Wednesday, January 28, 2015

Wednesday, January 28, 2015

Tonight's picture was taken in February of 2009, on Valentine's Day. It was our last Valentine's Day with Mattie. Of course I did not know that at the time, and fortunately ignorance is bliss. Nonetheless despite my lack of knowledge about when he was going to die, I was bright enough to know that every minute with Mattie should be appreciated. I shared that philosophy even before Mattie developed cancer! I did have professional interests and obligations, but Mattie always came first and thankfully he did because we only got seven years together. On Valentine's Day, Mattie worked very hard with the help of his art therapists to surprise me with all sorts of hand made gifts. I still have all of these gifts and will remember this day as if it were yesterday. Mattie and I always made hand crafted Valentine's for his friends and teachers and I wanted to post a photo of that tonight on the blog but I can't seem to find any of these photos! Which of course is very upsetting to me. I know we did all these crafts, I just can't find the visuals to illustrate my memories. What triggers Valentine's day? The email from my friend in cancer today!


Quote of the day: I remembered every moment between us, and every moment felt more precious as time passed. ~ Shannon A. Thompson

I received an email this morning from my friend in cancer. She is involved in promoting a rally for Childhood Cancer at the National Institutes of Health (NIH) and she sent me a link about creating a Valentine's Hang Tag. 

This Childhood Cancer Awareness rally will be held at NIH on February 14, 2015. I was told that a Valentine's theme will include a red rose display and 50 red roses handed out to people. There will be an opportunity to honor Mattie on a custom made festive hang tag attached to the 50 roses to be handed out. The design will include 4 panels (two folded hearts). On the front cover side will be a photo of Mattie and the text "Forever in our hearts." Inside will be some childhood cancer facts. The back panel will include a word cloud design with 15-25 words describing Mattie, as well as his first and last name, age, home state and diagnosis.

When I went on line today to fill out the application for the hang tag, I did not think it would be too difficult. But trying to list 25 adjectives to describe Mattie on the spot wasn't as easy as it sounds. Mainly because in my mind it is hard to describe Mattie with one word or 25 words for that matter in a list. I started my list and then what I quickly did is I went to the internet and looked up "adjectives to describe someone." Hundreds of lists came up. This helped me tremendously because I wanted to find the right words to capture Mattie's spirit. 

I then came up with a list and submitted it, but then realized I hadn't waited for Peter's list. Later in the morning Peter text messaged me his list. Though our lists had a lot of overlaps Peter had several words that described Mattie to a T and HAD TO BE added to the application. So I emailed my friend and I asked her...... "how do I edit my application once it has been submitted?" Fortunately she is technologically savvy and she fixed it for me!

So here is our list of 25 words to describe Mattie (some of the words may describe things Mattie actually liked -- such as nature and building with Legos):

brave

son

curious

precocious

builder

persevering

gentle

helpful

spirited

creative

thoughtful

nature

loyal

lovable

playful

humorous

logical

energetic

mature

musical

friend

charming

passionate

resourceful

adorable

Tuesday, January 27, 2015

Tuesday, January 27, 2015 -- Mattie died 281 weeks ago today.

Tonight's picture was taken in November of 2004. In a way it is hard to believe that our living room looked like this back then..... full of toys and ALL thing Mattie! I remember we did so many things on this little table from coloring books, writing, playing, creating, and having snacks. Of course Mattie also used the table for his trains! Trains were everywhere in our home..... on every floor and in every room! Trains of every kind and brand!


Quote of the day: People do not seem to realize that their opinion of the world is also a confession of character. ~  Ralph Waldo Emerson


Tonight I did not feel like writing. I have been spending a great deal of time writing and glued to a computer, for what seems like months. Peter was just watching me tonight and wondering.... how was I going to write tonight's blog especially since I was staring at the computer screen? Yet in moments like this when I draw a blank and really do not feel like sharing aspects of my day or feelings, I turn to Mattie. 

