Saturday, March 2, 2019

Saturday, March 2, 2019

Tonight's picture was taken in March of 2006. Mattie loved working with clay of all kinds. That day he got his clay out and was designing all sorts of things to add to his cars, car carrier and trains. Literally with clay it was a royal mess. But Mattie was good about keeping the mess contained so it would be easier to clean up after he was done. 


Quote of the day: The pessimist complains about the wind; the optimist expects it to change; the realist adjusts the sails. ~ William Arthur Ward

Our flight was delayed today by only one hour. We are very lucky to have gotten home today, since there is a threat of snow in DC for Sunday. 

In case you did not know, Atlanta is the headquarters of Delta airlines. The airport is enormous, well run, and literally everything there is Delta. 

You can see the sky line from the airport. 

An aerial view of Atlanta. 

I checked on Sunny virtually today. Can you see him, sitting on a cot? He is on the right hand side, next to the blue stool. What is he looking at? Try the door to get out of the room! 

Sunny will be a happy camper tomorrow!

Friday, March 1, 2019

Friday, March 2, 2019

Tonight's picture was taken in March of 2006. This was a VERY unusual occurrence in our home. Mattie rarely napped, I mean ever. Even as a baby, napping wasn't his favorite thing to do. However, as a preschooler, when Mattie headed to the couch and fell asleep, I knew he was sick with a fever. 




Quote of the day: How you enter a space and how you leave a space is as important as what happens in the space. ~ Emily M. Axelrod

Today we hosted an implementation research symposium at the American Psychosocial Oncology Society Conference in Atlanta, GA.  Peter and I have just stopped moving today at 10:30pm, and we are both exhausted. This was our first year granting funds for research and hosting this type of symposium. It was a learning lesson, and we have insights moving forward about how we can make the presentations more applied for those in the audience. After all the goal is to inspire innovative models to be developed so that clinicians from around the Country can take these models back to their sites to use and enhance care for patients and families. 




This is a listing of all six of our grant recipients. Dr. Canter received a $10,000 grant from us and her research was selected by the American Psychosocial Oncology Society's research committee. The other five studies were personally selected by Mattie Miracle, given that these studies lined up with Mattie Miracle's vision and commitment for Standards implementation. 

Lighting in the conference room was horrible, but Peter snapped this photo of me with the researchers. From left to right: Vicki, Kim Canter, Kristin Long, Dr. Lori Wiener, Alex Psihogios, Gillian Regan, and Kathy Kirkpatrick. 

On an aside, the hotel fiasco continued today. I was so exasperated that I decided while taking a break from the conference, to search trip advisor. Trip advisor posted some very bad reviews on this hotel, two of which were from this week. In fact, one person must have been staying on our same floor, as he too complained about the mattresses, moving of furniture throughout the hallways at ALL hours of the day and night, and the inability to get anywhere with hotel staff. In any case, while reading Peter out loud these reviews, a man came up to us and wanted to know if everything was okay. When I said it wasn't, Eddie introduced himself to me as Guest Relations Coordinator. He literally sat down with me and listened to my tirade. I assure you I have been fighting my way through this hotel since I got here. Today, Eddie, with his professionalism, addressed all my concerns. It gives me hope that there are still some people around in our service industry who want to excel and are client oriented. I told him this hotel needs to clone him! 

Thursday, February 28, 2019

Thursday, February 28, 2019

Tonight's picture was taken in March of 2006. This was a very typical scene in our home. Building materials everywhere and Mattie creating. Of course with the height on this tinker toy building, Mattie got a little help from Peter. I will always recall the stark contrast in our home after Mattie died. We went from a home filled to capacity with kid things and a lot of activity and energy, to a home without a child. It took me a lot of time to get used to accepting that change. 







Quote of the day: Because meetings involve people, things can and will go wrong. Provide first aid when necessary. ~ Emily M. Axelrod

This morning we started off our day by listening to the morning greeting, followed by the keynote speaker. This is the American Psychosocial Oncology Society's president, Dr. Teresa DeShields. I had the pleasure of meeting her today. 

