Sunday, November 2, 2014

Sunday, November 2, 2014
Happy Fifth Anniversary Mattie Miracle!!!

Tonight's photo was taken in October of 2008. This was right after Mattie's first limb salvaging surgery. His right arm was bandaged up and he was in a wheelchair and managing pain! Yet this was also his potato chip phase! The funny part about Mattie was he wouldn't eat just any kind of chip, they had to be Utz potato chips. Which are more local chips. I remember one night Mattie demanding potato chips and honestly his situation was so dire that if he wanted just about anything we would have tried to deliver on it! Peter ran ALL over the hospital to every vending machine looking for these potato chips! He finally came back to the hospital room successful! It was like we won the lottery. We were all thrilled! It is ironic what can bring you happiness and joy when you are dealing with a life and death situation.


Quote of the day: Why have random acts of kindness when you can have intentional acts of good will? ~ David Wagner

I think tonight's quote applies to today!!! I had friends send me photos which seemed out of the blue to me but were VERY INTENTIONAL to them! My freshman college roommate, Leslie, and I have been friends for a very long time. She lives in Maryland and is a devoted Mattie Miracle supporter. In fact her whole family is! Leslie has been teaching her children the importance of supporting local charities and particularly charities who are transparent about their finances!!! Her daughter Faye, who is 14 years old, had a "Mitzvah Day" (usually referring to a charitable, beneficial act performed by another person) at her temple today! Faye selected Mattie Miracle for her Mitzvah project when she was preparing for her Bat Mitzvah, but her service to Mattie Miracle did not end there, as is evident in this photo! In just thirty minutes today, this is how much candy she collected for our candy drive from members of her temple community! Absolutely amazing and more is coming! Faye not only collects it but she and Leslie also sort it for me! This is a special gift and a true testament to a long standing friendship. 

My friend Carolyn, our Foundation Raffle Chair, sent a photo of what was going on in her dining room! Her children collected candy for our drive and they are sorting for me too! The sorting is such a gift to me because this alone can take me hours on my own. The fact that friends are taking this on makes me so happy. I know sorting is laborious but when we give the hospital candy in bulk to be stored for a long time, it really does need to be sorted. It stores better that way.  




Five years ago today Mattie Miracle was incorporated in the State of Virginia. Therefore today is officially our fifth anniversary. As such, it is wonderful to see what we have achieved in five short years! Here are our top ten facts about us!

1. Dedicated to addressing the psychosocial needs of children and families living with childhood cancer and developing a national psychosocial standard of care.

2. Educate health care providers and the community on the psychological impact of a childhood cancer diagnosis.

3. Ran the first ever psychosocial childhood cancer symposium on Capitol Hill.

4. Sponsored the first ever childhood cancer psychosocial think tank at the 

American Psychosocial Oncology Society Conference.

5. Contributed over $100,000 to Georgetown University Hospital to support psychosocial services since 2011.

6. Fund a monthly support group luncheon for pediatric nurses.

7. A founding contributor of a free hospital snack cart offered to in-patient pediatric families.

8. Supply over $10,000 worth of items to the free hospital snack cart a year.

9. Introduced legislation on Capitol Hill addressing the psychosocial needs of childhood cancer.

10. Sponsor an annual Awareness Walk & Family Festival.

This was a photo that was taken from the Mattie March in 2009! Mattie was alive and this event was held by our amazing support community. It was from this event that the Mattie Miracle Walk evolved. In this photo Mattie was surrounded by his cousins and his treatment team at Georgetown Hospital! This March was held to show Mattie how many people loved and supported him and it was a day that none of us will forget. Which maybe why each year when I attend our Foundation walk, others are there having a good time and running around, but I am instantly transported back to this day you see in this photo! 

This is a photo of Mattie and Bob Weiman, aka the Magic Man from the Mattie March. Bob is the head of the lower school at St. Stephen's and St. Agnes School. Bob worked diligently throughout Mattie's battle with cancer to teach him magic. Magic was therapeutic for Mattie and it provided him with skills that made him feel special and unique. Mattie enjoyed doing tricks in the hospital for his nurses and therapists and Peter and I will always be grateful to Bob for his generosity of time and devotion to Mattie and his continued support of us. 

