Saturday, January 21, 2017

Saturday, January 21, 2017

Tonight's picture was taken in January of 2009. We were home from the hospital between treatments. This home time NEVER lasted long, because soon after a treatment Mattie would develop neutropenia. Meaning that his white blood cell (the cells that fight off diseases) count dropped dangerously low, and a high fever would usually ensue and back to the hospital we would go. As you can see one of Mattie's friends gave him this HUGE Scooby Doo balloon. Mattie was a big fan of Scooby and he truly enjoyed balloons, so this was a winning gift to him. What you can also see in this photo, were Legos. Mattie's toy of choice was always Legos and they were a God sent during cancer, because you don't need mobility to play, build, and create. 


Quote of the day: The price of success is hard work, dedication to the job at hand, and the determination that whether we win or lose, we have applied the best of ourselves to the task at hand. ~ Vince Lombardi

It maybe a three day weekend for some, but since I got back from Florida, I haven't stopped working. Preparing for the Mattie Miracle Roundtable is a full time job and then some. Peter and I ordered these beautiful plaques about a week ago and they were just delivered yesterday to us. We are awarding three plaques to Congressional members on Tuesday. I think they look very professional. I am happy to report that Rep. McCaul proudly has his Mattie Miracle plaque from 2012, on his office walls!

As the day wore on today, I created the awards speech that will we give at the Roundtable when presenting these plaques. In case you wanted to read what we will be saying, the verbiage is below. 


Congressman McCaul is serving his 6th term in the United Sates Congress representing Texas’ 10th Congressional district. Rep. McCaul is a childhood cancer champion as he is the co-chair of the Congressional Childhood Cancer Caucus, a Caucus which he founded in 2009 to more effectively direct congressional resources and efforts to the disease. The Caucus has focused its efforts on four priorities: pediatric cancer drug development, childhood cancer survivorship, psychosocial care for survivors and their families, and funding for state childhood cancer registries. 

Congressman McCaul is the author of numerous pieces of legislation that address these challenges such as the McCaul-Butterfield Creating Hope Act, which provides market incentives to pharmaceutical companies to develop new drugs for children with rare pediatric diseases, such as childhood cancers and sickle cell.

But what some people may not know is that Rep. McCaul understands childhood cancer personally. He lost his best friend in elementary school to leukemia. I have a feeling that this personal loss guides his work as Co-chair of the Caucus. When we began working with Rep. McCaul’s office in 2010, the number one question always asked of us was….. can you show us the evidence and data for the importance and effectiveness of psychosocial care? So in essence, we credit Rep. McCaul for charging us with this daunting task and being the inspiration for us to develop these historic evidence based psychosocial standards of care. 

Mattie Miracle is deeply grateful to Rep. McCaul for understanding that childhood cancer is not just about the medicine, and that providing psychosocial support to children and their families throughout the cancer trajectory is imperative for effective treatment outcomes and enhancing quality of life. Which is why Mattie Miracle is honored to bestow this Childhood Cancer Champion plaque to Rep. McCaul, as he continues to help us expand the message that psychosocial care must be a part of effective comprehensive cancer care. 

Congresswoman Jackie Speier represents California’s 14th Congressional District. She is a tireless advocate for women’s rights, the public good, and the security of Americans. She was named to Newsweek’s list of 150 “Fearless Women” in the world.

Rep. Speier is no stranger to loss. She lost her first husband in a tragic accident in the 1980s, she lost a child in pregnancy, and on a mission to investigate human rights abuses in Guyana in the 1970s, was shot five times and waited 22 hours before help arrived. I feel this is important to know this personal history about Rep. Speier because she is the true representation of a survivor. Which is why it is no surprise to me that she is a strong and fierce advocate of survivorship issues for children with cancer. In June 2015, Rep. Speier joined the other childhood cancer caucus co-chairs and introduced the STAR Act which addresses four major concerns facing the childhood cancer community: Survivorship, Treatment, Access, and Research.

Rep. Speier understands that the cancer fight does not end with remission. Since as many as two-thirds of childhood cancer survivors experience secondary cancers and other late effects that impact their quality of life. Mattie Miracle started working with Rep. Speier’s office in 2011, when we encouraged her to add psychosocial language to her survivorship bill. Rep. Speier not only understood and valued our insights but incorporated them into her Bill, which then became a part of the STAR Act. 

