A Research Study to Assess the Impact of Childhood Cancer on Siblings

A Research Study to Assess the Impact of Childhood Cancer on Siblings
Please consider helping this student... If your child/children are between 12-17 years old, never had cancer themselves, but had a sibling diagnosed with cancer as a child, you can help this doctoral student at Widener University conducting a research study about brothers and sisters of kids with cancer. For more information click the survey monkey icon above!

Mattie Miracle 6th Annual Walk & Family Festival -- is a $78,766 success!!!

Mattie Miracle 6th Annual Walk & Family Festival -- is a $78,766 success!!!
We thank our supporters and volunteers for making this Mattie Miracle possible!!!

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

July 29, 2015

Wednesday, July 29, 2015

Wednesday, July 29, 2015

Tonight's picture was taken in July of 2003. Mattie was 15 months old. This was his first trip to the beach. We weren't sure how Mattie was going to react to the sand and surf, but looking back on this moment in time, his reaction makes perfect sense to me. Mattie did not like it at all! He was afraid of the water and did not like the feeling of the sand. Over the years, this changed and Mattie developed an affection for sand castle building. He could spend hours creating and digging on the beach and many times he and Peter would design structures that were so elaborate that other kids would want to join in on the fun. Which of course made parents very happy, because we were like an instant play zone for kids on the beach. 

Quote of the day: It is good to love many things, for therein lies the true strength, and whosoever loves much performs much, and can accomplish much, and what is done in love is well done.Vincent van Gogh

In March, at the Institute of Medicine Conference on Comprehensive Cancer Care for Children and Their Families, I had the opportunity to hear Melinda Marchiano speak as well as meet her and her mom, Lee. Melinda (far right in the photo) is a Hodgkin's Lymphoma survivor. Melinda has a wonderful website that shares her story and the advocacy work that she is involved in throughout the year. What captured my attention about Melinda, besides the fact that she is a beautiful person on the outside, is that she has a very compassionate, inspiring, and endearing way of capturing her audience's attention. She was able to explain the psychosocial issues she experiences as a cancer survivor in an absolutely stirring manner. She did not sugar coat her message, but made it real and meaningful. In fact, here is the actual video (click on video) from the conference, if you wish to see what she had to say. 

In addition to being a survivor and an advocate. Melinda has also published her own book, Grace, a child's intimate journey through cancer and recovery. As you can learn from her website, "Melinda established her business, Happy Quail Publishing, in 2009 at the age of fifteen. Her reasons for starting her business were not usual. Melinda became CEO of Happy Quail so that she would be able to publish the story she had written while she was recovering from cancer– without the harsh editing of a big publishing house. Believing her story needed to remain intact in order to truly help others with cancer, Melinda’s Happy Quail published Grace in October 2009. This first edition won two 2010 International Book Awards."

Yesterday, Lee sent me an email because she is working on a project about "momcologists!" I have to admit I had never heard this title before, but apparently I am deemed one, and I wear the title proudly. A Momcologist is "a mom in the fight of her life, also posing as a doctor looking for treatments for her child with cancer. Warning: Do not get in her way." Lee is reaching out to moms who inspire her and the community. Specifically to tell our story about our child's diagnosis and from that experience what we have done to impact the world of childhood cancer. Each of us will be given ten pages to express ourselves and the goal is to bring awareness to childhood cancer and in a way to celebrate what a group of women have been able to endure and accomplish. I am very honored to be invited to be a part of this project. 

So I now have a new title....... I am a MOMCOLOGIST!

July 28, 2015

Monday, July 28, 2015

 Monday, July 28, 2015

Tonight's picture was taken in April of 2009. I remember this moment as if it were yesterday. Mattie wanted to create an alligator. He had it in his mind that was what he needed to build. Except this wasn't from a kit and we did not have enough GREEN Lego pieces. That meant that Peter had to run to the Lego store and get all the supplies that Mattie needed to build what Mattie conceptualized. Of course that was hard to estimate, since Peter really had no idea what Mattie envisioned. As you can see, this was the final alligator project that Mattie and Peter created together. Mattie, with his usual sense of humor, put his hand in the alligator's mouth to show us how sharp his teeth were!

