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!

Thursday, October 23, 2014

Thursday, October 23, 2014

Tonight's picture was taken in October of 2004. Mattie and I posed by a pumpkin cut out at one of the fall festivals we took him to that weekend. Our weekends back then were busy. We always tried to keep Mattie occupied, engaged, and outside. Outside was KEY to Mattie's happiness. He really thrived on open space and fresh air. The irony is after spending time raising him, he conditioned me to needing the same thing! In the background of this photo, I can see big cut out displays of Dora the Explorer, Boots, and Blues Clues. All characters Mattie loved to watch on TV and to read about in books. I remember how excited he was to see all these sightings that day and of course seeing the familiar encourages the child to want to engage in the activity attached to the picture!


Quote of the day: At first, the drudgery of mastering your craft is a prison—boring, slow, and with an awareness of how much time you’ll have to put in. But somewhere along your prison sentence, you come to see the time you put into your work not as dull and meager, but as meaningful—and you realize that your prison has become your palace, your place of escape. ~ Jarod Kintz



This is an enormous conference! In addition to being enormous there are too many professional groups mixed in with each other. If these groups mingled I suppose that would work out okay, but like ALL groups, they turn inwards and stay within their own enclaves! So doctors stay with doctors, parents with parents, and mental health providers with themselves. Unfortunately in a hospital setting we all have to work together! Which is why training opportunities really should in a way give us a way to hear and learn from one another. But it doesn't work out that way! FOR many reasons, which I won't elaborate on here! 


Mid-day, Peter and I went walking around the exhibit hall. For such an enormous conference, I was actually stunned to see the lack of exhibitors in the hall. I am used to counseling conferences in which there are so many exhibitors, with booths for as far as the eye can see. NOT here!!! As we were walking around, I was hit by this scene!!!! I use the word HIT in shock!!! The scientific name maybe mifamurtide or Mepact, but in our day we called the drug MTP-PE. This was a form of immunotherapy that Mattie started at Memorial Sloan Kettering in January of 2009. This drug is used for metastatic osteosarcoma children. When I saw this display with ALL the faces of the children on it, I wanted to scream. Clearly they were promoting this drug as effective and saving the lives of every child on display! But of course it did not save Mattie. In my book, it only made him sicker. In fact, with every administration, he got intense fever and chills. I saw NO benefits to it! Of course scientifically one could say Mattie would have died with MTP-PE or without it, which is most likely true. But as Mattie's mom, this drug served no purpose and seeing it today incensed me, as did hearing their reps talking about it with people!

We then went to see several of the psychosocial poster sessions. There were hundreds of posters on display. But the psychosocial presentations and posters are what we truly gravitate to. Clearly treating childhood cancer is of importance in the overall picture, but to me this is a long time endeavor with no end in sight. Whereas psychosocial support is something tangible, it is something that children and families need NOW, each day, into the future, and they are skills and support which can be directly provided now. Not something that has to be magically hoped for and created or promised in some distant future! Putting that all aside, the reality is that childhood cancer has devastating psychological effects on a child and the family and support has to be provided in order for the medical treatment to actually be effective. 

Two posters which resonated with me are below. We always hear about the impact of childhood cancer on a marital relationship, but this poster below intrigued me. Mainly because instead of the typical judgmental lecture or advice that can sometimes be dished out by support staff, this poster assessed feedback from parents directly. In reality the research is all over the place. Childhood cancer can affect a marriage and at the same time it can strengthen a marriage! Well these are two opposite and opposing statements! It can't do both, or can it?! 

The second poster talks about the existential challenges of childhood cancer for children and the benefits of creative therapy. I saw this first hand with Mattie. When Peter and I saw this poster, it caught our attention immediately!!! It reminded us of Mattie.

This study investigated the effects of childhood cancer on the parents' relationship. Some past studies report that childhood cancer can have a negative effect on the relationship and others that it can even strengthen it. Though it may not ever be known whether or not the relationship suffers or strengthens as a result. What is little understood is how the cancer experience affects the relationship between the parents and what might health care professionals do to support the relationship. The state of the relationship prior to cancer had, in many situations, important implications on how the relationship fared during and after the cancer experience. This cannot be the only predictor however, as some challenged relationships thrived and repaired as a result of the experience. The strongest finding in this study is that the relationship can be affected in intense ways, even to the surprise of the couples and they offered advice to other couples facing this experience. The participants also had advice to offer health care professionals about things that are helpful and not helpful to say and do regarding supporting them as a couple. The relationship between the parents has profound effects on the health and well being of the child and any support that can be offered in this area is preventative healthcare.