Ironically what she did not realize is that when I was in my doctoral program, my dissertation was on family caregiver stress. Which is DeShield's area of specialty. In fact, I remember reading many of her articles and citing them in my dissertation. So for me, it was wonderful to put a face to a name I knew at one time quite well. 

We attended several sessions today. One of which was on the financial burden of childhood cancer, or as researchers call it, "financial toxicity." It was a panel presentation of about four researchers, each sharing their cutting edge work. What caught my attention in one study is she assessed the perspectives of primary and secondary caregivers of children with cancer. In the case of this research, the majority of the primary caregivers were moms and the secondary caregivers were dads. This truly caught my attention, because I think assessing the financial burdens felt by moms versus dads is vital, as we may perceive the toxicity of the burden differently. I know in my role, I took on the majority of the day to day stresses of Mattie's care (while Peter was at work -- trying to keep money coming in and health insurance), but I did not focus on the financial burden because guess who was worried about that?.... Peter! I am glad that research is paying attention to these role differences and how this impacts stress and family functioning. 

This afternoon we were invited to take part in the Association's award ceremony. This is the first year we joined forces with the American Psychosocial Oncology Society to offer research grants. 

We had the opportunity to present Dr. Kimberly Canter this award today. 

Peter captured me speaking and even video recorded my four minute presentation. The transcript of what I said is below, and I think it highlights Mattie Miracle's position on the Psychosocial Standards of Care as well as our commitment to their implementation. 

Me with Dr. Kimberly Canter. Who is delightful and very appreciative of the $10,000 grant from us. 

Peter and me with Kim. 

Later in the day, we attended poster sessions. The title of this presentation was "If you build it, they will come." What do you think this was referring to? THE PSYCHOSOCIAL STANDARDS OF CARE!!! 

It is very refreshing to meet people who have read the standards and are running with them at their treatment sites. This is Dr. Joanna Patten and she is at Seattle Children's Hospital. 

This is Ashley Moss, who works with Joanna Patten in Seattle. Ashley conducted a study at her hospital about a psychosocial screener used with childhood cancer survivors. Ironically before this study, survivors weren't assessed for psychosocial concerns. Needless to say, survivors reported sadness, anxiety, etc, and the screener opened up conversations between patients and their health care providers, in line with the Psychosocial Standards of Care. 

Meanwhile, the hotel saga continues! This was what was outside our room today, in the hallway. Honestly!!! What is this? Well the answer is mattress were coming back into all the rooms. Remember I mentioned that the rooms were used for a pharmacy career day yesterday. Interviews with perspective employees were taking place up and down the hallway. Now that the career day is done, rooms are being re-assembled. You have to ask why put guests on such a floor while this is taking place?! 

I tried talking to the hotel manager and when I did not get what I wanted, I moved up the chain to corporate. I had a twenty minute call with the Marriott today. How this hotel stays in business is beyond me, as the list of issues is very long! Mind you I was juggling a conference, not to mention a nephrologist office who called me and wanted to see me tomorrow. 


VIDEO of Award Presentation (click on the second picture, below the bigger one):
https://www.icloud.com/photos/#0oz2yoCG7IM3Vv0KeEofvUaFA

Transcript of what I said:

I am Victoria Sardi-Brown, the President and co-founder of the Mattie Miracle Cancer Foundation. I am joined by my husband, Peter, who is the co-founder and CEO of Mattie Miracle. We are a Foundation that was born out of the tragic death of our only child, Mattie. Mattie taught us that psychosocial care must be part of comprehensive cancer care, and without it the medical treatment is not as effective. Mattie Miracle had the vision for the need to create Psychosocial Standards of Care and we are committed to not only funding their development but their implementation as well. Which is why we decided to partner with APOS and develop an early investigator research grant. 

