Tuesday, March 17, 2015

Tuesday, March 17, 2015 -- Mattie died 288 weeks ago today. 


Tonight's picture was taken in March of 2009, around St. Patrick's Day. Mattie received many wonderful holiday items from his care community and as you can see he decided to put all of them on and wear them to his hospital appointment. To me this is the quintessential St. Patrick's Day photo, which is why I typically post it on March 17th.  






Quote of the day: I decided to devote my life to telling the story because I felt that having survived I owe something to the dead, and anyone who does not remember betrays them again. ~ Elie Wiesel


I was invited to Mattie's school today to give a Mattie Miracle presentation to the fifth grade Daisy Girl Scout troop. The troop has selected the Foundation as their project in order to achieve their bronze award. This award is the highest leadership honor that a girl scout junior can achieve. Earning the Girl Scout Bronze Award involves a suggested minimum of 20 hours building a team, exploring the community, choosing a project, planning it, putting a plan in motion, and spreading the word about the project. 

There are many non-profits out there that this troop could have selected, so how did they come to choose Mattie Miracle? Well a major reason Mattie Miracle was selected is due to a young girl in the troop named Livi. Livi is Campbell's sister, and Campbell was one of Mattie's closest friends in kindergarten. Livi advocated our cause and the Foundation with her troop, and she clearly did a great job! We are very grateful for her courage and for giving childhood cancer a voice! Her decision was supported by the troop leader, Sue. One of Sue's daughters is in seventh grade, the same grade Mattie would have been in if he were alive today. Though Sue's daughter and Mattie were not in the same kindergarten classroom, they did know each other. Since Mattie's death, Sue has always supported the Foundation EVERY single year. Her girl scouts raise money through cookie sales and then donate this money to the Foundation in order for us to buy a Lego Raffle basket which is featured each year at our Walk. The girl scouts (different troops, but all led by Sue) have done this for the past four years! In addition, Sue also encourages the girls to visit Mattie's memorial tree on campus and to also make decorations for it especially during the Christmas season. One year they made decorative pine cone ornaments for the tree which were just glorious and special to see. Though Sue did not know Mattie, she is instrumental at helping us keep his memory alive in young minds and hearts. 

I had the opportunity to talk with 18 fifth grade girls today. I have never presented to a group this YOUNG before. Clearly I did not want to scare them, but instead I wanted to partially educate them and motivate them to want to participate in our upcoming Walk. Before I shared my PowerPoint slides with the girls, I started my talk by acknowledging that I knew that childhood cancer is a scary and sad topic. But I wanted to encourage them to look at this more broadly. I let them know that in life each of us is tested, challenged, and is faced with something personally very difficult. A crisis if you will. My crisis was childhood cancer. Each person's will be different. Unlike some people who believe things happen for a reason, or that we are only given things that we can handle, I told them outright that I do not subscribe to this philosophy. Instead, I said that sometimes things just happen. They aren't fair and they don't make sense. In a way they are out of our control. Yet it is under these most difficult times that we can also learn many things about ourselves and we find inner resources we did not know we have. I wanted them to know that they had such resources within themselves. I told them that through my story and photos today, they would hopefully see two things. These two things have enabled me to manage through very difficult times and it is my hope that they take these insights to heart and that it helps them in some way in the future. 

The two things that helped me through such a crisis is 1) community and friendship and 2) being able to help others. I explained to the girls that in times of great sadness and distress, that looking beyond one's self and reaching out and helping others can be very life affirming. 

I shared some basic cancer facts with the girls today. But the majority of my presentation involved a great deal of visuals. I figured this would be a more meaningful and less threatening way to cover material. But it was also a great way to capture our Foundation's activities. I started out with a slide depicting Mattie as a fellow "Saint." "Saint" being the school's mascot. I wanted the girls to know that Mattie experienced many of the things they did at the School and basically he was just like one of them. 

Then I created another slide that illustrated how childhood cancer impacts a whole community, not just one person or one family for that matter. All of Mattie's communities were touched by his cancer..... his preschool, his elementary school, his family and friends, Peter's work, and my work setting. What I wanted the girls to know was that cancer united ALL these communities together for a cause. Communities that normally wouldn't have associated with each other. Many of the people who met each other back in 2008, and were united by Mattie, still are friends with each other today. Even though they now have to cross communities to see each other!

