Saturday, September 28, 2019

Saturday, September 28, 2019

Tonight's picture was taken in September of 2007. That weekend, Peter took Mattie out on a canoe. That wasn't a first for them. As Peter took Mattie on many Potomac River adventures and was teaching Mattie how to fish. As you can see, Mattie was very proud of the fact he caught a catfish. Don't worry, Peter snapped the photo and then threw the fish back into the River. Mattie loved adventure and he LOVED vehicles (cars, trucks, trains, planes, and boats). He was fascinated by their movement and how they worked. As a baby, we would watch cars drive by or planes fly overhead from our windows. It is no wonder I used to call Mattie my "little engineer."


Quote of the day: Grandmother-grandchild relationships are simple. Grandmas are short on criticism and long on love. ~ Janet Lanese

Tonight's quote is in honor of my maternal grandmother, Anne. Today would have been her 112th birthday! Hard to imagine. My grandmother was the lady all the way on the right in this photo. I remember this moment in time. As we were having lunch in Rockefeller  Center. During the winter this is the skating rink and in the summer, it was this cute cafe. When I was born, my grandmother was already living with my parents, as her husband died at an early age from colon cancer. Back then, I thought everyone grew up in a multi-generational family. My grandmother was the ultimate caregiver, a gentle soul, an amazing cook, kind, and knew how to get stuff done. We were very close and though she died 25 years ago, her presence is deeply missed. 

I got up early today because I wanted to walk Sunny before we went on a day trip to Fredericksburg,VA. How do you like this photo? A stand off between a squirrel and Sunny!

Fredericksburg is about 60 miles from Washington, DC. It was a prominent port in Virginia during the colonial era. During the Civil War, Fredericksburg, located halfway between the capitals of the opposing forces, was the site of the Battle of Fredericksburg and Second Battle of Fredericksburg. 

When we pulled into town, the main street was closed for an Octoberfest event. Lots of music, barbecues, and of course beer everywhere. 

Murals everywhere! It is a small and charming city, with about 24,000 people. 

What I did not realize, was that George Washington grew up in Fredericksburg. His childhood home is there as well as the homes of his mom, sister, and brother are still standing. 

Charles Washington, George Washington's youngest brother, built this landmark in the 1760's as his private residence. After being sold outside the Washington family, the building was leased as a tavern in 1792. Operating as a stopover for travelers for 35 years in the bustling town of Fredericksburg, it was a popular diversion for travelers and locals alike.

This is what the Rising Sun Tavern or Charles' house looks like. 

The charming, old brick Kenmore Inn blends boutique hotel services with the easy intimacy of a bed and breakfast. The home was built circa 1793 and the Kenmore Inn opened for business in 1932 making it Fredericksburg’s longest operating inn.

George Washington purchased this house for his mother in 1772 for $275. Mary Ball Washington spent her last few years in the white frame house. It was located close to her daughter Betty Washington Lewis' home, Kenmore Plantation, and close to a town home owned by her younger son Charles Washington. 
Later in his life, on his visits to Fredericksburg, George Washington was a frequent visitor to his mother's home, and, in April, 1789, came to this house to receive a blessing from his mother before his inauguration.A visit to Mrs. Washington in her home became a regular stop for distinguished visitors to Fredericksburg. Among those stopping by to pay their respects were John Marshall, George Mason, Thomas Jefferson, Marquis de Lafayette, and members of the Lee family. She lived in this home until her death later in 1789.

This is Kenmore Plantation. Built in the 1770's, it was the home of Fielding and Betty Washington Lewis and is the only surviving structure from the 1,300-acre  plantation. Betty was the sister of George Washington. Mary Ball Washington (George's mom) is buried on the grounds.

During the American Civil War, the plantation house and outbuildings were used as a makeshift Union military hospital. In 1970 the property was declared a National Historic Landmark.

Apparently there are MANY of these "LOVE" signs around Virginia. After all, the slogan is "Virginia is for Lovers." In any case this is just one of the 150 LOVE signs in the State. We found one!!! 
The signs are meant for photo ops!