As a Foundation, we could have hosted our own internal grant making process or perhaps even selected a different professional association to house this grant. But we selected APOS for many reasons. The most important of which is we consider APOS to be our professional association home. Peter and I are both members of APOS and decided to become members after hosting our first Psychosocial Standards Think Tank at your conference in 2013. Back then we had the honor of meeting your founder, Jimmie Holland, and getting to know your pediatric superstar, Dr. Lori Wiener. From Jimmie, Lori, and our countless interactions with APOS members it was clear to us then as it is to us now that you live out our Foundation’s tagline, and that is. ………. childhood cancer is NOT just about the medicine.  I can’t tell you how refreshing it is for parent advocates to be surrounded by professionals who understand us and the psychosocial language we speak. 

This year, APOS and Mattie Miracle embarked on new territory…. To fund research designed to implement any of the 15-evidence based Psychosocial Standards of Care which were published in Pediatric Blood & Cancer in 2015. 26 letters of intent were submitted to us and 12 were invited to submit full proposals. Proposals were reviewed by three experts in the area of the proposal, and they were evaluated based on scientific merit, innovation, significance to psychosocial oncology, and investigator qualifications. On a side note, Mattie Miracle was so impressed with the caliber of proposals received that the Foundation selected five additional studies to fund at a lower level, bringing the total to almost $40,000 in research grants made to APOS members this year. We welcome you to attend the Pediatric Psychosocial Standards Symposium tomorrow at 3:15pm to hear from all our grant awardees.

With that said, for the $10,000 Mattie Miracle Early Investigator grant, the research selection committee chose Dr. Kimberly Canter’s proposal entitled, Community Implementation of a Psychosocial e-health Intervention for parents of children with cancer. 

I have the pleasure of telling you a little bit about Dr. Canter. Dr. Canter is an Assistant Research Scientist II in the Nemours Center for Healthcare Delivery Science in Wilmington, Delaware and an Assistant Professor of Pediatrics at the Thomas Jefferson University. She completed a pediatric psychology residency in the Division of Behavioral Health and a two-year postdoctoral research fellowship at Nemours under the mentorship of Dr. Anne Kazak. 
The $10,000 grant we are providing to Dr. Canter will enable her to conduct a community centered pilot test of eSCCIP, in order to evaluate the intervention’s feasibility and key psychosocial outcomes. eSCCIP stands for Electronic Surviving Cancer Competently Intervention Program and is a brief, cognitive-behavioral and family systems eHealth intervention for parents and caregivers of children with cancer.   


We are thrilled that Dr. Canter is actively exploring ways to support parents and caregivers, because Mattie Miracle believes parents and caregivers are the unsung heroes throughout the childhood cancer journey. It is my honor to present the first Mattie Miracle Early Investigator Research Grant Award to Dr. Kimberly Canter.

Wednesday, February 27, 2019

Wednesday, February 27, 2019

Tonight's picture was taken in March of 2006. Mattie was attending preschool at that time and there was a tradition at school, that all the children in the classroom would exchange Valentine's day cards with each other. Certainly I could have bought cards for Mattie to scribble on, but I figured a real art project would be right up his alley. So we worked on the cards together with cutting out heart and using glue and glitter. Mattie loved creating and setting up his work station all over our dining room floor. Needless to say, I think the cards were unique and beautiful. 




Quote of the day: Each meeting occurs at the precise moment for which it was meant. Usually, when it will have the greatest impact on our lives. ~ Nadia Scrieva

We have safely arrived in Atlanta. The plane trip was fine and the day went smoothly until checking into the hotel. The conference hotel is a Sheraton. I had better hopes for it, since it is now run by Marriott. But the Marriott should be ashamed of itself. This hotel is truly old, tired and in need of an overhaul. I am stunned that anyone would select this hotel for a conference. 

It lacks eating and snacking options, the area surrounding the hotel is questionable, and overall, the rooms are hysterical. 

