MATTIE MIRACLE VIRTUAL WALK WAS AN $110,000 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: www.mattiemiracle.com 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

July 6, 2019

Saturday, July 6, 2019

Saturday, July 6, 2019

Tonight's picture was taken on July 4, 2006. Mattie was 4 years old and we were invited out on the Potomac River with Mattie's close friend, Zachary, and his family. This was our first and only experience watching the Nation's fireworks from a boat. Mattie was thrilled, as Mattie always wanted a real boat of his own. So glad he had this experience. 


Quote of the day: The conflict between the will to deny horrible events and the will to proclaim them aloud is the central dialectic of psychological trauma. ~ Judith Lewis Herman


As I mentioned in last night's blog, on Friday we went to visit a 9 year old boy, Ryken, at the National Institutes of Health in Bethesda, MD. Ryken basically hasn't known life without cancer, as he was diagnosed with Leukemia at the age of 4. He and his parents live in Canada. When I think of Canada, I think of a Country that is similar to the USA. But despite the fact that we share a border, our health care systems are quite different. I am not planning on having a 'political' conversation here about the advantages and disadvantages of socialized/universal medicine. As I know people have a range of opinions and feelings about this, yet after hearing this family's story, I can proudly say I am an American. Where I have the ability to decide and select my medical care and most importantly the care that Mattie received.  

It is hard enough having a child diagnosed with cancer. But can you imagine as a family turning to your health care system and finding inadequate care? How about your doctors NOT knowing about the most cutting edge treatment and research out there on your disease? Better yet, how would you like to be treated at a hospital that looks like a throw back to the 1970's? If I haven't made you pause yet, let's try this reality! As a parent, you do all sorts of research and discover alternative treatments for your child with cancer, but your government tells you that you are denied access to this care! Care that could be the only hope at saving your child? 

What I just wrote is the reality the family we met with yesterday faced in Canada. Which is why they are grateful to the USA and NIH (who is offering their child a clinical trial, which costs the family nothing to receive the medications). This family's story is harrowing and you should note that Ryken's cancer not only recurred, but his chemotherapy treatment caused him to develop a secondary cancer, non-hodgkin's lymphoma. I have attached a link below, if you wish to learn more about Ryken and his family! At the moment, I am on a mission to get connected to military members and local law enforcement. As Ryken has a dream of being such a public servant. Meeting these heroes of our society perks Ryken up and I am contacting everyone I know in hopes of getting police or military members to visit the family at NIH.

Ryken's Story:
https://calgaryherald.com/news/local-news/corbella-thousands-hoping-alberta-boy-arrests-his-cancer-with-experimental-treatment


Now how did yesterday's visit impact us? Well I would say, it left Peter and I in a funk. Each of us expressing it in a different way. Peter's funk can look sad and he will tell you he is depressed and my funk, is also internal. I am not so much sad, as I am absolutely numb and somewhat agitated. Thankfully we can talk about this with each other, of course not having solutions to this, but acknowledging that the visit has consequences. Not that we can contribute anything about the visit to how we feel, as we visited for about two hours and talked and listened to the family. 

We were both cognizant NOT to talk about Mattie. The visit wasn't about us, it was about this family. I wish all the cancer families that visited us in the hospital when Mattie was ill, took this stance. I absolutely HATED hearing about their childhood cancer stories. I found NO comfort in hearing about the experiences of others, and I believe this was the case because we knew Mattie's prognosis was grim to begin with. Hearing people's survivorship stories simply aggravated me.

But what about yesterday put us in this funk? For me, as I was listening to the family and hearing what they are facing, I realized..... they are like us! There is little hope for this sweet and bright young boy. They have tried everything to hold back the disease. The trial at NIH is their last hope and resort. It is heartbreaking to understand this and we understand this unfortunately all too well. In a way, watching them was like looking in a mirror. Meaning in this case I was the observer, not the one living with the nightmare of childhood cancer. Yet I am not your average observer, because I know what it is like to see your vibrant child dying in your arms. 

As tonight's quote points out..... dealing with trauma is complex and in a way never ending. Because to survive in our world, we have to place the medical traumas we experienced in a box. Yet through this blog and with each other, we do give trauma a voice. It is a constant internal conflict to manage the horrors we saw and the grief we continue to live with while navigating in a world that truly doesn't understand childhood cancer. So in a nutshell, we wouldn't have it any other way..... we are committed to helping families like ours, but we are also astutely aware of the fact that helping others expose us to similar traumas we experienced with Mattie. 

July 5, 2019

Friday, July 5, 2019

Friday, July 5, 2019

Tonight's picture was taken in July of 2005. Around the 4th of July! That year we took Mattie to the Outer Banks. By that point (after multiple summers of going to the beach), Mattie learned to appreciate the sand and the water. I just love this photo as it seemed to capture a happier, fun loving, and innocent time for our family. 

