Saturday, November 10, 2018

Saturday, November 10, 2018


Tonight's picture was taken in November of 2007. Mattie was in Boston visiting Peter's parents. As you can see they raked leaves and Mattie was swinging on a swing and then jumping off of it into a pile of leaves. I am not sure Mattie would have done this on his own, but he observed his cousins doing it and therefore decided to try it. He loved it!!!









Quote of the day: I must be a mermaid. I have no fear of depths and a great fear of shallow living. ~ Anais Nin

Today was our last day sorting candy!!! I am happy to say that we had many volunteers helping us. Which was crucial because we had 11 different organizations dropping off candy. 

Pictured from left to right:
Ben, Christine, me, Kevin, Grace, Izumi, Catherine, Sara Catherine, Carolyn, Ellie, and Gavin. 

Our friend Ali, has a two floor detached garage. If you can believe it, we used both levels today because we had so much candy and that many volunteers. We couldn't all fit in the same location. 

Volunteers switched up throughout the day. The sun light came in through the garage windows, but what I want you to see is the amount of candy. Do you see the stacks of bins behind us? That is how much candy had already been sorted and binned. What you see in front of us were the ziplocs that sort the candy by type. It is a true system to keep this set up flowing smoothly and remaining clean. 

Pictured left to right: Vicki (holding Ali's son Grayson), Catherine, Tina, Abby, Mike, Ali, Parker, Charlotte and Mary.

This was the second floor sorting zone. I would love to entitle this photo.... the Resurrection Children's Center team.... because every single person in this photo I met through Mattie's preschool. Not only the preschool, but specifically through Margaret's classroom. As a reminder Ali is Margaret's daughter. In addition, Ellie (in red, front left) and Sara Catherine (back right) were in Mattie's preschool classroom. Carolyn (front right, Ellie's mom) is a committed member of Mattie Miracle's leadership, as she runs our annual raffle every year. Catherine (in the back, in purple; Sara Catherine's mom) dedicates her time every year to help us sort thousands of pounds of candy. 

This is a photo I snapped today of Ali's children. From left to right are Grayson, Charlotte, and Parker. Literally I was working everyday this week at their home. So I got to spend a lot of time with the children. They would visit me every day after school. In any case, our time together is coming to a close and I was very touched to hear today that when I left Charlotte was upset and told her mom that she was going to miss me. She did not want to wait until May to see me at the Foundation's Walk. I was very happy to hear this as I enjoyed my time with them and I am hoping to find ways to do things with them throughout the year. Keep in mind that Charlotte is the same age as Mattie. I find that ironic in a way. When I got home I received an invitation to Charlotte's and Grayson's birthday parties. So Peter and I look forward to this. When I decided to use Ali's garage for the candy drive, it never dawned on me that in the process I would gain a relationship with three children. 

The garage at the end of the day! Candy sorted, binned, and stacked. Deliveries begin around town on Monday.... we head to Baltimore. 

Friday, November 9, 2018

Friday, November 9, 2018

Tonight's picture was taken in November of 2008. I honestly do not know how Mattie could even smile given all he was contended with.... after all he was recovering from two major limb salvaging surgeries. He had three out of his four limbs operated on and from that moment on, Mattie became physically disabled in addition to having to cope with cancer. Despite living with intense pain Mattie still found the energy to play and to be engaging. To me he had a beautiful and irreplaceable smile. 

Quote of the day: Life is not measured by the number of breaths we take, but by the moments that take our breath away. ~ Maya Angelou

Mattie Miracle's first Bourbon & Bites Bash was held on Thursday night at our friend Debbie's home in Alexandria, VA. Debbie's son, Tim was in the same kindergarten classroom as Mattie. So we have known each other since 2007 and we are grateful that the whole Keefe family supports the Foundation in Mattie's memory. 

Pictured left to right: Dr. Lori Wiener, Peter, and Debbie

We are also grateful to our board member, Brett Thompson, who is the co-founder of the Jos A. Magnus Distillery in Washington, DC. It was Brett's idea to hold such a fundraiser, and he donated all the liquor (bourbon, gin, and vodka). 

