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: 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

Random Shots of Mattie, Family and Friends

July 23, 2016

Saturday, July 23, 2016

Saturday, July 23, 2016 -- The 8th Anniversary of Mattie's Diagnosis

Tonight's picture was taken on July 23, 2008. A day Peter and I will NEVER forget! I took Mattie to the pediatrician that day because he had been complaining of arm pain. I thought at worse, he strained a muscle. It would have never crossed my mind that the pain was caused by a massive tumor growing in his arm! Though Mattie had NO idea how profound a diagnosis he was given, he understood that something was very wrong. That same day he asked whether we could decorate our deck for Christmas! Mind you it was July! Under normal circumstances, I most likely would have said NO to this request. But when your child has cancer, your whole mind set changes, as do your priorities and perspective! So Peter and I pulled out all the outdoor lights and decorated. As you can see Mattie was in my lap for this photo. When Mattie was scared and overwhelmed, this was the position he always took..... no matter his size!


Quote of the day: I only miss you when I’m breathing.Jason Derulo

Typically I am NOT a Facebook fan, but it is on anniversary dates like today, that I typically post a photo about Mattie and our lives together. I do this for many reasons, one of which is to remind people that Mattie existed and Peter and I are STILL living with his loss. Mattie's death will always be a part of us, and though the world would like to think things are fine and TIME HEALS ALL WOUNDS. Well I can safely say...... IT DOESN'T and I would contend those who are honest will admit to you that things DO NO get better after year one of the loss. They instead get more complex and emotional and that is typically when one's care community stops with their support. Which further compounds such a significant loss. 


We have a friend whose daughter has been ill for quite some time. Over the course of this week, I connected this family with Dr. Shad (the oncologist who assisted Mattie when he was dying). 

Today Peter and I drove to Baltimore to visit this young girl and her mom in the hospital. I am very sensitive to caregivers of children who are hospitalized and know how important it is to receive a care package when visiting. 

So today I brought goodies for both mom and daughter. 
The goodies were vast from a "thinking of you" balloon, to all sorts of food goodies, a frappuccino, candy, an adult color book and crayons, and hair ties. 
When I went to purchase the balloon this morning from our local florist, I was telling him about the young girl I was going to be visiting today. He was so taken by this story, that he gave me this beautiful piece of bamboo to give to her for free. He wanted to wish her health, strength, and courage. Isn't that a beautiful and meaningful gesture?
Despite his young girl being ill, she bestowed on me this beautiful MOON thank you card! Which meant a lot to me. 
This was the outside of the envelope of the card! Very clever!!!
After our hospital visit, Peter and I went out to dinner at a restaurant Mattie loved. He loved it because a toy train goes around the periphery of the restaurant, along a ceiling track. Can you see the train above on the track? This would have been a thrill to Mattie. 






I am reposting below the blog from July 23, 2014. It details Mattie's diagnosis day! I think it says it all................

On the anniversary of Mattie's diagnosis, it seems appropriate to reflect on the day that he was diagnosed. Two weeks before diagnosis, Mattie was enrolled in a tennis camp with his friend, Charlotte. In fact, I always credit this camp for identifying the issue before Mattie broke a bone, which is a very typical way kids with osteosarcoma are diagnosed. Mattie had never played tennis before, so it seemed very plausible that he injured himself in camp. Mattie complained of arm pain and he was having trouble lifting his arm. He couldn't lift his right arm over his head at all. While he was in the second week of camp, I had to attend a conference in San Diego. So I flew out to San Diego and Peter took off of work to spend those days with Mattie. It was during that time, Mattie and Peter designed two garden fountains for me for my birthday. Gifts that are precious and priceless to me and I still use them today! In fact while I am writing this book chapter this summer, I have the windows open to listen to Mattie's fountains!

While I was at the conference, I would call home daily. Peter would give me a report about Mattie's arm. I did not like what I was hearing and knew as soon as I got home, I was taking Mattie to the pediatrician. Which is literally what I did. I got home on a Saturday and on Monday, I took Mattie to be examined! Fortunately Mattie had a great pediatrician who took us seriously. Because the number one reason children's cancer metastasizes at the time of diagnosis is because it isn't detected early. Pediatricians are not used to screening for childhood cancers, and it is understandable because it is rare. After all, for example only 3% of children in the US are diagnosed with osteosarcoma, the kind of cancer Mattie had!  