To date, there has been minimal research that details the experience of children diagnosed with cancer in their existential predicament. The purpose of this poster was to describe findings that speak to the existential challenges experienced by children living with cancer. Within the cancer world children moved between feelings of anxiety (generated by existential worry, existential longing, and the existential vacuum) and existential growth. As children worked within the drawing tool, a portal to their inner worlds was opened, which allowed them to explore their anxiety through drawings. In many of the children's drawings the intimate connection between the physical symptoms and the emotions that defined their existential challenges were clearly evident. Connection between the physical symptoms and the emotions that defined their existential challenges were clearly evident. This research provides evidence that the active engagement of children's imaginations through the use of a computer-drawing tool may have significant therapeutic value for assisting children with cancer to explore, understand, and manage their physical suffering, as well as the associated anxiety they live with. The use of symbolic forms of communication including drawing, offer health-care professionals new possibilities for enhancing the therapeutic conversations and interactions they have with ill children and their families.

Wednesday, October 22, 2014

Wednesday, October 22, 2014

Tonight's picture was taken in October of 2004. Mattie was two and a half years old and this was his first year going to fall festivals. Actually it was also a FIRST for Peter and me!!! There were NO such things as these massive fall festivals when we were growing up. When I say a fall festival I mean an event that is open to the public and runs for more than a month in one location. This event can consist of large slides, hay wagon rides, moon bounces, other rides and activities and corn mazes. If you want to see a link to a local farm that has everything possible that one could want to do, go to: http://www.coxfarms.com/attractions.aspx. They even have something after hours for adults that looks like it would be the perfect Halloween treat for the brave of heart and spirit. In 2004, when Mattie first went to these fall festivals, he was intimidated by these HUGE slides. As was I! Mattie always had a fear of slides, but with Peter's help, Mattie bravely went down them. As Mattie got older and with each subsequent year we brought him back to the festivals, he eventually went down these slides ALL BY HIMSELF!


Quote of the day: Find what is meaningful to you and stand by it. Even if you begin to wonder if there is any meaning to anything, continue to be yourself. ~ Jay Woodman


Peter and I had a full day today! It started with us being locked out of room! We had been having trouble with our room keys since last night but the hotel kept insisting that it was us who did not know how to use the keys properly! By this morning I had just about had it! I had security up at our door and hotel management. By the time they assessed it, they agreed with us! The problem was significant and we needed a new room! So that meant we had to pack up all our items and move later in the day because this 1300 room hotel was fully booked and couldn't accommodate us into another room until after 3pm! The timing of this was really rotten because we missed a good portion of the morning events. 

Our entire 1300 room hotel is fully booked for this conference!!! This is a very unique conference because multiple disciplines are meeting at the same time. So literally it is like three conferences are taking place at ONE time. One track is geared for parents and survivors of childhood cancer, another track is geared for medical doctors, and the final track is geared for psychological professionals. Peter and I juggled back and forth today between the parent track and the psychological track! The main issue I am having is ALL the sessions are 15 minutes long. My brain doesn't absorb anything in this time frame and if that wasn't bad enough everything was back to back. So right after one 15 minute session was another and so it was hard to process what you just hard, much less ask a meaningful question. 

This afternoon, we addressed the audience of international parents. There were about 150 parents. Our topic was "When tragedy inspires hope: A parents' call to action to create a psychosocial standard of care for childhood cancer." Our presentation was well received and parents really appreciated our voice and our desire to advocate for psychosocial care. Keep in mind that this is an international audience and we are advocating on a national level. But they did not take issue with this! They saw the merit in the message! 

What our message ultimately was.... is that psychosocial support is crucial and it has to happen beyond the treatment phase. It must continue into survivorship, or end of life care and especially into bereavement and grief. I mentioned that survivors and those in bereavement are the forgotten ones and this has to change. This resonated with everyone in the room!!!

After our presentation, the audience had the opportunity to ask questions. We received several questions about our actual standard. People wanted to know what a sample standard sounded like. So Peter read one of our standards to them! They had other logistical questions. Then one man stood up and thanked us for our courage and hard work. He said he knew the labor of love this entailed. He then proceeded to tell us that he too lost an only child to osteosarcoma. Multifocal osteosarcoma, just like Mattie! Multifocal osteosarcoma is VERY RARE! So rare, I never met another child like Mattie who had it, so this man caught my attention immediately. What I could tell as he was talking to me was he understood my pain deeply and wanted to convey this. He wanted me to know that he had to divorce his wife, that they no longer shared a bond anymore after the loss of his daughter. He also then stated that he felt that from observation it seemed like Mattie's death took its toll out on me the most. 