Quote of the day: In the truest sense, freedom cannot be bestowed; it must be achieved. ~ Franklin Delano Roosevelt


Peter and I visited a family today at the National Institutes of Health in Bethesda, MD. This family has traveled from Canada in order to secure life saving treatment for their 9 year old son. Treatment that they were unable to get in their home province. We were connected to this family by a fellow non-profit friend. I will share more about this visit tomorrow, as I am still absorbing the experience. As you can imagine it is a surreal experience to sit with a family who is walking a similar journey as us. A journey no parent wishes to hear.... that there is limited or no more treatment options available to combat the disease. 

With our visit, we brought coffee and tea (learned this from our very own support network), toys, books, and gift cards. Things we hope will support the family. 
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Meanwhile, last night, we decided to walk to the Kennedy Center to see the National Capital firework show. For the past two decades, we have watched this show from the same location in our complex. However, with the movement of the show this year, we had to find a new location. Turns out I really like going to the Kennedy Center terrace to see the show. There were lots of people around us, but it wasn't so packed that I felt insecure. I felt that the fireworks were bigger and more brilliant this year than ever before. 

Two companies (Phantom Fireworks and Fireworks by Grucci) donated the fireworks this year. To my knowledge this is a first for our city! From what I read about the show, the following were special features this year:

  • A display of the American flag in the sky 
  • A display of “USA” in the sky 
  • More than a mile of sky will be illuminated above and to the left and right of the Lincoln Memorial
  • The “made-in-the-USA” Grucci Gold Flitter Split Comets will be a prelude to the finale, creating a Golden Glitter matrix in the sky. The matrix is intended to celebrate a “brilliant future to come.”


The people around us were good natured, loved the show, and Peter added a lot of cheering sound effects. Which inspired others to join along.  


Do you see the stars?


July 4, 2019

Thursday, July 4, 2019

Thursday, July 4, 2019

Tonight's picture was taken in May of 2009, on Memorial Day to be precise. Friends dropped off streamers, flags and a bandanna. Mattie decorated his wheelchair in style and to me this is a wonderful patriotic photo to display on Independence Day. 




Quote of the day: The American, by nature, is optimistic. He is experimental, an inventor, and a builder who builds best when called upon to build greatly. ~ John F. Kennedy


This morning, Peter had the opportunity to walk down to the Independence Day Parade on Constitution Avenue. Peter snapped this photo of 23rd Street, NW. A major artery of the city, shut down completely. In all the years we have lived in DC, I can count the number of times this road has been closed on ONE HAND. 
Constitution Avenue! Completely shut off to vehicle traffic and what you can't see from this photo are the very high chain link fences erected for this occasion along the side of the road. People are behind the fences. 
The parade honored every branch of the military. 
All 5 branches of the military are represented: Army, Marines, Navy, Air Force and Coast Guard. 
The Marines!
The Navy!
The Army!
The Coast Guard!
The Patriots!
Uncle Sam!
There were floats too!













A patriotic Cadillac!















Given where we live, we saw every military flyover this evening! You can hear these mighty planes before you see them. It is truly an awesome sight to see a flyover from your own living room! 







Mattie would have absolutely LOVED it and as soon as I saw the Blue Angels it reminded me of the incredible air show we took Mattie to in 2007. Mattie was deeply interested in locomotion and understanding the mechanics it! The flyovers were beautiful tributes this evening to the courageous men and women who serve our Country. 

July 3, 2019

Wednesday, July 3, 2019

Wednesday, July 3, 2019

Tonight's picture was taken on July 4, 2009. That year we were invited by friends to a local resort to celebrate Independence Day. I was hesitant to do this, but we did get medical permission. I would have to say this weekend trip was a nightmare. Mattie was miserable. He felt different, was jealous that the other kids could run around and swim, and the whole thing deeply depressed Mattie. In addition to his depression, he was very angry and directed his anger on me. I managed it, but I can't think of this resort now without having BAD BAD memories. 


Quote of the day: America was not built on fear. America was built on courage, on imagination, and an unbeatable determination to do the job at hand. ~ Harry S. Truman



Peter and I had the opportunity to go out to lunch together today. It was a royal treat, to do something very different, and to sit and chat alongside the Potomac Rive! We can get a lot accomplished with our working lunches and today was no different. 
I am happy I introduced Peter to Del Mar. It is one of my favorite DC restaurants!