During the Mattie March the school's baseball team came to greet Mattie before heading off campus to play a game. The coach and all the players touched fists with Mattie and gave him a signed ball! It turned out that the team won the game that day and they credited Mattie for their win!

This photo is posted in my kitchen! I have had it on display for years! This is Tricia and Mattie. Tricia was Mattie's nurse! Not just any nurse, Tricia is an extraordinary nurse. Highly competent, compassionate and knows how to advocate beautifully for a family. She helped us on many occasions with doctors and a few other nurses, in which she proved herself early on to me. In the first week of chemotherapy when Mattie told me he hated me and started to kick and hit me, she intervened and handled this like a champ. Not just like a nurse, but as a mom and true human being. Tricia did not only care for Mattie, but she cared for me and Peter as well. She is part of our story as we reflect on our 5th anniversary of what we have been through, what we have accomplished, and what we continue to evolve into. Some how I know Tricia is with us, supporting us along the way. 

Saturday, November 1, 2014

Saturday, November 1, 2014

Tonight's photo was taken on October 22 of 2008. This was two days after Mattie had his first limb salvaging surgery. Getting Mattie up from his bed, into his wheelchair, and transported into the child life playroom was a feat of grand proportion. Mattie had a drainage tube connected to his bandaged arm, he was on pain meds, and of course his IVs. But it was important for him to move his body and use his lungs and as you can see his entourage was with us to help encourage the healing process! Mattie was surrounded by Whitney and Lesley (Child Life Interns), Linda (Mattie's Child Life Specialist), and Jenny (Mattie's Art Therapist). They were an incredible team who made Mattie's existence more tolerable and humane!


Quote of the day: We live in a world in which we need to share responsibility. It’s easy to say, ‘It’s not my child, not my community, not my world, not my problem.’ Then there are those who see the need and respond. I consider those people my heroes. ~ Fred Rogers


This morning in between doing work and chores, I was listening to the radio and kept hearing an advertisement for the weekend edition of the Washington Post. Particularly an article about teaching college students about civility. I have to admit the ad caught my attention for many reasons, but mainly because I empathized with the professor who first off wanted his students to turn their attention AWAY from their cell phones while in his class in order to pay attention to what was being discussed. Though I haven't taught in a college classroom since Mattie was diagnosed with cancer, I can recall that cell phone problems were beginning to pop up even in my classroom in 2007! But the smart phone wasn't mass marketed then! Now I have no idea how a professor manages this obsession!?? After all college students are adults, you can't tell them to leave the phone in their lockers or you will call their parents!!! The consequences are different at the college level! You have to rationalize with such students in a different manner and if you don't, rest assured you and your students will have a very unpleasant semester.  

I included the article below from the Washington Post in case some of you want to read it. I found it intriguing. I am not sure I agree with it whole hardheartedly and I am not sure I would even encourage my own students to take on such assignments. Though I admire this professor's spirit for civility and embrace his desire to get students to see the power of community and helping others, I also think we have the responsibility as educators to teach students who are buried within the world of cyberspace how to protect themselves in the process. Naturally I haven't seen the syllabus for this class or the parameters of these two assignments, but I always worry about the safety of students. Sending them out on the streets to interact with strangers, though a great idea, has to have some guidelines and there needs to be some discussion around this within the classroom. Otherwise in essence it is throwing students into a foreign land and culture. They feel safe with their computers, smart phones, and their insulated circles of communication, however within the bigger world, in which they have to inter-face FACE TO FACE they maybe ill prepared. Exposing students to service learning and community service is a great idea, but the problem with this is if the experiences are negative or even indifferent, guess what? This doesn't inspire students to do more of it!!! This only reinforces them to stick their noses right back in front of a smart phone. Which they may do anyway, I realize. But shouldn't we set up assignments which could potentially set up and spark further interest!? That give students some positive feedback, so that they will want to do more?   

I am not sure what the answer is to these assignments, but I LOVE community service and service learning! I also love volunteering and I can tell you even I would have found this professor's two assignments daunting. Especially the eating with a stranger. Approaching a stranger and offering assistance, would have been challenging enough, but eating with someone you don't know to me is just inappropriate. This crosses a boundary line and honestly as a professor you do not know who your students will be meeting and getting involved in. To me this is a huge liability and one that I would not want to take on, especially as a licensed professional. If this were my course, I would modify this assignment immediately, so that the students were eating with a friend of a friend, or someone they did not know direct. 