We had lunch at Foode. Can you see on the top left of this photo a bank vault???? The restaurant was once the National Bank of Fredericksburg. 

The National Bank of Fredericksburg, is a historic bank. It was built in 1819–20, and is a ​2 1⁄2-story, rectangular red-brick building in the Federal style. The front portion of the main floor had been used as a banking house since its construction, while the rooms at the rear and those on the second floor housed the bank's cashiers and their families from 1820 to 1920. In 2016, after completing renovations to the inside of the building, the building was converted into a restaurant while keeping the existing bank vault as a private dining area.

There are two tables inside the vault and you can see people are eating inside. It is actually much cooler, temperature wise, in the vault. While inside, you can see original pennies and safety deposit boxes. All neat, but too confining for me!

Friday, September 27, 2019

Friday, September 27, 2019

Tonight's picture was taken in September of 2007. Mattie was five years old and in kindergarten. That day he came home from school with this creation. Mattie participated in "construction club," an after school program. The club was run by Mattie's kindergarten teacher and the kids got to work with everyday household objects and create from their imagination. The kids used glue guns and all sorts of other tools in the creation process. Honestly I think this was where Mattie's love for cardboard boxes came from. Which was a God sent because while in the hospital, Mattie requested boxes. Though Mattie did not have the physical energy and capability to run around, he still had his manual dexterity and interest in building. It was a great way to pass the LONG days in-patient. 


Quote of the day: We can choose to be affected by the world or we can choose to affect the world. ~ Heidi Wills


Mattie Miracle launched a psychosocial research grant program in 2018, with both the Association of Pediatric Hematology/Oncology Nurses (APHON) and the American Psychosocial Oncology Society (APOS). We are committed to seeing the Psychosocial Standards of Care implemented and we knew funding implementation research would help to make this wish a reality. In addition, by housing our grants at professional associations, we are assured access to top quality clinicians and researchers in the psychosocial field. The associations have research committees that evaluate our grant requests, thereby making the award decisions fair and based on the rigor of the science. 

The grants program was so successful, that we have decided not only to continue it this year, but to also offer our current grantees continuation grants. So they can continue to expand the scope of their research project, if the objectives and deliverables will help us achieve our psychosocial mission... which on the national level is to provide children with cancer and their families access to optimal psychosocial care from the time of diagnosis, through treatment, into survivorship, or end of life and bereavement care. 

In 2018-2019, we funded $40,000 worth of research grants! Grants given to psycho-oncologists all over the Country. We created a promotional video in for the nursing association. Click on the picture to see it.  

Today we made the decision to offer our first continuation grant of $10,000 to Kim Canter. Kim was the first recipient of our early investigator award and we are honored we can continue to support her in 2019-2020. Kim is well on her way to developing an evidence based on-line support program for families, which would help meet two of our Standards of Care (assessment and supportive care for parents). 



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

Thursday, September 26, 2019

Thursday, September 26, 2019

Tonight's picture was taken on September 29, 2007. That weekend we took Mattie to the Swedish embassy, as they were having an open house with all sorts of kid activities. In front of the embassy, they placed this HUGE chair. Mattie climbed on top of it and I snapped this photo! Almost every day, Sunny and I walk passed this embassy. When we do, I always look up to their terraced area and remember this exact moment in time. 







Quote of the day: Every man's life ends the same way. It is only the details of how he lived and how he died that distinguish one man from another. ~ Ernest Hemingway


I received an email from a fellow cancer advocate today. She runs her own childhood cancer non-profit. We had the opportunity to meet her on Sunday at Curefest on the National Mall. She was intrigued by our Psychosocial Standards of Care, wants to learn more as well as share them with her Foundation's readers. Which is absolutely fantastic, because we need the advocacy community to be passionate about the Standards and to bring them back to their treatment sites, encouraging their adoption.

At Curefest, we have a brochure available for advocates to introduce them to the Standards and why they are important. Though we highlight the Standards on our Foundation's website, we did not have this brochure available on line. Well that is until today! I am so glad she brought this to my attention, because in 2020, we will be in the position of designing materials that will help advocates understand the Standards as well as provide them with a call to action as to what they can do to help with the implementation process.  

