Saturday, August 1, 2015

Saturday, August 1, 2015

Tonight's picture was taken in July of 2003. Mattie was 15 months old and as you can see was sitting on the couch with a book in hand. Mattie enjoyed looking at books and loved hearing stories told to him. The book he was holding was one of his favorites..... Goodnight Moon! In fact at one time Peter and I knew the words to the story by heart, because we read it so often upon request! 

Quote of the day: There are realities we all share, regardless of our nationality, language, or individual tastes. As we need food, so do we need emotional nourishment: love, kindness, appreciation, and support from others. We need to understand our environment and our relationship to it. We need to fulfill certain inner hungers: the need for happiness, for peace of mind -- for wisdom. ~ Swami Kriyananda

Peter and I packed up our exhibit booth at the IPOS/APOS World Congress of Psycho-Oncology today. We had this booth on display since Wednesday and when not in sessions or interacting with attendees, we were at the booth. We spoke to countless numbers of people from all over the Country, and some from around the World.

It is ironic because I really had the mindset that our National Psychosocial Standards of Care applied only to the United States. But after speaking to several psychologists from around the World, who live in comparable countries, they are excited by our standards because they wish to apply them to their own cancer sites and feel they will serve as excellent guidelines.  

This is our third year in a row hosting an exhibit booth at a national conference. Sometimes we have to encourage folks to take a free t-shirt at our table. This year, that wasn't an issue. I brought about 80 t-shirts with us to the event and I returned with ZERO! A psychologist from Nigeria fell in love with our shirts and she took about seven of them home to her family members. But this was a trend. The international folks loved the shirts! This is what caught me by surprise. I expected the International folks would not be interested in our shirts because this would be one more thing to pack in a suitcase! I was wrong!!!! Of course (which was NO surprise) the chocolate that we brought and had inside the colorful sand pails on our table, went like hot cakes. We brought many POUNDS of chocolate with us and you couldn't believe how people went through it! In fact, we inspired the other exhibitors around us to go out an buy candy for their tables! Candy is the NUMBER #1 draw and attraction of any exhibitor table! People come to talk to you because they want YOUR CANDY! After they take your candy, they feel compelled to talk! Naturally some people come to talk, just to talk. But for others candy is an excellent incentive! We met many wonderful people while standing by our table and this is always one of the highlights of coming to a national conference....... learning about what others do around the country to help children and their families with cancer!   

Friday, July 31, 2015

Friday, July 31, 2015

Tonight's picture was taken in July of 2003. Mattie was 15 months old and this was his first trip to the beach. What makes me laugh about this photo was the simple fact that we were right on the beach, but Mattie preferred playing with the hose and being on the deck. Mattie loved spraying down the deck, the chairs, and himself. That brought him great fun and laughter. Of course back then my thinking was we could have stayed home and he could have done the same thing! But I learned over time to get passed that thinking and to see that we had to expose Mattie to the beach and to new things slowly. Acceptance of things had to be on his terms always, not on ours. 


Quote of the day: Do you want to know who you are? Don't ask. Act! Action will delineate and define you. ~ Thomas Jefferson

Today was day 3 of the IPOS/APOS World Psycho-Oncology Congress. This morning's Plenary session was moderated by Cokie Roberts. I have met Ms. Roberts once before at the George Washington University. She came to moderate a panel for a professional women's group I was a member of back then. She is a very warm, friendly, and generous person with her time. She had no problem at all with our request for a photo, or the fact that we were going to post this photo on Facebook or Twitter. 

Ms. Roberts moderated a panel discussion on palliative care this morning that featured five medical doctors. Two of whom were from Europe and two were from the United States. The consistent message from both countries was that palliative care is very misunderstood, by both patients and practitioners. When one hears the term palliative care, what do you think of? The number one answer is most likely..... death! You think of end of life care. However, that isn't what palliative care is at all. 

Palliative care is specialized medical care for people with serious illnesses. It focuses on providing patients with relief from the symptoms (pain, restlessness, sleeping and breathing difficulties) and stress of a serious illness. The goal is to improve quality of life for both the patient and the family. Ideally palliative care is provided early on and integrated throughout one's care. It has nothing to do with having a terminal condition. 

It was a fascinating discussion and well moderated by Ms. Roberts. It was as if she knew the panelists all her life, and yet she just met them minutes before the presentation started. So she clearly has a gift for connecting with people, listening, and synthesizing information. 