Now putting all of that aside, the substance of what this professor is trying to do is spot on. He is trying to get his students to think beyond the hand held device they are glued to and have become dependent upon. To see that the world is comprised of real people and we are responsible for each other and the condition of the world we live in. I think when we actually experience helping others we do see the actual beauty and passion that comes from this, like no other joy that can be achieved in life. There is something truly wonderful about making a human connection and when we see others around us giving of themselves to make the world better for others who they do not even know, one needs to stand back in awe. Or as Fred Rogers would say.... they are our heroes! 


Teaching Civility: Two Daring Assignments
http://www.washingtonpost.com/lifestyle/magazine/teaching-civility-two-daring-assignments/2014/10/30/6c71682e-4b3c-11e4-a046-120a8a855cca_story.html

Friday, October 31, 2014

Friday, October 31, 2014

Tonight's picture was taken in October of 2008. Mattie was dressed as a mummy and trick or treating in the hospital. In fact Mattie went trick or treating twice that day. Once at the hospital and then in the evening with his friend Zachary, around Zachary's neighborhood. Though Mattie was smiling here, this day at the hospital was challenging for him. Hospital trick or treating is a BIG event. Mattie never did well with large productions, lots of people, noise, and congestion. So Mattie did shut down along the way emotionally and this was very difficult to watch and experience within a six year old. The story behind this costume was adorable and worth retelling. We were invited into the clinic a day or so ahead of time to look at costumes. Mattie's art therapists knew that Mattie really needed alone time to go through the costumes and make a decision without other kids around. Especially since Mattie just had his limb salvaging surgery a few weeks prior and his right arm was all bandaged. Mattie was very protective of his arm and gingerly walked around. Therefore if he had to compete with other well bodied kids for a costume it would never have worked out. Mattie would have probably shut down and sat right in a corner instead. Mattie's art therapists instinctually knew that. When Mattie looked through the costumes within the clinic (costumes are provided to children with cancer for free by the Hope for Henry Foundation) he immediately gravitated to the mummy costume. He seemed to know that he could hide his bandaged arm inside it and he was absolutely right!


Quote of the day: Nor should they be, but everyone needs to feel they're part of something worthwhile. That, in the last analysis, their life has some meaning in a larger context. The questions is what am I part of? What have I done? ~ Julian Fellowes

In honor of Mattie, I thought I would post some photos of him from Halloween of 2009, his last Halloween with us. This was Mattie with his buddy Jey. Jey considered Mattie his "little brother." In fact, on the day Mattie died, Jey came upstairs from the CT and radiology area to transport Mattie's body to the hospital morgue. He said that NO ONE ELSE was going to do this. When Mattie died, Jey said he could no longer do the work he was doing at the hospital and he left his position in the CT and radiology department. He still works in the hospital but not in the same capacity. Mattie's life affected him profoundly and as I tell Jey, his life affected ours as well! Jey is one of the people who made an enormous difference to my quality of life and about how I felt about being in the hospital. I felt like I mattered as a person, that someone cared about me and my son, and he is a person who simply cares about people. You can't train or pay someone to feel that way, it is just a part of Jey. 

Another person who was instrumental to my quality of life was Jenny. Jenny was Mattie's art therapist. Jenny worked diligently with Mattie on this amazing Haunted House! This house had ghosts and this wired witch. All sorts of things going on inside the house as well. Mattie gravitated to Jenny, as did I. Though always professional, I felt enormous empathy from Jenny and that I wasn't alone in my emotions, my confusion, my despair, and she helped to provide outlets of creativity, expression, and joy for Mattie. In addition, I have many of Mattie's wonderful creations all over my house which I am forever grateful for!

This was Mattie's creation of the Haunted Pumpkin! He designed a pumpkin and gave it a cape!

This is Whitney! Whitney is part of the dynamic duo as my mom used to call them. Whitney and Lesley were child life volunteers early on in Mattie's stay at the hospital. Mattie loved both of them. They were both extremely loving and nurturing. 

Me and Mattie!

My Mom and Mattie!

