The Mattie Miracle Walk and Family Festival was a $55,000 success!!!

The Mattie Miracle Walk and Family Festival was a $55,000 success!!!
Thanks to all who attended, contributed, volunteered, and helped to make this day possible! More psychosocial miracles are bound to come!!!

Mattie Miracle selected to be the Flame of Hope award recipient!!!

Mattie Miracle selected to be the Flame of Hope award recipient!!!
The Georgetown University Hospital board nominated and selected Mattie Miracle to be the recipient of the Hospital's highest honor, the Flame of Hope award. The Foundation will be bestowed this honor on March 29, 2014 at the Georgetown Pediatrics Gala.

Mattie Miracle's Interview on Fox 5 -- 3rd Annual Candy Drive is a 2000 pound success!

Mattie Miracle's Interview on Fox 5 -- 3rd Annual Candy Drive is a 2000 pound success!
Thank you for making our candy drive a major success!!!!

4th Annual Walk & Family Festival -- A HUGE Success!!!

Mattie Miracle on Fox 5 News -- Candy to Remember Mattie--November 15, 2012

Mattie Miracle on Fox 5 News - May 11, 2012

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 second anniversary!

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

We are a 501(c)(3) non-profit and tax exempt charitable organization dedicated to finding better treatments and a cure to Osteosarcoma and Childhood Cancers. We help build the awareness of osteosarcoma and childhood cancers, and educate the public and medical professionals about the realities of childhood cancers. We advocate for the psychosocial needs of the children and their families who are fighting this terrible disease. Please visit the website at: http://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

Number of Visitors Since October 12th, 2008

October 22, 2014

Wednesday, October 22, 2014

Wednesday, October 22, 2014

Tonight's picture was taken in October of 2004. Mattie was two and a half years old and this was his first year going to fall festivals. Actually it was also a FIRST for Peter and me!!! There were NO such things as these massive fall festivals when we were growing up. When I say a fall festival I mean an event that is open to the public and runs for more than a month in one location. This event can consist of large slides, hay wagon rides, moon bounces, other rides and activities and corn mazes. If you want to see a link to a local farm that has everything possible that one could want to do, go to: http://www.coxfarms.com/attractions.aspx. They even have something after hours for adults that looks like it would be the perfect Halloween treat for the brave of heart and spirit. In 2004, when Mattie first went to these fall festivals, he was intimidated by these HUGE slides. As was I! Mattie always had a fear of slides, but with Peter's help, Mattie bravely went down them. As Mattie got older and with each subsequent year we brought him back to the festivals, he eventually went down these slides ALL BY HIMSELF!


Quote of the day: Find what is meaningful to you and stand by it. Even if you begin to wonder if there is any meaning to anything, continue to be yourself. Jay Woodman


Peter and I had a full day today! It started with us being locked out of room! We had been having trouble with our room keys since last night but the hotel kept insisting that it was us who did not know how to use the keys properly! By this morning I had just about had it! I had security up at our door and hotel management. By the time they assessed it, they agreed with us! The problem was significant and we needed a new room! So that meant we had to pack up all our items and move later in the day because this 1300 room hotel was fully booked and couldn't accommodate us into another room until after 3pm! The timing of this was really rotten because we missed a good portion of the morning events. 

Our entire 1300 room hotel is fully booked for this conference!!! This is a very unique conference because multiple disciplines are meeting at the same time. So literally it is like three conferences are taking place at ONE time. One track is geared for parents and survivors of childhood cancer, another track is geared for medical doctors, and the final track is geared for psychological professionals. Peter and I juggled back and forth today between the parent track and the psychological track! The main issue I am having is ALL the sessions are 15 minutes long. My brain doesn't absorb anything in this time frame and if that wasn't bad enough everything was back to back. So right after one 15 minute session was another and so it was hard to process what you just hard, much less ask a meaningful question. 

This afternoon, we addressed the audience of international parents. There were about 150 parents. Our topic was "When tragedy inspires hope: A parents' call to action to create a psychosocial standard of care for childhood cancer." Our presentation was well received and parents really appreciated our voice and our desire to advocate for psychosocial care. Keep in mind that this is an international audience and we are advocating on a national level. But they did not take issue with this! They saw the merit in the message! 

What our message ultimately was.... is that psychosocial support is crucial and it has to happen beyond the treatment phase. It must continue into survivorship, or end of life care and especially into bereavement and grief. I mentioned that survivors and those in bereavement are the forgotten ones and this has to change. This resonated with everyone in the room!!!