This evening, we took Sunny down to the Capital mall to see the set up for tomorrow's events. I can't tell you the thousands of people who have jobs thanks to this Independence celebration. So many Park Services people chatted with us tonight and many visitors to our Nation's capital passed us by and requested to meet and pet Sunny!
There are gates and barriers everywhere. We walked down tonight, because we are not going to the mall tomorrow. Crowds and me do not go together. 
Peter and Sunny with the Lincoln Memorial in the distance. 
The reflecting pool is completely gated off. It is like a thousand degrees in Washington, DC and I am quite sure if the pool wasn't gated off, people would be in it tomorrow. 
Stages, tents, gates, sound equipment, screens, and even a dress rehearsal tonight. We got to hear part of it and it drew crowds of people.  
The Washington Monument in the distance, with an ominous sky overhead. 
There are two military vehicles in front of the Lincoln Memorial and behind them, we could see a military band and a chorus rehearsing. 
When I am telling you the entire National Mall is gated, fenced and secured, I am not kidding. I walk Sunny to the Mall daily. I have been watching the set up for the fourth unfold over the last several WEEKS! 

July 2, 2019

Tuesday, July 2, 2019

Tuesday, July 2, 2019 -- Mattie died 510 weeks ago today.

Tonight's picture was taken in July of 2009. Next to Mattie was the Lego kit he and Peter worked on for about a day and a half. The Taj Mahal was a favorite of Mattie's and to this day it remains in our living room. Legos were truly therapeutic tools for us that also provided diversions from living in cancer 24/7. 


Quote of the day: The more you've struggled to heal and love yourself, the more inspiring your story will be to others when you come out the other side full of triumph, awareness, and honor. Don't give up. Your struggle today is the source of your wisdom tomorrow. Vironika Tugaleva


I would say that ten years into the grief journey, I have learn a lot. Which maybe why my highs and lows along the way, don't startle me now as they once did. At one time, if I had a low day, drowning in feelings about Mattie's death and how my life has changed..... I would worry that there would be no way out of it. That I would remain stuck or further plummet down a hole. But what I found was that my feelings would lighten and evolve, and perhaps something else would divert my attention from our family issues. A family that has forever changed, cut down from 3 to 2. 

You would think after a decade of facing this, that these erratic feelings would dissipate and perhaps just go away. They don't! They don't for me and they don't for all the other parents I know who have lost children to cancer. Why? I surmise because with each milestone and developmental change in our own lives, we are forced to face the reality of being childless. Old wounds reopen! Mattie's death certainly has consequences on our future. Some subtle.... what will holidays be like in the future, to more profound changes..... such as there is nothing that ties us to being in our home or even in Washington, DC anymore. Aspects of grief are not always rational, but I assure you it is easy to spin way out of control. Which is why I learned when feeling overwhelmed, I make no major decisions. 

I would say living life without Mattie is not how we saw our future. Yet we once had a child. We were once parents and our child connected us to friends. Friends who all have children, and of course it is natural everyone talks about their children. Whether small or young adults! It makes sense to chat about one's children! Yet it also makes sense that hearing about other children all the time can be challenging and wearing on us emotionally. Truly no one wins from a social standpoint with child grief, as we don't know how to interact with our friends and our friends with children don't know how to deal with us. A big quandary that has been one consistent truth in this decade long journey..... childhood cancer has affected our relationships with others!  

Being a mental health professional by training, you would think I would advocate for therapy and counseling support for all bereaved parents. Certainly there are benefits to talking to a trained third party. But I can also appreciate why this support fails many of us. Time and time again. Our society as a whole handles grief terribly, but the grief associated with child loss seems beyond the level of comprehension. In addition, sharing our story about Mattie and the ramifications on our lives takes courage and stamina. All attributes I conserve for myself, not someone else. At the end of the day, no therapist, no doctor, NO ONE is going to be able to help us cope with our grief, other than ourselves. A rather sobering reality which is why I always say that childhood cancer is not for the meek. 

July 1, 2019

Monday, July 1, 2019

Monday, July 1, 2019

Tonight's picture was taken in July of 2009. To me this was the quintessential Mattie photo! It captures his humor and love for life, despite how horrible he was feeling. 
A friend of his, gave him this wooden figure of Sponge Bob! What you see happening here, was Mattie trying to give me  his impression of Sponge Bob. 

Quote of the day: They’re (herding dogs) hardwired for the job, whether it’s hunting, herding, ratting, guarding, or all of the above. You don’t train working dogs to work. Training merely instills a measure of control to behavior that comes naturally. ~ Land Report Editors


This morning, I started my day with seeing a TV show on the Animal Planet. The show interviewed a trainer of herding dogs. Naturally I know Sunny is part border collie, making him a herder. But I did not quite understand the full ramifications of this! After I heard this man speak, I literally said..... now I understand why Sunny chases squirrels and rats. I can't stand Sunny's ratting! Little did I know that herding dogs herd, guard, chase, and rat by instinct! 