Pictured with Mattie was Sally the Story Time Lady! Sally is no longer at Georgetown Hospital but she is incredibly talented! Sally had a way of telling a story and capturing your mind, heart, and attention. Mattie LOVED Sally and usually wanted to participate in all of her antics!

I end tonight with a photo of Mattie with Brandon! Brandon was instrumental in our world! Though there was a significant age difference between these friends, it did not seem to matter. They both got something from the other and it worked. Mattie trusted Brandon and he felt Brandon understood him! We will always be grateful for their special bond. 

Thursday, October 30, 2014

Thursday, October 30, 2014

Tonight's picture was taken on Halloween of 2007. Mattie was 5 years old and desperately wanted to be an air force pilot that year. We took Mattie to Andrews Air Force Base that spring to an air show and he was intrigued by the whole show, the aircraft, and meeting several the military members in uniform. Of course when I took Mattie to the costume store the only thing resembling a military pilot outfit was this army uniform. But thanks to my friend Charlie, she sent me many Air Force patches, which helped to transform the look of the costume! I sewed the patches all over the uniform and our neighbor gave Mattie this adorable hat which most likely did not fit the Air Force theme but it seemed to complete the picture!


Quote of the day: Whatever you do, or dream you can, begin it. Boldness has genius and power and magic in it. ~ Goethe


I went to my zumba class today and our instructor surprised me at least with Halloween routines. I haven't gone to class for several sessions now because I have either not been feeling well or was at a conference. I can't even recall how many years I have been going to Jenny's class but this is the first year she added themed routines to her class. There was sometimes whimsical about it and having grown up around the time of Michael Jackson's Thriller video, it was a riot to try to integrate these steps into today's class

I had the opportunity to chat with my friends Heidi and Denise today. Though they both haven't lost a child to cancer, it doesn't mean that they can't grasp what I am dealing with. After interacting with them I felt differently and I had to ask myself why? The answer came down to the fact that they wanted to know how I felt and they asked questions. They did not dismiss me, talk over my feelings, or move onto their topics. Of course the key to all of this is interest and time. I have learned with grief and loss of a child that talking with a fellow bereaved parent is not always beneficial (or at least NOT for me), but I have never underestimated the power and beauty of a meaningful connection. A connection with another person who wants to listen, who makes the time for me, who asks questions, and really tries to imagine what it feels like to experience what I am expressing.   

Later on today I then spoke to my friend Toni on the phone. It has been the day of connecting with friends, which helps since Peter is away. Toni and I of course met when Mattie was diagnosed with cancer. Toni is Brandon's mom, and Brandon was Mattie's buddy! Though there is a 12 year age difference between the boys, they both had a way of making it work! Brandon was like a big brother to Mattie and Mattie really related to Brandon. He trusted him and felt Brandon understood him. I will always be grateful to Brandon and of course Toni and I both see many psychosocial issues in the same light! Toni called me today to let me know that she mailed me candy for the Foundation's candy drive! I was very touched by her kindness and no matter what she has going on in her life, she always remembers us in the Fall and Spring. This means a great deal to me, more than she probably knows.  

Wednesday, October 29, 2014

Wednesday, October 29, 2014

Tonight's picture was taken in October of 2006. If you have been following the blog for the past several nights, then you know I have shown you Halloween photos from 2002, 2003, and 2004 so far. Therefore, tonight's Halloween photo should be from 2005! However, on Halloween of 2005, Mattie was admitted to Virginia Hospital Center with sepsis from an ear infection. I will never forget that moment in time! I knew Mattie was getting ill two days before his admission, because I took him to see his pediatrician and told her I suspected he had an ear infection. She assured me Mattie was fine and in her usual patronizing tone dismissed me as an overly cautious and anxious parent. Well don't you know it, I read Mattie's signs and symptoms correctly! Because two days later he was vomiting profusely, spiked an incredibly high fever and he was so ill that he couldn't be managed at home. When his pediatrician examined him in the hospital, she could see he had a full blown ear infection that had spread throughout his system! From that moment on the dynamic changed between us. On future visits when I complained that Mattie had a symptom, I was taken seriously! In any case, in 2005, Mattie and I created this calico cat costume together. We bought this black sweat suit at Target and then went to AC Moore and bought felt and created calico spots and a black tail. Mattie loved our cat, Patches, and he wanted to look like her. However because he got so ill, he was NEVER able to wear his costume or go trick or treating in 2005. So I saved the costume and he wore it in 2006 instead. 