I did not posted all of my presentation slides in the blog, I am only giving you a sample of them. I wanted the girls to understand some of the activities the Foundation is involved in and particularly what donor contributions directly support. Therefore, I highlighted the child life specialist position at Georgetown University Hospital that we have funded for four years, the free snack cart we offer in-patient families at the hospital, the item drives we run twice a year, the monthly nurse support group luncheons we have funded over the last three years, and our awareness work with school groups. This of course only focuses on our local work. 

Then I discussed with the girls how we raise the money in order to be able to accomplish all the things that we do to support children with cancer and their families. That led to a conversation about our annual Walk and all the activities associated with this event. We then discussed ways for the troop to get involved at the Walk and overall with the Foundation. 

I ended the presentation with taking a photo of the troop with our Foundation banner. This troop photo will be featured in our upcoming March newsletter. I also baked cupcakes for the girls. Cupcakes were Mattie's favorites! They were something he absolutely loved and when he was in the hospital, I used them as incentives to get him to participate in physical therapy. Though I did not share that story with the girls today, Mattie was well represented at this meeting through the cupcakes. 

The presentation was held in the school's library. I haven't been in that library since Mattie was alive. I used to volunteer in the library every other week when Mattie was in kindergarten. The librarians used to love me. Mainly because I was super retentive about cataloging and I could do it FAST. As I was in that space again today, it was as if I was transported back to 2007, when I had no idea what childhood cancer was much less what osteosarcoma was..... and I can assure you the world looked so much better through those glasses. 

Monday, March 16, 2015

Monday, March 16, 2015

Tonight's picture was taken in March of 2009. Mattie was outside the child life playroom at the Hospital and getting ready to participate in the ribbon cutting ceremony. When Mattie first arrived at the Hospital in July of 2008, there was NO child life playroom. Over the course of his treatment this wonderful space was built. This space became vital to our existence. Therefore when this special ceremony occurred, Linda (Mattie's child life specialist) invited Mattie to be one of the special ribbon cutters. Of course Mattie jumped at the chance. Linda knew Mattie LOVED a good task! 

Quote of the day: When I dare to be powerful----to use my strength in the service of my mission, then it becomes less and less important whether I am afraid. ~ Audre Lorde

There was a campaign going around Facebook today in the childhood cancer community called the "NCI Selfie Campaign." Childhood cancer organizations were asked to take part in this campaign to spread the message about the inadequate amount of research funding allocated by the National Cancer Institute (one of the Institutes of the NIH) to childhood cancer. Organizations were asked to take a "selfie" (which is a photograph that one has taken of oneself, typically taken with a smartphone or webcam and shared via social media) and hold up a flyer that contained a pre-printed message and send it out on Facebook and Twitter. So this morning, both Peter and I staged our own selfies. I did mine in Mattie's bedroom and Peter did his at work. 

I wanted the selfie to be meaningful. But I wasn't sure what I wanted in the backdrop of the photo! Then it dawned on me! What would symbolically convey Mattie's life? Mattie's clothing!!! So I pulled out his beautiful memorial quilt and I hung it on my closet door and then I began to tape photos of Mattie to the quilt. You can see the final product below! Yet for me it was a balancing act to hold my phone in one hand and try to pose for this photo and not move. But I somehow managed! My goal was to be looking at Mattie in the photo! Hopefully that was conveyed! 

When I posted the photos of Peter and me, I also included the following message below on Facebook! Though the nature of the campaign is to raise awareness for funding of medical research, Peter and I think it is always VITAL to spread the message of psychosocial support. Funding needs to be raised for this as well and this type of support much be provided to children and their families in order for an effective health outcome to be achieved. 

What was posted on Facebook.......

Mattie Miracle Cancer Foundation unites with the cancer community today in support of the position that more must be allocated for childhood cancer research at the National Cancer Institute (NCI). The current 4% won't do! NCI would argue that "the 4% statistic does not reflect its entire contribution to understanding and treating childhood cancer and that the NCI invests nearly half of its $5 Billion budget for cancer research that is not specific to any type, but includes many that affect children."