After our presentation, the audience had the opportunity to ask questions. We received several questions about our actual standard. People wanted to know what a sample standard sounded like. So Peter read one of our standards to them! They had other logistical questions. Then one man stood up and thanked us for our courage and hard work. He said he knew the labor of love this entailed. He then proceeded to tell us that he too lost an only child to osteosarcoma. Multifocal osteosarcoma, just like Mattie! Multifocal osteosarcoma is VERY RARE! So rare, I never met another child like Mattie who had it, so this man caught my attention immediately. What I could tell as he was talking to me was he understood my pain deeply and wanted to convey this. He wanted me to know that he had to divorce his wife, that they no longer shared a bond anymore after the loss of his daughter. He also then stated that he felt that from observation it seemed like Mattie's death took its toll out on me the most. 

I have to say that I wasn't necessarily expecting such a profound comment to be coming at me from a perfect stranger. How could someone I never met, who hasn't even spoken to me before, know me better than people I interact with on a weekly basis?!!! Yet I was standing in front of a room of 150 people and he just made a very emotional and tender disclosure about himself that needed to be acknowledged. So I went back to my roots...... I became a counselor. I reflected back on what I just heard and validated what he was saying. I especially wanted him to know that his daughter must have been a special child too, just like Mattie. Somehow that comment truly resonated with him. At the end of the session, the moderator, dedicated the session to Mattie and this man's daughter! Which I thought was truly meaningful!!!!

I debated how to prepare for today's presentation. I could have gotten uptight about specifics, but I decided that in a group of fellow parents I have to be real. We have all lived this topic and therefore coming at this presentation from this approach was the only way I could mange doing this in the allotted time. Because frankly I can't do anything well in 15 minutes. I don't like time constraints especially when talking about Mattie. 


We snapped this photo today with Cara, Nicole, and Debbie! We met these wonderful ladies in Columbus, Ohio, when we did the keynote address at their APHOES conference in March of 2014. APHOES is the professional organization for educational specialists who work to meet the educational needs of children with cancer. Debbie recently reached out to me and in May of 2015, Peter and I will be going to New York City to be giving a keynote address to the NY/NJ chapter of the Association of Pediatric Hematology/Oncology Nurses. As an aside, I learned a fun fact that all three of these women are Italian, like myself. So we had a good time chatting about that today and uniting around our cultural heritage! 

October 21, 2014

Tuesday, October 21, 2014

Tuesday, October, 21, 2014 -- Mattie died 267 weeks ago today.

Tonight's picture was taken in October of 2004. We took Mattie to the Leesburg Animal Park Pumpkin Village and he had a great time! That was one of our family traditions that we did every year. Actually we went to that park often, because Mattie loved interacting with animals, but the combination of that with the fall festival activities was always a hit!!! Got to love the sheep, Peter, and Mattie in this photo! Each one of them had a story to tell.

Quote of the day: Sometimes, the simple things are more fun and meaningful than all the banquets in the world ... ~ E.A. Bucchianeri


It has been a whirlwind of a day as I have been doing last minute things to prepare for the trip to Toronto! I am signing off from DC and the next time you hear from me will hopefully be from Canada. Peter and I are presenting on Wednesday and on Saturday and in between we have dinners and other things to attend. So it should be a busy time for us! Of course with the beauty of technology, Peter is also juggling work from Canada! Which won't be easy for him, but somehow he seems to manage it! I am not sure where we would be without technology. It keeps us connected which is a blessing and a curse all at the same time. I am not implying I wish to live without technology, but...........................!!!! I was sent this great You Tube video the other day and the message in it does make you pause. Doesn't it??? The title of the video is "can we auto-correct humanity?"

http://youtu.be/dRl8EIhrQjQ

October 20, 2014

Monday, October 20, 2014

Monday, October 20, 2014

Tonight's picture was taken in November of 2003. I eluded to this photo in last night's posting and I found it!!! Mattie just loved this chicken. He really did not want to catch the chicken as much as he wanted to imitate her. But of course the chicken had no clue, I am sure she was frightened nonetheless! 


Quote of the day: Perhaps the only limits to the human mind are those we believe in. ~ Willis Harman 


Today was a busy day as I prepare for a conference in Toronto! In the midst of that I realized that I also had another conference proposal to generate because the application deadline is October 31. At many points today I wanted to say, JUST FORGET IT. I am tired and somewhat mentally spent. But there is some truth to tonight's quote..... 