In fact, I would say that many of the bold moves we took as a Foundation on the National level, started with Brett's encouragement of me. He always felt we could....... hold the first ever childhood cancer psychosocial symposium on Capitol Hill, we could craft and get psychosocial legislation passed, and that we could change the message about comprehensive cancer care. As Brett says, we are like the little engine that could. Brett is now a brain cancer survivor as well and delivered a passionate greeting last night. In which he mentioned that his own cancer journey enabled him to truly see the importance of Mattie Miracle's mission. 

The Bash was a $24,000 success!!! Around 85 people were in attendance and we were honored to welcome so many new supporters to our Foundation family.

Thank you to our incredible host committee for making the Mattie Miracles possible:

Christine and James Cooper
Peggy Elkind
Dawnee Giamittorio 
Ann and Bob Henshaw
Debbie and Peter Keefe
Carolyn McFadden
Alison McSlarrow
Jane Pisano
Brett and Susan Thompson

We started the evening by greeting everyone at the front door. Given that there were 85 people in attendance we moved to name tags. 

We had the wonderful jazz sounds of Tim Whalen, a sought after pianist in DC. He was SO kind to give us a significantly reduced rate for performing two hours. 

Our photographer, Herman, captured me on the staircase before giving a greeting. It took me two weeks to craft the emotional message that I delivered. I felt it was important for attendees to know why we do what we do and how we learned first hand that psychosocial support is necessary for the entire family. 

This to me is classic. Lori and I. We have worked together since 2012, and she has become a good friend. It was crucial to have Lori at the event last night, as she really helped to give merit and validity to our work on the national level. 

Though there were 85 people in attendance the flow of people worked very well in Debbie's home. The lady in yellow is Ellen. She is Charlotte's mom. Mattie considered Charlotte his girlfriend, or the girl he was going to marry. Yes he made that pronouncement at age 5. 

This was some of the people looking up at me while I was speaking. The only reason we spoke from the staircase, was that it made us visible to everyone in the house. 

The library featured the tastings! It was a popular room that night and the distiller (Nicole) and the event coordinator (Thy) were absolutely lovely women. 

Mingling over tastings!

The beauty of the buffet table! Debbie and I picked out the linen and I really wanted a gold color table cloth for the fall, but also because gold is the awareness color for childhood cancer. 

Relish Catering did a phenomenal job. They were a pleasure to work with and their food was creative, tasty, very farm to table, and memorable. Not your ordinary cocktail food. 

A popular room after presentations were made. 

Me with my friend Denise. Denise and I have known each other a long time. Her whole family are Mattie Miracle supporters. Denise and I met in grad school, and her daughter Marisa got to know Mattie when she was in high school. For the past 9 years, Marisa has run the bake sale at our Mattie Miracle Walks every May. 

The parting gift for our guests.... a little bottle of bourbon!

Thursday, November 8, 2018

Thursday, November 8, 2018

Tonight's picture was taken in November of 2007. I remember taking this photo as if it were yesterday! We took Mattie to Roosevelt Island, for our weekend walk. While there, Mattie found a crinkly hedge apple (which he was holding). Mattie loved to collect items from nature and bring them home. I find it ironic that in the background of this photo is Georgetown University, a place that became our second home a year later.


Quote of the day: The ideals which have lighted my way, and time after time have given me new courage to face life cheerfully, have been kindness, beauty, and truth. ~ Albert Einstein



It is around 12:30am. We got back from our very successful Bourbon and Bites Bash and I could feel a UTI coming on. So I called my urologist's after hour line. The person taking the message was lovely. However, 30 minutes went by and no response from the doctor. So I called back. He finally tracked down the doctor, who was asleep. She then tells me she has surgery tomorrow, so in essence I am bothering her. Great bedside manner doctor! 

Then here's the next problem, she agrees to write me a script, but we couldn't find a CVS that was open 24 hours a day. All of our local CVS' no longer are open 24 hours. I DON'T get it.... I guess CVS doesn't care whether you get sick in the middle of the night! Frankly this is down right scary!!!