Mattie's doctor sent us for an xray that day. Since Mattie never had an xray before or any kind of scanning, he was NOT afraid of the process at all. He hopped on up and complied. However, I was with the tech behind the glass partition and I could tell he wasn't happy with what he was seeing which perplexed me. He just kept taking xrays. But again, I thought nothing of it. He then escorted us to a holding room, which had other people in it, all adults. While in the room a phone rang. None of the other patients answered it, so I went over to get it. The person asked to talk to Mattie's mom, which of course was me. On the phone was the radiologist who proceeded to tell me that something was found on the xray and I had to go back to the pediatrician's office. But I did not like his tone on the phone, so I told him I wasn't leaving the room until he told me what he saw. It was at that point on the phone, in front of a group of strangers, that I heard Mattie had osteosarcoma. With Mattie watching me no less. 

When he told me Mattie had osteosarcoma, I had no idea what that meant, so I asked him for clarification. He told me it was a form of bone cancer and I asked him about treatments. Again, he was sketchy and told me to go see Mattie's doctor. I kept calm for Mattie's sake and somehow found my way back to the doctor's office with Mattie in tow. I then text messaged Peter to come to the hospital. Mattie's pediatrician seemed upbeat about the prognosis and treatment, while I felt my world was crashing in on me. Of course what she did not know at the time was this was only one of many primary bone tumors that Mattie had. With additional scanning, we learned that Mattie had a bone tumor in both arms, his right leg, and his left wrist, making Mattie's case HIGHLY unique and very rare.  

This may have occurred six years ago today, but for me, it may have happened yesterday! The details are very clear in my head. As I imagine anyone's cancer diagnosis day would be!

July 22, 2016

Friday, July 22, 2016

Friday, July 22, 2016

Tonight's picture was taken on July 13, 2008. Literally TEN DAYS before Mattie was diagnosed with cancer. We had no idea how our world was going to be transformed at that naive moment in time. We took Mattie to Roosevelt Island that weekend to feed the ducks! A Mattie favorite!!!





Quote of the day: Mostly it is loss that teaches us the worth in things. ~ Arthur Schopenhauer


Each summer, my friend Ann's cousin comes down from Boston to spend two weeks with her. JP loves to eat, so when he is here going out to lunch and chatting is how we spend our time. 

Today my friend Tina and I got together and took JP out around Del Ray, VA. We had gourmet burgers at Holy Cow and then went for home made custard at the Dairy Godmother. I will never forget this store, because when Mattie was battling cancer, the Dairy Godmother sent to the hospital a beautiful fairy godmother wand for Mattie.

We had many silly and fun moments together today. We even took Selfies (using my iPhone) together! Not sure JP knew what to make out of us, but he went along for the fun. 
On my walk home from physical therapy today, I couldn't help but snap photos of these glorious Black Eyed Susans!
To me they are a happy and special sight!
They truly are short lived, which is why I wanted to capture their beauty!

July 21, 2016

Thursday, July 21, 2016

Thursday, July 21, 2016

Tonight's picture was taken in August of 2005. This is a photo I just recently found and I am so happy to have it! I remember this moment in time. We were visiting my parents in Los Angeles. A neighboring city was having a festival and closed down some streets for all sorts of activities. As you can see one of the activities was pony rides. This wasn't Mattie's first time riding a horse, which was why he looked much for confident in his saddle. Mattie had a great time that day on the ponies, petting other visiting barn yard animals, and even riding around on a mini train. 


Quote of the day: Talent wins games, but teamwork and intelligence wins championships. Michael Jordan



As of last evening, Peter and I have been hosting seven psychosocial professionals in Washington, DC. The Foundation paid for these individuals to come into town and meet in person for a seven hour long strategic planning meeting. Strategic planning is NO easy endeavor. It requires a great deal of time, mental energy, and a willingness to openly share ideas and resources. 

Fortunately Peter was a business consultant before entering his current occupation. This skill set is tremendous because typically non-profits have to pay thousands of dollars for what he did with us today, which was to develop goals, objectives, and activities necessary to implement the newly published psychosocial standards of care. This task may sound EASY, but it isn't because psychosocial care is quite complex. Especially when you factor in that multiple professions provide this care and we need the assistance of legislators and health insurance companies behind us to make this a reality. 

