Tuesday, March 31, 2020

Tuesday, March 31, 2020 -- Mattie died 548 weeks ago today. 

Tonight's picture was taken in April of 2009. As you can see, Mattie was playing with this police car using his left leg. His left leg was given the name... Curious George. Because this leg and foot acted like an arm and hand. It was the only limb that wasn't operated on and Mattie used it beautifully. 


Quote of the day: Today's coronavirus update from Johns Hopkins. 

• number of people diagnosed: 184,183
• number of people who died: 3,721

Sunny isn't improving, he continues to limp and won't put weight on his back right leg. So I called the vet this morning and got him a 1:30pm appointment. Mind you because of the coronavirus, NO pet parents are allowed in the building and we have no personal contact with the doctor. 

Peter and I went for a walk today through Georgetown. Typically a very vibrant part of town with shoppers and diners. 

This was what Georgetown looked like today! Basically NO cars and few to no pedestrians. 

There were even stores boarded up to prevent people from potentially breaking glass to steal items. This is a sight totally unheard of in Georgetown. 

Meanwhile, we learned today that Sunny has completely torn his ACL. Which explains his pain and his inability to use his back right leg. 

Anterior Cruciate Ligament or ACL, other wise known as the Cranial Cruciate Ligament or CCL when referring to pets is a vital support structure of the knee. This ligament’s primary role is to provide and maintain stability to the knee. 

The knee’s anatomy in the most simple of descriptions contains two cruciate ligaments that cross inside the knee joint and provide stability of the upper femur and lower tibia while cartilage cushions called medial and lateral menisci rest between the tibia and femur to create a soft barrier between the two bones. A support bone called the Fabellae flanks the tibia on the side while the knee cap or patella slides up and down the front of the knee during flexion and extension. The anterior cruciate ligament prevents the tibia from sliding forward out from under the femur.


Our vet doesn't perform this surgery. Sunny has to see an orthopedic specialist. Given the coronavirus, there is only one practice in our region still seeing dogs and supporting such emergency procedures. Sunny will be seeing the surgeon on Monday and having the surgery in the afternoon. This won't be easy for him and recovery will minimally be three months. 

After seeing the vet, we started the car! Guess what? It wouldn't start. The battery died. The ironic part is our car just went in for its inspection and checks not long ago. So I wouldn't expect the battery to die. Thankfully AAA came within 20 minutes, started our car, and we found a Ford dealership open who would replace our battery! That was the easiest fix of the day. I wish everything else we were dealing with had a tangible and quick solution. 

In the midst of a day of chaos, I cooked an eggplant parmesan tonight. This is a dish my grandmother used to make and I learned the technique from her. 

The tasty highlight of the day. 

Monday, March 30, 2020

Monday, March 30, 2020

Tonight's picture was taken in April of 2009. That evening we were visited by the singing duo of volunteers.... Jerry and Nancy. They had all of us up and moving to the music. I caught Mattie in motion. We met Jerry and Nancy during the first week Mattie was hospitalized to received chemotherapy. They came into our lives during a very dark time, but their visits always cheered us up and gave us breaks from focusing on cancer and its treatment. 







Quote of the day: Today's coronavirus data from Johns Hopkins. 

• number of people diagnosed with the virus in the US: 160,020
• number of people who died from the virus in the US: 2,953

This afternoon I was on a conference call about Mattie Miracle's virtual walk. While I was on the computer, Peter went out to walk Sunny. Unfortunately while walking Sunny, Peter noticed that Sunny was unable to complete his walk because his legs were bothering him. So thankfully I was home and could jump in the car and pick them up. Clearly Sunny's muscular issues are significant enough to prevent him from walking. 

Later in the afternoon, Peter and I went for a walk. Not far from our home, yet many of the roads near the Nation's cherry blossoms have been closed. I snapped a photo of Peter on Ohio Drive. 

Get the picture?! This major artery in the city is completely shut down. 

Peter, with Rosslyn, VA in the background. Meanwhile, as we were walking on the National Mall, two park police approached us. They wanted us to stop walking and to return from where we came. They wanted to know how we accessed Ohio Drive, as this and Independence Avenue are now closed to pedestrians. 

Given the news we were hearing, we grew concerned that we wouldn't be allowed out of the District to drive into Virginia or Maryland. Since all of our essential services are in Northern Virginia. We literally got home and jumped into the car so we could do more grocery shopping and pick up Mattie Miracle mail in Arlington, VA. Needless to say, reading the article below eases my concerns as national capital residents will be able to freely move around between states for essential services.  

