Saturday, February 15, 2014

Saturday, February 15, 2014

Tonight's picture was taken in February 2009. Mattie was home between hospital stays and what kept us all grounded and focused were Legos. They were therapeutic for all of us. They had a way of transporting us away from cancer, chemotherapy, surgeries, and psychological pain. Even when it was too difficult for us to talk with one another, we connected through building. The structure next to Mattie was something that he and Peter built together. That year while battling cancer, we must have bought every single Lego kit on the market. Our home had thousands upon thousands of Lego bricks everywhere. 


Quote of the day: Age does not protect you from love. But love, to some extent, protects you from age. ~ Anais Nin

Though we have been in meetings basically ALL day since Thursday, I did want to pause to show you some of the wonderful sights we have captured along the way. Each morning we have had a glorious sunrise over the Bay. We are certainly grateful we are in Florida and NOT in DC, contending with snow and unpleasant weather. But I do have to give this caveat.... Tampa is NOT like Southern Florida. It is windy and quite chilly for the most part. Of course in comparison to DC, this is relative, but it also isn't what most of us think of, when we reflect on Florida.

Check out this glorious photo of Mattie Moon that Peter captured! In a way, I think this is very symbolic of Mattie watching out and after both of us during the conference.

From our hotel window, we can see the arrival and departure of cruise ships daily. I am enamored by large ships, and I love to watch them traverse the water. Maybe because they are so HUGE, and seem defy logic and reasoning in their ability to move that they capture my imagination. This was a morning arrival of a Carnival ship.

This afternoon, when we got back to our room, we went out on the balcony and watched "Brilliance of the Sea" depart from port. It was a wonderful sight!

Peter snapped a photo of me at our exhibit booth today! I may NEVER get out of ALL my sweaters. I literally wore two very heavy wool sweaters during all conference days, mostly because it is chilly out and inside it is AIR CONDITIONED! A wonderful feeling for a person who is already NOT feeling well. I have to say that our exhibit table may have been one of the most colorful ones. To the conference, I shipped over 80 recyclable Mattie Miracle bags, microfiber clothes, brochures, business cards, and about 10 pounds of candy to give away. I know that the LARGE draw to any conference table is the CANDY. This year I made a special effort to get popular candy bars! It was a huge hit. I had people throughout the conference tell me they stopped by our table for a sugar pick me up treat, and that we had the best candy! 

While at the booth today, I had the opportunity to chat with many visitors. One woman was a cancer survivor and shared her story of courage with us. Yet she said that when she looked at Mattie's picture, she wasn't sure why she survived and Mattie didn't. I could see she was grappling with that question and also knowing what she endured and survived, she wasn't sure how we survived and are still surviving the loss of our Mattie! 

Also while at the booth, one of our psychosocial think tank professionals came up to chat with Peter and I. She had been reflecting on the think tank and also all her interactions with us. What I found so special about her comments was that she observed every attention to detail that we put into our events, marketing material, booth set up, meals we provide our team, and so forth. This made me feel very good, because what she was saying is 100% accurate!!! Details are important to me, and what image we project represents all aspects of Mattie Miracle. Though in comparison to other cancer groups, we are small, I don't want small to equate to unprofessional or ineffective. So her positive feedback made me see an outsider's perspective.  

Peter and I attended more sessions today and literally after about almost 24 hours of training since Thursday, we are mentally wiped out. We heard about cutting edge psychological research with childhood cancer and trends for distress screening of children and families. It has been a lot to absorb and take into account and of course we approach all data and research outcomes with Mattie and our situation in mind. As I say to psychosocial professionals all the time..... they may work with hundreds of families over the course of decades, but that still doesn't give them the insight of having the lived experience. I am always amazed when I hear about certain interventions or the way particular studies were designed. I am amazed because I can already tell you whether this will work or not work, why? This isn't unique to me, but most likely would apply to any parent. Simply because we lived it and we know the challenges with timing, the issues associated with intense caregiving, and also living within a hospital setting. What these research studies have verified for me however is NOT all childhood cancer experiences are the same. Based on the type of cancer, the nature and intensity of treatment will differ. This makes a huge difference in the psychosocial impact. Certainly I know this intuitively since most of the families I came across in the hospital did not deal with multiple limb salvaging surgeries, a sternotomy, and a host of other issues associated with osteosarcoma.