Around our home are constant reminders of Mattie. One of which sits right next to me on the couch.... a Lego model of the Taj Mahal. Peter picked this Lego kit up for Mattie at the store and when he brought it back home for Mattie, I think we were both shocked. Mainly because this structure is comprised of over 5500 Lego bricks. It is huge and a major production to put together. This would be hard for a seven year old who was healthy, but most definitely it was for one who was battling cancer. Yet Legos was our whole family's form of therapy. It kept us focused, engaged, and after we built something together we felt like we accomplished something positive and had a lovely creation to admire that brightened up our depressing space. Legos came with us everywhere, even to the Hospital! During Mattie's 14 month battle we assembled every Lego kit possible! He was prolific and in a way Legos enabled him to engage with the world around him. It was hard for Mattie to talk with others in his life as he got sicker and sicker. Yet Legos was a safe thing to unite over and as people entered into his hospital room, if they wanted to have a rapport with him, they knew they needed to take an interest in his Lego creations!

Despite the fact that Mattie has been gone from our lives for five years, several of his Lego creations are still assembled in our home and are on display. They still exist because Legos were that important in his life. They all have a story associated with them and when we see them, they remind us that indeed there once was a special child who lived within our home and whose spirit is still here and with us. 

Monday, January 26, 2015

Monday, January 26, 2015

Tonight's picture was taken in February of 2004. Mattie was about two years old and when we had snow, rest assured we were out in it! Mattie was intrigued by the white stuff and loved to go out and play in it, build in it, and just be a part of it. I did not like the cold or being out in the snow, but I tolerated it with Mattie's insistence. Mattie was big on making snowmen and tunnels and as you can see in this photo, Mattie was outside and all business trying to assess what we were going to do that day on our deck. 





Quote of the day: Remember that the happiest people are not those getting more, but those giving more. ~  H. Jackson Brown, Jr.

Peter was scheduled to travel to Nashville today, but it never happened. Given the blizzard in the Northeast, his flight was cancelled. Fortunately so, otherwise he would have been stranded tonight unable to get home! I have had a full day working in front of a computer, so I am sharing a fun photo instead tonight. 

This evening Peter went outside on our deck and came back inside with this in his hand..... a snowball! If Mattie were here, he would have gotten a huge chuckle out of this. Actually I am quite sure if Mattie were alive he would have been right along side Peter in the snow tonight! 

Sunday, January 25, 2015

Sunday, January 25, 2015

Tonight's picture was taken on September of 2008. It is one of my favorite photos of Mattie. My friend Susan came to visit us and brought Mattie this archaeological  kit, in which Mattie had to dig through a block of clay to find model dinosaur bones. Once he found all the bones he then had to assemble them to create the 3 dimensional dinosaur you see before you. It was quite a project in which Mattie was down on the floor, sitting on a bed sheet with goggles on and clay everywhere. He had a wonderful time. But after it was over, he was tired, peaceful, yet satisfied with his accomplishment. 

Quote of the day: There is only one thing worse of speaking ill of the dead - and that is not speaking of the dead at all. ~ Anonymous

My friend Charlie sent me a link to an organization based in Pacific Palisades, California, entitled, Grief Haven. The founder of the organization lost her only child to cancer. However, when Charlie sent me the link, she wanted me to know about a grief pin they were featuring on their site (http://www.griefhaven.org/order-pin.shtml). We have all heard about awareness ribbons and pins, but what is a grief pin? Well a grief pin in a way is similar to an awareness pin.... it is bringing awareness not to a particular disease but to death and loss itself. 

Grief Haven feels that we have NO SIGNS and SYMBOLS in our culture to acknowledge that someone around us is grieving. If someone walks passed us, how do they know we are going through a hard time? In the "old days" people used to wear black for extended periods of time. But not today. I remember as a child, when I went to Italy to visit my father's relatives, I can recall MANY of my cousins wearing black. I found it odd, since people in the US did not do this, so I asked my grandmother WHY?? She explained to me that was part of the culture, people wore black for long periods of time, YEARS in some cases after a family member died!!!  

We clearly know if someone is wearing for example a pink ribbon, they are supporting breast cancer, and a red ribbon, they are supporting heart disease but there are no ribbons and no symbols for grief. Mainly because we are supposed to bottle this feeling up and keep it in check.  

When you go to Grief Haven's website, there is a disclaimer at the bottom of the site that says....."The Psychiatric Diagnostic Statistical Manual states that losing a child is a catastrophic stressor unlike any other." It is an interesting disclaimer and one I know certainly would be corroborated in the research literature. 