So there’s been a ‘stay-at-home’ order. Here’s what that means for you:

https://www.washingtonpost.com/local/stay-at-home-maryland-virginia-dc/2020/03/30/167cba86-72a0-11ea-85cb-8670579b863d_story.html

Sunday, March 29, 2020

Sunday, March 29, 2020

Tonight's picture was taken in April of 2007. That day we took Mattie down to the National Mall because it was kite day. Every one was there to fly a kite. However, while there we couldn't resist checking out all the wonderful cherry blossoms. They are a glorious sight each spring, and the trees are so full of white blooms, it almost looks like snow. Peter and I walked down to the National Mall today. Ironically the trees are out and looked exactly the same as they did in 2007. Of course the big difference for us is the trees outlived Mattie. 


Quote of the day: Today's update on the Coronavirus from Johns Hopkins. 

• number of people in the US diagnosed with the virus: 139, 675
• number of people in the US who died from the virus: 2,436

Sunny was able to take a walk today thanks to anti-inflammatory drugs and muscle relaxants. This is a HIGHLY unusual sight in Washington, DC...... Rock Creek Park was closed. It has been closed for over a week now to cut down traffic going to see the cherry blossoms on the Mall. It was delightful being able to walk on the road!

See what Rock Creek Park looked like! Totally unheard of, but it made it very easy for walkers and cyclists to use this route while social distancing!

Our three mile walk today!

It was a glorious weather day today. Blue skies and sun! All the trees are acknowledging it is spring, and it is wonderful to see something UNAFFECTED by the Coronavirus. 

Tulips, daffodils, and trees on the Mall. 

 Daffodils look like happy faces to me. 

These are the beautiful cherry trees on the National Mall. The same trees featured in the photo of Mattie from 2007. Though you can't see it here, there was a bride posing for photos under these trees today. 

Meanwhile, this was me. While walking today, I started having trouble seeing. I could see bright lights and wavy lines in both eyes. What was going on? I was having a double ocular migraine. An ocular migraine is a rare condition characterized by temporary vision loss or even temporary blindness in one eye. Ocular migraines are caused by reduced blood flow or spasms of blood vessels in the retina or behind the eye. The symptoms can last for 20 to 30 minutes and it can be unsettling. Since I occasionally get these types of migraines, I no longer panic. Instead, I try to sit still and relax, until my vision returns. But I can assure you when I got one of these attacks for the FIRST time years ago, I thought I was losing my vision permanently. 

My companion sitting with me until I felt better!

The beauty of the Red Bud tree against the Washington Monument. 

Close up of the Red Bud tree! These are incredibly beautiful and vibrant trees! They also signal to me that spring is here in our Nation's capital. 

Saturday, March 28, 2020

Saturday, March 28, 2020

Tonight's picture was taken in April of 2009. Mattie was home between treatments and I had no idea Peter snapped this photo of us. But this photo captured the mood in our home. It portrays  what we managed daily, and it was even harder to help Mattie when we were at home versus in the hospital. At home we had no support, and the days and nights were LONG and challenging. What I think this photo also illustrates was that the emotional issues were not only felt by Mattie but by me and Peter as well.


Quote of the day: Today's coronavirus update from Johns Hopkins.

• number of people diagnosed with the virus: 119,748
• number of people who died from the virus: 1,991

My zumba instructor does a virtual class THREE times a week. Apparently Peter snapped a photo of me this morning. Notice Sunny was staying close!

For over a week, Sunny has been dealing with a problem with his back right leg. Fortunately he was examined by a vet last week and had xrays. So we know his issue is only muscular. Today, Sunny began limping again, so we reduced the lengths of his walks and put him on his prescribed muscle relaxer. Certainly giving a dog medication is a lot easier than giving it to a cat. Yet this particular medication Sunny detests. I have tried putting the muscle relaxant into his usual favorites. But he landed up eating everything but the pills. Thank goodness for pill pockets (a treat to hide pills in). Fortunately I had a package at home and since Sunny never gets these treats, he seems to like them, pill and all. 

Though Sunny is dealing with muscular pain, he had no problem tracking down this squirrel and barking his head off.

Between our Sunny walks and this long walk in Alexandria today, we walked close to 8 miles today. 

Typically Peter and I walk with Sunny. But today we walked with our friends Ann and Bob. We did as best we could to walk many feet apart. 

Part of our walk took us on the Bluemont Junction Trail. It is a 1.2-mile asphalt-paved rail trail in Arlington County, Virginia, that the Arlington County government constructed along a former branch of the defunct Washington and Old Dominion Railroad.

This path was a first for me!

