Family Festival video

May 29, 2016

Sunday, May 29, 2016

Sunday, May 29, 2016

Tonight's picture was taken in May of 2006, during Memorial Day weekend. It was our first weekend trip away with just the three of us. Friends from Mattie's preschool told me about Sesame Street Place in Pennsylvania. Given that Mattie LOVED the TV show, Sesame Street (especially the Elmo character) I had a feeling Mattie would appreciate this theme park geared to preschoolers. Mattie did practically every activity possible that day at the park, from land activities to water ones. We bought him a big Elmo balloon, and then somewhere along the line, a large Elmo character walked up to Mattie and handed him a second balloon for being such a big fan. I remember the park had an amazing Memorial Day parade with several members of the military present. 

Quote of the day: There is nothing wrong with America that the faith, love of freedom, intelligence, and energy of her citizens can not cure. Dwight D. Eisenhower

This Memorial Day, may we remember all those who died in active military service. Today, Peter and I walked down to Constitution Avenue to watch Rolling Thunder. Experiencing this in person is unforgettable...... the energy in the air and the reason for the ride, produces a whole lot of cheering but also tears shed by observers.

Rolling Thunder is a United States advocacy group that seeks to bring full accountability for prisoners of war (POWs) and missing in action (MIA) service members of all U.S. wars. The group's first demonstration was in 1988. It was incorporated in 1995, and has more than 90 chapters throughout the US, as well as overseas.

Their main annual event occurs on the Sunday before Memorial Day, in which members make a slow ride on a dedicated, closed off, pre-set route, called Ride to the Wall in Washington D.C., referring to the Vietnam Veterans Memorial Wall, also called the Ride for Freedom, which leaves the Pentagon parking lot at noon, crosses the Memorial Bridge, and ends at the Vietnam Veterans Memorial.

Rolling Thunder and its mission began as a demonstration following the era of the Vietnam War, which was a difficult time in our history. Many of America’s military were killed or missing in action (MIA) and their remains were not being returned home or respectfully buried. There were also reports of live prisoners of war (POW) who were left behind when the war ended. In 1987, Vietnam veteran Ray Manzo, bothered by these accounts, came to DC with his idea and enlisted the help of fellow veterans Holland, Sides, and Sampley, to organize a motorcycle demonstration to bring attention to the POW/MIA situation. Choosing Memorial Day weekend for the event, they envisioned the arrival of the motorcycles coming across the Memorial Bridge, and thought it would sound like “Rolling Thunder”. The first Run in 1988, had roughly 2500 motorcycles and riders demanding that the U.S. government account for all POW/MIA’s; it continues to grow every year, becoming the world’s largest single-day motorcycle event. Now with over a million riders and spectators combined, Rolling Thunder has evolved into an emotional display of patriotism and respect for all who defend our country.

This is the ONLY time of year you can walk down 23rd Street, because it is blocked off to vehicular traffic. 

A solitary Marine holds vigil at full attention during the Rolling Thunder motorcycle rally in tribute to fallen comrades.

This year, this marine and his new bride stood in place for OVER an hour. In heat and direct sun. I can't tell you how much attention they received from the media (you can see a newscaster interviewing the bride here), from riders, and attendees!
A troop of police start the rally, and just their sheer number causes you to pause and reflect. 
It is estimated that there are one million people (riders and observers) who take part in Rolling Thunder. 
Can you see the marine and his bride? They stood vigil and thousands upon thousands of motorcycles passed them by. 
Several riders stop, salute, or even give flowers to the marine. 
This event is all about remembrance and patriotism. 
This is Constitution Avenue (looking East)! Typically a very busy street to vehicular traffic. 
I love how Peter captured the riders going down Constitution Avenue, and this woman in particular was wearing her stars and stripes. 
A close up of faces coming down 23rd Street. 
Riders were displaying POW/MIA flags, American flags, as well as indicating the branch and division they served in. 
As you can see there were many visuals about prisoners of war. To remember, never forget, and not to rest until these members of the military are brought home. 
There were few cars/trucks in the rally, but this one caught all of our attention. 
Toward the end of the ride, two lanes of rider traffic began coming into the city.
Get a feeling for the number of spectators at the rally?! For the most part people obeyed the police and were courteous to one another. 
Crowds of people everywhere! Not to mention police. 
This lady gave Peter the peace sign as he was photographing her. 

The Rally with the Lincoln Memorial in the background!