Saturday, March 24, 2018

Saturday, March 24, 2018

Tonight's picture was taken in January of 2009. Mattie was home in between treatments and was on the couch surrounded by many of the items his care community gave him. In fact, can you see the star wand he was holding? It came from the owner of the Dairy Godmother, an ice cream and frozen treat store in Alexandria, VA. Naturally you couldn't have a wand without the ice cream! Mattie loved ice cream, even during his cancer treatment. We were more than eager for him to eat it too, since he was emaciated from chemotherapy. Literally the pillows on the couch, the green stuffed animal, and the military patches were all gifts! The outpouring of support for Mattie was hard to describe. 


Quote of the day: Teamwork is the ability to work together toward a common vision. The ability to direct individual accomplishments toward organizational objectives. It is the fuel that allows common people to attain uncommon results. ~ Andrew Carnegie


Mattie Miracle's goal is to cover everything psychosocial: 1) funding direct supportive care services (our child life specialist, and snack/item carts), 2) advocacy of psychosocial issues on Capitol Hill, 3) strategizing how to implement the evidence based Psychosocial Standards of Care for Children with Cancer and Their Families at treatment sites around the country, 4) contributing to the psychosocial research literature, and 5) offering psychosocial grants to researchers. 

Mattie Miracle will be offering $20,000 in psychosocial grants this year. The grants are offered through two professional associations: the Association of Pediatric Hematology/Oncology Nurses (APHON) and the American Psychosocial Oncology Society (APOS). We thank both APHON and APOS for standing behind our psychosocial mission.

Recently we created The Mattie Miracle Early Investigator Award for APOS clinicians who wish to support research that aims to help implement any of the 15 published Pediatric Psychosocial Standards of Care for Children with Cancer and Their Families.  The goal of implementing the Standards is to ensure optimal psychosocial care for children with cancer and their families from the time of diagnosis, throughout treatment, into survivorship or end of life and bereavement care.

This partnership between Mattie Miracle and APOS was announced today. Mattie Miracle is honored to be working with the American Psychosocial Oncology Society (APOS) by annually funding an Early Investigator Research grant.  This grant  will help to support the implementation of the Psychosocial Standards of Care.  

APOS was formed in 1986 to bring together professionals working in the psychological, behavioral and social aspects of cancer. Its mission broadened in the early 2000's to network professionals from all disciplines working in psychosocial oncology: nurses, social workers, psychologists, counselors, clergy and psychiatrists.

APOS is the professional association which invited Mattie Miracle to host both of its think tanks at their annual conferences, think tanks that were instrumental to the creation of the Standards of Care.  APOS is also a professional endorser of the Psychosocial Standards of Care. 


To learn more about the Grant: 

https://apos-society.org/wp content/uploads/2018/03/MMCF.APOS_.LOI2_.pdf

Friday, March 23, 2018

Friday, March 23, 2018

Tonight's picture was taken in May of 2006. Mattie was almost four years old. That day he was invited to his preschool friend's birthday party. It was one neat party, that involved pony rides. Mattie absolutely loved it, as he was intrigued by all animals. 

My friend, Carolyn, sent me this photo. Apparently Shutterfly sent it to her today, as a photo memory of the day. I absolutely loved receiving this surprise, and what photos do is they give us an opportunity to talk and reflect on Mattie and his life. Which is also a gift!


Quote of the day: You don’t have to say everything to be a light. Sometimes a fire built on a hill will bring interested people to your campfire. ~ Shannon L. Alder

My day started off at Alexandria City Hall. For my faithful readers, you may remember I head to City Hall every spring to secure permits for the Foundation's annual Walk. We have had to get permits since 2012. Prior to that, we weren't required to have permits on private property in Alexandria, VA. But that all changed six years ago. I will never forget my first permitting experience in 2012. It was a NIGHTMARE of grand proportion. Mainly because the permitting office seemed able to help those who were building homes and things like that, but ill equipped to help someone like me who needed permits to host an event. They were as confused as I was and I also had to deal with surly attitudes, which I really didn't appreciate. 

In fact, in 2012, I spent hours in the permitting office and got so frustrated that I wrote to an Alexandria City council member, who connected me with the management of the permitting office. Ever since that connection, things have changed for me. I have been assigned to a lovely staff member who helps me every year. I tell her about our event and she then completes the paperwork for me and applies for all the permits on my behalf. Once the documents are assembled and approved by the office, I then come to City Hall to pay for the permits. 

So for example, today, I only spent thirty minutes total in the office, unlike in past years. When I tell you permitting isn't intuitive, I mean it! To have moon bounces at our event, I need a building permit. Correct, you read that right... a BUILDING permit. Which to me makes NO sense, but it is considered a raised structure. When all is said and done, we need the following permits: (1) building, (2) fire, (3) noise, and (4) food permits. Permitting is not inexpensive too, try close to $400, of which we use our own personal finances to cover this cost.  