While working on our website today, I came across this video we posted back in 2015. It is three minutes long and features one of our core research team members, Dr. Andrea Patenaude (Dana-Farber Cancer Institute). We attended this world conference with Andrea, and while there she was interviewed. The association shared this video with us and I am so glad we have it on the record. Andrea was an intelligent, sensitive, and compassion professional and woman.  It is hard to believe she is no longer with us, as she died from cancer in January of 2018. We miss her greatly. She will always be listed as a legacy member of our core team!

The Standards in Andrea's words.......................
https://vimeo.com/135103105









Mattie Miracle's website and the Standards of Care:

https://www.mattiemiracle.com/standards


The Standards Brochure:

https://docs.wixstatic.com/ugd/27074d_6586dbd3a20a4080a05cba3a3a442ac4.pdf

Wednesday, September 25, 2019

Wednesday, September 25, 2019

Tonight's picture was taken in September of 2008. Mattie was in the outpatient clinic, and doing what he did best.... creating! Thank goodness there were art therapists, materials, and creative space in the clinic. This actually made going into clinic easier, because if it was just about the medicine, I am not sure we would have ever gotten Mattie through the doors of the hospital. 









Quote of the day: Listening is a magnetic and strange thing, a creative force. The friends who listen to us are the ones we move toward. When we are listened to, it creates us, makes us unfold and expand. ~ Karl A. Menniger


As tonight's quote points out, listening is an art form. In fact, I have found that when you listen to people, what this seems to elicit is further conversation. Today, I ran into an acquaintance I have known for many years. She knows about Mattie and I also know she is a breast cancer survivor. However, I hadn't seen her for over six months or more. Today I learned that after 11 years post diagnosis, she had a cancer recurrence. Her first recurrence and this time in her lymph nodes. She talked with me about how scared she is and how she had a false sense of complacency because she had been with no evidence of disease for over a decade. 

My friend had no symptoms, but thankfully goes for her mammogram every year and then also sees her surgeon. Her mammogram results were normal but when she visited her surgeon, the surgeon asked her to have an MRI. Literally the surgeon ordered the MRI for preventative reasons only. It was within the MRI that something was detected that required a biopsy. Which then confirmed cancer, leading to surgery and radiation. However, what if she didn't visit her surgeon each year? What if she just relied on the mammogram? 

I have experienced issues with mammograms for myself and despite this advanced 3-D technology, it can't always provide clarity like a sonogram or MRI. Of course I know why these other diagnostics aren't routinely provided.... they are NOT cost effective. Plain and simple. 

Just like many of the conversations I have with anyone diagnosed with cancer, our conversation today was VERY little about the medicine and MUCH MUCH MORE about the emotional and social impacts of cancer. When I mentioned to my friend that cancer is as much a psychological disease as a physical one, she paused, and then absolutely agreed. She says it takes a lot for her to stop her negative thinking and constant worries that swirl around in her head every day. I heard her, and I understand. Mattie maybe gone a decade now, but I remember what life was like when he was in treatment. Constant worries, constant fear, making life and death decisions under the worst of circumstances. It is an absolute mind game, and it takes great strength, courage, and determination to put these fears in a mental box, and find ways to function and thrive simultaneously. 

In any case, my friend felt like I heard her, understood her, and appreciated her feelings. I feel I can do this because I learned from the greatest teacher, Mattie. We learned from Mattie the impact cancer has on the patient and everyone around him. He also showed us the importance of psychosocial care and why it is imperative that we advocate for it. It isn't the popular advocacy platform, but from our perspective it is the one that can make the most difference in the day to day life of a person with cancer. 

Tuesday, September 24, 2019

Tuesday, September 24, 2019 -- Mattie died 521 weeks ago today.

Tonight's picture was taken in October of 2008. That week we took Mattie to NYC to be evaluated by doctors at Memorial Sloan Kettering. In between hospital visits, we tried to take Mattie on several adventures. To the natural history museum for example. Here we snapped a photo of us together in front of the museum. As you may surmise from Mattie's expression...... he was not happy!