Quote of the day: If you reconnect with nature and the wilderness you will not only find the meaning of life, but you will experience what it means to be truly alive. ~ Sylvia Dolso


Though we just got back from Canada, Peter boarded a plane today for Boston. He will be there for the rest of the week. In comparison to his days working in developing nations, I have to imagine domestic travel is a whole lot easier. Nonetheless, travel in general is debilitating regardless. Especially when it is work related and it involves interfacing with people. Certainly when Mattie were alive and Peter traveled that added a whole other dimension of complexity to our lives. Now of course there is no Mattie and when either Peter or I go away, one of us is left alone. A single digit is never very strong alone. 

I was hoping to have a slower week after I came back from Canada, but apparently slow isn't in my lexicon. I have so much to catch up on and while doing those things today, I was contacted by the combined federal campaign (CFC) office about participating in a charity fair next week at the Department of Homeland Security. The CFC is the world's largest and most successful annual workplace charity campaign, with almost 200 CFC campaigns throughout the country and overseas raising millions of dollars each year. Pledges made by Federal civilian, postal and military donors during the campaign season (September 1st to December 15th) support eligible non-profit organizations that provide health and human service benefits throughout the world.

In any case, Mattie Miracle applies each year to be a CFC charity. However, you have to be selected to participate in these fairs. You can't just sign up and go! So this is our first time we are being invited to attend, and this will give us the opportunity to introduce the Foundation to federal employees who are completely unfamiliar with our Foundation and the work that we accomplish. 

I wasn't planning on this event, so it will take me a few days to get my materials and trinkets together to be prepared for next week's set up! But I felt like we couldn't pass on this opportunity especially since we have never been asked to do this before. 

Tuesday, October 28, 2014

Tuesday, October 28, 2014 -- Mattie died 268 weeks ago today.

Tonight's picture was taken in October of 2004. Everyone in my household LOVED Winnie the Pooh! In fact, when Peter and I went to college, our college president literally sounded like Winnie the Pooh. We joked about that often!!! When Mattie came into our lives, I happily introduced him to the wonderful world of Pooh and like many of us, he gravitated to the characters easily. Finding a costume for Mattie was always like looking for a treasure, because the trick was it had to be comfortable! It couldn't be restricting and he had to be able to easily move in it. Which was why I usually stuck with sweatsuit material. In any case, he made a memorable and rather adorable Pooh!


Quote of the day: One note is not music. It is what lies between the notes that makes the music. And what is between them is: their relationship. Relationships are the music life makes. Context creates meaning. Asking, "What is the meaning of life?" is the wrong question; it makes you look in the wrong places. The question is, "Where is the meaning in life?" The place to look is: between.” ~ Carl Safina


This morning I had the opportunity to visit Mattie's school to meet with his assistant head of school and the school's new head of school. Joan Holden, the school's former head retired in May. In fact, at our last Mattie Miracle Walk, we gave Joan a plaque and our thanks for supporting us for all these years. Joan allowed us access to her campus for the past five years to host the Walk. Which is a huge undertaking because that means access to tents, tables, all the facilities, grounds crew and the list goes on. The school doesn't charge us for any of our needs either which is beyond gracious. This enables us to make the most profit from the event and thereby directly help children with cancer and their families. 

However with Joan retiring, I really wasn't sure where this left the Foundation with regards to hosting Walks on the campus. I am very grateful to Bob Weiman, or as my faithful readers better know him as "the magic man" for arranging this meeting today, for helping us keep Mattie's memory alive and for introducing me to Kirsten Adams, the new head of school. Kirsten is just delightful and spent 50 minutes with me. She wanted to hear about Mattie, the Foundation, and our walks. I thought that was very thoughtful and generous of her and I feel we have the start of a wonderful connection. 