Quote of the day: There is strength in numbers. When the bricks stick together, great things can be accomplished. Steve Klusmeyer (a quote about Legos)

I received two articles from friends today about LEGOs! One of the articles discusses how David Junge co-directed a documentary on Legos that is coming to movie theaters on July 31. I had no idea that Legos was headed to bankruptcy about a decade ago, but thankfully this family run business reinvented themselves and listened to the demands of their audience, they are now the LARGEST toy company in the world. Legos appeals not only to children, but they are loved by adults as well. 

The second article about a Lego prosthetic arm, that I attached below, truly caught my attention today. When I saw the child featured in the article/video, he reminded me a little bit of Mattie. Maybe it was his energy level, his whimsical smile, or his clear passion and joy of Legos. Either case, the engineer who is working on the design of such prosthetics had this to say, “There were many problems I was trying to understand. The negative perception that kids have of prosthetics; the focus that companies put on engineering and not on the human part of a child; the social isolation felt by kids because of their condition and how hard it can be for them to build strong self-esteem." 

I loved this quote because it speaks to this professional's level of empathy and understanding of the complexity of losing a limb. I would imagine that losing a limb at any age is devastating, but certainly for a child, it is incredibly scary and to have a prosthetic and seen as different are major psychosocial concerns. Concerns that this engineer wanted to learn more about and help children design arms they could feel good about, proud of, and empower them to use their creativity to help them regain use of functioning. All I know is when I watched this video, I watched it with Mattie in mind. I could just picture his reaction to a Lego prosthetic arm and it is hard to imagine that things that appear to just be "toys" are used for serious tools and medical resources today. 

Lego Brickumentary


The Lego prosthetic arm that children can create and hack themselves

July 27, 2015

Monday, July 27, 2015

Monday, July 27, 2015

Tonight's picture was taken in July of 2007. Mattie was playing with his Lincoln Logs and as was typical for Mattie he loved to include a car in his creations. Mattie built a place to park his car and as his big smile indicated, he was very happy with his final product. Mattie could spend a good portion of his day building and creating, and always pulled me into his play schemes. The irony was before I had Mattie I really did not like playing with Legos, blocks, logs, cars, or trains. But Mattie trained me well and all of this became second nature to me. I learned to understand the mindset of a little boy as well as how to engage such an active and inquisitive fellow. 

Quote of the day: When he shall die, Take him and cut him out in little stars, And he will make the face of heav'n so fine, That all the world will be in love with night,  And pay no worship to the garish sun. ~ William Shakespeare

I have been working all day on various things to get ready for the World Conference of Psycho-Oncology that Peter and I are attending this week in Washington, DC. In addition to presenting at a Symposium on Friday, we are also hosting an exhibit booth at the conference for three days. So I worked on pulling out all the materials for the booth and organizing them. It is a strategy to transport them effectively to the conference hotel, because typically I am used to shipping items to their destination. We have never done a local exhibit booth.

This evening, someone sent me these wonderful photos from the George Washington University. They are strings filled with praying cranes. I suspect there are 1000 cranes strung on these strings! I am not sure who sent these photos to me because they were sent to me through a phone number and not an email address. However, this is clearly someone who knows my attachment to the origami crane. 

When Mattie was battling cancer, my good friend Junko and her mom created 1000 praying cranes for Mattie. With each hospital admission, we traveled with their amazing creation of cranes, and the cranes hung over Mattie's bed at all times. Now, these cranes can be found in Mattie's bedroom hanging from the ceiling serving as a reminder to me of my friend's greatest wish..... Mattie's recovery. 