Quote of the day: As soon as anyone starts telling you to be “realistic,” cross that person off your invitation list. ~ John Eliot


While at Curefest on Sunday, I mentioned we met many families who visited us under our Foundation tent. Typically at past events the parents we have spoken  to experienced the death of a child. This year was a bit different. Instead, we were visited by many families whose child is a survivor of cancer. Great no? Yes of course, but with survivorship comes a host of not only long term physical effects, but numerous psychosocial issues. Issues that not only lie with the child, but typically impact the whole family. 

What am I taking about? Well here is an example. One mom explained that her daughter was diagnosed at two years of age. While undergoing treatment, the treatment team advised the child's parents NOT to discipline her. In addition, with every procedure, scan, needle stick, or other unpleasantness, the child was given a toy or gift as a reward. I was absolutely tracking her, since Mattie received so many items in any given week at the hospital that after about a year of this, our home looked like a warehouse. In any case, now that the child is off treatment and older, she has become a behavioral problem at home and at school. The mom explained that her child is not used to be disciplined and therefore doesn't listen. In addition, the child expects a toy or prize with everything she does, and without these incentives will not comply with directions. The mom was exasperated by this, unsure how to manage the dynamics between siblings, and was concerned that this is also affecting her marriage. In essence she was telling me that every member of the household is traumatized and unable to function, come together, and move forward. Meanwhile the school wants to diagnose the child with ADHD, but the mom is quite sure this isn't the correct diagnosis. Instead, those in the community discount the role that cancer played in the development of these issues!

If I did not experience Mattie's cancer for myself, I probably would also assume that once medical treatment is over and you are deemed "cured," that this is a celebration! That things return back to normal, the way they used to be. However, I personally know this couldn't be further from the truth. Instead, as we say at Mattie Miracle..... the psychosocial issues do not end when the medical treatment does. 

In any case, the stories I heard have been rolling around in my head for two days now. I continue to be perplexed by the scarcity of mental health resources in the community for childhood cancer families. Sure there are therapists who specialize in trauma care, in helping people cope with life threatening and chronic illnesses, and the list goes on. Of course the big difference is that most therapists have little to NO experience working with childhood cancer survivors and their family members. Which is why so many families are floundering. They turn to the community for help and in many cases become frustrated and then disengage from therapists and from seeking help. 

So I spent time digging around national websites today to see if there were therapist referral networks that specialize in supporting cancer patients and their families. This is crucial, because parents contact me from all over the country, looking for mental health referrals. I would love to be able to direct them to a well researched database of qualified providers! However, to my knowledge no such comprehensive database exists. There is a great need, but putting together such a database is a major undertaking. None the less, I threw the thought out there to our core research group tonight, because either they will locate a resource and share it with me, or perhaps will even bring such an idea back to one of their institutions or professional associations. It is hard to believe that we live in the era of technology, and yet such an on-line referral network doesn't already exist. 

Monday, September 23, 2019

Monday, September 23, 2019

Tonight's picture was taken on September 7, 2008. To me this was classic Mattie! Our room felt as tiny as a shoe box for three people, yet regardless of size, we always had plenty of cardboard boxes on hand. In fact, Mattie's care team saved boxes that came into the hospital for him. I can't tell you how many box creations were created that year in the hospital. Cars, apartment buildings, homes.... all made out of cardboard!







Quote of the day: A single act of kindness throws out roots in all directions, and the roots spring up and make new trees. ~ Amelia Earhart


My lifetime friend send me the video clip below entitled, Ticket with no seat. Apparently it is making the social media rounds. I remember when I used to teach at the University, I would occasionally ask my students to create infomercials. Ways to educate their classmates about a topic, and to do so in an engaging and time effective manner. This video clip below reminds me of a class project. 

When I saw this video, my honest first reaction was.... why? Why do we need this video and this lesson in kindness! Don't people give up their seats for people with disabilities?! I guess the answer is NO! I attached an article below about the chaos caused on a Los Angeles bus because a woman wouldn't vacate the priority seat area for a man in a wheelchair. I wish I could say this story was an isolated incident. Just google "not giving up a seat on a bus" and you will be amazed by the quantity of stories! 