As I write this, the think tank and the conference are now complete. Did we accomplish what we set out to do? Most definitely! But my greatest hope is one day I will find some big donors and corporations who will stand behind our work and support the efforts we have the vision to accomplish. It isn't a matter of will it happen, it is a matter of when! Nothing has been handed to Mattie Miracle, it has instead been born out of hard work, focus, determination, and the ability to make connections with the right professionals. 

Friday, February 14, 2014

Friday, February 14, 2014

Tonight's picture was taken on February 14 of 2009. This has to be one of my favorite photos taken at the hospital. It was snapped by Jenny, Mattie's art therapist. She captured this special moment of Mattie giving me the valentine's he made for me that day. A day I will never forget. What I also love about this photo was Jenny captured a very familiar scene in my memory. Mattie typically liked to touch nose to nose with me and stare into my eyes. I could try to describe this to you, but the photo says it all. This position wasn't contrived, this was Mattie!


Quote of the day: Only in the agony of parting do we look into the depths of love. ~ George Eliot

After the think tank yesterday, we took our key team members out to dinner. Here is a snapshot of our group.
Back Row from left to right: Dr. Bob Noll (Children's Hospital of Pittsburgh), Peter, Dr. Andrea Patenaude (Dana Faber), Dr. Lori Wiener (NIH), Dr. Anne Kazak (Nemours)
Front row from left to right: Wendy Pelletier (Alberta Children's Hospital, Canada), Denise Tordella (Private practitioner and Mattie Miracle supporter), Vicki, and Dr. Mary Jo Kupst (Medical College of Wisconsin and Mattie Miracle consultant). It was a wonderful and lively dinner and a great way to end a productive 8 hour think tank!

Peter and I attended conference sessions for about 9 hours today. One of the keynote speakers at the conference was Dr. Philip Pizzo, a distinguished pediatric oncologist. We had the opportunity to meet Philip and he graciously acknowledged Mattie Miracle's work and mission to challenge the field to create a psychosocial standard of care. I am pictured here with several amazing leaders in the field.
From left to right are: Vicki, Dr. Andrea Patenaude, Dr. Jimmie Holland (Sloan Kettering, and considered the grandmother of psycho-oncology), Dr. Barbara Jones (University of Texas at Austin), Dr. Lori Wiener, and Dr. Philip Pizzo. 

In addition to attending the conference, we are also hosting an exhibit booth. Our friend and supporter, Dave, is helping us man this booth. This is Dave and Denise's second think tank with us and we truly value their physical and emotional support. It isn't easy to be the only set of parents who lost a child at this conference. The rest of the attendees are clinicians. Though we can understand and are intrigued by their work, their work effects us personally. So in essence the hours in sessions impact us differently. For the most part the sessions are stimulating but then we always come across the psychological camp with research illustrating that kids with cancer thrive just as well as the average healthy kid. Meaning that there are no differences in depression and anxiety levels in these two VERY different populations. Naturally Peter and I sit back and question this research since it does not apply to us or MATTIE, nor to many of the families we now interact with. Having received my doctorate, I am aware of the complexities of having a research agenda and that data can be analyzed to confirm one's theory. We would like to think that research is pure, but we can never discount the human factor. I frankly can't even wrap my head around cancer having NO psychological impact on a child! So I will leave it at that. 

The highlight of my day was watching Peter in action this morning. We attended the morning plenary, which included speakers addressing the new national standard of psychosocial care in the adult cancer world. After the talk, Peter got up to ask the speakers some questions. Peter represented the Foundation and basically told an audience of 500 people about Mattie Miracle's work and our commitment to a psychosocial standard of care in the childhood cancer world. I was very proud of him and his comments started a snow ball effect of interest. Way to go Peter!

Thursday, February 13, 2014

Thursday, February 13, 2014

Tonight's picture was taken on Valentine's day of 2009. My last Valentine's day with Mattie. This photo captures a very special moment between us. Mattie worked that afternoon with his art therapists to create a few hand crafted surprises for me. One was a crown of hearts for my head and the other was a box decorated with hearts and filled with all sorts of art work and messages from Mattie. I still have this box and is stored in one of my closets. 


