Saturday, July 27, 2019

Saturday, July 27, 2019

Tonight's picture was taken on July 29, 2008. Six days after Mattie was diagnosed with cancer. Back then we did not know how to get through a day. We were in total shock and truly devastated at the same time. That day, we took Mattie to Roosevelt Island. A place we all loved and spent a great deal of time at when Mattie was well. We brought Mattie's remote controlled boat to the Island that day, and he played with it in the water. 


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

This morning I woke up and looked out the window onto our deck and saw the first blossom of the summer for Ginger Butterfly Lily. We bought this plant in 2014 on one of our trips to North Carolina. Five years later, we still have this plant and it has grown exponentially. 

The plant got its name because the blossoms look like a butterfly! However, what this photo doesn't capture is the intoxicating fragrance coming from the blossoms. The blossoms are short lived and typically don't last for more than a day or so. The fragrance is a mixture of gardenia and lily. 

While outside on the deck smelling Ginger Lily, along came a butterfly! This fellow was fluttering all around us and seemed to hang out by Mattie's bedroom window. 

I spent a good portion of my day glued to the computer, I am not kidding. We are driving to visit Peter's parents on Monday in Boston, so I had lots of things to do for the Foundation before leaving. On top of that, I had to prepare the blog for my upcoming cruise of Canada with my parents. So I worked on twenty days of blogs, in order for them to be prepped for both my Boston and Canada trips. 

Given the work I was doing, Peter suggested we go out to eat today in Dupont Circle. This is how glorious Q street in Dupont Circle looks. Though it was in the 90's today, I enjoyed walking from the restaurant back home. 

We dined at Hank's Oyster Bar. Though I am not an oyster fan, Peter is! So he got his oysters and I got soft shell crabs. A dish that is not for everyone, but I love them. The funny part about all of this is on Facebook this week, two people commented to me that I should write a restaurant and a travel blog. Not sure I could maintain three blogs at once, but I most definitely appreciated the compliments.

Friday, July 26, 2019

Friday, July 26, 2019

Tonight's picture was taken on July 29, 2008. Six days after diagnosis, Mattie had a bone biopsy. A bone biopsy is a procedure in which bone samples are removed (with a special biopsy needle or during surgery) to find out if cancer or other abnormal cells are present. Basically it is the official way of diagnosing osteosarcoma. I am not sure what was worse, the actual procedure (which involved general anesthesia) or the recovery. At home we were asked to remove the bandage. Mattie's skin was so sensitive that pulling something with heavy adhesive off of him was a nightmare. Here you can see that Mattie did not want me touching him. I was sitting next to him on the couch, while he tried taking the bandage off himself. However, I learned quickly over that year's time the fastest way to remove a sticky bandage...... was to use rubbing alcohol. 

Quote of the day: When I was starting out in this business, that was the norm. You did it all. You looked around, and entertainers could dance, sing, play the piano, act, make you laugh. ~ Carol Burnett

Last night we had the treat of seeing Carol Burnett live at the Strathmore theater in Bethesda, Maryland. The theater is beautiful and ironically we have never been to see a show in this venue. I am happy my birthday changed that.
Peter and I grew up on seeing the Carol Burnett show. She has brought family fun to generations of people, and now that her shows are on MeTV (as reruns), a whole new generation is getting to know her. 

The interior of the Strathmore. It reminds me of a smaller version of the Concert Hall at the Kennedy Center. While waiting for the show to begin, we struck up a nice conversation with the couple next to us. 

Keep in mind that Carol Burnett is 86 years old. From a distance it is hard to tell because her voice is strong (she even did her famous Tarzan howl for us), she is quick witted and spry on her feet. She in fact stood for a good portion of the two hour show. 