However, the facts speak for themselves..... 15,000 children are diagnosed with cancer a year, 2000 children die from the disease a year, and there are 300,000 childhood cancer survivors in this Country who are dealing

with late effects (e.g., infertility, heart disease, diabetes, hearing loss, psychosocial issues, and secondary cancers) from the toxic treatments they received. We have to do better for our children and their families.

Pictured with our 4% sign is Mattie's memory quilt. His quilt and memories are all we have left of our son. For us and so many other parent advocates, childhood cancer is very real and deserves more than 4% of National attention and funding. For us childhood cancer is much more than just about the medicine.

Sunday, March 15, 2015

Sunday, March 15, 2015

Tonight's picture was taken in March of 2009. As you can see I am holding up a large pretzel. That may not look odd to you but of course there was a story behind the pretzel. That day our friend Ann was coming to visit us. Ann would always ask Mattie what he wanted before she came. That day Mattie said he wanted a large soft pretzel. Kind of like the type of pretzel one would find at a vendor on the streets of NYC, but not as easy to find in Washington, DC. I am not sure how Ann tracked down the pretzel, but as you can see this brought a smile to Mattie's face. Getting Mattie to eat anything was a feat, so when he requested something, those of us who were closest to the situation really jumped through hoops to try to accommodate such a request. 


Quote of the day: The greatest fine art of the future will be the making of a comfortable living from a small piece of land. ~ Abraham Lincoln


Peter and I spent the day brainstorming the Foundation's Walk that is coming up on Sunday, May 17th. When we recently met with the Walk planning committee we discussed some changes to the event. So we really have been trying to think these ideas through before I meet with a smaller walk planning group tomorrow to flesh out the details. We have really needed this weekend to recuperate and honestly I have felt a pervasive tiredness that has been lingering for months. I worked through last summer on writing two book chapters and then hit this year hard with Foundation activities. Not having any down time has been very problematic and I can only hope that this summer is different.  

This afternoon, we went out to buy more bird seed..... something that we do each weekend! While walking through Home Depot, I was excited to see that their garden center is coming to life!!!! They were featuring solar garden lights and one that looked like a big orange sun! So we bought it and stuck it in our commons area tonight. It needs to charge tomorrow in the sunlight, but from Mattie's bedroom, I can already see it glowing in the darkness tonight. It seems rather symbolic that this orange globe is sitting in Mattie's memorial garden. 

Saturday, March 14, 2015

Saturday, March 14, 2015

Tonight's picture was taken in March of 2009. Mattie was home between treatments and doing something he loved to do.... playing in his sand box. Even if it was cold outside, that did not stop us or him! Peter pulled out one of our space heaters to prevent Mattie from catching a cold. As you can see Mattie had a big smile on his face and enjoyed being outside and doing something that was "normal." Mainly because when in the hospital Mattie rarely spent time outside, and he certainly had no sand box time! The everyday tasks that we usually hate or take for granted become gifts to us when we are sick or isolated in a hospital or institution. I know Peter and I longed for being able to have the independence to live in our own home, cook our own meals, drive our own cars, and even clean up after ourselves. 


Quote of the day: Don't cry because you've failed from something, try to convince yourself that failing is the one of your delayed success. ~ Rizky Adam Rifai

We are both so tired today, after an incredibly long week, that we both were unable to do much today. So instead, I am going to share with you some photos from our trip home yesterday. As we were flying over Richmond, VA, I noticed something sparkling outside the plane window. Upon closer inspection, the sparkling was SNOW. LOTS of it too! It was hard to capture in a photo, but all that white stuff you see is snow.

As we approached Washington, DC, the city was lit up like a Christmas tree. It was easy to spot the Kennedy Center, right by the water. 

Then we approached the Lincoln Memorial and the Washington Monument. You can easily see the Lincoln, but the Washington Monument it is a bit harder to see (though it is lined up with the Lincoln). The Lincoln Memorial is in the six o'clock position and the Washington Monument is at the twelve o'clock position! It was a lovely welcome back home to see these sites last night. 

Friday, March 13, 2015

Friday, March 13, 2015

Tonight's picture was taken in March of 2009. Mattie was home between treatments, which was a rarity. We were upstairs and playing in his bedroom, which had very little space to move in because his room was packed to the gills with gifts and toys. All wonderful things he accumulated from the hospital and his care community. Each admission brought more and more items into our home. Which were needed and appreciated by Mattie to keep him engaged and stimulated but they were beyond overwhelming for me to process and keep organized. Since Mattie had NO outside stimulation, including NO school and few if any playdates and visits, these material items became vital to his existence. Right next to Mattie's foot in this photo was an aeromattress. It was on the floor because this was where I slept when Mattie was home.... right by his side, in his room. Mattie needed constant supervision and assistance, even in the middle of the night. Particularly because he was hooked up to IV's and all sorts of pumps. 