Absolutely amazing and yet absolutely horrific that now we have to TEACH and produce infomercials about common human decency! I think this says a great deal about our current society and I would have to say ask did this breakdown occur and why? But frankly in my opinion it has a lot to do with the "me" focus of our society. Where our own needs supersede those around us. The problem with all of this is we don't live on individualized islands, we live in a civilized society that has rules, laws, and a common code of decency that should to be upheld and valued. I am not sure these values can be taught in schools or should be. Instead, I have to wonder about how children are being raised at home and therefore how this translates down to what we are seeing in schools and in our communities.  

Video shows passengers on L.A. bus outraged by woman who refused to give up her seat for man in wheelchair:
https://www.yahoo.com/lifestyle/video-shows-passengers-l-bus-outraged-woman-refused-move-seat-man-wheelchair-214834639.html

Sunday, September 22, 2019

Sunday, September 22, 2019

Tonight's picture was taken in October of 2007. To me this is the quintessential photo of Mattie. We took Mattie to Butler's Orchard in Maryland that day to pick pumpkins for the fall season. Something Mattie loved doing! He loved everything from the hay wagon ride to picking pumpkins in the patch. When I sometimes wonder why I go to Curefest on the National Mall each year, I think of Mattie and it always gets me up and motivated. Motivated to share his memory and for others to be aware of his legacy. 


Quote of the day: We understand death only after it has placed its hands on someone we love. ~ Anne L. de Stael

It was an early morning for all of us, as we got to the mall around 8am. We had a whole trunk full of Foundation items with us and Sunny in tow. Each September, the childhood cancer community unites on the National Mall to have an awareness walk, vendor tents, and a program of speakers and musical acts. The event is called Curefest. 

Since we have participated in this event over the last 6 years, I practically have the set up and the quantity of items we need down to a science. Nonetheless, I try to mix it up each year and offer different items as well as different information. The attendance at this event are families who have a child diagnosed with cancer, or a child who has survived cancer, or bereaved parents like Peter and me. People from all over the country attend. 

After we set up this morning, Sunny and I took a selfie! Sunny wasn't thrilled with me today, as it was VERY HOT and humid. We brought snacks and water for him, but after 5.5 hours there, he was ready to get in the air conditioned car. 

The stage at Curefest, with the monuments all around us. 

Our friends Margy and Ken joined us under our Mattie Miracle tent. Since Margy worked in the childhood cancer space as a play therapist as well as ran a childhood cancer non-profit for twenty years, there were many families who came by to visit with her. 

Do you see Mattie on the memory wall? I wish I could say this was the extent of the wall. But this wall of children who died went one for at least 100 feet. While in our tent, we faced this wall. I am not sure what upset me more...... that all these children died, or the life long aftermath of these deaths on the surviving families. 

One of our researchers, Bob Noll, attended Curefest this year. He surprised us. Bob has been on the journey of creating Psychosocial Standards of Care with us since 2012. 

I am pictured with Casey and Linda. Both moms lost a child to cancer. This is my third year meeting Linda. Linda lives in upstate NY. When I first met her, her teenage son, Charlie, was alive. Charlie came into our tent three years ago and was interested in our work on the Psychosocial Standards of Care. Charlie was a teenager in treatment and felt his hospital wasn't meeting his needs or that of his fellow patients. So literally he took our Standards brochure back to his institution. He told them.... 'here is the scientific evidence, NOW do something for me and the other kids.' Linda let me know today that the institution listened to Charlie and there is now a psychosocial program devoted to helping families throughout the cancer journey. Linda comes to visit me each year and updates me. She thanks us and Mattie, and of course, I thank her and Charlie. We can create something, but it was Charlie who operationalized it at his hospital. Amazing story, no?

Me with Miriam. Miriam sits on the board of Momcology, a national non-profit dedicated to meeting the supportive care needs of moms (whose children have cancer). We have gotten to know the leaders of Momcology and we look forward to figuring out next steps together on promoting the Standards within the advocacy community.