The website explains that this grief pin's symbols were carefully put together. Grief Haven's foundation logo is an upside-down heart, which represents a heart in grief; the diamond shape is hope; and the scrolls are ancient symbols of love. To represent grief, we wear the heart upside-down. However, Grief Haven feels that over time, when we are ready, with hope and love, we will turn the heart right-side up one day.

When Charlie initially sent me the photo of this pin and the information about it, I looked at it and then saved it for another day. My initial reaction wasn't positive. However, the notion of the pin remained in my mind several days later. So I kept re-reading about the pin and then finally decided to order two pins to see what they actually looked it. When I received the pins yesterday and I read the material that came with it, I actually liked it much more than what I saw on the website. The pin is small, delicate, and goes on a lapel, like my Mattie awareness pin. I am wearing this heart pin upside down because in my mind I will always be grieving. To me that is a life-long process. Unlike the intention of the pin. I do not think there could possibly be enough love and hope out there for me to eventually turn this heart right side up. In addition, I am not wearing the pin as a symbol to others that I am grieving (which is the intention of the pin!), but I am wearing the pin as a symbol of the fact that I lost a very important person in my life. While on one part of my coat I wear an orange awareness ribbon that symbolizes Mattie's legacy and future, and now on the other side of my coat represents the loss of a boy and our lives that died on September 8, 2009.  These are my symbols, symbols which are important and mean something to me.

Saturday, January 24, 2015

Saturday, January 24, 2015

Tonight's picture was taken in March of 2003. Mattie was almost a year old and in one of his favorite modes of transportation...... on Peter's back! We took Mattie to the US Botanical Gardens. Which was a wonderful space to visit, especially in the cold weather months, because it was always so warm inside and tropical. It felt like a short visit to Florida. What I love about this photo was Peter had no idea what was going on behind him. He was focused straight ahead and Mattie was focused on me. I had no idea a photo was even being taken! 


Quote of the day: There are two ways of meeting difficulties. You alter the difficulties or you alter yourself to meet them. ~ Phyllis Bottome


For the past week or so, Peter and I have been working to complete an application for Mattie Miracle to qualify to become a member of a national coalition of cancer organizations. I am sure you can relate to my sentiments as I write this, because we have all had to apply for something in our lives. Whether it be school, a job, a scholarship, a loan, etc.... Whenever you apply for something, you want to assess yourself, evaluate what you have accomplished, and hopefully when doing all of this you can make a case that you qualify for whatever you are applying for. This can be a stressful process in a way but in the end, when you sit back and look at the finished product, it really is wonderful to see the results. 

While working on this application for the past week, quite intensely, I wasn't sure at times I would ever finish, could get the words out succinctly, and capture all we have done in the last five years. However, now that I read through all that we have done on both the local and national levels, I would say it is remarkable. It is remarkable because we do not have a staff, no full time employees, and our operating budget is not significant. Yet here are some of the things we have done:

National Accomplishments:

1) May 10, 2011 - H. Res. 262 (Legislative)

Mattie Miracle began advocating on the Hill in 2010, for psychosocial awareness, support, and care.  From those efforts H. Res. 262 was created, which was designed to support efforts to raise awareness, improve education, and encourage research and treatment of the psychosocial needs of children, adolescents, and young adults diagnosed with a childhood cancer and their families. Sponsored by Chris Van Hollen (D-MD) with 22 co-sponsors.

2) September 22, 2011 - Childhood Cancer Survivors’ Quality of Life Act of 2011/2013

Mattie Miracle collaborated with Children's Cause for Cancer Advocacy and integrated psychosocial language into the Survivors' Quality of Life Act in 2011 (HR 3015). This psychosocial language remains in the Bill and was reintroduced on May 20, 2013, H.R. 2058: Childhood Cancer Survivors’ Quality of Life Act of 2013, sponsored by Jackie Speier (D-CA) with 31 co-sponsors. The insertion of psychosocial language would regulate the establishment of a center of psychosocial excellence, fund psychosocial outcome research, as well as long-term integrated medical-psychosocial follow up care for survivors.