I remember meeting Sunny's foster mom. When I adopted Sunny, I wasn't in town to meet the caravan of dogs coming up from South Carolina. So instead, Sunny was fostered by a local pet lover for two weeks until I got back from California. Ironically, I remember when picking Sunny up from Leah's home, she told me..... he loves to chase squirrels and rats. I frankly did not make much out of that, until I took him out on my first walk. I won't forget it! Which is why I learned early on that I need to have a tight grip of Sunny's leash, otherwise I will go flying and he will go running. Sunny sees and senses squirrels. Lime he has x-ray vision!!! Sometimes I am prepared for his leaps and runs, and other times not! Squirrels are one thing, but RATS! We have more rats than people in DC. As soon as dusk approaches, out come these creatures. I swear Sunny is like clock work. At 8:15pm, where ever he is, he gets up, finds us, and wants to go walking!

Sunny loves his night walks, not for the walk itself but because he goes rat hunting! I am telling you, he is better than Orkin! Sunny will walk with his head crouched downward and looks like he is on a rat hunt. Which he literally is! I really thought the insistent focus on rats was about the chase! But after seeing today's show, I now understand this is his instinct. The instinct is to protect his space/farm by removing all PESTS! 

The trainer on the TV show mentioned that herding dogs are NOT for everyone and many of them land up back in animal shelters because they are TOO much for their owners. Which I have NO DOUBT is what happened to Sunny. Sunny is demanding, emotional, a major herder, and knows how to manipulate you to get his needs met. He has perfected it to a T! But of course I love him and he has added an incredible amount of life to our home, which has been sorely missing since Mattie died. With that said, I really enjoyed learning more about his breed today, as it helps me better understand the behaviors he exhibits. 

June 30, 2019

Sunday, June 30, 2019

Sunday, June 30, 2019

Tonight's picture was taken in June of 2009. Mattie was home recovering from his sternotomy (to remove tumors in his lungs). One of the items that became part of our every day life was this pink basin. It was from the hospital and given to us at each admission. Remember this was cancer we were talking about, and drugs produced nausea. You connect the dots on the usefulness of the basin. In any case, Mattie loved using it not for its intended purpose but to play. It was Sponge Bob's pool! Mattie made this cute Sponge Bob at the hospital and absolutely loved water play. Water play happened at both home and the hospital! 

Quote of the day: One cannot think well, love well, sleep well, if one has not dined well. ~ Virginia Woolf


I absolutely agree with Virginia Woolf. To me food is important! In fact, I can talk about a bad food experience for days. Somehow it personally upsets me. For me, dining out isn't solely about the food. Wrapped up in dining out is the restaurant's atmosphere and most definitely the service. For a restaurant to be memorable it must have: great food, wonderful service, and a beautiful setting. 

On Friday night one of our friends text messaged me and asked if Peter and I wanted to get together for dinner the following night (Saturday). Since weekends continue to remain challenging for us without Mattie, we said yes. Our friends wanted to come into DC for dinner. Which for us is atypical, since the majority of our friends live in Alexandria and therefore want to dine in their neck of the woods. So despite living in DC, I know more restaurants in Alexandria than I do in my own neighborhood! What I do know however, is that you can't dine in DC without a reservation! Or let's put it this way, it isn't a good idea. You will be turned away from a restaurant in most cases. In any case, finding a restaurant to have dinner at on short notice in DC is another challenge. But I was up to it. 

I found Succotash! Which is not only a type of food, but the name of the restaurant. We had never been to Succotash, but given what I was reading about it and its setting, I thought it would make for a special Saturday. 


This is what you see when you walk into the door of Succotash. It is inside the historic Equitable Bank building on F Street, NW and occupies 9,000 square feet. Which is spread across multiple stories. In my opinion, it is worth visiting the restaurant for its amazing setting!
Design accents include a glass atrium, two bars, a wraparound mezzanine that overlooks the main dining room, lots of restored wood, private dining areas, and leather-wrapped chairs and banquettes. The group that owns this restaurant kept the integrity of the original marble floors and mahogany paneling.

We sat on the second floor! Certainly we could hear the vibrant sound of the restaurant but I did not feel like people were on top of me. Which is SO TYPICAL in most restaurants now. Our server was equally lovely and the food was a wonderful fresh surprise. 



It was the weekend of dining out and socializing. Our niece is in DC this summer, doing an internship on Capitol Hill. It was her first week in town and we took her out to brunch today. Given that she lives in Georgetown, we opted to go to the Peacock Cafe. I associate this Cafe with Georgetown University Hospital. As our philanthropy contact at the Hospital used to take us to the Cafe over the years for lunch and dinner. It was wonderful to connect with our niece, share in her summer experiences, and to be available to her if she should need anything while she is here.