Saturday, January 28, 2017

Saturday, January 28, 2017

Tonight's picture was taken in February of 2009. Mattie was home between hospital treatments and had constructed a model of a volcano. Of course the fun part about this volcano was that it erupted. Which for Mattie was probably as much fun to watch as molding the clay and creating the structure. Mattie was the king of hands on play and fortunately he was very good at building and fine motor activities because post-surgery Mattie's mobility was permanently curtailed. I think you can tell by looking at this photo how animated Mattie was about the pending eruption in our dining room! 


Quote of the day: Marriage must fight constantly against a monster which devours everything: routine. ~ Honoré de Balzac

This is NOT an atypical morning in our home. Sunny has a way of migrating onto our bed at 3am to seek attention. He eventually falls back to sleep, but...............

At 3am, Sunny goes to Peter's side. He somehow understands that I am NOT going to pay a bit of attention to him at that hour. He is one smart pooch. He eventually falls back asleep and by the time we are ready to get up...... this is the sight we see! He has a way of taking over a bed. Prior to getting Sunny, if someone said I would have a dog (and a big one at that) sleeping in our bed, I would have said.... NO WAY! But given that I know Sunny is on meds to prevent fleas and ticks and he is brushed every night and sprayed with a poochy dog spray to keep him clean and smelling fresh, I do not mind it so much. Not to mention that he is bathed every four weeks. It is a laborious process to keep Sunny clean, but he just loves being near us so it is worth it. 

Tonight's quote is very spot on. Life in general is about routines and chores, and it really takes a great deal of inner strength to break free from always working. Today I was going to do more work, and Peter literally stopped me and said we should go out. That break in routine seemed to perk me up.

When I came home and did some computer work, I turned around in my desk chair and found my Mattie Miracle staff sitting behind me!!!

Friday, January 27, 2017

Friday, January 27, 2017

Tonight's picture was taken in February of 2009. Mattie was surrounded by all of us in the middle of the hospital hallway! What was he doing?! Mattie was in the middle of a physical therapy appointment. The woman on the right is Anna, Mattie's physical therapist and the two women behind Mattie are Jessie (one of Mattie's art therapists) and Linda (Mattie's child life specialist). A therapy session with Mattie was anything but boring! It couldn't be, otherwise Mattie wouldn't have wanted to participate. To encourage Mattie to take a few steps with his walker, a conga line formed behind him. This intrigued him and motivated him to move. But movement for Mattie was laborious and with each step he became weaker and more exhausted. He may look chipper in this photo, but do not let that deceive you. Mattie couldn't walk more than a step or two and his wheelchair was always in tow. Yet despite the reality, look at the spirit! Mattie was VERY GOOD at getting people to join in the fun and antics. In fact, as we would go down the hallway, people would come out of their offices to see what the commotion was about. Some days we played ABBA music in the hallways while Mattie moved around, and Dancing Queen had a way of getting the whole floor moving. 


Quote of the day: If people knew how hard I worked to achieve my mastery, it wouldn't seem so wonderful after all. ~ Michelangelo

I found Michelangelo's quote today and as soon as I read it, I laughed. I laughed because to me it isn't possible to gaze up at the ceiling of the Sistine Chapel and think..... this looks easy to do and to complete. Michelangelo finished this ceiling of the Chapel within four years. Yet no matter what we imagine, we can't possibly understand the painstaking days and nights he spent painting, under difficult circumstances. Also when you paint on your back you don't have the same perspective as if you were standing up and moving away from your subject matter to evaluate it. 

Michelangelo is on a grand scale. My example of hard work is minutiae and yet his quote resonates with me. Planning this week's Roundtable was a mini feat in a way and when an event runs smoothly it doesn't happen by chance. This is something people do not seem to understand. Our audio recording professional wrote me an email after the Roundtable was over and wanted me to know that he tapes many meetings on the Hill, and ours was by far one of his favorites. He commented to me that the event was organized, well timed, and thoughtful. Not to mention that people were truly collaborating and working toward a common mission during the sessions. He felt the eight hour day flew by! It was all high compliments and I appreciated him taking the time to share his experiences. A friend of mine who is an event planner said to me that planning a 30 person event versus a 100 person event is about the same. I absolutely agree, because once you have two people in a room the coordination and work begins. So it wouldn't have mattered if the Roundtable had triple the attendance, the effort was indeed an effort! 

I am almost done process Roundtable bills and materials and am now transitioning over the Foundation Walk activities! It is never dull and there is never down time. 