This nightmare is our hallway. They had a pharmaceutical career day today, and literally every room on the floor was used for interviews. Chairs lined the hallways and I have to tell you it was disorienting as you aren't expecting lines of people sitting in a hotel hallway like this. 

This is a close up of the hallway rug. I entitle it Angry Goldfish. The color is horrifically depressing and all I can think about is how dirty it looks. 

I am very sensitive to my environment, and this place set me off. If we were going to be here long, I honestly would move out of this hotel. 

Welcome to the rug in our hotel room. If you have issues with dizziness, this is NOT the place for you. Just looking at this pattern makes me crazy!

The overall theme of the room! Various shades of Brown. I happen to like the color brown, but not all over a room. 

But the icing on the cake is the bathroom. It is made for a person the size of a toddler. I went on line today, and trip advisor had a field day with this hotel, especially the bathrooms! Honestly I have seen cruise ships with larger cabin bathrooms than this.

In the middle of the hotel is an enclosed pool. But with all the wrought iron railings, I thought I was in New Orleans! 

The highlight of the day was dinner. We ate at a restaurant called Canoe. Before I left DC, I investigated restaurants and made reservations ahead of time. Food is important to me, and thankfully dinner made up for the hotel. 

We took a car ride, about 20 minutes from the hotel to an area of Atlanta called Buckhead. Apparently this is a very upscale area and literally we passed estate after estate. Our Uber driver told us that these estates are worth close to $30 million dollars. In any case, tonight was like the United Nations. Our Uber driver was from Trinidad and Tobago, our waiter was from Columbia, and our driver on the way home was from Haiti. All of whom told us their life story, all about their children, and why it was important for them to come to America. 

I love hearing people's life stories, but hearing about one child after another tonight, was a bit much to handle. 

Atlanta is in the 60's. Much warmer than DC. No coat is necessary, especially with the humidity. Humidity in February is an interesting concept. This is what Canoe, looks like in the spring. Unfortunately I did not get to see it this way, as the patio was closed and we ate inside. But the restaurant sits along the Chattahoochee River. 

We had a wonderful waiter, who was a foodie. He made recommendations to us based on our food preferences and he did a stellar job. He recommended starting with their smoked salmon and an arugula salad. They were both wonderful.  The restaurant specializes in fish and game, the chef is from Australia and apparently is known for his dishes like rabbit and venison. I stuck with trout and Peter had venison. 

The signature dessert at the restaurant is popcorn ice cream. That may not sound good, but it was delicious. They apparently soak popcorn in cream and then turn it into ice cream. It was an absolutely sinful dessert.

Back in the brown room again and hoping the first day of the conference goes well tomorrow. 

Tuesday, February 26, 2019

Tuesday, February 26, 2019 -- Mattie died 492 weeks ago today.

Tonight's picture was taken in March of 2005. We took Mattie to Bunnyland at Butler's Orchard in Maryland that weekend. Mattie loved visiting the farm. Jumping in piles of hay and taking a real hay wagon ride around the property. Bunnyland had many activities for the children, including an Easter egg hunt. I would have to say that Mattie enjoyed the hunt more than eating what was inside of the eggs. As my faithful readers know, Mattie did not love sweets like his mom. 


Quote of the day:  Luck is a dividend of sweat. The more you sweat, the luckier you get. ~ Ray Kroc

I strongly believe in Ray Kroc's quote. Especially as it applies to Mattie Miracle. As whatever we have achieved we worked for it, it wasn't just handed to us. As Peter says, "you are always working!" Which is quite accurate, it is the beauty and the treachery of running your own business. 


Tomorrow, we are flying to Atlanta to attend the American Psychosocial Oncology Society (APOS) conference. APOS is not a stranger to us, as Mattie Miracle had the honor of meeting it's founder, Dr. Jimmie Holland (the grandmother of psycho-oncology) and to also host two psychosocial standard think tanks at their conferences. This year, we are headed to the conference because of a new initiative we started. 