Like in her 11 year long TV show, last night, she had the lights turned up in the theater and for most of the show, the audience was asking her questions. You may think that would be boring! It could be if you are not Carol Burnett. The audience was firing unrehearsed questions at her and she was providing answers. Answers that illustrated her beautiful personality, well timed humor, and incredible life stories. I think Carol Burnett is a class act, who doesn't need to rely on politics or current events to be funny. She pulls in natural everyday things that we can relate to and does it in a clean and family friendly manner. 

The audience asked her whether she would come back to TV, because her humor is needed now more than ever. She said NO! She told us that the amount of money CBS spent to run the Carol Burnett show back then, would never fly today. In addition, she said the show was not about being perfect, but being real. Which again, would never fly in the very scripted and overly orchestrated TV shows of today. 

Carol Burnett did a tribute to Harvey Korman and Tim Conway. It was touching as she felt her show could never be duplicated, as these two great comedians are no longer alive. She showed us the classic dental skit (click on this photo), and what she told us was that Tim Conway (playing the dentist) went totally off script. As his goal was to get Harvey Korman (the patient) to break down in laughter.

I am glad we saw this incredibly talented living legend perform live!

This afternoon, I met up with my friend, Margy and her husband Ken. They took me out for my birthday. I met Margy on Facebook, through a mutual friend. We have been friends ever since. It is hard to believe that Margy has been diagnosed with stage 4 ovarian cancer in January of 2018. Margy already survived thyroid cancer, worked for many years at a local hospital helping children with cancer, and ran a childhood cancer non-profit for 20 years. So she comes to her second cancer diagnosis with a great deal of insights and experience. To me, her strength and courage are amazing. 

Thursday, July 25, 2019

Thursday, July 25, 2019

Tonight's picture was taken on July 25, 2009. This was my last birthday with Mattie. That day he worked with my in-laws on designing a special card for me. Mattie created a lighthouse birthday pop up for me, as he knew how much I love lighthouses. The lighthouse resembles Bodie Light, which is in the Outer Banks of North Carolina. A place Mattie visited several times. I am sure the first thing you see in this photo is the two of us, but do notice things all around us. Our home looked like an episode of hoarders while Mattie was ill. In fact, it remained looking like this for the entire first year after Mattie died. 


Quote of the day: I love you every day. And now I will miss you every day. ~ Mitch Albom

Peter spoiled me today with flowers, a card, jewelry, an amazing lunch, and tickets to see Carol Burnett live in Maryland tonight. 

I think those who know me well, understand how much I love sunflowers. When Mattie was ill, his care community would deliver me sunflowers whenever I was home. The sunflower became the unofficial symbol to me of Mattie's care team. The sunflower symbolizes love, support, and compassion! 

A line up of many of the cards I was lucky enough to receive. 

My parents gave me this beautiful necklace of diamonds in the shape of a star, the sun, and the moon! It is absolutely perfect and it will always remind me of this moment in time.

Peter surprised me with a second Pandora bracelet. My first bracelet, was given to me by my dear friend Margaret (Mattie's preschool teacher). That bracelet holds many of the charms that symbolize Mattie to me. So it is my Mattie memory bracelet. 

Today's bracelet captures the many places Peter and I have traveled together. It is my travel memory bracelet. I absolutely love it. At the moment: Florida, NYC, Boston, Canada, Washington, DC, North Carolina, Puerto Rico are captured on it. Of course at the center of this bracelet are butterflies! 

We went out for a delicious lunch today. This dress was a gift from my mom. She found a beauty!

I love Fiola Mare. To me it is the best restaurant in the Washington, DC area. The food is amazing! Absolutely beautifully prepared without being over done. In addition to incredible food, their service is like no other in our region. Everyone is extremely well trained and professional. Of course, I also love the view being right on the Potomac River. What is special to me besides the food, service, and ambiance, is the fact that they don't rush you! Dining there is meant to be an experience, like it is in Europe. 

My first course! Eggplant like I never tasted before. 

Peter had a burrata salad. 

Peter then had a king prawn Caesar salad. 

My second course was an heirloom tomato salad. Notice the china. Even that makes the experience special!