Meanwhile, Sunny and I went out for a walk earlier today. He loves watching the geese along the water. Each day Sunny is getting more bold about approaching the birds. I entitle this photo.... Sunny versus the geese. We literally walked up to the geese in the background and as we approached each goose flew into the Potomac River. 

Thursday, January 26, 2017

Thursday, January 26, 2017

Tonight's picture was taken in February of  2009. I deem this photo as priceless. This was Mattie's physical therapy appointment, yet look whose exercising.... Me and Anna (Mattie's PT). Anna and I understood that to motivate Mattie, we had to give him some control at times and to direct us. If we complied with what he wanted us to do, this would inspire him to want to have a turn and to participate in the therapy process. I learned this trick early on when Mattie went for occupational therapy pre-cancer. If I participated, Mattie would always join in. He needed the camaraderie and to have a partner to test the waters first. 


Quote of the day: Character is what emerges from all the little things you were too busy to do yesterday, but did anyway. ~ Mignon McLaughlin


This morning I woke up and was ready to go right back into bed. But with Sunny around that isn't an option. I have to get myself together because mid-morning he becomes quite persistent for a walk. Mind you Peter walks him in the morning before going to work. So when all is said and done, Sunny gets four walks a day in the winter time. Which isn't bad! Today was about 57 degrees which sounds warm, but with whipping wind, I thought it was frigid and I was going to become airborne! 

Though I am not in the best of moods or with much energy, I managed to focus on updating the 'news' section of the Foundation website and writing a January newsletter for Mattie Miracle that will go out next week. I had a lot to sift through to accurately cover Tuesday's Roundtable. Yet despite all my work, Sunny seemed to understand that he needed to sit still and that I was busy. Which was greatly appreciated. But what I have noticed about Sunny is he is also an excellent watch dog. If he hears something outside he lands up barking and alerting me, and it isn't a soft bark. It is a bark that says...... I mean business. 

This evening while walking Sunny, he stopped in front of the embassy near us. He stopped to acknowledge a young woman standing outside. He literally went right up to her. He only does such bold moves if he deems you friendly and trustworthy. In any case, I told the young woman that Sunny is friendly. She bent down to pet Sunny and then told me about her dog over seas. She said her dog is the same coloring as Sunny and that he used to sleep with her. She misses her dog and really loved connecting with Sunny. Don't you just find Sunny fascinating? It is almost like he has a 6th sense about this woman! 

Wednesday, January 25, 2017

Wednesday, January 25, 2017

Tonight's picture was taken in February of 2009. Mattie was in the child life playroom and wasn't happy at all, as you can see. That day, one of my former students, Pam, came to visit us. It is a sad commentary to say that both Mattie and Pam are now dead. Though Pam was happy to see Mattie, Mattie wasn't in the mood for company or to be social. Nor did he like people taking my attention away from him. It was truly mission impossible for me to balance visitors. The challenging part was some visitors (I am not referring to Pam in this case), did not understand Mattie's feelings nor did they understand that I did not have the energy to listen to their lives and stories. They were living regular lives and I was dealing with life and death crises each day. I am quite sure that if I was the one who was sick, I would have tossed all visitors out of my life. But in Mattie's case, he was a child, and I understood that the community wanted to help and support him. I also figured at some point Mattie would have to reintegrate back into the community, so it was better not to shut people out. Of course it never truly dawned on me that Mattie would die within a year. 


Quote of the day: Laughter and tears are both responses to frustration and exhaustion. I myself prefer to laugh, since there is less cleaning do to do afterward. ~ Kurt Vonnegut


Today I found myself dealing with frustration. Don't ask me why! But I was. The roundtable maybe over, but requests for reimbursement from attendees is coming into me. Some of the reimbursement requests seem over the top to me. I would never ask a non-profit to pay certain things like food for myself, especially when we supplied food all day at the event. In the past, when the Foundation reimbursed people who work with us, I gave them a stipend. Meaning, I priced out the cost of their travel to an event and gave them a flat fee that contained some wiggle room for other small expenses. This time I did not do this because we had the good fortunate of having co-sponsorships which helped to cover a great deal of the expenses. Nonetheless, this kind of stuff sets me off.

I normally do not get wrapped up with TV stars who die, but today I learned that Mary Tyler Moore died, at the age of 80. I have a feeling Mary Tyler Moore influenced the lives of many women, given her progressive TV show that aired in the 1970's! Featuring a single woman in her thirties, working in a newsroom surrounded by men. At the very least, if you don't remember the show, you have to remember the theme song (Love is all around)! She was a very passionate person about two causes in particular, which also makes her noteworthy. 