Quote of the day: I never made one of my discoveries through the process of rational thinking. ~ Albert Einstein

At the crack of dawn this morning, Peter and I got up, ready, and checked out of our hotel and headed to the conference hotel. We were on point to display our research poster from 7am until 1pm. Each time we take on such an adventure, it is a learning experience, in which we come away with lessons learned and next steps. I can summarize the experience by saying that we were the only childhood cancer oriented poster at the whole conference, but then again, there were NO childhood cancer sessions or tracks at the conference. Meaning we were the ONLY childhood cancer focused type presentation at the whole conference!

The property this conference took place at in Hollywood, Florida was noteworthy. It was called the Diplomat. What a resort property by Westin!!! The irony is just about a block away my cousins used to have a condo! Peter and I took Mattie to this condo twice, so in many ways being here was even bittersweet. As we passed the condo today, we couldn't help but think about those days and it was hard to accept that Mattie was gone. It is a hard pill to swallow that our son is gone and while we have to accept this reality, a major cancer organization doesn't even seem to address childhood cancer issues. As if they are non-existent! Accept of course we know better.


This was one of the doors in the Westin. Check out the beach ball that goes around with you! It is part of the decor and permanent display. 

The beauty of the Lobby..... Open, bright, and with a glorious fountain!

After the poster session today, we met with my long time friend and colleague Nancy and her husband, Marv for lunch. They live part of the year in Florida and the other part in New York. Nancy and I met years ago through our mutual work at a professional association and became instant friends. When Mattie was diagnosed with cancer, Nancy became a loyal and faithful blog reader, and remains one to this day. As I tell Nancy often, she is my biggest fan and cheerleader. In addition to a lovely lunch today, Nancy surprised me with several gifts. One of which was beautifully touching, because it is acknowledging Mattie's 13th birthday which is fast approaching. A 13th birthday can have great significance, from a spiritual and societal perspective. It is hard to know that Mattie never made it to this mile marker, and that we have to carry on his legacy without him. I appreciate Nancy understanding and acknowledging this in so many symbolic ways. 

I end tonight with a photo that Peter captured outside our plane window. In fact I am typing this from the plane. This is novel to me. But Peter connected us to the internet on the plane, which I greatly appreciate, because by the time I get home I have a feeling I won't be in the mood to write a blog. 

Thursday, March 12, 2015

Thursday, March 12, 2015

Tonight's picture was taken in March of 2009. Mattie was in the child life playroom at the hospital and doing yoga on a wii entertainment system. Mattie's nurse, Katie, and Peter captured several photos that day. They were both totally impressed with the fact that despite all of Mattie's surgeries and weakened conditioned he was able to balance and do many of the yoga positions with such grace and beauty! But that was Mattie. There was a great deal of true strength and awesomeness in his character. Check out the position of the character on the screen and how Mattie was mimicking the position on the wii board. Keep in mind because of Mattie's surgeries he couldn't raise his arms ABOVE his head anymore!!!!!!!!!! Also know that if Mattie stepped off the board he would have fallen. Mattie couldn't walk either (after his limb salvaging surgery in October of 2008 on his right leg). So the fact that he was balancing on the board like this was a feat of grand proportion. 


Quote of the day: You have power over your mind - not outside events. Realize this, and you will find strength. ~ Marcus Aurelius


This afternoon Peter and I are flying to Fort Lauderdale, FL. We are attending the National Comprehensive Cancer Network Conference (NCCN) in Hollywood. NCCN, is a not-for-profit alliance of 25 of the world's leading cancer centers devoted to patient care, research, and education, dedicated to improving the quality, effectiveness, and efficiency of cancer care so that patients can live better lives. 

On Friday, we have to be at the conference center at 6:45 am to set up our research poster and the session starts at 7am. We have to be on hand throughout the day until 1:15pm to present and answer questions. So Friday will be a full day and a whirlwind trip, since we fly back to DC that evening! I am signing off to pack and get ready for our trip! I will report back tomorrow night! 