Quote of the day: The world is so empty if one thinks only of mountains, rivers, and cities; but to know someone here and there who thinks and feels with us, and though distant, is close to us in spirit, this makes the earth for us an inhabited garden. ~ Goethe

Today Mattie Miracle held its second psychosocial Think Tank at the American Psychosocial Oncology Society conference in Tampa, FL. We had twenty people attend this very intense nine hour working session. What brought us to where we are today? Well I felt a bit of history was important for the group to hear this morning. 


Naturally, I shared Mattie's story and aspects of his battle. Though Mattie's physical treatment was horrendous, at the end of the day what remains with us even today are the psychosocial issues. These issues range for each child but for us it was watching Mattie battle with isolation, depression, anxiety, medical post traumatic stress disorder, an inability to walk and be independent, and the list went on! I explained this in context of what motivated us to start a 501c3, one which is focused upon psychosocial education, awareness, and enhancing access to supportive services.

Soon after Mattie died, I began doing searches of the scientific literature using keywords such as 'psychosocial' and 'trauma.' A name that kept popping up on the internet was Dr. Anne Kazak. So in 2010, I emailed Anne and told her how much I appreciated her research and that it resonated with me. Anne immediately wrote me back and it was through her, we built our psychosocial dream team comprised of now five professionals. During 2010, we also began advocating on Capitol Hill, not for medical research but for psychosocial care of children with cancer. With each congressional staffer visit, the question always posed to Peter and I was..... is there evidence based data supporting the need for psychosocial care and interventions? At the time Peter and I did not know, so we reached back out to Anne and decided to do something gutsy, which was to host the first ever psychosocial childhood cancer symposium on Capitol Hill in March of 2012. This was an historic event in which 12 states were represented, over 85 mental health professionals were in attendance, along with congressional staffers and four congressional members. We wanted to show congressional staff that their psychosocial questions could be answered and to do this we assembled a team of leaders in the field who gave a congressional briefing and then workshops for the next eight hours. 

From that symposium, Lori Wiener, who served on the panel of symposium experts, contacted me to encourage me to consider financing and hosting the first ever childhood cancer psychosocial think tank at the American Psychosocial Oncology Society conference in Huntington Beach, CA. That was another historic event which brought together a multi-disciplinary group of psycho-oncology professionals to brain storm standards of care and how to draft them! In one year's time, a group of over 40 professionals have produced an 110 page document backed up by evidence based practices and/or professional consensus.

Today's event was designed to review each of the standards, recommendations, and to discuss next steps. However, what I do want to mention here is that developing a standard of care was Mattie Miracle's brain child. No one else's and this it is something that we feel passionate about in honor and in memory of Mattie. Do I want to help other children and families? ABSOLUTELY! But I am the leader of a Foundation who was also the mom of a child who died from cancer. My motivations will always revolve around Mattie, his legacy, and finding meaning for this terrible tragedy.  

One of our think tank participants, two years in a row, is a psycho-oncology leader from the Netherlands. Today she presented me with this beautiful tulip candle in memory of Mattie and to thank us for the work we are doing. This evening Peter snapped a photo of this candle with the MOON in the background. Very fitting for our Mattie Moon. This candle meant a great deal to me because it not only came from the Netherlands, but Martha remembered Mattie Miracle's color is orange and as she stated today in the meeting.... let's make the miracle happen! Which is to finalize a standard of care. I couldn't have said it better myself.

Wednesday, February 12, 2014

Wednesday, February 12, 2014

Tonight's picture was taken in February of 2009. That day Mattie went to clinic and his art therapists, Jenny and Jessie, asked him if he wanted to paint something on the Pediatrics welcome sign that was going to placed by the elevator banks on the fifth floor of the hospital. Mattie was totally disinterested with that whole request until I suggested that he could put his foot print on the sign. Mattie's left leg was nicknamed "George." After the lovable monkey, Curious George. Not unlike Curious George, Mattie's left leg was the only limb without a tumor in it, and therefore was never operated on. It functioned beautifully and in many ways, Mattie's left leg and foot almost operated like an arm and hand. Any case, you can see Jessie and Jenny putting red paint on "George." The photo below shows you the sign that hangs on the fifth floor of the Hospital with Mattie's footprint on it. As people pass that sign each day, they probably do not know whose hand print and footprint are on that sign, but I remember all too well. The hand print belongs to Baby Morgan (who is no longer a baby!) and the footprint belonged to Mattie. 