An ancient Japanese legend promises that anyone who folds a thousand origami cranes will be granted a wish by a crane, such as long life or recovery from illness or injury. The crane in Japan is one of the mystical or holy creatures (others include the dragon and the tortoise), and is said to live for a thousand years. The legend of the 1000 cranes was actually very touching and it involved a young child by the name of Sadako in Japan, who was the victim of the atomic bomb and developed Leukemia. Her story is very meaningful and has been inspiring people all over the world for generations to create origami cranes to support those undergoing challenges and illnesses. 

The Story about the Cranes

July 26, 2015

Sunday, July 26, 2015

Sunday, July 26, 2015

Tonight's picture was taken in July of 2008. Mattie was diagnosed that month with cancer, yet this photo was taken before cancer came into our lives. To me Mattie looked like the picture of health. That weekend we took Mattie to the Kenilworth Aquatic Gardens in Washington, DC. We like to visit the gardens every July, because that is when the lotuses are in bloom. Notice in Mattie's left hand that he was carrying a toy car with him. That was not unusual. Typically Mattie had something in his hands, that he brought along with him for the adventure. 

Quote of the day: Unable are the loved to die. For love is immortality.  ~ Emily Dickinson

Today we went to visit the Kenilworth Aquatic Gardens. Though I have visited these Gardens many times before, I never knew the history of the Gardens or who created them. I did a little digging, and learned about Walter Shaw and his daughter, Helen. Thanks to both of them, we have these wonderful Gardens. Here is some history on them.......................................

On an already warm summer morning, Civil War veteran Walter Shaw and his young daughter, Helen, walked from their house to the pond Walter had cleaned out the year before. They were on a mission to check the newly planted water lilies. These wild water lilies had survived the trip from Walter's bachelor home in Maine to be planted at his new family home. After ten years of rentals, and relatives, the Shaws were in a home of their own, on 30 acres bought from Helen's maternal grandparents. Adjoining their property was a wetland, viewed as worthless, but suitable for the ice pond a previous resident had built, and it was here where Shaw had carefully planted his water lilies. The waxy flowers were fully open as Walter hurried to work. Helen, his daughter began her chores, checking the water lilies often to enjoy their delicate beauty before they closed in the summer heat.

Someday, the single pond and twelve hobby water lilies would blossom into their profitable joint business. Helen Shaw Fowler would become a world diplomat for water gardening. It would be training to lobby later with her brother and others to save her beloved garden home from a river improvement project. Living within sight of these ponds until she died, Helen witnessed her father's water lily hobby grow to the historic gardens you visit today.

Each July, people flock to the Aquatic Gardens to see the amazing Lotuses in bloom. 

Peter put his hand in the photo for scale. It really helps give context to the size of a Lotus leaf.

I like this photo because you can see the stages of a lotus. The lotus starts out as a bud (the lower right hand corner). Then the bud opens up into a beautiful flower. Once the flower petals fall off, you are left with this structure that looks like a shower head to me (which is shown in the middle of the photo). 

The glorious lotus blossom. 

We had two Great Blue Heron fly overs while we were there. Then of course this fellow parked himself for some photos!

The water lilies are just as stunning as the lotus. There are ponds and ponds of them. Most are white, but there is one pond of pink lilies that is absolutely stunning. 

More water lilies! I have a feeling Monet would have been right at home here. In fact, we saw someone painting at the Gardens today, and I have no doubt this artist was inspired by Monet. 

Peter captured this dragonfly on top of a lotus bud. It seemed like a Mattie moment to me.

Followed by a butterfly sighting

Beautiful cattails

July 25, 2015

Saturday, July 25, 2015

Saturday, July 25, 2015

Tonight's picture was taken in July of 2009. This was my last birthday with Mattie. Linda, Mattie's child life specialist, wanted to make sure that Mattie was able to celebrate my birthday. So she got him a cake to give me. Mattie enjoyed celebrating birthdays, and for Peter's birthday he always helped me bake a cake. The funny part about this was Mattie wasn't into eating cakes nor did he love sugary products. But he did like the notion of fun and celebrating. 