3) March 20, 2012 - Childhood Cancer Psychosocial Symposium on Capitol Hill

Mattie Miracle hosted the first ever Childhood Cancer Psychosocial Symposium on Capitol Hill.  A room within the Capitol Hill Visitor Center was filled to capacity representing 12 different states across the country.  Our registrants were comprised of nurses, social workers, professional counselors, child life specialists, art therapists, occupational therapists, psychologists, medical doctors, and childhood cancer advocates, and leaders.  Professional attendees received continued education units for the eight hour event.  Capitol Hill staffers were present, and four Congressional Members (Rep. McCaul (R-TX), Rep. Van Hollen (D-MD), Rep. Speier (D-CA), and Sen. Reed (D-RI)) spoke and received outstanding legislation awards.  The symposium was moderated by a distinguished panel of psychosocial scientists and clinicians who conducted a congressional briefing and then delved into the cutting edge research. This was followed by a panel discussion in which the personal stories and insights from six parents touched by childhood cancer were shared with the audience.  It was at the Symposium that Mattie Miracle shared its vision for a National Standard for Psychosocial Care.

4) February 14, 2013 - First Childhood Cancer Psychosocial Think Tank

Mattie Miracle hosted an Historic Multidisciplinary Childhood Cancer Psychosocial Think Tank at the 10th Annual American Psychosocial Oncology Society Conference in Huntington Beach, CA.  The purpose of the think tank was to bring together psycho-oncology leaders (representing the fields of psychology, psychiatry, social work, nursing, and counseling) and brainstorm how to create and implement a pediatric psychosocial standard of care.  Currently, there are no U.S. standards of care for these critical services.  Standards of care define the minimum types of psychosocial services which should be available to children with cancer and their family members, no matter where in the U.S. they receive cancer care.  Standards should cover care for patients, siblings, parents, long-term survivors and families grieving the death of a child from cancer.  The day-long think tank was extremely productive and as a result four working groups were created.  These groups have monthly conference calls and periodically meet in order to further our goal.  As a result of this think tank, the American Psychosocial Oncology Society awarded Mattie Miracle with the Distinguished Public Service Award of 2013 at the conference.

5) February 13, 2014 - Second Childhood Cancer Psychosocial Think Tank

After the first think tank there were monthly conference calls with each of the working groups to review the clinical literature to ensure that the Standards generated were evidence-based.  A consensus-based approach was used to determine whether enough evidence was available for the standard to remain essential.  Mattie Miracle hosted a second multidisciplinary think tank at the 11th Annual American Psychosocial Oncology Society Conference in Tampa, FL.  The purpose of this think tank was to refine the Standards and to come to professional consensus.  At the second think tank small working groups reviewed the created Standards, evidence summaries, and rating forms as well as conducted additional reviews of specific portions of the Standards.

Local Accomplishments:

Created and endow the Mattie Miracle Child Life Program Fund at MedStar Georgetown University Hospital.  Since 2011, have contributed over $100,000 to this fund.  The fund supports psychosocial services through the creation of a child life position, a position which assists 3,500 children and families each year.  Mattie Miracle received the MedStar Georgetown University Hospital's Special Recognition Award in 2011 and the Flame of Hope Award in 2014 in recognition of our contributions to the Hospital and the childhood cancer community.

Mattie Miracle is a founding member and now the main contributor of the MedStar Georgetown University Hospital free snack/item cart.  This cart revolves around the in-patient pediatric units and offers free snacks and toiletry items to parents and caregivers of inpatient children who are unable to leave the units and get their basic needs met while caring for their children.

The Foundation runs two successful item drives within the community every year to stock the free snack/item cart.  This year we collected 4000 pounds of post Halloween candy which was distributed to 5 local hospitals and 5 cancer organizations, such as Ronald McDonald Houses.  On average, we donate over $10,000 worth of items to the MedStar Georgetown University Hospital cart per year.  Fox 5 DC covered our candy drive in 2013.

For the past three years, Mattie Miracle has funded a monthly pediatric nurse support group luncheon at the MedStar Georgetown University Hospital.  Nurses are on the front line of managing many of the day to day issues that their pediatric patients and families with cancer are experiencing.  We are committed to helping meet the psychosocial needs of nurses so that they may continue to provide the highest quality care to their patients and families.

Each May, Mattie Miracle sponsors an Awareness Walk & Family Festival in Alexandria, VA.  On average 500 people from the Washington, DC, Maryland, and Virginia area attend, in order to raise awareness about childhood cancer and funds for the Foundation.