Mattie's footprint is near the 'N' in Georgetown. A part of Mattie will always remain on the fifth floor of the hospital. 















Quote of the day: The grand essentials of happiness are: something to do, something to love, and something to hope for. ~ Allan K. Chalmers


Peter and I are safely in Tampa. It was an uneventful flight, which is the best kind. About 13 years ago, Peter worked in Tampa. Literally he would hop on a plane on Monday and return to DC on Friday. We managed this for over a year. One spring I came down to visit Peter and literally for an entire week all I experienced was rain. I mean torrential rain. I frankly have never seen Tampa when it wasn't raining. Guess what, as I am typing this, it is pouring! I am thrilled to be on the ground and not in this rain storm. 

Actually we are lucky we were able to get to Florida at all, since the East coast is at a stand still with pending snow. In fact, several of our think tank folks have canceled flights and one of the keynoters for the conference is now not coming because of canceled flights. We are fortunate to have our friends Denise and Dave with us. Not only are they friends but they are also Mattie Miracle supporters, who helped us today with luggage and brought all sorts of teas for me. They come to attend the think tank and to help us man our exhibit booth on Friday and Saturday. Help which is greatly appreciated!

When we arrived at the hotel, the front desk was busy, so they referred us to the concierge desk for check in. That was a fortunate problem for us, because it was there that we met Dorcas. Dorcas just transferred to the Marriott from the Ritz Carlton. The key is she worked at the Ritz Carlton in Georgetown, in Washington, DC. So we had a lot to talk about. Needless to say, Dorcas has taken very good care of us. She upgraded our room to the 24th floor, with an amazing balcony and view, and she gave us a reduced price on top of everything else. NOT the price I was quoted when I booked the reservation. Clearly nothing to argue about, I am not used to prices going down, only UP!   

Even our taxi driver was pleasant and knowledgeable. He gave us some history on Tampa, specifically about the historic neighborhood in Tampa, called Ybor which is located just northeast of downtown. Ybor was founded in the 1880s by cigar manufacturers and was populated by thousands of immigrants, mainly from Spain, Cuba, and Italy. For the next 50 years, workers in Ybor City's cigar factories would roll millions of cigars annually. During the great Depression the factories closed and with that Ybor fell into disrepair. Now of course it is restored and is a National Historic Landmark. It is our hope to see it while we are here.

I am trying to take it easier tonight, as I am still recovering. The Foundation's think tank is from 9am to 4:30pm tomorrow, and after which we will need to set up the Mattie Miracle exhibit hall booth. So it will be a very full day for us and Mattie Miracle!

Tuesday, February 11, 2014

Tuesday, February 11, 2014 -- Mattie died 231 weeks ago today.

Tonight's picture was taken in February of 2009. This was not an atypical sight on the fifth floor of the Hospital when Mattie was there. Mattie had a way of transforming his physical therapy sessions. I believe therapy for Mattie was not only physically challenging, exhausting, but at times painful. So when members of his hospital family came to participate and join us, this inspired him! The goal was to get Mattie to walk using his walker and forming a conga line with a tail of plastic colorful cones made something very difficult more bearable, fun, and always memorable! There were times when we also did physical therapy in the hospital hallways, playing ABBA music. Literally the music caused office doors to open, people would pop their heads into the hallway, they would be smiling, and would land up watching Mattie's physical therapy session.


Quote of the day: It is not what you do for your children, but what you have taught them to do for themselves, that will make them successful human beings.  ~ Ann Landers


When I reflect on Ann Landers' quote, I think about how much Mattie learned from us in such a short period of time. Time and time again, I hear people say less than flattering comments about only children. Only children have a bad reputation. After all, people think only children are selfish, self focused, spoiled, can't make friends, they mature too quickly, and they are bossy. In many ways these are all myths. I am an only child, who raised an only child, and many of my closest friends are only children. We are our own special club in a way, who usually understand each other right away. 