Mattie Miracle is deeply grateful to Rep. Speier for her advocacy and commitment to childhood cancer survivors and her understanding that psychosocial care is imperative and just as important as the medical care. Which is why Mattie Miracle is honored to bestow this Childhood Cancer Champion plaque to Rep. Speier, as she continues to help us expand the message that psychosocial care must be a part of effective comprehensive cancer care. 

Senator Chris Van Hollen was elected to the senate by the people of Maryland in November of 2016. However, prior to this Congressman Van Hollen served 14 years as the U.S. Representative for Maryland's 8th congressional district. 
Senator Van Hollen is a tireless advocate for thousands of children, adolescents, and young adults diagnosed with childhood cancer and their families.  He co-authored the landmark Caroline Pryce Walker Conquer Childhood Cancer Act and played an integral role in its enactment into law in 2008.  Congressman Van Hollen, whose district includes the National Institutes of Health (NIH), has been a leader in the charge for federal investment in biomedical research that will lead to new, improved treatments and hopefully a cure for childhood cancer.

In 2010, we began working with Congressman Van Hollen’s office and described the necessity of having access to psychosocial care for children with cancer, the importance of this care alongside the medicine, and our desire to spread this awareness. Congressman Van Hollen heard us loud and clear, and as a result, in 2011, he and Congressman McCaul (R-TX) introduced H.Res. 262, which was a resolution to Support efforts to raise awareness, improve education, and encourage research and treatment of the psychosocial needs of children diagnosed with childhood cancer.


Mattie Miracle is deeply grateful to Senator Van Hollen for giving psychosocial care for children with cancer a voice on Capitol Hill and understanding that this care is just as important as the medicine. Which is why Mattie Miracle is honored to bestow this Childhood Cancer Champion plaque to Senator Van Hollen, as he continues to help us expand the message that psychosocial care must be a part of effective comprehensive cancer care.

Friday, January 20, 2017

Friday, January 20, 2017

Tonight's picture was taken in January of 2008. This was literally seven months before Mattie was diagnosed with cancer. Who would have ever known from this photo that anything was wrong with Mattie, doesn't he look like the picture of health? That weekend we took Mattie for a walk, as he loved outdoor time and nature walks. As you can see he found a stick along his journey. Mattie had an extensive stick collection in our commons area. With each walk, Mattie usually found something from nature that he wanted to take home as a reminder of his adventures. Where Mattie would pile these sticks near our home is now our Mattie memorial garden. 


Quote of the day: Work is love made visible. ~ Kahlil Gibran


There is a great deal of truth in tonight's quote. When I wonder why I work around the clock, it isn't because I love to work! It is what the work symbolizes and is about. My work for the Foundation is a labor of love, and a tribute to my connection, love, and memory of Mattie. So indeed Gibran is correct, work is love! However, I have to say I am ready for the Roundtable to be over. The planning is an absolute killer, but I do not like Foundation events to look poorly, because I feel they are a reflection of Mattie. So I spend a lot of time working through details. 

I took Sunny out for a walk today and I was thrilled to get back inside. I just felt a combination of desolation (because of street closures, blockades, etc) and also uneasiness in the city. There is a ton of security and also a fair amount of protesters that make me uncomfortable in my own neighborhood. So in essence we are in a lock down status at home until Sunday. 

Pictured from left to right are: my mom, my cousin Clara, me, and my grandmother

It is hard to imagine that 23 years ago today my maternal grandmother died. In a way it doesn't seem that long ago. She was a special lady and we had a very close relationship, as I also called her "mom." My grandmother lived with my parents ever since I was born, so I never knew anything but an inter-generational family. I learned a lot from my grandmother and it is a shame she never met Mattie. 

This was a photo of my family at New Year's in 1989. My grandmother was truly versatile. She could cook, work hard, but also enjoyed going out, watching people, and experiencing new adventures. I will never forget the day she died, because I was living in Boston at the time and going to graduate school. That morning, I woke up from a dream to a phone call. The call was from my mom telling me my grandmother died. But in a way I knew that already. In my dream, my grandmother was handing me a bunch of red roses. When I went to grab them, all the petals fell off and the flowers died. When I came to consciousness from that dream and heard the phone ring, I knew already what had happened. 