Happenings for this year:

1) March 2015 - National Comprehensive Cancer Network (NCCN) Annual Conference Poster Session 

Mattie Miracle will attend the NCCN's 2015 annual conference in Hollywood, FL and present a formally accepted research poster on "Establishing Psychosocial Standards of Care for Childhood Cancer." The poster will describe the history of the project, the methodology of how the Standards were created, and the results of the project to date.

2) 2015 Springer Publications

Sardi-Brown, V., Kupst, M. J., Brown, P. J., Wiener, L. (in press). Psychosocial issues in children with cancer: The role of patient advocacy and its impact on care. In R. M. Henshaw (Ed.), Sarcoma: A Multidisciplinary Approach to Treatment, Heidelberg: Springer.

Sardi-Brown, V., & Brown, P. J. (in press). Parents' perspective on the role of psychosocial care: Conversations and approaches. In A. Abrams, A. Muriel, & L. Wiener (Eds.), Pediatric Psychosocial Oncology: Textbook for Multi-disciplinary Care. Springer.

3) July 2015 - Symposium at 2015 World Congress of Psycho-Oncology (IPOS/APOS)

Mattie Miracle will sponsor a Symposium at the International Psycho-Oncology Society and the American Psychosocial Oncology Society's World Congress in Washington, DC. Co-Founders will present the history behind the Standards for Psychosocial Care project, provide a summary of the current status of the project, and discuss hopes for implementation. The project's research and clinical leaders will describe the process used to develop the current recommended Standards, including: how the literature reviews were conducted, consensus calls, and the appraisal of the existing supporting literature. Each of the Standards will be presented along with a summary of the evidence found.

4) Fall 2015 - Supplemental Issue of Pediatric Blood and Cancer

Mattie Miracle is funding an on-line supplemental issue of Pediatric Blood and Cancer devoted to the "Standards for Psychosocial Care of Children with Cancer and their Families." This work will describe the process used to develop the Standards, which will then be followed by a series of 14 brief papers that will provide detailed information on each standard, including tables of evidence and approaches to address barriers to implementation.

Photo highlights from today! Our wonderful amaryllis that comes back year after year --- is in full bloom in our living room!!! A glorious sight!

A not so glorious sight!!! Our resident falcon is back! This falcon likes to swoop down and chase our sparrows and grab one or two for a snack off the feeder when possible. Thankfully today all the sparrows were too quick and escaped unharmed! 

Friday, January 23, 2015

Friday, January 23, 2015

Tonight's picture was taken in January of 2003. Mattie was 9 months old and he absolutely loved riding his "tot wheels." It gave him instant mobility, independence, and freedom. This happens to be one of my favorite photos of Mattie that Peter took, I think his smile was so captivating as he was staring right up at me. Our outdoor area was ideal for "tot wheel" time. Mattie would zoom up and down our commons area at lightning speed, honking his horn, and pushing all the lights, whistles, and other gadgets on this walker that made noise. 


Quote of the day: A cat has absolute emotional honesty: human beings, for one reason or another, may hide their feelings, but a cat does not. ~ Ernest Hemingway


In August, my friend Linda lost her long time and precious cat, Ashley. When you share a special bond with an animal, it is always very hard to say good-bye and put them to sleep. When I visited Linda's home today, I got to see several of her wonderful Ashley tributes, from a lovely canvas photo of him to a special woven blanket with images of Ashley integrated into the fabric. All just beautiful and meaningful tributes to a special member of the family. 

In October, Linda went to the shelter and rescued Gigi. Gigi is lucky to have found a good home considering she has a medical condition which requires that she receive care and treatment each day. She is a beautiful cat, easy going, and loves attention. I sat next to her today and pet her head, neck, and back. I could have done this for hours and she didn't flinch. I certainly know if I had done this with my own cat, Patches, this would have been problematic. Either Patches would have gotten up and moved way or taken a paw to me to bat me away. Patches did not like to be touched for long. As I used to joke..... "she tolerated us!" Of course despite that, I loved Patches and came to appreciate all her quirky behaviors, but she was not what you would call an affectionate cat. 