It is interesting as I was retelling our story to Kirsten, what amazes me is how vivid 2008 and 2009 will always be to me. These years have profoundly changed my life and the scars are very much internal, so you might not see the aftermath on casual glance at me. But they are there! When Mattie developed cancer, our lives became very public and in a way, people paid very close attention to us (though this wasn't something we necessarily asked for!). I do not want to say that our family had the same notoriety as Hollywood stars, but I would say we got massive amounts of attention from our community. That took a great deal of adjustment, given that we all led private lives and weren't used to having people popping in and out of our rooms at all hours, we weren't used to constant phone calls, and hundreds of emails! However, with the passing of Mattie and TIME, things did go back to NORMAL for people. But unfortunately NOT back to normal for us. The connections faded, the massive amounts of attention (the kind we did not want in the first place!) all disappeared, and we are left with memories. Wondering did it all happen? Did people forget? Because I know we are still grieving and yet the world seems to be revolving for everyone else around me!  

Monday, October 27, 2014

Monday, October 27, 2014

Tonight's picture was taken in October of 2003. Mattie was a year and a half old and this was the first Halloween in which he wore a costume. Mattie did not like clothes that really confined him or were scratchy or bothered him in any way. So this pumpkin sweat suit was the perfect solution. In fact, sweat suit material became the option of choice for years to come as you will see. To me, Mattie made the cutest pumpkin that year!


Quote of the day: A life of short duration...could be so rich in joy and love that it could contain more meaning than a life lasting eighty years. ~ Viktor E. Frankl

I remember learning about Viktor Frankl in graduate school and the incredible experiences he had surviving in concentration camps. It was perhaps through these experiences that he developed his very powerful and meaningful existential psychological theory and therapies. Yet it amazes me how some one can see and experience the worst of humanity and still through this within one's self find the hope, strength, and inspiration to help others through the misery. 

Frankl's quote, like so many of his words were truly beautiful. As if they were written about Mattie. Mattie only lived to age seven, yet in his short life, it was rich in joy and love. He gave Peter and me so much that apparently his life continues to inspire us to give back each day in his memory. 

This evening I received an email from Beth Parker at Fox 5 news. Beth has done several great stories for Mattie Miracle in the past, and we greatly appreciate her expertise and sensitivity in the coverage of human interest stories in our DC area. Beth wanted me to know that a follow up story was airing tonight about Mathias Giordano. Mathias is 13 years old and lives in Virginia. He is struggling with osteosarcoma, and is out of treatment options. Just like Mattie. Beth connected me with Mathias' family a few weeks ago. I am so thrilled to hear that Mathias' wish is on its way to becoming a reality. The wish is to have a license plate in the state of Virginia that promotes Childhood Cancer awareness. With great advocacy efforts, Mathias' family has secured 450 signed applications and these applications are now before the Richmond General Assembly. Check out Beth's wonderful story link below! May this bring Mathias and his family a ray of sunshine and hope, when I know the great sadness that is before them.

http://www.myfoxdc.com/Clip/10781394/va-specialty-license-plate-for-pediatric-cancer-receives-needed-signatures-for-application

Sunday, October 26, 2014

Sunday, October 26, 2014

Tonight's picture was taken in October of 2002. Mattie was six months old and this was his first Halloween. We did not dress Mattie up in a costume that year but I did prop him up by a big pumpkin. The pumpkin in a way was bigger than he was!  


Quote of the day: The human race is a monotonous affair. Most people spend the greatest part of their time working in order to live, and what little freedom remains so fills them with fear that they seek out any and every means to be rid of it. ~  Johann Wolfgang von Goeth


Goeth was very insightful. Many in our society live to work, rather than work to live. In some ways, I have seen this happen within my own life. Without Mattie, the work that I do has become my life. Mattie Miracle is my work, my child, and my family. Which can be problematic and all encompassing. When I read this tonight, it really spoke to me because despite when it was written, it transcends time and context. Context because I am sure Goeth did not have cancer in mind when making this statement. But cancer has a way of transforming a parent's life and in the process a parent can turn to different ways of coping to fill the void. One of my coping strategies has been non-stop work. Which can be exhausting for me and others around me. 

I received a text message today from my friend Maria. She alerted me to check our front desk! When we went downstairs to the front desk of our complex, Peter found this wonderful note and a whole lot of candy awaiting us!!!

Several of the staff members in our Complex are participating in our Post-Halloween Candy Drive that the Mattie Miracle Cancer Foundation is running this year. This is our fourth year in a row that we are hosting this drive and all the candy collected goes to the free snack cart that revolves around the floor of the Georgetown University Hospital. We are one of the founders of this cart and the primary supplier of this cart that offers free snacks to families who are caring for children with cancer and other life threatening illnesses within the hospital. 