My grandmother suffered a massive stroke when I was in graduate school. She was left paralyzed on one side, unable to swallow, to read, to concentrate, and had an altered personality. She lived with this condition for three years and my mom was her primary caregiver, first at home and then in a facility. The only reason my mom moved my grandmother into a facility, was because she became deathly ill from caregiving after one intense year of support. I recall speaking to an ICU nurse caring for me, who told me my mom had pneumonia which turned into sepsis and she was dying. Frightening news to receive when across the Country. Thankfully my mom was treated aggressively and did recover but her recovery took over a year. In any case, my grandmother's illness was so devastating for our family that when I entered my counseling doctoral program I decided my area of research interest would be caregivers of older adult family members. Who knew years later that I would have another experience with caregiving..... caring for Mattie battling cancer. Though caring for an older adult is different than a child with cancer, there are enormous similarities and I would say the impact on one's physical and emotional health have great overlaps. 

Thursday, January 19, 2017

Thursday, January 19, 2017

Tonight's picture was taken in January of 2006. We were in Mattie's preschool class, and next to Mattie was his teacher, Margaret. Margaret was an outstanding preschool teacher and we loved her so much that we became instantaneous friends. It is hard to believe that both Mattie and Margaret are now dead. The activity you see in this photo, was something I decided to do. I wanted to have the kids decorate gingerbread houses. Margaret loved the idea and gave me her gingerbread house cookie molds to use. What Margaret did not know at the time was I NEVER HAD baked a house and assembled it myself from scratch before. So when I say this was a labor of love, I AM NOT kidding. They are much harder to put together than you think. I made the dough myself and the royal icing. I made two houses and the kids had an incredibly fun time decorating. So much so that other classrooms came in to participate! 

The finished products!
















Quote of the day: Stress is the trash of modern life-we all generate it but if you don't dispose of it properly, it will pile up and overtake your life. ~  Danzae Pace

Peter and I presented today with two of our researchers at the National Institutes of Health in Bethesda, MD. The NIH has trainings for pediatric oncology personnel every Thursday, and though the typical focus is ON THE MEDICINE, they invited us in to talk about the psychosocial standards of care and why they were important to establish. I led off the presentation with our story and why Mattie is our inspiration for changing the nature of psychosocial care and for the creation of the Mattie Miracle Cancer Foundation. 

I explained to the audience my love for photographing Mattie. I basically have an extensive photo documentation of ALL of his seven years, and I believe it is important to others to see these photos to help put our loss into context. I introduced this slide by saying that the if we factored in how much time a child spends receiving medical treatment and compared it to the inordinate amount of time a child and family manages the side effects of the medical treatment, then what one quickly surmises is that CHILDHOOD CANCER IS NOT JUST ABOUT THE MEDICINE. The medical treatment transforms children physical, social, emotionally, and cognitively and many times children are aware of their differences and aren't happy about it. Therefore psychosocial care is just as important as the medical care and I went one step further to say that without psychosocial care the medicine won't be as effective. Which is bold in a room of medical researchers!!! I gave them three examples of how understanding a child psychosocially can help with medical treatment and outcome. 

I explained that Mattie had sensory processing issues before his cancer diagnosis. As such he did not like tight spaces, loud noises and people in his space. In the lower right hand corner photo you see Mattie with his hands over his ears because he did not like the overwhelming sounds in the clinic. It would have been helpful if Mattie's treatment team understood and respected his sensory issues and planned accordingly in his treatment plan, but they didn't. Instead they insisted that Mattie could manage MRI's without sedation. Mattie attempted MRI's without sedation unsuccessfully EVERY TIME and the by-product was delayed scanning, and delayed scanning means delayed start of treatment. When dealing with cancer, you really want NO delays in treatment ----nothing that can cause cancer cells to continue growing and taking over. In addition, Mattie's bad experiences in scans made all successive scans impossible to do without sedation. Of course sedation comes with a risk every time you use it. So the moral of the story is spend the time understanding the psychosocial issues of a child. If that had happened in Mattie's case, scanning would have gone smoother, with less anxiety and more timely completions of the process. 