Peter had a bouillabaisse for his entree. 

I had an amazing piece of trout. Surrounded by artichokes, which I LOVE. Artichokes remind me of my maternal grandma, who used to cook them for me. I haven't cooked an artichoke since she died. 

Our waiter snapped a photo of us together! Though it was in the 80's, it felt extremely hot out!

Fiola Mare always treats you to a lovely dessert. 

They also give you a birthday greeting from the restaurant!

We grew up on the comedy of Carol Burnett. When I found out she was performing live on my birthday, I felt that was a sign. A sign that we should get tickets. I literally sprung that decision on Peter yesterday afternoon. He made it happen. We got the last two tickets in the theater! 

Wednesday, July 24, 2019

Wednesday, July 24, 2019

Tonight's picture was taken on July 24, 2008. Eleven years ago today! Mattie was diagnosed on July 23, and the next day we had an appointment at MedStar Georgetown University Hospital. There we met Mattie's oncologist and got our first taste of what it would be like working with Jenny and Jessie, the clinic's art therapists. Amazing women! Who got to know Mattie very QUICKLY. In fact that day in clinic he built the boat you see floating in our tub. I will never forget this moment in time and the intense level of stress we were under. So much so, that Peter and I couldn't sleep for days!


Quote of the day: I should know enough about loss to realize that you never really stop missing someone-you just learn to live around the huge gaping hole of their absence. ~ Alyson Noel

Every summer my friend Ann's cousin (JP) from Boston comes to spend time with her. JP has special needs but what I always find when spending time with him is that he is super clued into people. He absorbs what others are saying, how they are feeling, and is a very good judge of character. 

I had the opportunity to take JP out to lunch today! He loves people, interacting with them and don't get me started on food. He is like a bottom less pit, and yet never gains weight. 

While at lunch, JP wanted to write poems about our mutual friends. So he dictated and I did the writing. In between creating poems we text messaged many friends to let them know we were thinking about them. 

This was a poem to our friend Katharina. 

A poem to our friend Catherine. 

No meal is ever complete without dessert. JP was good for it and ate the entire thing! He loves to eat and I am honored he likes to spend time with me. 

Tuesday, July 23, 2019

Tuesday, July 23, 2019 -- Mattie died 513 weeks ago today. Mattie was diagnosed with cancer 11 years ago today. 

A day NEVER to be forgotten, July 23, 2008! A day that changed our lives FOREVER! Eleven years ago today, Mattie was diagnosed with Osteosarcoma (bone cancer). July 2008, Mattie was enrolled in a tennis camp. A week into the camp, Mattie complained of arm pain. We figured he sprained something or had a sore muscle from holding the tennis racket.

While enrolled in camp, I attended a conference in San Diego. Each night while I was away I checked in with Peter and I continued to hear that the arm pain wasn't getting better. Before leaving San Diego, I made a doctor's appointment to take Mattie in the day after I landed back home.

Fortunately Mattie's pediatrician took our complaints seriously, as I told her the issue had been going on for two weeks, with no improvement. From the doctor's office, we walked over to Virginia Hospital Center for x-rays. I admit that I got very frustrated with the radiology tech, because what I deemed should be an easy x-ray process turned into an hour fiasco.

After the x-rays were taken, the tech told me to go to a waiting room. I will NEVER forget this room. Mattie and I walked into a room filled with adults. NO hospital representative was in the room, only patients and ONE phone. We sat down and within five minutes the phone rang. NO ONE went to answer the phone, it just kept on ringing. So I decided to pick it up. On the other end was the radiologist, who asked for Mattie Brown's mom. When I told him I was Mattie's mom, he then said I needed to go right back to the pediatrician's office.

I said, ABSOLUTELY NOT! I wasn't leaving that room until he told me what he saw on those x-rays. He did not want to tell me, but I forced it out of him. So I heard that Mattie had osteosarcoma over the phone, surrounded by a group of strangers and Mattie staring at me. I tried not to sound alarmed but it's a bit hard after hearing...... your child has cancer.