I have to say that I wasn't necessarily expecting such a profound comment to be coming at me from a perfect stranger. How could someone I never met, who hasn't even spoken to me before, know me better than people I interact with on a weekly basis?!!! Yet I was standing in front of a room of 150 people and he just made a very emotional and tender disclosure about himself that needed to be acknowledged. So I went back to my roots...... I became a counselor. I reflected back on what I just heard and validated what he was saying. I especially wanted him to know that his daughter must have been a special child too, just like Mattie. Somehow that comment truly resonated with him. At the end of the session, the moderator, dedicated the session to Mattie and this man's daughter! Which I thought was truly meaningful!!!!

I debated how to prepare for today's presentation. I could have gotten uptight about specifics, but I decided that in a group of fellow parents I have to be real. We have all lived this topic and therefore coming at this presentation from this approach was the only way I could mange doing this in the allotted time. Because frankly I can't do anything well in 15 minutes. I don't like time constraints especially when talking about Mattie. 

We snapped this photo today with Cara, Nicole, and Debbie! We met these wonderful ladies in Columbus, Ohio, when we did the keynote address at their APHOES conference in March of 2014. APHOES is the professional organization for educational specialists who work to meet the educational needs of children with cancer. Debbie recently reached out to me and in May of 2015, Peter and I will be going to New York City to be giving a keynote address to the NY/NJ chapter of the Association of Pediatric Hematology/Oncology Nurses. As an aside, I learned a fun fact that all three of these women are Italian, like myself. So we had a good time chatting about that today and uniting around our cultural heritage! 

Tuesday, October 21, 2014

Tuesday, October, 21, 2014 -- Mattie died 267 weeks ago today.

Tonight's picture was taken in October of 2004. We took Mattie to the Leesburg Animal Park Pumpkin Village and he had a great time! That was one of our family traditions that we did every year. Actually we went to that park often, because Mattie loved interacting with animals, but the combination of that with the fall festival activities was always a hit!!! Got to love the sheep, Peter, and Mattie in this photo! Each one of them had a story to tell.

Quote of the day: Sometimes, the simple things are more fun and meaningful than all the banquets in the world ... ~ E.A. Bucchianeri


It has been a whirlwind of a day as I have been doing last minute things to prepare for the trip to Toronto! I am signing off from DC and the next time you hear from me will hopefully be from Canada. Peter and I are presenting on Wednesday and on Saturday and in between we have dinners and other things to attend. So it should be a busy time for us! Of course with the beauty of technology, Peter is also juggling work from Canada! Which won't be easy for him, but somehow he seems to manage it! I am not sure where we would be without technology. It keeps us connected which is a blessing and a curse all at the same time. I am not implying I wish to live without technology, but...........................!!!! I was sent this great You Tube video the other day and the message in it does make you pause. Doesn't it??? The title of the video is "can we auto-correct humanity?"

http://youtu.be/dRl8EIhrQjQ

Monday, October 20, 2014

Monday, October 20, 2014

Tonight's picture was taken in November of 2003. I eluded to this photo in last night's posting and I found it!!! Mattie just loved this chicken. He really did not want to catch the chicken as much as he wanted to imitate her. But of course the chicken had no clue, I am sure she was frightened nonetheless! 


Quote of the day: Perhaps the only limits to the human mind are those we believe in. ~ Willis Harman 


Today was a busy day as I prepare for a conference in Toronto! In the midst of that I realized that I also had another conference proposal to generate because the application deadline is October 31. At many points today I wanted to say, JUST FORGET IT. I am tired and somewhat mentally spent. But there is some truth to tonight's quote..... 

My friend Ann sent me a link to a story entitled, A Poet On Losing His Son: 'Before You Heal, You Have To Mourn.' The author is Edward Hirsch. I included the link, because it is really worth the read and also worth listening to his 7 minute interview as he reads some of his poetry regarding the death of his son. Mr. Hirsch is a poet by profession and is naturally gifted at expressing himself in this manner. Which helps, but what I found intriguing is not only his feelings but his insights on GRIEF!!!
http://www.npr.org/2014/09/05/345796530/a-poet-on-losing-his-son-before-you-heal-you-have-to-mourn

This dad openly admits that after losing his son tragically and unexpectedly, he couldn't function at work. He also became desperate and started to fear that he would forget memories and things about his son! Which I totally understand and in part feel compelled to write the blog. Are there days I rather not write? Absolutely!!! It is very taxing to have to sit at the end of the day and sometimes be open about my feelings, but for the most part I write because it provides me a space to keep Mattie alive. Grieving parents do not have such spaces in our daily lives!!! Mr. Hirsch expresses this same sentiment, which is why he writes his poetry! 