Wednesday, March 11, 2015

Wednesday, March 11, 2015

Tonight's picture was taken in March of 2009. I will never forget that particular evening. The hospital gave Mattie special tickets to the circus. Box seats to be specific! We had a private box all to ourselves and literally this was our first time visiting the circus. Peter and I hadn't seen the circus since we were children either, so in all reality it was a novel experience for all of us. That evening, Peter and Mattie went around to the shops and Mattie got a few novelty items....things that glowed or lit up. To this day, the twirling thing that was sitting in Mattie's lap is still sitting in his room on display. 


Quote of the day: Hope itself is like a star - not to be seen in the sunshine of prosperity and only to be discovered in the night of adversity. ~  Charles H. Spurgeon

Tonight's picture was taken in December of 2009. Mattie had died that September, and that was my first Christmas without him. Next to me was my 85 year old friend, Mary. Mary had just lost her husband in October of that year, so it was her first Christmas without him. In a way Mary and I were both traumatized that holiday season and it was through our losses we became friends. 

When Mattie died, I began to spend a lot of time with Mary because her husband was quite ill and since I had just helped Mattie die, I was quite skilled at it. I also did not need much sleep back then. My body was conditioned on needing only about three hours or so of sleep a night. I managed like this for over a year. It is absolutely remarkable what the body can become conditioned to! It was through helping Mary's husband, that I also got to know Mary very well. But Mary and I also bonded over the fact that she lost a son to cancer. 

I am posting this photo of me with Mary tonight because today marks the one year anniversary of her death. It is hard to imagine that an entire year has gone by already. I do not know where the time has gone, because it seems like just yesterday she were here. Throughout this entire winter, I have remembered Mary. I do this each day when I look out my window and I see the garden hooks I bought. These hooks hold several bird feeders which I got for her toward the end of her life.... in hopes she could see them and watch the birds feeding off of them. Now when I see the birds stop by and visit the feeders, perched in Mattie's memorial garden, I also think of Mary. 

Tuesday, March 10, 2015

Tuesday, March 10, 2015 -- Mattie died 287 weeks ago today. 

Tonight's picture was taken in August of 2009. Mattie always wanted a ride-on vehicle and when he was healthy my reaction to that was simply, "no." It seemed too costly, not practical, and this was only the top two reasons on the "do not get list." However, when you find your child is dying from cancer, it is funny how your perspective quickly changes. Since this was on Mattie's wish list, this list was quickly granted. Mattie named this vehicle that my parent's gave him, "Speedy Red." Since Mattie was weak and was attached to all sorts of IVs and oxygen, there was no way I was going to let him operate this without me on it. He tolerated me with him for a while until he got the hang of using a gas pedal and a break. But then after that he really wanted the independence of driving by himself. So if you can picture him driving and me running around after him, that was the scene in our commons area! 


Quote of the day: There are moments when I wish I could roll back the clock and take all the sadness away, but I have the feeling that if I did, the joy would be gone as well. ~ Nicholas Spark

Today was day two at the "Comprehensive Cancer Care for Children and their Families" workshop sponsored by the Institute of Medicine and the American Cancer Society. Peter and I attended this workshop for two days. As last night's blog reflects, I delivered a speech at this workshop on Monday and tonight's photo shows four out of our five core psychosocial team members who are working on the National Psychosocial Standards of Care project who were in attendance. From left to right are: Peter, Dr. Anne Kazak (Nemours), Dr. Mary Jo Kupst (Medical College of Wisconsin), Dr. Bob Noll (University of Pittsburgh) and Dr. Lori Wiener (National Cancer Institute, NIH).

Our core team members each highlighted psychosocial research, but within their presentations also talked about the standards of care project as well as made it known to the audience that Mattie Miracle was the impetus for these Standards and is the significant funder of the project. Clearly Peter and I are motivated to do this work to help other children and their families, but of course what lies at the heart of what we always do is Mattie. What Mattie suffered and endured was super human and almost impossible to describe. In fact, I think that is most likely why when given three minutes in front of this large audience on Monday I elected NOT to go into all the gory details of Mattie's journey. If I did, that would have taken more than three minutes alone and then I would never have gotten any of my messages across. Mattie's battle was painful, significant, and psychosocially brutal. It will remain with us always and I suppose that is why on some level we feel compelled to correct a wrong.