July 23, 2008, was my first experience with medical trauma, and unfortunately that was just one of many traumas we experienced as a family. You maybe asking what's with these photos and the Christmas lights? Mattie requested that we take all our Christmas lights out on diagnosis day. He did not understand cancer, but he knew enough to know that something was very wrong and that the bright lights of Christmas may help lift all our spirits. The beauty of Mattie Brown..... you are dearly missed.


Quote of the day: If the people we love are stolen from us, the way to have them live on is to never stop loving them. ~ James O’Barr


Given that today marks the anniversary of Mattie's 11th anniversary of his cancer diagnosis, we wanted to make a statement in his memory. No better way to do this than with a Press Release! We are honored to partner with our friends at Momcology, a childhood cancer national non-profit that provides evidence based supportive care for families coping with childhood cancer. The press release highlights the fact that Momcology officially became an endorser of the Psychosocial Standards of Care. An endorsement means that Momcology feels the Standards are essential in the delivery of care to children with cancer and their families. 

Peter and I know the founder of Momcology, Kim Buff. Though she lives in Florida, we have had multiple opportunities to meet and share ideas at various conferences. Momcology works directly with families and truly values our Psychosocial Standards of Care. Therefore collaborating in the future on ways to spread awareness of these Standards to families is vital. As I have seen parents effectively advocate for their children's medical care, but seem uncertain what they can do to help meet their children's psychosocial needs as well as the needs of their family. We want to change this as the Standards are NOT only for professionals. Families have the right to demand that their treatment institutions adopt and implement the Standards. As optimal psychosocial care impacts treatment outcomes and quality of life. 


Here is a beautiful message posted on Facebook today by Kim Buff (the founder of Momcology)

Approximately 2.5 years ago, just as we were finishing up our first pilot cycle of Momcology peer-to-peer support groups at Children's Hospital at Philadelphia (CHOP), we were called-in to present our results to our program adviser and with that, also have the opportunity to share with certain members of Children's Oncology Group. Our team walked into one of the many CHOP campus towers with three things printed and tucked into our portfolios for presentation. 1. The survey results and testimonials from our pilot program, 2. A self-made flow chart and design schematic of scalability, and 3. A full printout and highlighted copy of the Psychosocial Standards of Care to support our position of the need for the implementation and approval of year 2 of that particular program. That day, with those resources, we accomplished our goal.

Momcology has always found value in the work of the Mattie Miracle Cancer Foundation and the Psychosocial Standards of Care as we grow our programming and mission. We've heard professionals at conferences call The Standards of Care their guidebook and roadmap as they build their own hospital's psychosocial services departments. This endorsement today officially shows our commitment to these professionally developed standards, but also that Mattie Miracle Foundation finds value in the community and programs we have built over the past 9 years for parents and caregivers of children diagnosed with cancer through Momcology. I personally consider this nothing less than a full circle moment in the mutually collaborative progress for families. I share this long statement because our work has been created with nothing less than thoughtfulness and intention by our team. We will continue to lean on the Standards of Psychosocial Care and the guidance of Victoria and Peter Brown as we continue to build meaningful support programming for parents with professionals. We are excited about what this collaboration means both today and for the future. 

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I am lucky enough to have wonderful friends who want to celebrate my birthday. Today is my friend, Mary's (in pink) birthday. Our friend Carolyn treated both of us to a wonderful lunch at Le Refuge in Alexandria, VA. My loyal readers know that Carolyn and I go way back as her daughter, Ellie, was in Mattie's preschool class. Carolyn is also our Walk Raffle Chair, and has done this incredible job for ten years. I met both Carolyn and Mary through Mattie's preschool. Which was a very special and enriching place. It is the place where some of my closest and most loyal friendships were born. On a side note, I used to have lunch at this restaurant with Mattie's preschool teacher, Margaret. So I felt Margaret would be happy that the three of us got together today and are continuing her luncheon tradition. 