Bluemont Junction began operation in 1912 as a part of the newly formed Washington & Old Dominion (W&OD) Railway. The station was a busy transfer point for passengers and freight from Alexandria and Georgetown to points west, ending at Bluemont, Virginia - a popular resort in the Blue Ridge Mountains. During the peak years of passenger service, from 1912 and into the 1920s, trains ran between Georgetown and Bluemont Junction every 10-20 minutes. Passenger service ended in 1951, but freight continued until 1968 when the W&OD went out of business. The W&OD Trail from Shirlington to Purcellville follows the former railroad right-of-way.

There were once mail trains, freight trains, milk trains and even passenger trains that once stopped at this station. 

Friday, March 27, 2020

Friday, March 27, 2020

Tonight's picture was taken in April of 2009. Mattie was home between treatments. As you can see his leg was recasted because Mattie had trouble straightening his leg out. Instead it was bent at the knee from lack of use post-surgery, which of course made walking impossible. So the thought was recasting his leg would help correct the issue. While at home, Peter and Mattie got creative. They took cardboard boxes and other found objects at home and built this beautiful suspension bridge. Mattie received several cancer treatments in NYC, and I believe yellow taxis and the George Washington Bridge really caught his attention that year. 


Quote of the day: Today's coronavirus counts. The USA has the highest number of diagnosed cases in the world. ~ Johns Hopkins

• number of people diagnosed with the virus: 97,226
• number of people who have died from the virus: 1,478

Have you ever see the movie Ground Hog Day? If not, it is worth seeing. It stars Bill Murray as Phil Connors, a TV weatherman who, during an assignment covering the annual Groundhog Day event, is caught in a time loop, repeatedly reliving the same day.

This movie seems to describe how most of us are living in isolation because of the coronavirus. Everyday appears to be the same as the day before. Of course, this monotony means that we aren't directly impacted with the virus, so I do have great perspective and compassion. 

Each day we take a long walk somewhere with Sunny. This seems to keep all of us sane. We drove to Great Falls today. All National Parks have waived their admission fees during the coronavirus crisis. Which is lovely, because it gives all of us a chance to get out and enjoy sunshine, space, and greenery. 

Wild flowers in their glory. 

Sunny loves the adventure! He wasn't too thrilled with my request for a photo. But like Mattie, he complies.  

The beauty of the Falls. It was in the 60s today and most certainly looked and felt like spring. Such signs of hope are truly needed when living day to day in crisis. 

For part of our walk, we were on straight paths and other times, more challenging terrain. Sunny loves both and handles rocks and hills without a problem. Though there were others around us, the park is huge and it is very easy to distance yourself from others. Nonetheless, Sunny got lots of compliments today!

Sunny after his two mile walk! We had the windows down and he was sniffing the breezes while we were driving. Sunny and Indie keep us on a consistent schedule, and help normalize our daily existence. 

Thursday, March 26, 2020

Thursday, March 26, 2020

Tonight's picture was taken in April of 2009. Mattie requested certain foods for dinner, so we went to one of the restaurants on the hospital's campus and got Mattie his starches..... pasta and pizza. We went with whatever Mattie requested because our goal was to get him to eat something. Typically he wasn't hungry on treatment. So whenever he requested a food, we would run to get it. Notice the line up of cars on Mattie's container. Mattie never traveled anywhere without a toy car!






Quote of the day: Today's coronavirus counts from Johns Hopkins. 

1. 79,785 diagnosed with the virus
2. 1,124 people who died from the virus

Today was my first experience participating in a virtual conference session. Peter and I were scheduled to host a psychosocial symposium in Portland, Oregon in the beginning of March. Of course the conference got canceled, but the American Psychosocial Oncology Society decided to host its keynote speakers and 30 of their sessions on-line. 

Peter is used to on-line presenting! I am not. So I got my first taste of using Zoom. Rather remarkable what it can accomplish. You can hear people from all over the the country and you can share slides and present content at the same time. 


This was our 90 minute agenda. I was opening up the session. Since we each had a time limit, I wrote out what I planned on saying. I typically don't do this for live presentations. As I feed off of people in the audience. So presenting into a computer, is a much different experience for me. 

Below are my slides that I presented today...............

1. Good morning, I am Victoria Sardi-Brown and I am the president of the Mattie Miracle Cancer Foundation.
2. It is wonderful to be a Part of this distinguished panel and Mattie Miracle is proud to be able to fund three of the implementation research studies that will be presented today.
3. I have the honor of opening this session by discussing…. why we are here? I think the answer to that question could be different for each of us on this panel and even for those of you who are listening to this presentation. Certainly, we are all here because the Psychosocial standards of care are historic evidence-based standards that inspire both innovative research and the delivery of optimal care for the children with cancer and their families. 
4. Yet from my perspective…. we are here….. thanks to Mattie Brown, the cute little boy you see on this slide. Mattie was the inspiration for the development of the Standards and as his mom, every time we talk about the standards, implement them in research or in practice, you are helping us keep Mattie’s memory alive and are preserving his legacy. 