At the workshop yesterday we also heard from Melinda Marchiano. Melinda is a lymphoma survivor and also wrote a book entitled, Grace: A Child's Intimate Journey Through Cancer and Recovery. I had the wonderful opportunity to talk with Lee (Melinda's mom) and Melinda today. Melinda's presentation was real, honest, candid, and inspiring. She did a beautiful job yesterday and as I told her today, no matter who you were in the audience, her message resonated with us. The misnomer our society has is that once treatment ends, you are cured and everything returns to normal. However, that is the furthest from reality. The treatment itself can lead to many late effects (side effects) which can be life altering and deadly (stroke, heart disease, infertility, hearing loss, high blood pressure, diabetes, and secondary cancers). But Melinda also clued her audience into the psychosocial picture of being a survivor. The pattern of not eating that developed while in treatment was a contributor to her developing an eating disorder. Once off treatment, she was not only a survivor, but she then had to find her way through recovering from an eating disorder. 

Needless to say the voice of parent advocates and that of Melinda's were crucial at this workshop. Though researchers and clinicians have the best of intentions and maybe the experts in their fields, they really still lack the personal insights we have of living through this ordeal. As the workshop very poignantly pointed out..... it is vital to give a voice to the child, the family, and the clinician in cancer care. All three play a role and when collaborating together, most likely optimal care is achieved. 

Monday, March 9, 2015

Monday, March 9, 2015

Tonight's picture was taken on August 9, 2009. Mattie was in the Lego store of our shopping mall. The special part about this was he had the store ALL to himself and got to work with two master Lego builders. This special visit was arranged for him by Linda, Mattie's child life specialist. Mattie never got the opportunity to have a wish granted through the Make-a-Wish Foundation because Mattie never reached remission. He went from treatment right into a terminal status. Linda took it upon herself to design and get a wish granted for Mattie on her own. Mattie loved the whole experience of wheeling around the Lego store and having the opportunity to build WHAT EVER he desired. He could have chosen a Lego kit, but the irony was he built every kit in the store that year! Legos was our form of therapy and whether we were home or in the hospital, we always had Lego kits with us. So on that special Lego night, Mattie decided he wanted to design a NYC taxi cab from scratch. Mattie was quite familiar with them after visiting Sloan Kettering twice! The Lego Masters helped Mattie design this creation from their HEADS! To this day, this Lego taxi sits in our living room on display!

The Final Product (on the left)!!!

















Quote of the day: Nothing is ever really lost to us as long as we remember it. ~  L.M. Montgomery

It has been a very long day today. I will share photos and other thoughts tomorrow. For tonight, I will share the speech I gave at the Institute of Medicine's Conference I delivered today. I have to say as time moves further away from when Mattie died, it does get harder for me to talk about him in public, especially when I know I have to make a speech that has an agenda associated with it. I was only allotted three minutes, and three minutes isn't that long. So somehow I wanted to craft something meaningful to Mattie and also do his Foundation justice. Hopefully my words accomplished that today...............................

Good Afternoon. My name is Victoria Sardi-Brown and I am the co-founder and President of the Mattie Miracle Cancer Foundation. It is an honor to be in the presence of so many distinguished professionals and of course my fellow cancer advocates.

In 2009, my husband, Peter, and I created a 501c3 called the Mattie Miracle Cancer Foundation in memory of our 7 year old son Mattie, who lost his 14 month battle with osteosarcoma. Mattie endured 9 months of high dose chemotherapy, three limb salvaging surgeries, a sternotomy, experimental immunotherapy, and radiation. During that time Mattie was transformed from an active and happy child to one who was unable to walk and function independently.

As a society, we are conditioned to think of childhood cancer as a physical disease, but it is much more than that. In fact childhood cancer is not just about the medicine as I learned firsthand when Mattie was diagnosed during treatment with clinical depression, anxiety, and medical post traumatic stress disorder. Diagnoses which warranted the use of psychotropic medications. As Mattie's parent, I had to learn that I wasn't only fighting for his life but in all instances I was also advocating for his mental health needs, for ways to manage his excruciating physical pain, and in the process I was confronted with a health care system that questioned whether a seven year old could really be in that much pain, so much pain that Mattie did not want to eat or even drink fluids. Instead I was encouraged to consider that Mattie was simply addicted to pain medication and his refusal to eat was just manipulation. Now Mattie may have been precocious, but HE WAS ONLY SEVEN! In Mattie's 14 month battle, he never received a distress thermometer or any other standardized assessment tool to assess his pain and suffering and neither did I as his parent who was caring for him full-time.

