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.