Today was an historic day for the Foundation. Peter and I, along with our dream team of psycho-oncologists presented the National Psychosocial Standards of Care to an audience of around 150 people. This initiative began in 2012 with a Symposium on Capitol Hill. For a full history of the Project, please visit:  http://www.mattiemiracle.com/#!standards-of-care/c22ij


Thanks to the help of our board member and probono public policy guru, Brett Thompson, a wonderful press release went out today on this momentous occasion. The quotes from Congressman Michael McCaul (R-TX), Congressman Chris Van Hollen (D-MD), and Congresswoman Jackie Speier (D-CA) are very meaningful and deeply appreciated by the Foundation. 

http://www.prnewswire.com/news-releases/mattie-miracle-cancer-foundation-announces-completion-of-psychosocial-standards-of-care-for-children-with-cancer-300121766.html

Thursday, July 30, 2015

Thursday, July 30, 2015

Tonight's picture was taken in July of 2003. Mattie was 15 months old and exploring the Outer Banks of North Carolina with us for the first time. That day we took him to Corolla Light. Back then, we could take Mattie up the lighthouse stairs in a backpack. Of course that wouldn't be allowed today! As you can see Mattie was fascinated by the climb and was checking out the elevation! What you can't tell was it was super hot out and I am not sure how Peter managed this haul up the stairs with Mattie on his back. 


Quote of the day: What you do makes a difference, and you have to decide what kind of difference you want to make. ~ Jane Goodall

Last night while at the IPOS/APOS World Psycho-Oncology Conference we had the pleasure of meeting this wonderful troop of kid performers directed by Susan Alexander Thompson and Michael Axler. The troop belongs to the Take the Stage Performance Company (http://www.takethestageperformance.org/). One of the conference chairs who was planning this event asked me if I knew a talented community kid's group who could perform at the conference. Who came to mind was Susan's performance company. How do I know Susan? I know Susan through Brett! Who is Brett? Well Brett has been our pro bono lobbyist for Mattie Miracle since 2011. As I have gotten to know Brett over the years, he shared with me a little bit about what Susan does and her gift of working with children. I am so happy I remembered that fact! Susan's group was the perfect way to kick off this International conference.  

As you can see there were 15 girls performing. I wanted to take a photo of the group before they got on stage. Right before this photo, you need to understand the girls were scattered all over the place and chatting. But Susan and Michael (who I should tell you is a clinical psychologist who works with special needs children by day) asked the girls to gather for a photo. When she told them to smile, it was almost like an immediate response. There was NO fidgeting, no debating! They went into instant performance mode! I absolutely loved it! You could see their discipline to the art form. 

What was also lovely, was Susan and Michael told the girls about Peter, myself, and Mattie before they came to the opening ceremony. They also told them about the nature of the conference. So the girls clearly understood the conference's mission and cause. Needless to say these girls really made an impression on me and that was even before they performed.  

The girls sang three pieces to a FULL BALLROOM of attendees. They handled it like complete professionals, they did not seem nervous, and were absolutely engaging and inspiring. You almost wish every young person had this kind of musical experience! The first piece they sang was The Rainbow Connection. Which is one of my favorites! It always reminds me of Kermit the Frog. The second piece (which you can see the video of) was from the musical, Pippin: Everything has a Season---- https://youtu.be/08x5RLxe_h4

The third piece was something that Michael transposed on his own by combining three different musical numbers into one. Yet it worked and the piece was very meaningful. Some of the words were.... Nothing is easy out there on your own. You are never alone. 

This song had people in the audience in tears. I think it was the combination of energy from the girls and the lyrics. You can hear it for yourself:
https://youtu.be/-Ul4I9ubPDY

Wednesday, July 29, 2015

Wednesday, July 29, 2015

Tonight's picture was taken in July of 2003. Mattie was 15 months old. This was his first trip to the beach. We weren't sure how Mattie was going to react to the sand and surf, but looking back on this moment in time, his reaction makes perfect sense to me. Mattie did not like it at all! He was afraid of the water and did not like the feeling of the sand. Over the years, this changed and Mattie developed an affection for sand castle building. He could spend hours creating and digging on the beach and many times he and Peter would design structures that were so elaborate that other kids would want to join in on the fun. Which of course made parents very happy, because we were like an instant play zone for kids on the beach. 



Quote of the day: It is good to love many things, for therein lies the true strength, and whosoever loves much performs much, and can accomplish much, and what is done in love is well done. ~ Vincent van Gogh

In March, at the Institute of Medicine Conference on Comprehensive Cancer Care for Children and Their Families, I had the opportunity to hear Melinda Marchiano speak as well as meet her and her mom, Lee. Melinda (far right in the photo) is a Hodgkin's Lymphoma survivor. Melinda has a wonderful website that shares her story and the advocacy work that she is involved in throughout the year. What captured my attention about Melinda, besides the fact that she is a beautiful person on the outside, is that she has a very compassionate, inspiring, and endearing way of capturing her audience's attention. She was able to explain the psychosocial issues she experiences as a cancer survivor in an absolutely stirring manner. She did not sugar coat her message, but made it real and meaningful. In fact, here is the actual video (click on video) from the conference, if you wish to see what she had to say. 