My friend Ann sent me a link to a story entitled, A Poet On Losing His Son: 'Before You Heal, You Have To Mourn.' The author is Edward Hirsch. I included the link, because it is really worth the read and also worth listening to his 7 minute interview as he reads some of his poetry regarding the death of his son. Mr. Hirsch is a poet by profession and is naturally gifted at expressing himself in this manner. Which helps, but what I found intriguing is not only his feelings but his insights on GRIEF!!!
http://www.npr.org/2014/09/05/345796530/a-poet-on-losing-his-son-before-you-heal-you-have-to-mourn

This dad openly admits that after losing his son tragically and unexpectedly, he couldn't function at work. He also became desperate and started to fear that he would forget memories and things about his son! Which I totally understand and in part feel compelled to write the blog. Are there days I rather not write? Absolutely!!! It is very taxing to have to sit at the end of the day and sometimes be open about my feelings, but for the most part I write because it provides me a space to keep Mattie alive. Grieving parents do not have such spaces in our daily lives!!! Mr. Hirsch expresses this same sentiment, which is why he writes his poetry! 

I love how Mr. Hirsch explains in his interview how he initially began talking about his son Gabriel to family and friends and then reached out to strangers in a coffee shop! Anything to keep the stories alive, to make sure his boy and his spirit would never die. When writing he feels he is with Gabriel. He is a poet at heart and poetry takes courage and it makes him articulate how he is FEELING. It allows him to express himself and it gives him a place to put his grief. He is so right, our society is all about HEALING and NOT about grieving. In fact we don't even like hearing about grieving and we want people to get over it as soon as possible. Unfortunately it doesn't work like that.

I absolutely love Mr. Hirsch's description of Mourning. To me it is spot on beautiful. I couldn't have captured it better. A parent's grief is long term and internal. No one really walks this lonely journey with you. The analogies are all truly illuminated in this poem, such as carrying a bag of cement, up a mountain, but the trick is there is no top to this mountain. It is endless and his description of TIME resonates with me to no end. This is a man who gets it! BRAVO!!!! There is someone out there who speaks my language. 

Excerpt: Gabriel

I did not know the work of mourning
Is like carrying a bag of cement
Up a mountain at night
The mountaintop is not in sight
Because there is no mountaintop
Poor Sisyphus grief 
(NOTE: In Greek Mythology Sisyphus was punished for chronic deceitfulness by being compelled to roll an immense boulder up a hill, only to watch it roll back down, and to repeat this action forever. So this is unending grief, too heavy to bear.)
I did not know I would struggle
Through a ragged underbrush
Without an upward path
Because there is no path 
There is only a blunt rock
With a river to fall into
And Time with its medieval chambers 
Time with its jagged edges
And blunt instruments
I did not know the work of mourning
Is a labor in the dark
We carry inside ourselves

October 19, 2014

Sunday, October 19, 2014


Sunday, October 19, 2014

Tonight's picture was taken in October of 2003. Mattie was a year and a half old. We took him to a fall festival and within the festival there was a petting zoo. I am not sure who had a better time at this event, Mattie, Peter, or me!!! I loved watching Mattie check out each of the animals for the first time. I got to snap the photos for part of the time, why Peter helped explain the animals to Mattie and then supported him as Mattie got up close to pet them. Then we swapped places so Peter could watch the process. Somewhere in our photos, we captured Mattie acting like a chicken and literally running around the pen flapping his arms. There were many sides to Mattie, which made him an absolutely fascinating child and NEVER boring. 

Quote of the day: Life begins on the other side of despair. ~ Jean-Paul Sartre


Since yesterday we spent a great deal of time captured by the computer working, today we spent more time away from cerebral activities. This is what Mattie's memorial Yellowwood tree is looking like this Fall! With the changing of the season, the tree should turn a golden yellow! Or that is the HOPE! There are three reasons why we selected the Yellowwood tree for Mattie's memorial tree. The first is there is NO other Yellowwood tree on the campus, making the tree very unique to Mattie's school. Having a special tree representing Mattie's life is symbolic to Mattie's character. The second reason is that in the Fall, the tree's leaves turn a golden yellow. Gold is the official color of childhood cancer. Therefore, that seemed appropriate and third, in the spring the Yellowwood tree flowers. Mattie's birthday is in April and to us that seemed like a lovely gift timed around Mattie's birthday.  

In September we tied a GOLD ribbon around the tree and of course all the LEGO ornaments, wind chimes, bird house, hotwheels cars, and trains hanging from the tree are all doing fine!

We ventured to Roosevelt Island today. I snapped some photos while there. This is the city of Roslyn from the Island.











The sky is SO BLUE today! Not a cloud to be seen!