Here were the wonderful professionals in attendance:

Dr. Nina Muriel (Chief, Division of Pediatric Psychosocial Oncology
Senior Physician at Dana Farber Cancer Institute)
Dr. Bob Noll (Professor of Pediatrics, University of Pittsburgh School of Medicine)
Dr. Anne Kazak (Co-Director of the Nemours Center for Healthcare Delivery Science)
Dr. Mary Jo Kupst (Professor Emerita of Pediatrics, Medical College of Wisconsin)
Dr. Andrea Patenaude (Director of Psycho-Oncology Research in the Divsion of Pediatric Oncology, Pediatric Oncology, Dana-Farber Cancer Institute)
Dr. Lori Wiener (Co-Director, Behaviorial Health Core
Head, Psychosocial Support and Research Program, National Cancer Institute)
Dr. Pam Hinds (Associate Center Director, Center for Translational Science; Director, Nursing Research and Quality Outcomes, Children's National Health System)


The above photo was taken at dinner last night. This photo was taken today after our session concluded! By that point, we were all worn out and brain dead due to great concentration and focus.   

Peter and I want to thank Voxiva, INC for allowing us to use their wonderful conference room all day today! Voxiva has been incredibly supportive of us both emotionally and financially. In addition, Peter's boss (Justin, Co-CEO of Voxiva) even came in to chat with the group for thirty minutes. Justin shared his expertise working with health insurance companies and presented some viable options for us to pursue with the psychosocial standards. 

July 20, 2016

Wednesday, July 20, 2016

Wednesday, July 20, 2016

Tonight's picture was taken in August of 2005. This is another great photo that I literally just found in our on-line photo gallery that we maintain. Thankfully it was there because it is no where to be found on my computer. This photo was taken at one of the themed parks we took Mattie to while visiting my parents in California. The irony is at the time this was just cute cut outs of sunflowers. But now, after Mattie cancer battle, sunflowers mean a great deal to me. They symbolize love, community, and compassion. How I arrived at that notion was because Mattie's care community gave me lots of sunflowers through Mattie's cancer journey. We couldn't have flowers in the PICU of the hospital, but whenever we were home, I was always surprised with a bunch. This photo captured my ultimate sunflower.... Mattie. 


Quote of the day: In my garden there is a large place for sentiment. My garden of flowers is also my garden of thoughts and dreams. The thoughts grow as freely as the flowers, and the dreams are as beautiful. ~Abram L. Urban


Our hibiscus is blooming today. The irony of this plant is it looked practically dead this spring. After winterizing inside, we brought it back outside for the summer and I literally chopped the plant way back. Apparently it responded to this dramatically. The plant came back with a vengeance. I bought this plant last spring at home depot. I remember talking to their plant expert there and this particular woman worked in Hawaii for years cultivating hibiscus. She helped me pick this one out and told me that the purple flowered hibiscus are rarer. It is simply a beautiful plant that adds to our garden. 

There are wonderful lessons one can learn from gardening. Lessons that apply to our every day world and lives. There is something to be said for nurturing something, because most times.... you get a response. The ironic thing is the response goes two ways. Certainly in this case the plant is growing and thriving (which is positive for the hibiscus) but on the other hand, seeing its beauty gives us great happiness and hope. 

We started growing string beans from seed about a month ago. Our plants have been great producers and we had a whole bunch of them for dinner last night. They have a much more tender skin than what you buy in the super market. 
I love banana lantanas. Lantanas are hardy plants and when things start dying off in our garden at this time of year (because of extreme heat), they get replaced with lantanas. 
Check out the progress on our carrots! You will notice a piece of wood to the left of the carrots. This is one of Mattie's claimed pieces, or prized findings along one of our nature walks together. There are many items on our deck that came from our Mattie walks and they remain a part of our deck today. 
I love our Black Eyed Susan. She is a courageous plant! She remains outside over the winter, but every spring, she surprises us with a great come back. I haven't had the best of luck with perennials, but this one is a keeper!

July 19, 2016

Tuesday, July 19, 2016

Tuesday, July 19, 2016 -- Mattie died 357 weeks ago today. 