In addition to being a survivor and an advocate. Melinda has also published her own book, Grace, a child's intimate journey through cancer and recovery. As you can learn from her website, "Melinda established her business, Happy Quail Publishing, in 2009 at the age of fifteen. Her reasons for starting her business were not usual. Melinda became CEO of Happy Quail so that she would be able to publish the story she had written while she was recovering from cancer– without the harsh editing of a big publishing house. Believing her story needed to remain intact in order to truly help others with cancer, Melinda’s Happy Quail published Grace in October 2009. This first edition won two 2010 International Book Awards."

Yesterday, Lee sent me an email because she is working on a project about "momcologists!" I have to admit I had never heard this title before, but apparently I am deemed one, and I wear the title proudly. A Momcologist is "a mom in the fight of her life, also posing as a doctor looking for treatments for her child with cancer. Warning: Do not get in her way." Lee is reaching out to moms who inspire her and the community. Specifically to tell our story about our child's diagnosis and from that experience what we have done to impact the world of childhood cancer. Each of us will be given ten pages to express ourselves and the goal is to bring awareness to childhood cancer and in a way to celebrate what a group of women have been able to endure and accomplish. I am very honored to be invited to be a part of this project. 

So I now have a new title....... I am a MOMCOLOGIST!

Tuesday, July 28, 2015

 Tuesday, July 28, 2015 -- Mattie died 307 weeks ago today. 

Tonight's picture was taken in April of 2009. I remember this moment as if it were yesterday. Mattie wanted to create an alligator. He had it in his mind that was what he needed to build. Except this wasn't from a kit and we did not have enough GREEN Lego pieces. That meant that Peter had to run to the Lego store and get all the supplies that Mattie needed to build what Mattie conceptualized. Of course that was hard to estimate, since Peter really had no idea what Mattie envisioned. As you can see, this was the final alligator project that Mattie and Peter created together. Mattie, with his usual sense of humor, put his hand in the alligator's mouth to show us how sharp his teeth were!

Quote of the day: There is strength in numbers. When the bricks stick together, great things can be accomplished. ~ Steve Klusmeyer (a quote about Legos)

I received two articles from friends today about LEGOs! One of the articles discusses how David Junge co-directed a documentary on Legos that is coming to movie theaters on July 31. I had no idea that Legos was headed to bankruptcy about a decade ago, but thankfully this family run business reinvented themselves and listened to the demands of their audience, they are now the LARGEST toy company in the world. Legos appeals not only to children, but they are loved by adults as well. 

The second article about a Lego prosthetic arm, that I attached below, truly caught my attention today. When I saw the child featured in the article/video, he reminded me a little bit of Mattie. Maybe it was his energy level, his whimsical smile, or his clear passion and joy of Legos. Either case, the engineer who is working on the design of such prosthetics had this to say, “There were many problems I was trying to understand. The negative perception that kids have of prosthetics; the focus that companies put on engineering and not on the human part of a child; the social isolation felt by kids because of their condition and how hard it can be for them to build strong self-esteem." 

I loved this quote because it speaks to this professional's level of empathy and understanding of the complexity of losing a limb. I would imagine that losing a limb at any age is devastating, but certainly for a child, it is incredibly scary and to have a prosthetic and seen as different are major psychosocial concerns. Concerns that this engineer wanted to learn more about and help children design arms they could feel good about, proud of, and empower them to use their creativity to help them regain use of functioning. All I know is when I watched this video, I watched it with Mattie in mind. I could just picture his reaction to a Lego prosthetic arm and it is hard to imagine that things that appear to just be "toys" are used for serious tools and medical resources today. 

Lego Brickumentary

http://www.cbsnews.com/news/beyond-the-brick-lego-documentary-offers-inside-look-number-one-toy-company/

The Lego prosthetic arm that children can create and hack themselves

http://www.theguardian.com/artanddesign/architecture-design-blog/2015/jul/22/lego-prosthetic-arm-that-kids-can-hack-themselves

Monday, July 27, 2015

Monday, July 27, 2015

Tonight's picture was taken in July of 2007. Mattie was playing with his Lincoln Logs and as was typical for Mattie he loved to include a car in his creations. Mattie built a place to park his car and as his big smile indicated, he was very happy with his final product. Mattie could spend a good portion of his day building and creating, and always pulled me into his play schemes. The irony was before I had Mattie I really did not like playing with Legos, blocks, logs, cars, or trains. But Mattie trained me well and all of this became second nature to me. I learned to understand the mindset of a little boy as well as how to engage such an active and inquisitive fellow. 