So literally while on the phone with the doctor, Peter and I were scrambling to locate a 24 hour CVS for the doctor. As you can see she made no effort to help me, other than writing a script! Peter is now running back to Alexandria, VA to hopefully pick up a script. This whole call reminded me once again why I have major issues with the medical profession. It isn't my fault that she is on call and has surgery in the morning. Perhaps she should run her practice differently and account for the fact that patients get ill and do need to call!

I will write more about the Bash another night, but this was what was in my hair tonight.... two butterflies. 

We snapped a photo of these three talented ladies. From left to right are Alison (the cater), Nicole (the master distiller), and Thy (who oversaw the bourbon, gin and vodka tastings).

The beauty of the buffet table. Typically events like this produce lack luster food. Not in this case. The food was wonderful! I highly recommend Relish Catering. 

Passed Hors d'Oeuvres:
Smoked Salmon Napoleon
Grilled North Carolina Shrimp
Lamb Tenderloin Spiedini
Trio of Seasonal Brushchetta

Buffet:
Maryland Crabcakes
Herb Roasted Beef Tenderloin
Grilled Chicken Skewers
Seasonal Artisanal Cheese Pairing Bites
Autumn Vegetable Tart
Butternut Squash and Farro Salad
Kale and Pecorino Dip

Sweets:
Dark Chocolate sea salt truffles
Lemon ginger parfaits
Salted Caramel Apple Tarts
Seasonal Fruit Skewers


Here is what I said tonight........................................

THANK YOUs

1. Good evening my name is Victoria Sardi-Brown. I am the president and co-founder of the Mattie Miracle Cancer Foundation.
2. On behalf of the foundation and our Bash Host Committee, we want to welcome you to our first Bourbon and Bites Bash. 
3. It means a lot to us that you are sharing your Thursday evening with us and chose to be here to learn more about Mattie Miracle. 
4. Tonight, would not be possible without Debbie and Peter Keefe, who have opened their beautiful home to host this event. We met the Keefes in 2007, when their son Tim (who greeted all of you tonight on the porch) was in Mattie’s kindergarten class. The Keefes have been a part of our cancer journey from the beginning and we are honored that Peter has served on our board since 2009. 
5. We also want to thank Brett Thompson, the co-founder of the Jos A. Magnus Distillery, for providing us with wonderful cocktails and tastings later tonight.  Brett sits on our board and he is not only the co-founder of the distillery and Pork Barrel BBQ Sauce, but he is a lobbyist by day who has been instrumental in helping Mattie Miracle craft psychosocial legislation. 
6. Peter and I also want to thank our wonderful Host Committee for their incredible efforts and leadership in making this event possible.

AGENDA

1. Tonight, you will hear from four people... I will have the opportunity to introduce you to why we created the Foundation and to help put Mattie Miracle into context for you. Then my husband Peter- who is the CEO and Co-founder of Mattie Miracle, will highlight our programs and our psychosocial vision. Peter will then introduce you to an incredible psycho-oncologist, researcher, and our friend, Dr. Lori Wiener. Lori will share her perspective on Mattie Miracle’s vision and presence on the national level. Last but definitely not least, Brett Thompson will tell you a little bit about Jos A Magnus. After which we will invite you to enjoy both food and tastings, alongside the wonderful music of Tim Whalen. 