Mary Tyler Moore was diagnosed with Type 1 diabetes at the age of 33. Which led her to be a diabetes advocate and the International Chairman of JDRF (formerly the Juvenile Diabetes Research Foundation). In this role, she used her celebrity to help raise funds and awareness of diabetes mellitus type 1.


She was also a long-time animal rights activist, Moore worked with Farm Sanctuary to raise awareness about the process involved in factory farming and to promote compassionate treatment of farm animals. She was also a co-founder of Broadway Barks, an annual animal adopt-a-thon held in New York City. Moore and friend Bernadette Peters worked to make it a no-kill city and to encourage adopting animals from shelters.

I attached this wonderful link featuring the shows theme song and some great snippets. Practically everyone on the Mary Tyler Moore show had notoriety. Which also contributed to the memorable nature of the show. 

https://www.youtube.com/watch?v=VsFT1-4ibkU

Tuesday, January 24, 2017

Tuesday, January 24, 2017 --- Mattie died 384 weeks ago today. 

Tonight's picture was taken in January of 2009. Mattie was home between treatments and what I loved about this photo was it captured the beauty and creativity of Mattie. Mattie received something in a Styrofoam container, and as you can see Mattie then got creative and turned the container into a pretend bicycle helmet with colorful duct tape. With Mattie there were possibilities in everything!







Quote of the day: Let me tell you the secret that has led me to my goals: my strength lies solely in my tenacity. ~ Louis Pasteur

I am SO glad that we had Herman, our Foundation photographer on hand today because it is very hard to capture all aspects of the day and to do it well. This was our group photo right before lunch. We did have thirty people in attendance, but with people bouncing in and out, we did not get all of them in this photo. 



This was today's agenda:

Check-in & Continental Breakfast                                                                                                
8:00–8:30am

Welcome Remarks, Introductions, & Objectives                                                                       

8:30- 8:45am                                                                                                                                                   

TOPIC 1: OUTCOMES
8:45 –9:45am

·        Pam Hinds, Ph.D., RN, FAAN (Director, Nursing Research and

Quality Outcomes at Children's National Medical Center)

·        Lori Wiener, Ph.D., DCSW (Co-Director, Behavioral Health Core

Head, Psychosocial Support and Research Program at NCI)

BREAK                                                                                                                                                     
9:45–10:00am

TOPIC 2: LEGISLATIVE/POLICY                                                

10:00–10:45am

·        Kevin Mathis, J.D. (Senior Legislative Counsel at St. Baldrick's

Foundation)

·        David Pugach, J.D. (VP of Federal Relations for the

American Cancer Society Cancer Action Network)

TOPIC 3:  RESOURCING                                                                                                                      10:45-11:45am

·        Anne Kazak, Ph.D., ABPP (Co-Director of the Nemours

Center for Healthcare Delivery Science)

GROUP PHOTO & LUNCH                                                         
11:45–12:45pm

·        Remarks from Reps. McCaul & Speier @12:30pm

TOPIC 4:  REIMBURSEMENT
12:45–1:45pm

·        Patricia Martin, RN, BSN (Director of Specialty Network Management

For Payment Innovation at Anthem)

TOPIC 5: ACCREDITATION                               

1:45–2:45pm

·        Lynne Wagner, Ph.D. (Professor, Social Sciences &

Health Policy Comprehensive Cancer Center at Wake Forest

School of Medicine)

BREAK                                                                                                                                           
2:45-3:00pm                                                                                                                                                                                                                                                                                                    

TOPIC 6:  DELIVERY MODELS                                                                                                       

3:00–4:00pm

·        Nina Muriel, MD, MPH (Chief, Division of Pediatric

Psychosocial Oncology, Department of Psychosocial

Oncology and Palliative Care, Dana-Farber Cancer Institute)

·        Amanda Thompson, Ph.D. (Pediatric Psychologist and Director

of Patient Support Services in the Center for Cancer and

Blood Disorders at National Children's Medical Center)

Closing Remarks                                                                                                                                  4:00pm

One of the sessions was run by a payor, Anthem. We have been very lucky to have connected with Pat at Anthem. She has pulled in many scientists within her health insurance agency and they stand behind the psychosocial standards. She shared with us MANY great surprises with regard to Anthem's position on the standards and next steps they would like to take. I can't officially report them yet, but let me say we are thrilled. 