Tonight's picture was taken in August of 2005. Do not ask me what happened to my electronic files from August of 2005. All I know is I have NO photos from that month and year. So today I turned to our on-line shutterfly account and was able to download several photos! It is like seeing photos for the first time. Which is special! I can remember these moments in time, but was upset that I had no record of them until now. This photo was taken in Los Angeles. We went out that summer to visit my parents. Though Mattie was cautious around water, Peter started to introduce Mattie to their pool. Naturally whatever Mattie was doing, I was usually photographing it! Never realizing what these photos would mean to us as the years went by. 


Quote of the day: Blessed is he who expects nothing, for he shall never be disappointed. Alexander Pope




There is a great deal of truth in Pope's quote tonight. We live each day with some sort of expectation. Expectation perhaps of what you will accomplish at work, expectations for the future, expectations for our spouse, family, and friends. Yet having expectations is a double edged sword, because what we may want and need doesn't always match up with the actual interaction or result. Then what? I am quite certain that the crux to many problems we face centers around expectations. Yet how do we go through life without having expectations for those in our lives? We aren't machines with no emotional responsibilities and needs. 

Time and time again, I hear about disappointments and the severing of friendships after a mom's child dies from cancer. Childhood cancer is one of those topics that divide people and sends them running in the other direction. Which is sad, because friendships are truly what is needed the most to cope and survive through loss. Soon after Mattie died, I lost a very close friend of mine. A friend I knew for 15 years. She severed our relationship because she said, Mattie's cancer and death were making her physically sick! I may have had the expectation that we would always be friends and she would want to remain a part of my life after such a tragedy. But I was WRONG! 

I used to be a person who had expectations for others and the world around me. However, after Mattie's cancer, I see the world as it is. NOT with rose colored glasses. I have learned not to have expectations for anything or anyone, because the only one I can have expectations for is myself. I am sure that sounds cynical, but it is where I am at. 

Tomorrow, Mattie Miracle's strategic planning meeting begins. We have invited our core psychosocial researchers to DC, to plot out our the next phase of our Standards project.... Implementation! So it will be a busy two days for us!

July 18, 2016

Monday, July 18, 2016

Monday,  July 18, 2016

Tonight's picture was taken in June of 2009. Mattie was in the hospital recovering from a sternotomy. Which basically opened up his chest cavity to remove nine tumors from his lungs. This was truly hard for Mattie because this was his third major surgery in a very short period of time. Yet despite the medical trauma piling up all over the place, there was a level of trust and understanding all three of us had with one another. We were all vulnerable on every level, yet together we confronted issues head on. Mattie always knew if something went wrong, we were certainly going to step in and correct it. He had trust and faith in us. 


Quote of the day: Owning our story can be hard but not nearly as difficult as spending our lives running from it. Embracing our vulnerabilities is risky but not nearly as dangerous as giving up on love and belonging and joy—the experiences that make us the most vulnerable. Only when we are brave enough to explore the darkness will we discover the infinite power of our light. ~  Brené Brown


I am sure there are people who read this blog who tune into TED talks on line. What is TED? Well it is...................... a nonprofit devoted to spreading ideas, usually in the form of short, powerful talks (18 minutes or less). TED began in 1984 as a conference where Technology, Entertainment and Design converged, and today covers almost all topics — from science to business to global issues — in more than 100 languages. Literally you can just google TED, and you will see hundreds of talks presented by well known professionals at your fingertips. I have seen probably a handful of TED talks over the years, but this morning I tuned into a talk called the Power of Vulnerability. Presented by Dr. Brene Brown. 

Dr. Brené Brown is a research professor at the University of Houston Graduate College of Social Work. She has spent the past 13 years studying vulnerability, courage, worthiness, and shame. Brené is the author of three #1 New York Times Bestsellers: Rising Strong, Daring Greatly and The Gifts of Imperfection.


In any case, Brown's 2010 TED talk, The Power of Vulnerability, is one of the top five most viewed TED talks in the world, with over 25 million viewers. So keep that in mind. 