Monday, July 22, 2019

Monday, July 22, 2019

Tonight's picture was taken in July of 2008. We snapped this photo at Roosevelt Island. This photo was taken in early July, only weeks before Mattie was diagnosed with cancer. Rather hard to imagine given that Mattie looks like the picture of health to me! Tomorrow will mark the 11th anniversary of Mattie's diagnosis. 


Quote of the day: I learned there are troubles of more than one kind. Some come from ahead, others come from behind. But I’ve bought a big bat. I’m all ready, you see. Now my troubles are going to have trouble with me. ~ Dr. Seuss


Seeing this Dr. Seuss quote made me laugh. If only Dr. Seuss would share his bat with me. As he is right..... troubles come from all around us. But how we  deal with them is what makes it all noteworthy! If we give up when troubles present themselves, then the troubles win. But if we have the where with all to say our troubles are 'going to have trouble' with us, then what that means to me is I have the determination to meet that challenge and fight it. Of course, I do think some challenges and issues are out of our control. Such a childhood cancer for example and yet it is how I deal with the ramifications of Mattie's death that I suppose makes me ME and makes me unique. Yet I freely admit childhood cancer is a trouble that keeps on coming. It isn't finite! With each year Mattie is gone, there are new issues that arise for us and so many of these issues impact our friendships or ability to have them. 

My birthday is two days after Mattie was diagnosed with cancer. Some how this impacts how I feel about my birthday. While some people may like to celebrate their birthdays, I am not one of them. I truly do not care for parties and in fact the group gatherings further trouble me. As groups remind me how different I am. 

Today, friends took me out for my birthday. In fact, I am going out almost every day this week with friends. I am very aware of the fact that I have the best friends, who care about me and about Mattie Miracle. I am grateful for them and the fact they wish to acknowledge my birthday. However, at the same time, hearing their summer plans and the things they talk about bring me sadness. It is my reality and internal conflict that I balance. It's not their fault, it's not my fault. I have come to appreciate that over the years, but nonetheless, these feelings can send me into a funk. 

We had a wonderful lunch at Vermilion in Old Town, Alexandria. This group of women is affectionately called, the NAGS. We got this name because every spring we nag people and companies for money for Mattie Miracle. 

While walking through Old Town, I saw this beautiful butterfly painted on the wall. It says.....debes ser el cambio que deseas ver en el mundo. This is a quote from  Gandhi, which translates to....."You must be the change you wish to see in the world." 

Sunday, July 21, 2019

Sunday, July 21, 2019

Tonight's picture was taken in June of 2009. Mattie received these fun glasses from a friend. It was recommended that Mattie do breathing exercises after his lung surgery, in order to work out all the anesthesia from his lungs. However, Mattie did not like the typical therapeutic exercises. So instead, we used fun things like these glasses attached to a large tube! This gadget caught Mattie's attention. It was a different kind of lung exercise, but it worked. With Mattie we were always inspired to think outside the box!






Quote of the day: Everything good, everything magical happens between the months of June and August. ~ Jenny Han

For the past two days, Peter and I have been taking Sunny on long walks at around 8am. Sunny is a bit thrown off because this isn't his usual walking schedule. But with 100 degree temperatures and high humidity, none of us can make it around 11am or noon! It is like walking in an oven. Now that Sunny is considered a 'senior' dog, we notice he doesn't manage the heat as well. He needs to stop constantly on our walks and consume water. 

You know the kind of heat that is so intense that even when you are in air conditioning it doesn't feel cool? Well that is where we are at this weekend. We went out shopping today because stores are freezing. It was a lovely change of pace, as I wasn't thinking about a deadline or any work project due. 


When we arrived home, look what greeted us in our garden! Being outdoors and on our deck meant a lot to Mattie, so much so that the last birthday gift he gave me was a fountain for our garden. So I believe all signs on our deck are messages from Mattie.