Unfortunately we later found out that, YES indeed, Mattie could be in that much pain because his cancer metastasized throughout his body only six weeks off of chemotherapy. The torment of watching Mattie die in our arms has been the driving force for why Peter and I created the Mattie Miracle Cancer Foundation. We believe it is vital to bring attention to the psychosocial needs of childhood cancer and to enhance access to these services.

From our experiences caring for Mattie, was born our vision to create and implement a national psychosocial standard of care for children with cancer and their families. Standards that would insure that all children and families would have access to a minimum level of care from the time of diagnosis, throughout treatment, and into survivorship or end of life and bereavement care. 

If there is nothing else you glimmer from my words today, I hope I leave you thinking about the following. We know from the IOM 2008 report, Cancer Care for the Whole Patient, and the IOM 2014 report, Dying in America, that optimal care must include psychosocial care.... and that integrating psychosocial care and palliative care are vital along the entire cancer care trajectory for positive health outcomes.

Yet it stuns me in the 21st century that there is a disparity in the psychosocial care and services offered among hospitals across the Country. When we talk about cancer care in our communities and when we lobby for this care for our children, the predominant focus is typically on medical care and drug development. Yet any of us who has helped a child endure medical treatment knows that there are day to day issues that arise that are just as complex and just as heartbreaking to manage such as when your child tells you he feels ugly, that no one wants to be his friend anymore because he is so different, or that he feels incredible physical pain and is screaming uncontrollably or worse when he tells you that he knows he is dying. When we talk about cancer care in our communities and when we lobby for this care for our children we must remember that cancer care is much more than just about the medicine. It must integrate the psychosocial distress and pain management needs of the patient to be effective and this mindset change is the responsibility of all of us.  

Sunday, March 8, 2015

Sunday, March 8, 2015

Tonight's picture was taken in August of 2009. As you can see Mattie was having a difficult time breathing by this point and needed constant oxygen. Despite the fact that cancer was taking over his body, he still played and wanted to engage with us until the very end, until it was no longer possible. But cancer definitely changed Mattie from being a happy and social little boy to one that was very sad, anxious, and preferred isolation. It took a great deal of strength for both Peter and I not to lose it at times because watching this tragedy unfold right before our eyes each day was unbearable. 


Quote of the day: It scares me how hard it is to remember life before you. I can't even make the comparisons anymore, because my memories of that time have all the depth of a photograph. It seems foolish to play games of better and worse. It's simply a matter of is and is no longer. ~ David Levithan


Peter and I have a busy week coming up. Monday and Tuesday we will be attending the Institute of Medicine's conference in Washington, DC and then on Thursday we fly to Florida and we will be there for one night to present our research poster regarding our National Psychosocial Standards of Care project at the National Comprehensive Cancer Network conference. Somehow it seems like a whirlwind of a week, on top of a whirlwind of a year. I am not referring to just 2015... I still seem to be catching my breath from 2014!!! This afternoon, our head psychosocial researcher is coming to stay with us for two days, which is why I posting today's blog early! Tomorrow, I will share with you the speech I will be delivering at tomorrow's conference. 

Today I received two glorious photos from my friends Denise and Dave. They are visiting Hilton Head and were thinking of us and Mattie. Clearly these are VERY Mattie type photos! To me this screams out..... the Mattie Miracle Sun!!! Mattie loved drawing the sun and he loved bold orange colors. Which is why the Foundation's symbol became the sun and our colors are predominantly orange and red.

Denise and Dave started their day with the sun and ended their day with a wonderful "Mattie Moon!" I am very touched in a way that so many people now look at the moon and refer to it as a Mattie Moon! What better way to remember and honor such a special boy? Mattie Moon has become a part of our community's common language. We all know what it symbolizes and we look up to the sky in hopes of seeing the bright moon that will help ground us and remind us that on some level Mattie is always present with us.