Meanwhile later in the day, Peter and I were walking through the George Washington University campus. On the side of the road I spotted a Dunkin Donuts truck. So I commented to Peter.... wouldn't this be great to have at the Walk? So many of our attendees are looking for the coffee on the morning of the Walk. So we went over to talk to the lady inside the truck. Peter connected with Marti immediately and he did a great job pitching Mattie Miracle to her. 

Marti works inside the Community Cruiser. The Dunkin’ Donuts Community Cruiser is a mobile coffee truck that distributes free samples of Hot and Iced Coffee to the community! This truck can be found everywhere from sporting events and charity walks to college campuses and community parades.

This evening, I learned that Dunkin Donut's Foundation (Joy in Childhood Foundation), directly supports children with illnesses. So really we would be a good match for this truck. Marti gave us free samples, gift cards, and then told us how to request the truck for our Walk on May 20th. So we shall see, but the notion of a truck roaming around our DC community and giving out free samples is LOVELY! 

To learn more about the Community Cruiser, go to:

http://ddcommunitycruiser.com/dcbalt/

Thursday, March 22, 2018

Thursday, March 22, 2018

Tonight's picture was taken in March of 2009. Mattie was home in between treatments and he and Peter spent several hours building this ferris wheel. This creation put a big smile on Mattie's face. However, our time at home wasn't usually this pretty or fun. For us, being at home was actually far more stressful than living in the hospital. Mainly because at home we were totally responsible for Mattie's medical care and his mental state. Which was very difficult to manage at times because Mattie dealt with constant pain, sadness, anxiety, and the ramifications of medical trauma. Meanwhile as all of these crises were unfolding, the clutter within our home started taking over. I couldn't process the amount of items..... gifts and toys given to Mattie practically daily from either his support community or at the hospital. All of these items were needed to bolster Mattie's spirits but at the same time I was overwhelmed with what to do with all of them. So you can see the pile that grew by the window of our living room. By the time Mattie died, I had piles everywhere and for over a year, I neither had the energy or desire to touch them.


Quote of the day: The world would be a nicer place if everyone had the ability to love as unconditionally as a dog. ~ M.K. Clinton

I was gone for most of the afternoon today while visiting my friend. When I got home, Sunny wanted OUT!!! Mind you he had a good three mile walk before I left earlier in the day. In any case, check out this regal pooch! He was thrilled to be outside and sniffing the breezes. 

I am fortunate to have an enclosed outdoor commons area. It is only in this space that I can let Sunny outside without a leash. He is always supervised but he loves the freedom. It is typically in our commons area that Sunny meets up with other doggies in our complex. As it turns to spring soon, our commons area will be transformed into a doggie playground at 5pm!

Our regal boy! You want to know what he is looking at? He is surveilling the commons area for squirrels! Sunny if left to his own devices would be a hunter. Lately I have noticed that he wants to stalk and chase Canadian Geese. I love geese, so I always pull Sunny away from a confrontation. Yet look what I saw on the road tonight..................










I literally saw this bumper stick on the back of a truck in Northern Virginia while driving home tonight. As soon as I saw this photo it dawned on me...... border collies like chasing geese! it is part of their stalking instinct. I never made the connection before seeing this sticker. 

Geese Police is a Canada goose/bird control company, which utilizes highly trained working Border Collies to herd Canada geese off client’s property. Geese Police get rid of Canada geese humanely using working Border collies.  

https://www.geesepoliceinc.com/home.html





Check out this five minute video on the use of Border Collies on the National mall. Sunny would LOVE to sign up!

https://www.youtube.com/watch?time_continue=12&v=We_nfRzCDfI

Wednesday, March 21, 2018

Wednesday, March 21, 2018

Tonight's picture was taken in February of 2006. Mattie was almost four years old and if you look closely you will see the mess taking place on our coffee table. Mattie was not only playing with his cars and trains, but he was covering all the vehicles with clay. Look at the fun he was having, but can you also imagine the clean up. Mattie loved playing with clay or playdoh and as long as it was somewhat contained, I never prevented his creativity. 


Quote of the day: There's just something beautiful about walking in snow that nobody else has walked on. It makes you believe you're special. ~ Carol Rifka Brunt

Sunny and I walked three miles in the snow today. Besides it being frigid out, most of the pathways we went on weren't shoveled. So trying to balance him and my umbrella, trudging  through four inches of snow was good exercise. 

Though Sunny grew up in South Carolina, the snow doesn't stop him. Sunny is about walking, experiencing nature, and covering territory.

We do a daily loop together around the Potomac River. Sunny loves this walk because there is always something to sniff, dogs to greet, and I should mention Sunny loves to stalk ducks and geese. I don't let him chase the birds, but if I let him off leash, there would be a few less birds in DC. 