CONTEXT

1. I wear two hats always. I am Mattie Miracle’s president, and first and foremost I am and will always be Mattie’s mom. When you lose a child to cancer, you really have two paths you can take. One, you could give up on life or two, somehow find a way to survive and navigate through the world. Peter and I chose the latter.
2. I find it ironic that I have two master’s degrees and a PhD in mental health counseling, yet my greatest teacher in life was Mattie. From him, I learned that cancer is a family disease and childhood cancer is NOT JUST ABOUT THE MEDICINE. 
3. There is a real psychological component to childhood cancer. When Mattie was 6 years old, he was diagnosed with bone cancer. Within the first three months of treatment, he developed clinical depression, anxiety, and medical traumatic stress. Things he didn’t have prior to treatment.
4. Yet we saw when Mattie’s emotional and social needs were addressed, his outlook improved, and it was easier for him to receive medical care. Although Mattie received treatment at three different medical institutions, we observed there was no consistency or standard of care for managing his or our own psychological and social needs. 
5. No matter where you go in the United States the medical treatment for childhood cancer is basically the same, meaning there are standardized treatment protocols. But why weren’t there similar standards for psychosocial care? 
6. This is a question we have devoted a great deal of time trying to answer. Mattie Miracle started off as a grass roots organization that supported children’s needs at MedStar Georgetown University Hospital. However, now 9 years later, we have grown into a national organization that is intimately involved with the creation and implementation of psychosocial standards of care. 
7. When you talk to childhood cancer survivors and their families….. What do you think they talk about? I assure you it’s not the medicine. Over time, most of us don’t remember those specific details. However, what we do remember is how our medical providers treated us and made us feel. These are the feelings we carry with us throughout of lives. Why? Because the psychosocial issues do not end for the child or the family once the medical treatment does. 

Wednesday, November 7, 2018

Wednesday, November 7, 2018

Tonight's picture was taken in October of 2008. I know it was a Friday, because Mattie was in the hallway watching the Georgetown University Chemistry Club's experiment. Every Friday, Chris (the president) and his Club came to visit the children. Mattie absolutely LOVED watching what Chris was doing, and Chris was fantastic with Mattie. That day, Chris gave all the children a rose and then asked them to dip it in dry ice. He demonstrated by taking a rose and freezing it. Then he dropped it on the floor.... it went in thousands of pieces. Mattie refused to part with his rose, as you can see! This photo was taken by Margaret, Mattie's preschool teacher. Ironic, as the candy drive is now being held at her daughter's (Ali) home. It is like we have come full circle, as Ali and I work together on Mattie Miracle events. Just like her mom and I used to do. 


Quote of the day: Always be a little kinder than necessary. ~ James M. Barrie

When I arrived at Ali's home this morning.... this is what I saw. Candy filled both bins and then the rest was stacked on and around the bins. It was quite a morning greeting!

Robert & Tyler of Washington Fine Properties are way too generous with us. This is their second year of participating in the candy drive, and they are also corporate sponsors of our annual awareness Walk. I just love how they sort their candy and I personally love their bags. 

It takes a lot of organization to keep this drive moving efficiently. Not letting candy pile up and to keep the space open and clean. I am grateful to the countless number of volunteers who helped me all week. Many of these women I met through Mattie, either in preschool or elementary school. Now in our 8th Candy Drive, they are still helping. 

By tonight, I have filled 40 bins with candy. Not to mention various boxes have been packed up as well. Putting this into context, last year, we had 60 bins in total. We are well on our way to that or more.

Tuesday, November 6, 2018

Tuesday, November 6, 2018 -- Mattie died 477 weeks ago today.

Tonight's picture was taken in October of 2008. Mattie was home recovering from his first surgery and decided to create a haunted house out of tinker toys. He then decorated it with lights and other items. Though managing Mattie's cancer diagnosis was challenging, it got exponentially worse once he had surgery. No one ever prepared us for the psychological issues that would unfold. Knowing what I know now, I have to wonder how medical professionals did not even think about the psychosocial impact of limb salvaging surgeries on an active child. Surgeries that left Mattie unable to walk, toilet himself, or do the most basic activities of daily living on his own.  


Quote of the day: How far that little candle throws his beams! So shines a good deed in a weary world. ~ William Shakespeare

Just when I think we couldn't possibly receive more candy, we do! Candy was coming out of the wood work today and throughout the day it was pouring!!! Which made for a very difficult candy transfer from cars to the garage. 

This is Colleen and her children. They collect candy for us at the McKinley Elementary School (Brownie Troop 555 and Daisy Troop 60039) in Alrington, VA. Colleen has been collecting and sorting candy for us for several years now! 