We are very grateful to the generosity and kindness of our friends at Columbia Plaza and for their continued support for five years!!!

It was a crystal clear day today and from our window we could see our wonderful oak tree. I refer to this tree as "Mattie's tree." I call it Mattie's tree because in the spring, we would get leaves from this tree to feed Mattie's caterpillars. Mattie always brought home caterpillars from school, we would put them in jars, feed them, wait for them to spin their cocoons, and then a week later we would have a moth releasing ceremony on our deck. We had many such ceremonies. We learned quickly that tent moth caterpillars ONLY liked to eat oak leaves! Since Mattie was determined to keep these caterpillars alive and therefore I was his side kick in this endeavor, this oak tree means a lot to me.

Peter snapped some lovely flower photos today! I love the perspective of this pink geranium with Mattie's oak tree in the background. 

Mattie's paper whites are still blooming! We planted them around the time of Mattie's 5th anniversary, September 8th! 

Saturday, October 25, 2014

Saturday, October 25, 2014

Tonight's picture was taken in October of 2004. Mattie was invited to a Halloween party at the George Washington University that was being held by some of my students. My students invited children from the community to the event and treated the children to free books and then escorted them around campus for trick or treating. As you can see Mattie got a wonderful dog shaped balloon and also picked out a couple of books. He wanted me to read his Franklin the Turtle book to him on the spot and in our perspective he made a wonderful Winnie the Pooh that year!

Quote of the day: Listen to that little voice inside you. Sometimes it can whisper meaningful words of wisdom and make more sense than the deafening noise of opinions and judgments outside. ~ Roopleen

Peter and I have had a very LONG day commuting back home to Washington, DC! Try over seven hours!!! So I will be making this short. Our original direct flight from Toronto to DC was canceled and instead we were re-routed on a connecting flight through Philadelphia. However before packing up and boarding a plane, we had to present to an audience of professionals at 8am! The room we presented in was a huge ballroom and though this was the last day of the conference, people slowly started to fill up the room, despite the early hour!

The panel presentation we participated in from 8 to 9:30am today was entitled, "Quality of Life: A Need or a Luxury?" Each panelist covered a specific topic and covered personal experiences and research related to a sub-topic. The topics covered were:

• The utility of HRQL measurement in clinical practice
• Quality of life: the sixth vital sign
• The challenge of measuring quality of life during treatment with the implementation of a webportal
• Why quality of life guides the development of a the National Psychosocial Standard of Care for Childhood Cancer Project

Peter and I were invited to present on this panel by Martha Grootenhuis! Who lives and works in Amsterdam. Martha is one of the distinguished psychologists who serves on our National Psychosocial Standard of Care project and she wanted to highlight the standards at this International conference. Therefore Peter and I felt compelled to attend and support this endeavor.

Peter snapped this photo of me with two of our panel presenters this morning. Faith Gibson (in red) is a Clinical Professor of Children’s and Young People’s Cancer Care and she leads the Center for Nursing and Allied Health Research at the Great Ormond Street Hospital in London. Martha Grootenhuis  is the Head of Research and Co-Director of the Pediatric Psychology Department at Emma Children's Hospital, Amsterdam. Martha has attended each Mattie Miracle psychosocial think tank and has worked diligently on our standards project.

To my surprise, I got to meet Ulrika Kreicbergs (far left) today. Ulrika is the Chair of the Palliative Care for Children Program which was established in coordination between a non-profit called Ersta Diakoni (part of the Ersta Hospital in Sweden) and Ersta Skondal University.

In our power point slides, we cited research literature by Kreicbergs! In fact, in both book chapters that I wrote this summer, I cited research by Kreicbergs. I happen to like her research a lot, especially because her focus is on child loss and the impact of this loss on parents and their quality of life. There is a very special feeling to meeting a researcher in person, a person who I have only known through words and paper. It is wonderful to now be able to connect a face and person to a name! It makes her work much more real and tangible to me which is an added gift!
 