This was on our way to the Potomac River. Though I am not a snow person or a cold weather person for that matter, I do love when the walk ways are not congested. I only experience this peaceful sort of DC when it is very cold or very hot outside. It is then, that you can appreciate the trees and birds around you without the noise and the ugly behavior of people. 

It was hard to see anything by the water, as fog had rolled in! But those trees across the way are on Roosevelt Island. As I walked through Washington Harbor, I passed maybe a handful of people. It was delightful! 

Mattie loved the snow and playing in it. I remember spending time outside in it so he could play. Sunny reminds me of Mattie, in the sense that they are not bothered by the weather in any way. With Mattie I learned to operate outside, regardless of the temperature, mainly because he seemed happier with fresh air and with the freedom that only nature can provide. 

Tuesday, March 20, 2018

Tuesday, March 20, 2018 --- Mattie died 444 weeks ago today. 

Tonight's picture was taken in April of 2009. Back then we had NO IDEA that Mattie's cancer was rapidly spreading throughout his body. We thought there was still hope at this point. I am quite sure I snapped this photo because I thought Mattie was being whimsical! After all, check out the parking lot he had going on with his food container. Mattie LOVED toy cars, so much so, that he always had one in his hands or pockets where ever we went. 




Quote of the day: Coming together is a beginning. Keeping together is progress. Working together is success. ~ Henry Ford


I love Henry Ford's quote, because in all reality it captures the sentiment that I share regarding the development of the Psychosocial Standards of Care for Children with Cancer and Their Families. In 2012, we brought together psychosocial leaders on Capitol Hill. That may sound easy to do, or a regular occurrence. But it wasn't! Our Symposium on Capitol Hill was novel, as NO ONE ever talked about the psychosocial issues associated with childhood cancer in such a forum. In fact, thanks to us, psychosocial care for children with cancer now has a voice on Capitol Hill. 

At the Symposium in 2012, the researchers we invited heard our call to action to develop Standards of Care. However, this core group of researchers, along with over 80 other health care providers from around the country worked on this endeavor for over three years. To this date, we are still working with the core team, as are mission has now turned to the implementation of the published evidence based Standards. Which will take time, as we are asking to change a the medical mind set of care. But we are all committed to this vision, as we do not want to see the Standards as shelf ware or viewed as just an academic exercise. From Henry Ford's stand point, I think the Standards initiative is a success. As there is a committed team of people determined to work together toward a common goal. 

A webinar went on-line today about our partnership with the Association of Pediatric Hematology/Oncology Nurses (APHON). APHON was the first professional Association to endorse the Psychosocial Standards of Care. Standards which were Mattie Miracle's vision.

Mattie Miracle will be annually funding three evidence based practice grants ($10,000 total) for the implementation of the Psychosocial Standards of Care for Children with Cancer and Their Families. We are proud to work with APHON and are grateful to be included in the grant decision making process. 

I welcome you to listen to the webinar and view the slide show. The webinar is co-run by one of our core team researchers, Kathy Kelly (a nurse scientist at Children's National Health Systems, Washington, DC). Kathy does a nice job at giving an overview of the vision for the Standards as well as a timeline for the project. The webinar is extensive because it is trying to coach nursing professionals on what an evidence based practice grant is and how to apply for it. 

To listen to the webinar, go to:  http://aphon.org/education/webinars/ebp-psychosocial-standards-webinar

Monday, March 19, 2018

Monday, March 19, 2018

Tonight's picture was taken in March of 2009. We took Mattie to the circus that day. It was Mattie's first and last trip to see the circus. We were lucky to be given a private box to sit in, which was perfect given Mattie's compromised immunity. Nonetheless, Mattie came away with all sorts of circus gear and he literally made his way to every concession stand to see what they were featuring. Also in attendance were a couple of Mattie's friends from the hospital. They came as a group and sat in a different section. During intermission, Mattie met up with his friends in the lobby of the Verizon Center, and that made the occasion very festive and memorable for all of us. 


Quote of the day: Without a sense of caring, there can be no sense of community. ~ Anthony J. D'Angelo


In the midst of all the things I am doing for the Foundation today, I took on encampments and graffiti. In the past eight years, I have seen a drastic change occur within our Foggy Bottom community of Washington, DC. A community I have lived in for over twenty years. We have three major problems around us.... 1) tent communities (encampments), 2) graffiti, and 3) pot smoke everywhere. None of these things were evident when Mattie was alive. But slowly changes have unfolded and in so many ways each one impacts the quality of life for DC residents. 

I am sensitive to the plight of individuals who have fallen on hard times, maybe addicted to substances, and/or have a host of physical and mental health issues. Issues that cause significant impairment which prevent one from functioning in society. 