Since today was election day, kids were home from school. I had several members of the TC Williams High School Key Club volunteer to sort today. They worked with us for 3.5 hours and they were terrific. Never complained and accomplished a ton!

In addition to these teenagers, we also had a mom and two girls from the Discovery Elementary School in Arlington, VA. They came to donate candy and sort with us for an hour. Their mom, Kristina, wanted her girls to see the production and to understand where the candy goes.

I had volunteers in shifts. 

From left to right:

Julia (Mattie went to preschool with her), her mom Suzanne, Tina, Sara Catherine (Mattie went to preschool with her), and her mom Catherine. The two little ones near the table are Charlotte and Parker. These are Margaret's (Mattie's preschool teacher) grandchildren. The candy drive is taking place at their home and everyday after school they come out and spend some time with me. It is very special for me, as I was very close to their grandmother. 

We also got a big donation today from Washington Fine Properties-- real estate agent.... Susie Gordon Maguire. Susie did a collection in her neighborhood and we are honored to accept this candy. Washington Fine Properties is also a proud Mattie Miracle Walk sponsor.  

Monday, November 5, 2018

Monday, November 5, 2018

Tonight's picture was taken in October of 2008, this was Mattie's last Halloween with us. By that point, Mattie had just had his first limb salvaging surgery. His right arm was wrapped up and he was very self conscious about having a bald head and a wrapped arm. He did not think he would be able to find a Halloween costume. But Mattie was invited into the oncology clinic (prior to the other children) to look over the donated costumes and to have the opportunity to pick one out without being surrounded by other children. Mattie picked out this mummy costume and it was the perfect choice. Mattie celebrated Halloween at the hospital. He literally trick or treated in all the admin offices. Then later that evening, he met up with his closest preschool friend, Zachary, and went trick or treating in Zachary's  neighborhood.  It was a challenging day for Mattie, but I am glad I captured this brief happy moment in the hospital elevator. 


Quote of the day: One who knows how to show and to accept kindness will be a friend better than any possession. ~ Sophocles

Today was a FULL day of candy donations and sorting. We received at least 500 pounds of candy today. I literally was on my feet for 8 hours and when I got home at 6pm, I was exhausted. 

I want to thank the River School in Washington, DC for their 200 pound donation. The River School has been supporting our drive for over 6 years now. 

These two cuties are from the St. Mary’s Church Junior Catholic Daughters of America, Middle School Chapter. They donated close to 300 pounds of candy to us today. Despite the weather, they helped me carry the candy to the garage and were simply delightful girls!

This is what it looks like when the candy comes in faster than we can sort it and compile it! Before I left the garage tonight, all this candy was processed! 

 More donations!

Last donation of the evening! I can't say this is where it ends...... as I continue to get more email inquiries throughout the day and evening!

Sunday, November 4, 2018

Sunday, November 4, 2018

Tonight's picture was taken in October of 2007. Mattie was five years old and was in kindergarten. This was the costume Mattie selected. It was our first year going to a costume store! Previous years Mattie only wanted to wear sweatsuit based costumes. So this change up was a big deal. We looked high and low for an Air Force pilot costume, however, the only thing being featured was a Navy costume. We bought it and then I reached out to a former student and friend of mine who is a retired lieutenant colonel in the Air Force. Within days, she sent me Air Force patches which I sewed onto the costume. Mattie was very proud of his costume and wore it with pride in his School's parade. 


Quote of the day: Remember there's no such thing as a small act of kindness. Every act creates a ripple with no logical end. ~ Scott Adams

See these bins!!?? They are all filled with unsorted candy. This is the candy that accumulated in one day. We sorted for several hours on Saturday and we took today off. Well off from sorting, not off from collecting and piling up candy. We go back at it tomorrow with our volunteers!  

This is a photo that was sent to us from the National Charity League. A group of moms and daughters got together to collect candy for us, to sort it themselves, and they delivered it by hand to us on Saturday! This is the first year they have participated in our Drive and we are honored to have them. 

In fact, on election day, there are several students in the area who reached out to me. They have the day off and are coming to help sort!!! They are new to Mattie Miracle!!! Isn't that amazing?