1. Peter and I are passionate about psychosocial care because we learned about its importance first hand through our greatest teacher, Mattie. 
2. Mattie was our only child and was diagnosed with osteosarcoma when he was 6 years old. He had four primary bone tumors at diagnosis and endured 10 months of chemotherapy, two limb salvaging surgeries, experimental treatment and radiation. 
3. This just lists the medical treatment. But what we quickly learned were all these treatments had profound psychological and social consequences on both Mattie and us.  
4. So much so that three months into Mattie’s treatment he was diagnosed with clinical depression, anxiety and medical traumatic stress. Issues he did not have prior to diagnosis. 

1. Two months after Mattie died, we created the Mattie Miracle Cancer Foundation. 
2. We are the only non-profit dedicated to psychosocial support, awareness, advocacy, and research. 
3. For 11 years, we have been spreading the message that childhood cancer is not just about the medicine and that psychosocial care must be a part of comprehensive cancer care. 

1. Mattie Miracle is proud that the Psychosocial Standards of Care were published in 2015 and because of our commitment to the Standards we funded indefinite open access to these Standards for professionals and the advocacy community.
2. As you can see the actual publication of the Standards is about an inch thick, or around 900 pages. It is a substantial scientific publication, yet with the companion tools Amanda will highlight, I think it will make it easier for clinicians to apply the standards to their treatment sites. 

There are 15 standards of care and the beauty of these Standards is they address everything from diagnosis, treatment, survivorship and end of life and bereavement care. In addition, they focus on the child and the entire family system.

These 9 professionals are part of the core team for the development and now implementation of the Standards of Care. I used to refer to them as Mattie Miracle’s dream team, but now I call them the rainmakers. I believe they have earned this title as each of them are amazing individuals who have advanced the practice and research of psychosocial care. 

Mattie Miracle is passionate about the implementation of the Standards. We do not want them to be shelf ware. Therefore in 2018, we developed evidence based implementation grants. In less than two years we have donated over $60,000 in research funding. 

1. This slide illustrates our wonderful grant recipients through American Psychosocial Oncology Society. They represent six different institutions and their research covers 6 out of the 15 Standards of Care. 
2. We are honored to support the innovative work of Kim, Kristin, and Alex and we are happy they can share their research with us today. 

The session went VERY well today! The researchers who we funded are outstanding individuals. They presented beautifully and their work is innovative..... one created a text message reminder system to get teens to comply with medication adherence, another designed an online evidence based support program for parents of children with cancer, and the third researcher investigated the barriers to providing supportive care for siblings of children with cancer and then developed an online tool kit to help other hospitals. 

As one research told me today, she is proud to be a "Mattie Miracle Research Ambassador!" LOVE IT! 

Wednesday, March 25, 2020

Wednesday, March 25, 2020

Tonight's picture was taken in April of 2009. Mattie was home between treatments and wanted a bowl of Cornflakes. He was admiring the shape of this flake and naturally I snapped a photo. It was these spur of the moment photos that truly captured our days together. With Mattie, even the shape of a flake could be interesting. It was the beauty of life with Mattie. 










Quote of the day: The coronavirus totals for today from Johns Hopkins:

1. people diagnosed with the virus: 62,873 (it is hard to believe that half of this number is in New York state alone)
2. people who died from the virus: 894

When I woke up this morning, I was greeted by a message from my childhood friend in New York. She wanted me to know her husband died today from the coronavirus. Not that I did not take the virus seriously before, but now I see someone directly affected. In particular she wasn't allowed into the hospital (as the hospital her husband was brought to only allowed patients, NO visitors) while her husband was hospitalized for two days. She received no information in those two days, until today when they called her to tell her he died. You can only imagine how she is feeling about all of this! Having dealt with a hospital system, I can't imagine having to separate from the patient! So much is wrong with this as patients need family advocates at all times in a hospital setting (on a good day for sure, but most certainly in times of chaos). 

I try to look for signs of hope amidst all the bad news. Today I saw Governor Cuomo cite the fact that the density control plan seems to be working in NYC. On Sunday the projected hospitalizations for the virus doubled every 2 days. Now the projection is there will be a doubling every 5 days. 

Since it was chilly and rainy today, we headed back to Roosevelt Island. As I knew no one would be there because of the weather. It was us with the birds and deer!

Sunny loves the Island. Just like Mattie did. It doesn't matter the temperature or the weather. He loves walking through the woods and is stimulated by all the squirrels and deer. 

When we walk on the Island, it is about a 90 minute break from reality. Which is very needed. 

Can you see all the deer? 

A close up of the white tail deer. Ironically they aren't as concerned about us as they are about Sunny!