Mattie Miracle and APOS partnered together to offer implementation of the Psychosocial Standards grants. Certainly Mattie Miracle could have started its own research grant making program, but I figured it made sense to tie our grants into a professional association. Therefore the association could help us advertise the grants and also provide the subject matter expertise to evaluate the proposals. In total, we gave $40,000 this year to APOS members in research grants. Rather impressive, considering this was our first year granting money in this capacity. We literally received 26 amazing research proposals from all over the country, of which we landed up funding 6. 

We have paid for all six of our grant recipients to attend the APOS conference in Atlanta and to present their research in a Mattie Miracle symposium. In addition, on Thursday, we are taking part in the association's awards ceremony, as Mattie Miracle is highlighting our $10,000 grant recipient with an award. So next time you hear from me, it will be from Georgia. 

Monday, February 25, 2019

Monday, February 25, 2019

Tonight's picture was taken in March of 2007. Mattie was almost five years old and was visiting Key West, Florida with us and Peter's parents. Along our adventures that day, we came across a dinosaur sculpture made out of metal. As you can see, Mattie stopped to give us his dino impression!


Quote of the day: Imagine combining a mailbox, a newspaper, a TV, a radio, a photo album, a public library and a boisterous party attended by everyone you know, and then compressing them all into a single, small, radiant object. That is what a smartphone represents to us. No wonder we can’t take our minds off it. ~ Adrian Ward


About a year ago, a friend of mine gave me an article entitled, How Smartphones Hijack our Minds. I attached a link to the article below for you to check it out for yourself. I am NOT sure why it took me a year to read this article. All I know is the Foundation has busy seasons and when I am busy, I can push non-critical things off to my later "to do" pile. I am glad that the article landed up in that pile at least, because it makes for a very interesting read. Especially if you are like me and glued to your smart phone. 

So where did my cell phone addiction come from? I am sure everyone has a different answer to this question if posed to them. Mine happened while Mattie was enduring cancer treatments in the hospital. I did not turn to my phone for information, or for photos, and I certainly did not turn to it to access social media (though I am not sure Facebook and other outlets were in existence or popular in 2008). What I do know is that my phone served as a life line to the outside world. I was able to communicate by emails and texts to our Team Mattie coordinators and to other friends and family. Literally the beauty of it was I could send a message 24/7. Given that was how life worked in the hospital, the cell phone fit that frenetic and anxiety ridden life style. Yet after Mattie died, I can't say my need to have my phone dissipated. Instead all the habits I picked up in the hospital remain with me today. For me the phone relieves an anxiety of potentially being alone and unable to get support in a crisis. The cancer crisis maybe physically gone, but it most certainly isn't mentally for me. 

I captured some quotes from the article below which I thought were noteworthy. But in a nutshell, having constant physical attachment to one's phone appears to affect our concentration, ability to remember, to think logically and critically, and even worse it impacts our ability to connect with the human beings sitting right in front of us. Though I did not read this article until today, intuitively I just know that my phone has to be in my purse when I am talking to people face to face and along time ago I shut off any rings or noises my phone made. I found those noises so startling that I could never get any work done. I find it interesting the natural accommodations I have made with my cell phone usage, especially when compared to some of the research findings in this article. Check out some of the findings from the article, and see how it could apply to you................................

1. Not only do our phones shape our thoughts in deep and complicated ways, but the effects persist even when we aren’t using the devices. As the brain grows dependent on the technology, the research suggests, the intellect weakens.
2. There has seen mounting evidence that using a smartphone, or even hearing one ring or vibrate, produces a welter of distractions that makes it harder to concentrate on a difficult problem or job. The division of attention impedes reasoning and performance.
3. Researchers examined how smartphones affected learning in a lecture class with 160 students at the University of Arkansas at Monticello. They found that students who didn’t bring their phones to the classroom scored a full letter-grade higher on a test of the material presented than those who brought their phones. It didn’t matter whether the students who had their phones used them or not: All of them scored equally poorly. A study of 91 secondary schools in the U.K., published last year in the journal Labour Economics, found that when schools ban smartphones, students’ examination scores go up substantially, with the weakest students benefiting the most.
4. In a study conducted at the University of Essex in the U.K., 142 participants were divided into pairs and asked to converse in private for 10 minutes. Half talked with a phone in the room, while half had no phone present. The subjects were then given tests of affinity, trust and empathy. “The mere presence of mobile phones,” the researchers reported in 2013 in the Journal of Social and Personal Relationships, “inhibited the development of interpersonal closeness and trust” and diminished “the extent to which individuals felt empathy and understanding from their partners.” The downsides were strongest when “a personally meaningful topic” was being discussed. 
5. Google effect: Because search engines are continually available to us, we may often be in a state of not feeling we need to encode the information internally. When we need it, we will look it up.