This is Todd Schuerhoff. Todd is a consultant at Dominion Consulting. Todd and Peter knew each other when they both worked at Arthur Andersen Consulting. Dominion is our largest corporate sponsor and has been so since 2011. Dominion was kind enough to give us the expertise of two of their consultants today to help facilitate the roundtable. 

This is Joe Costello, our second consultant from Dominion and again Peter and Joe worked together at Arthur Andersen Consulting. 

Pictured with Peter is Lori. Lori has been the leader of the psychosocial standards project since 2012. Lori works at the National Cancer Institute and is about my height. She maybe short, but she is powerful and what I learned is it is hard to say no to Lori. She is pleasantly persistent, works intensely, and is greatly respected. As we say to Lori all the time, if it weren't for her management of the project, the Standards would never have been published. She ran an enormous undertaking with over 80 health care professionals. 

Pictured here in blue is Anne Kazak (Nemours Children's Health System, DE) and next to her is Amanda Thompson (Children's National Health System in DC). Both are chapter contributors of the Psychosocial Standards. The funny story is I reached out to Anne in 2010, through an email. I read some of her research articles about childhood cancer and trauma. They resonated with me so I wrote to her. Never thinking she would be the person to respond back! When we did our first symposium on Capitol Hill in 2012, Anne was our scientific chair of the event. 

Pictured here are Mary Jo Kupst and Nina Muriel. Both are members of our core implementation team. Mary Jo is from the Medical College of Wisconsin and Nina is from Dana-Farber Cancer Institute. 

This is Pat Martin from Anthem! Everyone loved Pat today and the investment she is making into understanding and using the standards. 

This is Lynne Wagner from Wake Forest Medical School. Lynne was instrumental in embedding a psychosocial standard of care within the Commission on Cancer hospital accreditation process. The standard in question is applicable for adult oncology, but we are trying to understand what she did to determine if this can be done for pediatrics and our standards. 

We had Peter Adamson in attendance as well. Peter is the chair of the Children's Oncology Group. The Children’s Oncology Group (COG), a National Cancer Institute supported clinical trials group, is the world’s largest organization devoted exclusively to childhood and adolescent cancer research. The COG unites more than 9,000 experts in childhood cancer at more than 200 leading children’s hospitals, universities, and cancer centers across North America, Australia, New Zealand, and Europe in the fight against childhood cancer. Today, more than 90% of 14,000 children and adolescents diagnosed with cancer each year in the United States are cared for at Children’s Oncology Group member institutions. 

This is Patrice, the head of child life at Johns Hopkins Medical Center. We feel it is very important to have all the psychosocial disciplines present at the table and Patrice adds an important lens and insights.  

After lunch we acknowledged legislators. You can see my scripts for these awards in Saturday's blog posting. Pictured with us is Rep. Mike McCaul. 

Pictured with us was Rep. Jackie Speier. 

Pictured with us is the legislative aide from Senator Van Hollen's office, accepting the award on his behalf. 

Isn't this photo adorable? Herman did a great job capturing the moment. Rep. Speier is very engaging, super easy to talk to, and personal. 

Talking with Rep. McCaul in the hallway.













Rep. McCaul's staffer captured this video of him accepting his Childhood Cancer Champion plague:

https://www.facebook.com/michaeltmccaul/videos/10154949818589860/

Monday, January 23, 2017

Monday, January 23, 2017

Tonight's picture was taken in January of 2009. We were in NYC to start Mattie's experimental treatment at Memorial Sloan Kettering and thanks to Mattie's art therapist, she secured us tickets to the Lion King on Broadway. Along with back stage passes to meet the cast. This particular cast member was truly lovely with Mattie and all of us. Not pictured, but was with us, was my lifetime friend Karen and one of Mattie's babysitters who lived in NYC. Karen was our support system when we came up from treatment in NY, and one thing was for sure, we always needed a lot of support. 


Quote of the day: The people who get on in this world are the people who get up and look for the circumstances they want, and, if they can’t find them, make them.
 ~ George Bernard Shaw

This morning our press release through Business Wire was released on the internet. You can see it by clicking on the link below. I know this may look easy, but I can assure you EVERY aspect of getting this press release done was a pip! Not only did we have to write it, but to get quotes from congressional offices is a process, and not a one step process either!!! The press release highlights messages from all our co-sponsors of the Roundtable, which was important to us.  

http://www.businesswire.com/news/home/20170123005139/en/Policy-Roundtable-Held-Psychosocial-Standards-Care-Children