I distinctly remember one of Mattie's kindergarten teachers telling me a story about him. The experience remained fresh in Mattie's teacher's mind because he thought it was so telling about him. One day during lunch time, the kindergarten students were moving chairs around to sit with one another. However, it turned out with this particular set up one of the children remained sitting alone. Mattie observed this and felt badly for his classmate. Mattie could have stayed quiet or went about having his lunch with his friends. But that wasn't Mattie. Mattie was an advocate. A quality I want to say that he learned from me. Mattie was a quick study. Mattie encouraged his classmates to rearrange tables and chairs so that everyone could be included, and that is indeed what happened. Mind you I only heard this story after Mattie had died.  

Mattie died at the tender age of 7, so I am not exactly sure of what we really taught him. When I hear stories like the one Mattie's teacher shared with me, I see yet another side of Mattie, a side which I may not have necessarily seen in a non-school environment. In all reality the Landers' quote goes both ways. What parents learn from their children make them more successful and in some cases extraordinary human beings. Children teach us about patience, responsibility, forgetting about our own needs, and what it means to truly love another human being in an indescribable way. 

Monday, February 10, 2014

Monday, February 10, 2014

Tonight's picture was taken in January of 2008. We took Mattie for a walk on Roosevelt Island that weekend. We used to walk the Island often. It was practically in our backyard and made us feel like we were escaping the city. Since Mattie has died, over time, we visit the Island less and less. I am not sure if we are making a conscious decision to do that, but I do know during the first year of Mattie's death, Peter went to the Island every weekend morning. I think the Island helped us connect with Mattie early on. But with time, Mattie has become defined within us, not so much through our physical space. 


Quote of the day: The best and most beautiful things in this world cannot be seen or even heard, but must be felt with the heart. ~ Helen Keller

It has been the most uncomfortable four days for me. As I am still running a fever and not myself. The antibiotics weren't working, so I knew I needed to see the doctor today. I honestly did not have the energy to drive anywhere much less cook or do anything for myself. I was fortunate that Peter decided to work from home to help me, because I couldn't have managed without him. In line with what Helen Keller was talking about I think beautiful things are not only felt from the heart, but are seen during times of stress and illness.  

One of the things I have learned through Mattie's cancer battle is that Peter and I have been there for each other in times of great stress, heartache, and sadness. Such devastation can either break a marriage or strengthen it. For us, we continue to find ways to manage and cope together with what life has dealt us. With that said it is very evident that when one of us becomes sick, even with a cold or flu, we get upset. It is hard to see one part of our remaining unit shut down and because of what we lived through, there is always fear involved as to when things will get better. 

I have one more day to recover before deciding if I am traveling to the Foundation's think tank on Wednesday. It is my hope that tomorrow is a better day because it would be a shame not to be able to see how all our plans for the think tank have unfolded. 

Sunday, February 9, 2014

Sunday, February 9, 2014


Tonight's picture was taken in February of 2009. During that time period, Mattie seemed to love cupcakes. As you can see from this photo, he popped a mini cupcake into his mouth. But the story behind the cupcakes was the following..... Mattie wasn't eating much at that point in his treatment and we were also trying to encourage him to participate in physical therapy to relearn how to walk. The incentive system that I created for Mattie involved cupcakes. If he listened to Anna (his therapist) and tried his best in a session, then his reward was a cupcake. Between hospital admissions, I would go home and bake two dozen cupcakes and literally cart them with me to the hospital on admission day. I don't know where I got the energy to do this, but when it came to Mattie, I found the resources. 


Quote of the day: Sometimes you have got to be able to listen to yourself and be okay with no one else understanding. ~ Simi Ngr

I am still under the weather today and have remained in bed all day. Peter captured some photos today of our snow flurries. It was quite a beautiful sight to see but what you can't tell is on the wooden fence and within these bushes are many, many sparrows. Hundreds of sparrows visit our deck each day and grace our feeders. When they are not on our feeders, they perch themselves in our bushes. Though this is the commons area of our plaza, I call these bushes ours, because Peter and Mattie literally planted all of them together. 

This photo reminds me of the 12 days of Christmas..... two turtle doves, but instead there is no partridge in a pear tree here!