I love how Mr. Hirsch explains in his interview how he initially began talking about his son Gabriel to family and friends and then reached out to strangers in a coffee shop! Anything to keep the stories alive, to make sure his boy and his spirit would never die. When writing he feels he is with Gabriel. He is a poet at heart and poetry takes courage and it makes him articulate how he is FEELING. It allows him to express himself and it gives him a place to put his grief. He is so right, our society is all about HEALING and NOT about grieving. In fact we don't even like hearing about grieving and we want people to get over it as soon as possible. Unfortunately it doesn't work like that.

I absolutely love Mr. Hirsch's description of Mourning. To me it is spot on beautiful. I couldn't have captured it better. A parent's grief is long term and internal. No one really walks this lonely journey with you. The analogies are all truly illuminated in this poem, such as carrying a bag of cement, up a mountain, but the trick is there is no top to this mountain. It is endless and his description of TIME resonates with me to no end. This is a man who gets it! BRAVO!!!! There is someone out there who speaks my language. 

Excerpt: Gabriel

I did not know the work of mourning
Is like carrying a bag of cement
Up a mountain at night

The mountaintop is not in sight
Because there is no mountaintop
Poor Sisyphus grief 

(NOTE: In Greek Mythology Sisyphus was punished for chronic deceitfulness by being compelled to roll an immense boulder up a hill, only to watch it roll back down, and to repeat this action forever. So this is unending grief, too heavy to bear.)

I did not know I would struggle
Through a ragged underbrush
Without an upward path

Because there is no path 
There is only a blunt rock
With a river to fall into

And Time with its medieval chambers 
Time with its jagged edges
And blunt instruments

I did not know the work of mourning
Is a labor in the dark
We carry inside ourselves

Sunday, October 19, 2014

Sunday, October 19, 2014

Tonight's picture was taken in October of 2003. Mattie was a year and a half old. We took him to a fall festival and within the festival there was a petting zoo. I am not sure who had a better time at this event, Mattie, Peter, or me!!! I loved watching Mattie check out each of the animals for the first time. I got to snap the photos for part of the time, why Peter helped explain the animals to Mattie and then supported him as Mattie got up close to pet them. Then we swapped places so Peter could watch the process. Somewhere in our photos, we captured Mattie acting like a chicken and literally running around the pen flapping his arms. There were many sides to Mattie, which made him an absolutely fascinating child and NEVER boring. 

Quote of the day: Life begins on the other side of despair. ~ Jean-Paul Sartre

Since yesterday we spent a great deal of time captured by the computer working, today we spent more time away from cerebral activities. This is what Mattie's memorial Yellowwood tree is looking like this Fall! With the changing of the season, the tree should turn a golden yellow! Or that is the HOPE! There are three reasons why we selected the Yellowwood tree for Mattie's memorial tree. The first is there is NO other Yellowwood tree on the campus, making the tree very unique to Mattie's school. Having a special tree representing Mattie's life is symbolic to Mattie's character. The second reason is that in the Fall, the tree's leaves turn a golden yellow. Gold is the official color of childhood cancer. Therefore, that seemed appropriate and third, in the spring the Yellowwood tree flowers. Mattie's birthday is in April and to us that seemed like a lovely gift timed around Mattie's birthday.  

In September we tied a GOLD ribbon around the tree and of course all the LEGO ornaments, wind chimes, bird house, hotwheels cars, and trains hanging from the tree are all doing fine!

We ventured to Roosevelt Island today. I snapped some photos while there. This is the city of Roslyn from the Island.

The sky is SO BLUE today! Not a cloud to be seen!

This is our Classic Roosevelt Island snapshot. When we would walk Roosevelt Island with Mattie, Peter would always capture a photo in this location. As the seasons would change, he would follow them right from this spot. This huge pine tree in the distance..... I have seen in over the course of so many decades, in all kinds of weather. Whether I was happy or sad, in good times or bad. Despite how I am feeling, there it stands to greet us, like a beacon. 

I have always been a fan of ducks! Mattie loved them too. I could watch them for hours. This fellow just seemed so regal!