I love this slide because to me it captures the nature of childhood cancer perfectly. It isn't pretty and so much of what is unbearable has nothing to do with the actual chemotherapy infusions. But it is the aftermath of these treatments that produce psychosocial consequences on both the child and the family. Consequences such as depression, anxiety, pain, exhaustion, etc! None of these issues have quick fixes and instead I would beg to argue that these psychosocial issues become ingrained and permanently a part of one's body, mind, and spirit forever. 

Yet when you get to our psychosocial slide, look at how the tone changes. Mattie was smiling. Not that he wasn't contending with cancer, he was, but these diversions and activities were all extremely positive and gave him to the opportunity to be a child again. 

As the research indicates psychosocial care mitigates symptoms, pain, and fatigue and also helps children adhere to their medical treatments. The research is the research, but we are living proof of what these research findings are illustrating. Psychosocial care does improve one's quality of life, outlook on life, and I have to believe if your mood is stable you (patient and caregiver), you are in a better position to care for your physical health. 

Meanwhile as of this afternoon, DC is moving to a lock down status for the inauguration. This is a first for DC, because I have never seen such heightened security. It is almost daunting to be on the street. Concrete Jersey barriers are everywhere around me and our street is closed off to vehicular traffic and on some of our streets we are NOT allowed to walk on them either. 

This evening, I started hearing explosions. I have to admit I got terribly frightened and Sunny began to hide. Yet I could see fireworks through the reflection of glass on the high rises around me. Peter was able to capture some of the fireworks from our complex. 

These fireworks seeme louder than the fourth of July! I have no idea why. Maybe because I wasn't prepared for them, but the photographs are stunning. 

Last one!

Wednesday, January 18, 2017

Wednesday, January 18, 2017

Tonight's picture was taken in January of 2004. Mattie was a year and a half old and very ON! He loved boxes, playing with them, building and re-creating all sorts of shapes and structures. With Mattie there was no end to the possibilities and my biggest joke was that the boxes always entertained him more than the toy inside. 


Quote of the day: In times of stress, the best thing we can do for each other is to listen with our ears and our hearts and to be assured that our questions are just as important as our answers. ~ Fred Rogers


Mr. Rogers was brilliant. The questions are just as important as the answers..... as is being heard. When under intense stress, anxiety pops up and can take over. In fact the stress and anxiety maybe even more important to manage and respond to than the original issue that was presented. We literally waited the entire day to get my dad's CT results back. Honestly, does the medical system think people are just living a care free life until they bless us with a phone call? Of course NOT, we are waiting on the edge until someone decides to fill us in with test results. Thankfully whatever my dad's situation is, it isn't cancer. So we are all breathing a sigh of relief tonight. Since we know all too well what that road looks like.

In a way, the geographic distance between myself and my parents was probably beneficial today because I have a way of making doctors' offices very edgy. Because I persistently will drive each person crazy until I get results. My anxiety prevents me from waiting around! I understand the origin of this anxiety, but strangers do not and instead view me as difficult. I frankly don't care how you view me, I just want my questions answered. Mattie's cancer battle taught me SO MANY things about our health care system. It has many flaws, but one thing seems to be consistent..... if a diagnosis of cancer is probable from scan results then you are typically contacted and told right away. There isn't a wait a whole day for answers approach. By midday today when my mom did not receive a phone call about results, I took that as a good sign. But then again, I don't know their hospital system, and perhaps things work differently there. Nonetheless, I have tested my theory with myself, my lifetime friend Karen and now my dad. All of us are in different states and all of us did not receive testing results immediately. In all three cases, cancer was not the diagnosis. So I am sticking with my theory of bad news travels quickly. 

Meanwhile today I went to Mattie's school to work with a technology class who has taken on a Mattie Miracle project all semester. They are working to design some models with a 3-D printer for the hospital. For example a model of an MRI machine so children can touch it, ask questions, and learn about the process before a scan. As MRI can be daunting and intimidating. Any case I went through the motions today because my mind was else where and yet I really needed to concentrate because tomorrow we are presenting on Mattie Miracle at NIH and I am still desperately trying to wrap up plans for Tuesday's Roundtable! Wish me luck. 

Tuesday, January 17, 2017

Tuesday, January 17, 2017 -- Mattie died 383 weeks ago today. 