I honestly do not know how many more days left I could manage. I am wiped out from planning this Roundtable. The logistics were HEAVY. Not only is there coordination of people presenting, making hotel arrangements, date of the event arrangements, but then on top of that there are rules and regulations of doing an event on Capitol Hill. I admit to having issues with such rules when I feel it will impact my event. I will give you a case in point. At our Roundtable many of the speakers are using PowerPoint slides. I asked numerous people on the Hill about how these slides would be displayed in the room. They explained that all I needed to do was hook up my computer to their system and it displays on a TV screen in the front of the room. Given that they know their space, I made the assumption that the TV screen was large enough, so that the room could see what is was on display. Somehow my not trusting nature paid off because over the weekend I searched high and low on-line to find an actual photo of the room. I was able to find a youtube of it and when I did I was shocked to see a TV screen that in all really isn't much bigger than my computer screen. I literally lost it because we can't build presentations and dialogues around information NO ONE can see. So I asked Peter to track down a projector at his place of work for us to take to the Hill. I had to do this because the staffers weren't sure whether they could accommodate my request at the tenth hour (typically they need much more advanced notice). Mind you it is the tenth hour because no one mentioned that the size of the TV is really too small for the room. 

That was one of today's fun jobs, the other fun involved getting information on getting access into the building to set up for the event. The building doesn't open to the public early enough for us to get there to set up for the event. So we needed special accommodations to get in through their 24 hour entrance. But getting in means entering in at a completely different building and then going through their underground catacombs to get to the Roundtable building. Again this wouldn't be bad if we weren't carrying anything. But we have bags of materials, a laptop, a projector, a large collapsible promotional screen about Mattie Miracle, and the list goes on! Mind you large carts to carry things are also not allowed in the building. All I know is I am ready for this event to be over from a logistical standpoint. I am signing off but hopefully I will have positive news to report tomorrow night!  

Sunday, January 22, 2017

Sunday, January 22, 2017

Tonight's picture was taken in January of 2009. I remember this day distinctly! Mattie had to endure a VERY long bone scan. He had to fast from the night before and by mid-day the next day, I thought Mattie was going to lose it. What kept him motivated was Linda (his child life specialist, you see here) promised him that he could go out to a special lunch with all of us, if he managed through the scan. On the hospital campus is a restaurant that has a section with tatami tables that will grill food right in front of you. That sounded very good to Mattie and as you can see he had a good time and actually ate up a storm! Mattie loved shrimp, which is why I used to call him my "shrimp man," and he ate plenty of it at that lunch. 

But it wasn't an easy morning for scans. What should have only taken a hour, landed up taking about four! I was getting very anxious and worried because the tech kept taking and re-taking images. So finally Linda tracked down the radiologist in charge and I got to speak to him. The reason he kept ordering more scans was because he thought Mattie's cancer had spread. As it turned out fortunately we consulted with each other, because he needed extra information about Mattie's prosthetics to realize that it wasn't cancer but scar tissue from the prosthetics. Which is another great example of what parents must be part of the treatment team at all times. 


Quote of the day: Don’t ask yourself what the world needs; ask yourself what makes you come alive. And then go and do that. Because what the world needs is people who are alive. ~ Howard Thurman

This is the sight I woke up to this morning! Sunny has a way of waking us both up and taking over more than a 1/3 of the bed.  

I am happy to finally report that our Roundtable program book is done and printed for attendees. I have been working on this book for WEEKS! It is 22 pages long, but here are what a few of the pages look like.

On this page, I give a visual history of the Psychosocial Standards project from 2012 to present. It is amazing to think that in 2012 we organized a Psychosocial Symposium on Capitol Hill in which we charged the research community to develop evidence based standards of care. From that symposium, we then held two think tanks (in Huntington Beach, CA and Tampa, FL), had monthly phone calls, had outside reviewers and reviewed close to 1,300 articles to develop the 15 standards of care. By the time it was all said and done, over 80 health care providers from the US, Canada, and the Netherlands took part in this historic project. 

On this page, I provide an overview of the project's Timeline, that details some of the methodology for creating the Standards.  

This page details all the Standards. Mind you if you should want to read the history of this process and look at the Standards, you just have to go to Mattie Miracle's webpage: www.mattiemiracle.com/standards. Mattie Miracle paid for OPEN ACCESS to these standards, which means that you do not need to be a member of the journal's association to access them. 

This page lists the ten professional organizations that have endorsed the Standards to date. 

While working this evening, I have my buddy with me. He is never far. He is my constant companion and he loves to spend time in Mattie's room. As you can see he has taken over Mattie's bed!