This is our Classic Roosevelt Island snapshot. When we would walk Roosevelt Island with Mattie, Peter would always capture a photo in this location. As the seasons would change, he would follow them right from this spot. This huge pine tree in the distance..... I have seen in over the course of so many decades, in all kinds of weather. Whether I was happy or sad, in good times or bad. Despite how I am feeling, there it stands to greet us, like a beacon. 

I have always been a fan of ducks! Mattie loved them too. I could watch them for hours. This fellow just seemed so regal!

October 18, 2014

Saturday, October 18, 2014

Saturday, 18, 2014

Tonight's picture was taken in October of 2006. Mattie was at a fall festival and as you can see in a moon bounce and jumping around. This was another thing that Mattie did not naturally gravitate to. Moon bounces can be intimidating places for some children because they are loud, chaotic, and once inside kids are falling all over each other. These were things Mattie did not care for. But over time we found a way around all of them so Mattie could enjoy the experience! 


Quote of the day: Don't judge each day by the harvest you reap but by the seeds that you plant. ~ Robert Louis Stevenson



Peter and I spent the day working on a presentation for next week's conference in Toronto. Many of the presentations at the conference are SHORT! I have found the shorter a presentation is the HARDER it is to deliver. Mainly because it is very challenging to deliver anything of substance, and I feel our story is of great substance. So the pressure is on. One of the highlights of my day was receiving this lovely lake photo from my friend Mary Ann. She went for a walk, and while on her journey she sent me photos and some video clips. She wanted me to know she was thinking of me. Also that there were scenes along her trip today that Mattie would have also appreciated.... such as a woolly bear caterpillar and a house fully decorated for Halloween. Mattie would have most definitely enjoyed these sightings!

As promised, I uploaded some of the power point slides below that we have been working on for one of our presentations next week. The presentation is to address the Quality of Life for Mattie and us from treatment to now and how it influenced our decision to advocate for a national psychosocial standard of care for childhood cancer. 

Of course it would be important to understand what Quality of Life even means. That isn't so easy to define per se or even measure. But in a nut shell quality of life is a concept made up of several dimensions, including an individual's physical functioning, psychological state, social functioning, and physical discomfort. 


We decided to have a simple slide depicting Mattie as a healthy child. We wanted the audience to know that he was born healthy and lived an active life up until the age of 6. This included going to school, having friends, and doing all the things typically developing children get to do. Which means that we as parents also experienced those things right along side him! Therefore our quality of life (both physically and psychologically) were high. For the purpose of this presentation, I am NOT going to talk about Mattie's previous issues with sensory integration, speech delays, or other issues. We do not have time to address these and in comparison to cancer they pale. However, if someone were to do a complete perspective of our quality of life though, I do feel this would be an important factor to take into account because we had already gone through quite a process with Mattie already even before entering the world of cancer. 



This slide captures Mattie's quality of life. To me the photos say it all! Exhaustion (top left), depression (top middle), pain (top right), sadness (bottom left), and isolation (bottom right). 

This slide captures what life looked like for Peter and I while in the hospital and now. The top left photo was around August 5th, when we learned Mattie's cancer metastasized. A day neither one of us will forget. The staff were entertaining Mattie in the clinic while we talked to his doctor. We had just come back from that discussion and you can see Mattie was staring at us to figure out what was going on. Meanwhile I felt like someone had just run me over with a car. The photo in the middle was taken on October 20, 2008, the day of Mattie's first limb salvaging surgery. It was some ungodly hour of the morning and Peter and I were very scared as we were trying to keep it together to support Mattie. The top right photo was taken on November 12, after Mattie's second limb salvaging surgery. This was a horror show to see and manage. The pain management went very poorly post surgery and Peter and I did a great deal of screaming for days until Mattie was out of agony. The other three photos capture our life without Mattie. The balloon release occurred at Mattie's funeral, the memorial tree is at Mattie's school, and the memorial stone is at Georgetown University Hospital. Needless to say, the point of this slide is to alert our audience that Mattie may have died but our quality of life has NOT returned to normal. The cancer maybe over, but the battle continues. 



This slide highlights the essential nature of psychosocial support!!! When Mattie had access to this support, he was happier. In our case, the majority of this direct support was provided by his child life specialist and art therapists. I have no idea where we would have been without these women. They enhanced our quality of life dramatically and to them we will be forever grateful. Which is why we are committed to supporting the Mattie Miracle Child Life Program Fund at Georgetown University Hospital in Mattie's memory.  