Quote of the day: For some moments in life there are no words.  ~ David Seltzer

Cards mean a lot to me and I enjoy receiving them. This colorful array are the cards I have received for my birthday. It is very special to me when I receive a card filled with sentiments that someone took the time to share, to reflect upon, and send. To me the gift of words matter. I know people are busy today and prefer to text or email, so therefore when friends and family members take the time to think and write something thoughtful, meaningful, and heartfelt, that captures my attention and it makes me feel special! 

This morning, out of no where, Peter started singing, "Baby Mine" from Dumbo. Of course he was doing it subconsciously and he did not even know what he was singing. He stopped and had to ask me, what melody he was humming. When I told him, he wondered where on earth this came from. After all this isn't something he typically sings. I knew right away what he was singing because this was a song I used to sing to Mattie when he was a baby. Then as he got older, and we watched the Disney movie Dumbo together, we would watch the particular scene which is linked below in which Dumbo's mom was deemed dangerous and gets quarantined and separated from Dumbo. Timothy the mouse reunites them briefly and during this reunion, this song plays in the background. It is a very touching moment between mother and son. 

As Peter was humming this song today out of the blue, my conclusion was this was Mattie somehow delivering a message to me through Peter. 

Baby Mine from Dumbo

Before we headed to dinner tonight, Peter snapped a photo of me. 

We went to a restaurant called 2941 to celebrate my birthday. It is one of the most celebrated restaurants in the metropolitan area. The restaurant is nestled in the heart of Falls Church, VA surrounded by lush landscaping, koi ponds, waterfalls, world-class artwork, and a lakeside view. The funny part is it maybe the "most celebrated" but I never heard of it until my friend Dawnee told me about it!

The setting for the restaurant is simply lovely! It is like visiting a secluded home in the woods, with a lake, a koi pond, and the delight of no congestion. But a lot of greenery. 

The inside of the restaurant
is bright, airy, and filled with natural light. You can see the trees and the lake. To me it is an ideal setting to dine by. 

This is what the lake looks like with a fountain in the middle!

I typically do not order a five course tasting menu, but tonight this is what we did! I thoroughly enjoyed every course. I not only had the dessert that came with the tasting menu, but they then brought me out this cute like birthday mousse cake! 

July 24, 2015

Friday, July 24, 2015

Friday, July 24, 2015

Tonight's picture was taken in July of 2009. I recently found this photo on the blog and downloaded it back into my electronic files. I am so happy I have the blog, because for some reason there are several photos I have just lost track of during Mattie illness and I can't seem to find them anywhere. Except on the blog. Every photo to me is special, which is why the blog is so important. It is like a documentary of Mattie's battle and then our subsequent journey trying to cope with life without Mattie. 

This photo features Mattie and Whitney on our couch. Whitney was a child life intern at the Hospital and one of Mattie's favorites. Whitney and her buddy Lesley, were one of the first two child life interns Mattie worked with at Georgetown, and this twosome became an instant hit with Mattie. Once Whitney's internship ended, she occasionally came over to visit Mattie and play with him so I could catch up on the world falling all around me at home.

Quote of the day: Unable are the loved to die.  For love is immortality.  ~ Emily Dickinson

Today I had the opportunity to leave work behind, as well as my computer and was treated to lunch with a friend. My friend Dawnee took me to a Washington classic in Great Falls, VA called L'Auberge Chez François. I have always wanted to try this restaurant, but it is a bit of a journey. So one needs a special occasion and time to get there. 

It was the perfect weather day for this restaurant. The sun was out, but it wasn't hot and humid. Just delightful to sit outside. This is the outside of the restaurant, and as you can see it has an old world charm! Since it is in Great Falls, driving to it, is very peaceful and scenic!

François Haeringer, the founder of L’Auberge Chez François in Great Falls, Virginia, was a pioneer when he opened the original Chez François in the heart of Washington DC in 1954. Haeringer’s goal was to operate a restaurant with “a nice ambiance and good honest food at affordable prices.” The restaurant’s enduring popularity is a testimony to his success with this approach.