I really thought I was going to like this topic and talk but the more I listened to it, the more I felt annoyed by what I was hearing. I felt she was very self serving, and though she maybe trying to emulate vulnerability right there on the stage for us, it did not resonate with me. In fact, I felt that she was making the vulnerabilities people have shared with her over the years seem almost trite. What truly caught my attention is that she spent six years investigating the Power of Vulnerability through analyzing interviews, essays people have submitted to her and so forth. The length of time doesn't surprise me per se, because she was on a quest, but what surprised me was WHAT SURPRISED HER! She was so perplexed by the fact that "wholehearted" people (people who cultivate certain things like resilience, gratitude, authenticity, trust, creativity, meaningful work and at the same time are able to let go certain things in their lives) find being vulnerable beneficial. It isn't truly negative. In fact, she says that being vulnerable is the "birthplace of joy, love, creativity, and belonging."

Brown was so surprised by the benefits of vulnerability that she turned to the help of a therapist for a year to help her process her findings. Mainly because this realization was counter intuitive to her and most likely disproved her hypotheses. As she kept on talking, I began to understand why she needed to go to see a therapist because she herself was afraid of being vulnerable. Like so many in our world, being vulnerable is viewed as weak. WE CAN'T look weak or OUT of control! God forbid. The problem with all of this is that life is FILLED with vulnerabilities and unless we confront them, talk about them and work on them, they only stifle our growth and development. 

It is through confronting and living with vulnerability that we truly learn more about ourselves and the world around us. I wasn't at all surprised as Brown was, by the feedback she got from others who live with vulnerability. Look at that photo of Mattie above. Peter and I lived with extreme vulnerability 24/7 for over 15 months. In fact, I would argue we still live with vulnerability. We are a couple who raised a child for seven years and wanted a family, and now thanks to cancer we are left childless. We no longer fit in with our friends and we continue to work on defining ourselves and our relationship with each other. This does something to you, but in the process it also opens up your thinking and how you feel about yourself, your circumstances, and the rest of the world. Can I understand Brown's initial perspective on vulnerability, sure! But it was a limited perspective. A perspective in a way devoid of actual experience with vulnerability. 

Now with that said, would life have been better for Peter and I without this monumental vulnerability? Absolutely! Do I think I would have found joy, happiness, and creativity in other ways..... MOST DEFINITELY! What I agree wholeheartedly with Brown on is that we can't selectively numb vulnerabilities, without numbing all emotions such as joy, gratitude, and happiness. When we numb how we feel the by-product is that we are deeply miserable and constantly looking for purpose and meaning in our lives. 

To View Brown's Power of Vulnerability Talk, click below:

https://www.youtube.com/watch?v=iCvmsMzlF7o


July 17, 2016

Sunday, July 17, 2016

Sunday, July 17, 2016


Tonight's picture was taken in July of 2008. Literally about two weeks before Mattie was diagnosed with cancer. Doesn't he look like the picture of health here? That weekend we went to visit the DC Aquatic Gardens, to see the lotuses in bloom. An extraordinary sight and one we tried to do every summer with Mattie. Mattie loved the freedom and peacefulness of the gardens and he especially loved the fact that on every trip we always saw some form of wildlife.





Quote of the day: The greatest gift of the garden is the restoration of the five senses. ~ Hanna Rion


It was the lotus festival this weekend at the DC Aquatic Gardens. Which means that the Gardens were packed with people. However, if you visit these Gardens after the festival is over, the place returns back to its peaceful and tranquil self. Yet these flowers are stunning, so you can see why people show up even with humidity and over 90 degrees in the sun to see these beauties!
Literally there are fields and fields of lotuses. For as far as the eye can see. 
A close up of one of these beauties!
I find the life cycle of the lotus fascinating. It starts out with its bud looking like a shower head (on the left), then over time, it develops a flower bud (on the right), and of course once it opens up it looks like the photo above. 
The pink of a lotus against the beautiful blue sky. 
The Gardens are also filled with ponds that contain glorious water lilies. I am quite sure if Monet were alive, he would be inspired here. 
A light pink water lily
A white lily
I captured this as a remembrance of Mattie. Mattie loved the dragonflies, turtles, and lizards on our walks. 
Can you see the turtle? To me he blends in beautifully with the water lilies. 
Peter captured a photo of this lizard! It was the lizard's kind of weather day..... hot and sunny. Not sure Peter was as in love with it, but he has become a good sport over the years. I am like the lizard, the hotter it gets the better I operate.  
I am a big fan of canna lilies and the Gardens do a beautiful job with their flower beds.