Tonight's picture was taken in January of 2005. This features another classic Mattie situation. Mattie loved bath time, so much so that after it was over, he wouldn't get out of the tub. Mattie never took a bath without a ton of toys in the bathtub with him. They weren't even tub toys, they could be vehicles, legos, or whatever he had in mind to build a play scenario around in the water.


Quote of the day: After you find out all the things that can go wrong, your life becomes less about living and more about waiting. ~ Chuck Palahniuk


Palahniuk's quote is so poignant. Anyone who has dealt with our health care industry knows all about the waiting game. You can get scanned and then have to wait what seems like an eternity to get the results. The stress of waiting for results can actually make you physically ill. It is hard to describe this unless you have been in such a circumstance. But for someone like myself who has seen the WORST go wrong (with Mattie getting cancer and dying), I find that I do live in fear that something bad is about to happen. After all, no one expects their six year old to visit the pediatrician with a sore arm, and a few hours later hear..... your child has cancer. This reality has changed my life forever, clouds how I look at every situation, and most certainly has taught me volumes about hospitals and their culture. 

Later this afternoon, my mom alerted me that my dad's doctor wanted him to have an emergency ct scan. Naturally that put all of us on the edge and until one gets results, the edge is where we will remain. I think not knowing sometimes is even worse than hearing the results. If that is even plausible. Not that there is much I can do, but being across the country is not a great place to be when issues arise such as these. I know all too well the power of support and what is needed to manage through these unbearable moments..... and here we wait.  

Monday, January 16, 2017

Monday, January 16, 2017

Tonight's picture was taken in January of 2005. Mattie was two and a half years old and full of spirit. I think this photos says it all. Mattie was never very far from where I was. If I was in the kitchen he wanted to participate and there were times I would lift him up to the counter so he could watch what I was doing. Mattie wasn't the kind of kid I ever had to worry about touching the stove or cleaning products. He seemed to understand those were off limits to him and not a good idea to touch. But check out that smile.... a look of mischief for sure!


Quote of the day: Far and away the best prize that life offers is the chance to work hard at work worth doing. ~ Teddy Roosevelt


It has been another whirlwind of a day. If it was a three day weekend, I would never have known it. This is the beauty and curse of running a non-profit. Everyday is a work day. If you stop working, so does the Foundation. The Mattie Miracle Roundtable is keeping me very busy with managing people and the logistics and it is hard to believe that a week from tomorrow the event will be occurring. Honestly when we thought up this notion last summer, we did not know how we were going to pull this off. It requires money, lots of planning, and people willing to participate. Not to mention congressional support to get access to a room on Capitol Hill. We are grateful that the American Cancer Society (ACS), the American Cancer Society Cancer Action Network (ACSCAN, the advocacy and lobbying arm of ACS), and Dominion Consulting are co-sponsors of our event. ACS and ACSCAN have generously given us 
$12,500 to make the Roundtable a reality and to run it as we see fit. Dominion Consulting is helping us with promotion of the event and providing two professional consultants to help moderate the day. All this support is very much valued and appreciated because it enables us to pull researchers, payors, legislators, and advocates together to brainstorm the implementation of the Psychosocial Standards of Care. 

Sunday, January 15, 2017

Sunday, January 15, 2017

Tonight's picture was taken in December of 2007. Again this was classic Mattie. Very eclectic if I do say so myself! Mattie was wearing a Santa hat, his Red Sox cap, sunglasses (inside!!), and was blowing his duck whistle which he got from a duck boat tour. It was a total look, but check out the shoes! On his right foot he was wearing one of his own shoes and on his left foot one of Peter's! He was clip clopping around our home this way and I felt it merited a photo. 






Quote of the day: An animal's eyes have the power to speak a great language. ~ Martin Buber


Sunny had his second session of training today. Last week he had a hard time adjusting to all the dogs and the space, but this week he seemed calmer and more relaxed. He did a great job and he particularly loved the obstacle course they set up for the dogs. At heart Sunny loves to RUN! He does it was ease and grace. However, when Sunny returned home he threw up something awful and has been listless ever since. He was this way on Friday too, but had a good Saturday. So poor Sunny may have a visit to the vet in his future if I don't see improvement tomorrow. There are so many reasons why dogs vomit, and not having been a dog owner before, I have no idea which is the explanation!