In 1975, the Claridge Hotel, which housed Chez François, was sold to make room for an office building. Instead of retiring at age 57, Haeringer decided to fulfill his dream of opening an “auberge” – a family inn prevalent in his native Alsatian countryside. After finding the perfect six acres of rolling green hills in Great Falls, L’Auberge Chez François opened in 1976, and became a family business. Eldest son Jacques, by then a chef in his own right, became Chef de Cuisine. The dining rooms are filled with Haeringer family heirlooms and murals depicting scenes of Haeringer’s place of birth, Obernai, France.

The restaurant has this stunning outdoor patio! Featuring beautiful red themed furniture and plantings. It resonated with me since my favorite color and Mattie's is red! The red against the beautiful green garden was just stunning! 
As we were eating butterflies were fluttering by as well as birds.

Surrounding the tables above are gardens all around. Even a fountain is part of the gardens. It has to be on of the most charming patio dining areas in the Washington, DC area I have come across. To me it is worth the trip to Great Falls, and I am so happy I know about this gem and was able to spend the day here.  

July 23, 2015

Thursday, July 23, 2015

Thursday, July 23, 2015 -- the seventh anniversary of Mattie's cancer diagnosis

Tonight's picture was taken around July 23, 2008, the day Mattie was diagnosed with cancer. When you look at this photo, it may seem very confusing to you. After all, we are outside in short sleeves and there are plants in the flower boxes. However, there are also Christmas lights on display. So what is up with that? Well Mattie requested that we take out all the Christmas displays and put them up. I think on some level he knew that something scary and anxiety provoking was happening and he wanted the lights. I am not really sure why. I was too out of it myself to dig deeper and find out. But the distraction and keeping busy seemed like a good plan at the time. Putting up these Christmas displays was something he and Peter used to do together the day after Thanksgiving in our complex commons area. But since it was July we kept the displays to our deck. The fact that Mattie, at age six, jumped in my lap for this photo was a tell tale sign that he was scared. This was his scared position!

Quote of the day: If you know someone who has lost a child, and you're afraid to mention them because you think you might make them sad by reminding them that they died--you're not reminding them. They didn't forget they died. What you're reminding them of is that you remembered that they lived, and that is a great gift. ~ Elizabeth Edwards

In honor of Mattie's memory, Peter and I have been working around the clock to design and launch the new Mattie Miracle website today. I have wanted the Foundation's website to have a whole new look for a while, but just did not know how to do this. Certainly we could pay a web developer to do this, but that is costly and then I would be right back in the same boat I was in with our old site. With a website that I couldn't access and maintain. 

Fortunately with new technology, the average person can design their own website! I say this, but it takes a lot of time and patience! A lot of patience to get the look and feel that you want. You have to play around with formatting, words, and photos. That is just cosmetic part. Then of course you have to worry about the content! My biggest complaint about our old website was it was stagnant and no one could find information about the programmatic work we were doing much less about our achievements. With the new site, everything is housed in one place and the goal is to showcase our work as well as archive our newsletters and materials. We also tried to integrate out taglines ("it's not just about the medicine," and "spreading hope through psychosocial support") throughout and make it clear that our mission is about psychosocial support. Though it is a content rich site, we also felt it was important to integrate photos of Mattie into the site, photos of his treatment team and current Foundation photos! So you will see all sorts of photos on the website because they document how Mattie Miracle became who it is today. At the core it is always about Mattie, he keeps us grounded. 

This photo was taken during the first week that Mattie was diagnosed. Mattie was in Georgetown's clinic and we wanted to explain to him what was going on with him, and why his arm was in pain. I told Mattie's art therapists about his love for bugs. So Jenny and Jessie creatively made a "bone bug" out of model magic. Now clearly, there are NO BUGs in bone cancer, but it made for a helpful visual to explain cancer to Mattie. Mattie visualized bone bugs in his body and that the chemotherapy was going to zap out the bugs. He got the notion right away! So here you can see his foot was smashing down on the bone bug, reminiscent of what we hoped the chemo would do.