October 17, 2014

Friday, October 17, 2014

Friday, October 17, 2014

Tonight's picture was taken in October of 2006. We took Mattie to the Walkersville Railroad in Maryland. We had a lovely train trip along the countryside and saw cows and wonderful vegetation. Mattie and Peter enjoyed the adventure of being on the outdoor train car for a while until it got too chilly and then they came inside and joined me. One of the train cars had a potbelly stove, which was the train car I parked myself in because to me it was a cold and damp day! As you can see NO other passengers were outside with Peter and Mattie!!! 


Quote of the day: I am hopelessly in love with a memory. An echo from another time, another place. ~ Michel Foucault


As I tried to write tonight's blog, it was a true comedy show. I am just tired and words are not coming to me. Peter got a kick out of watching me get distracted, laughing about something that I was attempting to write, and then finally tried to redirect me by taking me outside on the deck. As we went outside here was the sight Peter showed me. 

A lovely spider who spun a web in our outdoor light. That doesn't do much for me, but Mattie would have LOVED this big time. Which is why we photographed it. I will never forget how Mattie had a toy tarantula that was battery powered that he would send down the hallway of the hospital, especially at nighttime. This thing made noise, its eyes would light up and it was just creepy. Nurses knew it was Mattie and many of them appreciated his sense of humor, his desire to get their attention, and sometimes he even attached notes to them on the spider. Funny how this spider web can take me right back in time. 


October 16, 2014

Thursday, October 16, 2014

Thursday, October 16, 2014

Tonight's picture was taken in October of 2006. To me this captured Mattie's eclectic look! I most likely had asked Mattie to get dressed for the day and he did not want to, so instead, he started putting clothes on top of his pajamas. Not what I had intended, but he was taking my request literally. Of course I can also see Lego tracks on the right hand side of this photo that Mattie had put together. Legos were always a part of our lives, whether Mattie was healthy or battling cancer. They just colored our world and our living room. After Mattie died, we donated over 14,000 Lego blocks. Which should give you some idea for how many Legos we were living with. 


Quote of the day: All you need is love. But a little chocolate now and then doesn't hurt.  Charles M. Schulz



This afternoon I went to Georgetown University Hospital to visit my newest friend who I just met this spring. Michelle is a graduate of Georgetown and I met her while giving a Mattie Miracle presentation on campus. When delivering the presentation, I could tell that Michelle understood cancer on a very personal level. I learned later that she lost a close friend to cancer while in college. In any case, we have been connected ever since. Unfortunately today I visited her at the hospital because she had an accident which impacted both of her legs. Being an active person, losing the ability to use your legs for several months is a very large adjustment. Of course having an emergency surgery and living in a hospital is also overwhelming. Not that I had any words of wisdom, I do know that having company and support can make a difference. 

The irony is I can go to Georgetown University Hospital and walk around, but don't ask me to park in the garage. There is something about that whole experience that brings back bad memories. Instead I literally park three blocks away, regardless of the weather, and walk onto the campus. I just can't deal with the parking nightmare, the tight garage, and the memories of wheeling Mattie through the floors of the garage to get him admitted. The stress of that garage will remain with me always. Sure the garage had an elevator, but it did not always work! So literally most of the time if I was lucky enough to even find a parking space, it was located at the bottom floor of the garage, then I had to wheel Mattie with ALL of our bags UP the ramps of the garage to get into the hospital. 


Before visiting Michelle, I visited the hospital gift shop because I wanted to bring her something to cheer her up. I know going into a hospital room empty handed isn't a good plan! So I tried to think about what I would want to see if stuck in a bed. The last time I was in this hospital's gift shop was with Mattie! I remember buying a cute stuffed kitty with Mattie in the gift shop! I still have this kitty. When I went into the shop today, I did not have Mattie with me and naturally it was a strange feeling. The first thing that caught my attention was this butterfly balloon. So I felt that was symbolic and got that, but then all around me was chocolate! That was NO surprise to me. Chocolate is my medicine of choice, but clearly I am not the only one. Mattie would have been most disappointed with the gift shop's decision...... I could just hear him squawking if he were with me!!! 

I am happy I visited Michelle and I got to meet her mom as well. One thing about myself that hasn't changed is I still love meeting people, learning about their lives, and hearing about their thoughts and feelings. Michelle's mom told me a special butterfly story about how they raised butterflies right before Michelle went to kindergarten. Then on the first day of kindergarten they went to school and had a butterfly release with the entire class. She was telling me this story because she thought the butterfly balloon was special and symbolic of her earlier beginnings. There is something special about butterflies for all of us and I am so happy that this balloon caught my eye today.