How Smartphones Hijack Our Minds
https://www.wsj.com/articles/how-smartphones-hijack-our-minds-1507307811

Sunday, February 24, 2019

Sunday, February 24, 2019

Tonight's picture was taken on Mother's Day in May of 2007. We went to one of Mattie's favorite restaurants in Maryland to celebrate the day. He liked it especially because of this little pond with fish and turtle out front. Ironically we visited this restaurant today, and unfortunately we did not enjoy the food or reliving the experience. 



Quote of the day: Unspeakable feelings need to find expression in words. However... verbalization of very intense feelings may be a difficult task. ~ James A. Chu

Our friends invited us to a musical today, performed by a local teen stage company. The performance was held in Rockville, MD. One of our friend's runs this performance group and her husband, who is also our friend, is dealing with brain cancer. Needless to say, we wanted to show our support to both of them. 

Take the Stage Performance Company is truly a remarkable group of talented and energetic young people who are interested in theatre. Their commitment of time toward rehearsals to pull off such a professional show is noteworthy. I was thrilled to see a full audience. This Performance Company partakes in our annual candy drive and two years ago ran a musical fundraiser for Mattie Miracle. 


I would say there were multiple triggers for us today. First of which was driving to Rockville, MD. We used to take Mattie to Rockville for various things. Starting with the fact that my favorite baby store is there, Buy Buy Baby. Since Mattie's death, we rarely go to this part of Maryland anymore. So driving there today seemed a bit jolting. Then we saw our friend who is managing with cancer. It is hard to see the effects of this horrible disease on those we love. Seeing our friend reminded us of our time with Mattie when he was so ill, not to mention our own mortality. As life has a way of going unscripted.

The teens performed 15 songs today, filled with incredible choreography, lighting, and costumes. One of the most touching songs for Peter and I was entitled, Costume Party, which came from the musical, Come From Away. I have yet to see this musical, but as a synopsis, it is set in the week following the September 11 attacks and tells the true story of what transpired when 38 planes were ordered to land unexpectedly in the small town of Gander, Newfoundland and Labrador, Canada as part of Operation Yellow Ribbon. The characters in the musical are based on (and in most cases share the names of) real Gander residents as well as some of the 7,000 stranded travelers they housed and fed.

The song, Costume Party, truly captures the trauma of these isolated passengers, away from friends, family, and their Country. The title of the song is meaningful. For example, passengers were given clean clothes to wear from the people of Newfoundland. Between the different clothes, living in new surroundings, and surrounded by strangers this made them feel like they were not themselves..... in essence that they were part of a costume party. Yet they knew internally who they were and what they were experiencing, but it is the tension, anxiety, and agitation of living with a trauma that I feel is captured so well in this song. I included a link to the Broadway song here, in case you want to hear it:  https://www.billboard.com/video/cast-of-come-from-away-performs-for-billboard-on-broadway-series-7752342

 After the show, we went to Mattie's restaurant. In honor of him I snapped a photo of the koi fish swimming about. 

If you look at the photo of Mattie and me from above, you will notice that it was taken in this same location. It is hard to believe that the restaurant exists but Mattie doesn't. All in all, today left me feeling fragile and very aware of the uncertainty in life.