Quote of the day: When he shall die, Take him and cut him out in little stars, And he will make the face of heav'n so fine, That all the world will be in love with night,  And pay no worship to the garish sun. ~ William Shakespeare


I have been working all day on various things to get ready for the World Conference of Psycho-Oncology that Peter and I are attending this week in Washington, DC. In addition to presenting at a Symposium on Friday, we are also hosting an exhibit booth at the conference for three days. So I worked on pulling out all the materials for the booth and organizing them. It is a strategy to transport them effectively to the conference hotel, because typically I am used to shipping items to their destination. We have never done a local exhibit booth.

This evening, someone sent me these wonderful photos from the George Washington University. They are strings filled with praying cranes. I suspect there are 1000 cranes strung on these strings! I am not sure who sent these photos to me because they were sent to me through a phone number and not an email address. However, this is clearly someone who knows my attachment to the origami crane. 

When Mattie was battling cancer, my good friend Junko and her mom created 1000 praying cranes for Mattie. With each hospital admission, we traveled with their amazing creation of cranes, and the cranes hung over Mattie's bed at all times. Now, these cranes can be found in Mattie's bedroom hanging from the ceiling serving as a reminder to me of my friend's greatest wish..... Mattie's recovery. 

An ancient Japanese legend promises that anyone who folds a thousand origami cranes will be granted a wish by a crane, such as long life or recovery from illness or injury. The crane in Japan is one of the mystical or holy creatures (others include the dragon and the tortoise), and is said to live for a thousand years. The legend of the 1000 cranes was actually very touching and it involved a young child by the name of Sadako in Japan, who was the victim of the atomic bomb and developed Leukemia. Her story is very meaningful and has been inspiring people all over the world for generations to create origami cranes to support those undergoing challenges and illnesses. 

The Story about the Cranes

http://origamiancy.com/2009/11/origami-cranes/

Sunday, July 26, 2015

Sunday, July 26, 2015

Tonight's picture was taken in July of 2008. Mattie was diagnosed that month with cancer, yet this photo was taken before cancer came into our lives. To me Mattie looked like the picture of health. That weekend we took Mattie to the Kenilworth Aquatic Gardens in Washington, DC. We like to visit the gardens every July, because that is when the lotuses are in bloom. Notice in Mattie's left hand that he was carrying a toy car with him. That was not unusual. Typically Mattie had something in his hands, that he brought along with him for the adventure. 


Quote of the day: Unable are the loved to die. For love is immortality.  ~ Emily Dickinson

Today we went to visit the Kenilworth Aquatic Gardens. Though I have visited these Gardens many times before, I never knew the history of the Gardens or who created them. I did a little digging, and learned about Walter Shaw and his daughter, Helen. Thanks to both of them, we have these wonderful Gardens. Here is some history on them.......................................

On an already warm summer morning, Civil War veteran Walter Shaw and his young daughter, Helen, walked from their house to the pond Walter had cleaned out the year before. They were on a mission to check the newly planted water lilies. These wild water lilies had survived the trip from Walter's bachelor home in Maine to be planted at his new family home. After ten years of rentals, and relatives, the Shaws were in a home of their own, on 30 acres bought from Helen's maternal grandparents. Adjoining their property was a wetland, viewed as worthless, but suitable for the ice pond a previous resident had built, and it was here where Shaw had carefully planted his water lilies. The waxy flowers were fully open as Walter hurried to work. Helen, his daughter began her chores, checking the water lilies often to enjoy their delicate beauty before they closed in the summer heat.

Someday, the single pond and twelve hobby water lilies would blossom into their profitable joint business. Helen Shaw Fowler would become a world diplomat for water gardening. It would be training to lobby later with her brother and others to save her beloved garden home from a river improvement project. Living within sight of these ponds until she died, Helen witnessed her father's water lily hobby grow to the historic gardens you visit today.

Each July, people flock to the Aquatic Gardens to see the amazing Lotuses in bloom. 

Peter put his hand in the photo for scale. It really helps give context to the size of a Lotus leaf.

I like this photo because you can see the stages of a lotus. The lotus starts out as a bud (the lower right hand corner). Then the bud opens up into a beautiful flower. Once the flower petals fall off, you are left with this structure that looks like a shower head to me (which is shown in the middle of the photo). 

The glorious lotus blossom. 

We had two Great Blue Heron fly overs while we were there. Then of course this fellow parked himself for some photos!

The water lilies are just as stunning as the lotus. There are ponds and ponds of them. Most are white, but there is one pond of pink lilies that is absolutely stunning. 

More water lilies! I have a feeling Monet would have been right at home here. In fact, we saw someone painting at the Gardens today, and I have no doubt this artist was inspired by Monet. 

Peter captured this dragonfly on top of a lotus bud. It seemed like a Mattie moment to me.

Followed by a butterfly sighting

Beautiful cattails