I am happy the District of Columbia has outreach teams that try to counsel our homeless residents to make better choices and provide them with access to needed services. Yet as I wrote to the Mayor's office today, I am concerned that there are little to no forms of recourse for residents who pay taxes as well as rent/mortgages with regard to this matter. 

Keep in mind this is our Nation's capital! Yet this is what a typical park in Washington, DC looks like. Tents everywhere, clothes strung on trees, some times there are grills cooking food and the list goes on. I will leave bathroom matters to your imagination. But that is a problem on warm days, because you can smell it. 

Right near the George Washington University is an enormous encampment. It takes up an entire city block. This is not a photo I took, but one that shows city officials cleaning this area up a year ago. However, one can do a clean up, but within a matter of a few weeks, it starts all over again. My biggest compliant with DC, unlike in Maryland and Virginia, is that there isn't a proactive program to address these issues. Instead, they are usually dealt with only when residents start complaining. 

This is a sight I see daily, at our exit off the highway. This encampment is right in front of the State Department. Who does nothing about this what so ever. What started as one tent, has multiplied. 

Then we also have massive and pervasive graffiti. If there is a clean wall, you know it won't be clean for long. I removed this nightmare last spring. But guess what, it is equally ugly now! 

Arlington and Alexandria, VA also have a graffiti problem, but I see what they do.... they proactively remove it! It doesn't stay up for years on end. 

Now this maybe the worst to me, because it is right outside my bedroom window. When I wake up, this is the first thing I see each day and the last thing I see at night. 

How do you like this art work in front of the Kennedy Center? What troubles me is I seem to be the only one bothered by all of this. I don't view this as artistic or a positive form of self expression. I view it as defacing private and public property and with each form of ugliness, this threatens our civilized and productive society. 

If you are down, sad, or angry, seeing this only adds another layer to these feelings. Or it does for me. 

Sunday, March 18, 2018

Sunday, March 18, 2018

Tonight's picture was taken in March of 2009. Mattie was going through his chicken tender and french fry phase. When I say a phase, it was a very short time period as Mattie's tastes and food needs changed practically week to week. So for example one week he would want nothing else but chicken tenders and then the following week, he neither wanted to see or smell a chicken tender. Because Mattie lost an incredible amount of weight on treatment, we felt Mattie could have anything he wanted to eat. We just were motivated to see him eating something. The somethings ranged from Utz potato chips (he would eat NO other brand), vanilla shakes, shrimp (of all things!), Dunkin Donuts (vanilla frosted with rainbow sprinkles), and cupcakes. There are a lot of people hung up on nutrition while undergoing treatment. As you can see nutrition and a balanced diet were not even on my top ten list for Mattie. As the number one priority was getting him to consume any sort of calorie we could get into him. 


Quote of the day: The best philanthropy is not just about giving money but giving leadership. The best philanthropists bring the gifts that made them successful—the drive, the determination, the refusal to accept that something can't be done if it needs to be—into their philanthropy. ~ Tony Blair

I am no stranger to the Christmas Tree Shops. Why? Because there are many in Massachusetts and I have had the fun of going shopping there while living in Boston, or when visiting Peter's parents. 

Several years ago, we learned that a Christmas Tree Shops came to Waldorf, MD. It takes us about 50 minutes to drive to this store each way, but it is our yearly ritual. 

The Christmas Tree Shops is a discount home-goods chain offering seasonal decor year-round, plus furniture, kitchen items, and gifts. This is where Peter and I find all the the filler items for our raffle baskets. Not to mention the actual baskets. You can't believe how much you can buy there at a reasonable price. Which is why we make the venture every year. 

We are featuring 10 raffle baskets this year at the Walk & Family Festival. After today's large shop, I would say 7 out of 10 baskets are ready to be staged. This was our cart at the check out line. We literally had the cart filled to the brim! 

Typically we go on this adventure in April. But we are trying to do everything a bit earlier this year, so I am not scrambling in April into May. As it takes a lot of planning and leg work to make the Walk a reality. 

It's that time of year when Mattie's room starts getting transformed or overwhelmed by Walk items. I have already begun to stage the raffle baskets so I can see what is missing and needs attention. 

We have a brand new basket this year entitled, "Wish Upon a Star." We solicited Walt Disney World, and they graciously are donating four Park Hopper Passes to Disney World to us. 

These passes will provide the recipients with a magical experience of visiting all of Disney's theme parks in ONE DAY: the Magic Kingdom® Park, Epcot®, Disney's Hollywood Studios®, and Disney's Animal Kingdom®. They may not be used for admission from December 25-31 of any year, through their expiration date (which is in two years).

When I was visiting my parents in Los Angeles, I literally bought Disney items at the airport to add to this basket. As Anaheim, CA is the home of Disneyland. So this basket is turning out to be very cute and I hope there will be ticket takers, since the price of these four tickets to Disney are worth around $700!