Clouds

Mattie Moon

Friday, October 24, 2014

Friday, October 24, 2014

Tonight's picture was taken in October of 2004. I will never forget this photo, EVER! I took this photo of Mattie at Butler's Orchard in Maryland on a field trip with his first preschool. The preschool was a nightmare, which was why there was no way I was going to let him go on a field trip without being one of the chaperones. It was a damp and rainy sort of day, yet we were out there in the pumpkin patch picking pumpkins! I snapped a photo of Mattie picking his pumpkin. The only good thing about this horrid school is it led me to Butler's Orchard. Which was a farm we took Mattie to often. In fact, our famous pumpkin photo of Mattie, that I posted below was also taken at Butler's Orchard! A photo I cherish!!!

Quote of the day: Not from my heart, for I have not forgotten. We are all the pieces of what we remember. We hold in ourselves the hopes and fears of those who love us. As long as there is love and memory, there is no true loss. ~ Cassandra Clare

Last night Peter and I were invited to join the International Confederation of Childhood Cancer Parent Organizations' (ICCCPO) reception dinner at the top of the CN Tower. The CN Tower is a total experience! I wasn't sure about going to this reception to be quite honest, but since we have been trapped in the conference hotel all the time, it is the one tourist thing we have done while in Toronto. So it was important we got out and saw this!

So what is this organization? Certainly their acronym is a pip and I notice no one pronounces it the same way either!!! ICCCPO's vision is to be recognized world-wide as the body representing families of children with cancer. ICCCPO wants to see a world where the issues faced by children with cancer and their families, both in the short and long-term, are understood by families, healthcare professionals  and the wider community to ensure that children receive the best possible care wherever they are in the world at the time of diagnosis and beyond.


The CN Tower was built in 1976 by Canadian National who wanted to demonstrate the strength of Canadian industry by building a tower taller than any other in the world. Building the CN Tower was a vast and ambitious project that involved 1,537 workers who worked 24 hours a day, five days a week for 40 months to completion. In 1995, the CN Tower was classified as one of the Seven Wonders of the Modern World by the American Society of Civil Engineers. The CN Tower shares this designation with the Itaipu Dam on the Brazil/Paraguay border, the Golden Gate Bridge in San Francisco, the Panama Canal, the Chunnel under the English Channel, the North Sea Protection Works off the European coast, and the Empire State Building. Each year, over 1.5 million people visit Canada’s National Tower!

This is the "360 Restaurant" where the reception was held! It literally revolved around the city! We made several revolutions while dining last night. But in order to get up to this restaurant, we first had to take an elevator up that SPACE NEEDLE, up 1500 feet in the air! For those of you who know me, you know I don't particularly like motion, heights and so forth. But I did it!

Upon exiting the elevator we were greeted by VERY LOUD Pipers! I happen to love bag pipes, but these fellows were so loud you couldn't hear anything. I felt like I was back in college and literally I couldn't talk to the person next to me and believe me parents of children with cancer or bereaved parents like to talk to one another. So many of us were SUPER frustrated during the cocktail reception. But we managed in between songs to get words in edge wise!

This was some of the views during dinner! 

Peter and I met David and Avshalom! They are both from Israel. They run an organization (Hayim DSSN for Children with Cancer in Israel) which grants the gift of flying a plane to children with cancer. Literally a child can be a pilot for the day! Can you imagine if Mattie were alive?! I have a feeling he would have absolutely LOVED this experience. David lost his daughter 21 years ago and Avshalom lost his son 21 years ago to Ewings Sarcoma, a type of bone cancer. Both men met at the hospital. Their children were treated at the same time and that is how they met! It may be 21 years ago, but it was very clear to me that honoring their children was at the heart of their mission. Also from interacting with many of these parents, though their grief may not be raw anymore, their journey as I suspected is a life long one. Of course only a small percentage of those represented last night lost children, the others were parents of survivors. 

This group I title the unofficial "osteo" survivors club. Pictured with Peter and me are Edith and Ben. Edith heads up an organization in Argentina (Fundacion Natali Dafne Flexer) and Ben heads up an organization in South Africa (Olives South Africa). Both are parents who lost a child to osteosarcoma. In fact, Ben is the dad I mentioned in Wednesday's blog posting who addressed us from the audience after our presentation and told us about the loss of his only child to multifocal osteosarcoma.

Peter has had to take one conference call after the other today for work back at home! At some point we have worked from a hotel lounge on the 43 floor! This is the view from that floor and I thought it was worth capturing for the blog!