As I was visiting Gigi today, a part of me was thinking.... how could I get Gigi into a hospital ward to visit my friend Mary Ann?! My good friend is in the hospital and LOVES cats! Mary Ann has always wanted a red tabby like Gigi in her life and I know a visit from Gigi would perk her up. But somehow cats are NOT welcomed in a hospital setting. Thankfully pet therapy has finally made its way into hospitals, but to my knowledge it is only with dogs! Probably because dogs are trainable and cats, well.............. they are harder to train! Yet a cat is an excellent companion and will stay on a patient's bed for hours, if you have the right cat!  

Thursday, January 22, 2015

Thursday, January 22, 2015

Tonight's picture was taken in January of 2006. This was so typical of Mattie. He built something out of Legos and then decided to use it to step on it to reach up and grasp at things. There was no telling exactly what Mattie would do with this piece of Legos that he stacked together. But chances was, it wasn't going to be used for ordinary purposes. With Mattie you always had to think OUTSIDE THE BOX. That was what kept you on your toes constantly! It was mentally challenging and physically exhausting. Mattie had energy for five children and he never needed to nap or have down time. He had two modes...... very on and off. 


Quote of the day: I’ve learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel. ~ Maya Angelou


Peter and I LOVE this quote. I have even heard Peter use it during our presentations. This week when I went back to our post office where our Foundation PO Box is located, I had an amazingly pleasant surprise. My favorite postal worker, Darryl, is back working at our branch! This may not seem like a huge deal, but it truly is!!! Darryl is outstanding, and honestly if the post office could clone him, everyone would want to do business with the US Post Office. He is customer focused, super friendly, helps you with packages, is patient, and he does this with all of his customers. He has a fan club, of which I am one. Let me put him into context for you. 

In prior years, I would do a mass mailing for the Foundation every December. In my mailing I would send out a bulky envelope which included something like a pen. However, to ship a pen, I would need to put that in a padded envelope which would require special postage and also to assure that the pen wouldn't get damaged or broken, the envelope needed to be hand canceled at the post office rather than processed through a machine. If it would go through a machine, the machine could potentially crush the pens and then there would be the end of my mass mailing..... I would have a very poorly looking fundraiser/annual drive going out to donors. 

Darryl understood this, so you know what he would do with me? He would help me put stamps on all 500 envelopes and also hand cancel every single envelope right in front of me. I can assure you this was laborious especially over a mail counter, since I wasn't allowed behind the counter. Since this occurred during December, there were lines at the post office. Yet Darryl would help me and also process people behind me at the same time so they wouldn't get mad. There would be mountains of my envelopes everywhere! You couldn't help but notice me! I was a conversation piece for everyone who came into the post office some years. Lots of people talked to me and felt badly because they thought some company put me to work doing holiday cards and the office mass mailing. Little did they know, this mass mailing was self inflicted! In any case, Darryl assisted me with the Foundation mass mailing for years! Then one day, I noticed Darryl's place in the post office was cleaned out and he was gone. I asked all his colleagues where he went, but no one gave me a straight answer. I was devastated. I missed his kindness, his cheery disposition, and most of all I knew when he was there our Foundation was in good hands. He looked out for our mailbox!

After Darryl left, I had to change our whole December mass mailing process, because there was NO ONE else at the post office who would help me with stamps or hand canceling envelopes. Which is why when I saw Darryl back at his post this week, YEARS later, I was stunned. He came from behind the counter to hug me. I told him I missed him and don't you know he asked how my mass mailing had been going since he left! So I told him!!! Needless to say, I took my Mattie Miracle awareness pin off my coat, and gave it him. Darryl likes to wear pins on his tie, so I felt he need our pin. I told him he helped me raise a great deal of money year after year, and I couldn't have done it without his help! When I came into the post office today..... he still had the pin on which I gave him earlier this week!!!

Darryl is the perfect example of Angelou's quote, because I never forgot how he made me feel after all these years. But I am NOT alone. Before Darryl left the post office, he had a memory board up at his work station of customers who wrote him notes, gave him photos, and so forth. He is that lovable! We live in a world where so many people think how we treat each other doesn't matter, that our feelings for one another are fleeting and meaningless, but I would say quite on the contrary. At the end of the day it is feelings that linger.... they are tantamount and carry us through the storm. 

Tonight Peter is in Texas and he sent me this adorable photo!!!