2016 Walk & Family Festival --- an $85,000 success

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.

As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter

The Mattie Miracle Cancer Foundation celebrates its 6th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

September 26, 2016

Monday, September 26, 2016

Monday, September 26, 2016

Tonight's picture was taken in October of 2004. Mattie was two and a half years old and this was his first Halloween out trick or treating. Mattie was a bit intimidated by the noises and kids running around, but he did take it all in. We went trick or treating in a DC neighborhood, in which the local fire fighters came out to greet kids and kids were allowed to check out the fire truck. A Mattie favorite!

Quote of the day: Tell me and I forget, teach me and I may remember, involve me and I learn. Benjamin Franklin

This quote is so perfect for me today! The Foundation changed its newsletter format starting in July. However, despite testing and double testing it before it went out to 1,800 supporters, there were problems with all my web links. I was so upset by this especially since the links worked in my preview mode. Thanks to Peter..... he worked out this bug with the technology folks at Contact Contact (our on line newsletter company). However, as the writer of the monthly newsletter, I need to understand how to use the technology. Peter has tried to tell me about the technology, and he has even taught me many times how to use it. But today we worked on the newsletter together, and I finally got how to update our Foundation's website and how to integrate these updates into our newsletter. So hopefully the September newsletter will be going out this week and all the links will be working! 

My friend Heidi came to visit us today. We got together to celebrate her birthday. Check out Sunny's greeting of her! Heidi will be taking care of Sunny this week when we head to Indiana to attend a conference. Heidi has a dog named Fenway, and it is my hope Sunny enjoys this companionship! 

September 25, 2016

Sunday, September 25, 2016

Sunday, September 25, 2016

Tonight's picture was taken in October of 2004. To welcome in the Fall, we took Mattie to several Fall festivals around our region. Practically one every weekend. The particular festival pictured here was in Leesburg, VA, and what I loved about it was that they had a petting zoo for kids. As you can see Mattie was very curious about this sheep! Animals, especially large ones, can be intimidating to children. Mattie was cautious, loved observing them, and really wanted to get to know these animals. 

Quote of the day: Tired, tired with nothing, tired with everything, tired with the world’s weight he had never chosen to bear.   ~ F. Scott Fitzgerald

For the past several weeks, I have been very busy with Sunny. He keeps me up, outside, and walking. However, this past Friday, I had a caucus to attend and luncheon. Which meant that I had to sit for several hours in air conditioning and then stand for the luncheon.... in more air conditioning. This is problematic for me. Many of the intense pains I had been experiencing for months prior to getting Sunny had begun to subside thanks to my walking routine and moving away from constantly sitting at a desk. I am not sure how one day away from this routine could impact how I feel, but it has! I am back to feeling achy all over, unable to find a comfortable position, and as such it affects my ability to concentrate and focus on anything. 

That is just the physical result of Friday, but of course there is a psychological component to Friday as well. It is hard at times for me to see that only the biomedical components of care are discussed and these issues SOLELY get the ears of legislators. In addition to that frustration, I find that each year we attend the caucus the message is always the same. There is an update on the medicine, with a discussion of the hope for a medical break through and the elusive CURE. A word I can't stand, because once cancer is a part of your life, it isn't going away. There is always the threat of recurrence, not to mention secondary side effects and psychosocial concerns. Part of the issues that the medicine faces is that  there isn't just one type of childhood cancer, there are hundreds and because the biology of childhood cancer isn't well understood, two children could have the same type of cancer, but respond differently to treatment. It makes for finding better treatments elusive if not impossible. After all, we have made very little progress from year to year. Keep in mind the FDA approved ZERO new drugs for childhood cancer this year, and only three new drugs in the last twenty years. Drugs that aren't targeted to all forms of childhood cancer either!

So why don't people advocate for strategies and services that can help in the here and now? I HAVE NO IDEA. It makes sense to discuss psychosocial care and invest in this care because it is this support that helps sustain the medicine and enhances the quality of life of children with cancer and their families. Psychosocial care isn't only needed during treatment, it is needed post treatment in survivorship, it is needed if there is a recurrence, and it is certainly needed at end of life and bereavement care. My running joke is that I will always have a job, because my job is to change a societal mindset and that kind of change moves at GLACIER speed. 

This coming week, Peter and I have been invited to Indiana to receive an award at a National nursing conference. We are very honored to be the proud recipient of this award from the Association of Pediatric Hematology/Oncology Nursing, an organization that was our first professional endorser of the psychosocial standards of care. It is very generous of them to finance our travel and hotel stay as part of this award package and we look forward to meeting the Association leaders and thanking them in person for their support of the historical psychosocial standards of care! 

September 24, 2016

Saturday, September 24, 2016

Saturday, September 24, 2016

Tonight's picture was taken in October of 2004. Mattie was two and a half years old and was on a preschool field trip to Butler's Orchard in Maryland. This was Mattie's first experience with hay and a barn. Kids were running around, jumping, throwing hay, and having a ball. Mattie did not care for noise or too much commotion back then. Yet I was able to convince him to come in the barn for a little bit and to experience the hay. As Mattie got older, he truly loved this barn. 

Quote of the day: All his life he tried to be a good person. Many times, however, he failed. For after all, he was only human. He wasn't a dog.Charles M. Schulz

Our collie friend, Rose, emailed me a photo of her newest collie rescue. This is Rocky. Rocky is a tri-colored collie. He is four years old, neutered, up to date with shots, and is very friendly! Rocky is well behaved and responds to commands. 
Rocky is in need of a forever home. It is hard to believe that this cutie isn't in a loving home now. We met Rocky last weekend! He got along great with Sunny. 
This is a photo of Rocky meeting a local neighborhood dog. 

Rose is a wonderful find. We got connected with her through a mutual friend. Rose has agreed to watch Sunny during the holidays for us. Sunny is SO social, that I truly can't imagine putting him in a more institutional setting while we are away. I do not think he would thrive  in such a setting! Sunny requires a lot of attention and love and we already know that Sunny gets along with Rose's collies. 

It was a cloudy day, but Sunny makes it sunny inside! It isn't unusual for Sunny to lie on his back. When he does this around us, it means he really wants us to rub his tummy! 
Isn't he a cutie?! I walked Sunny on the National Mall today, and I can't experience a walk without someone stopping me and asking.... "what type of dog is this?!"

This is one of my favorite Sunny moves! I entitle it "downward dog!" Sunny doing yoga!!! We did not teach him this, it is something he does to stretch his body after rising from a sitting position!

September 23, 2016

Friday, September 23, 2016

Friday, September 23, 2016
Tonight's picture was taken in October of 2004. That day, Mattie's preschool went on a field trip to Butler's Orchard. The hay wagon ride took us right into the pumpkin field. I snapped this photo of Mattie. Ironically, a few years later, we brought Mattie back to this same spot and took the photo below. I remember snapping that photo and to me that photo is famous, because I associate it with Mattie Miracle. That pumpkin shot is on our website and in all of our conference PowerPoints!

Taken in October 2007. The face of Mattie Miracle!

Quote of the day: Bitterness is like cancer. It eats upon the host. But anger is like fire. It burns it all clean. Maya Angelou

Mattie Miracle attended the 7th Annual Childhood Cancer Caucus on Capitol Hill today. We heard from the Caucus Co-Chairs (Rep. Michael McCaul, Rep. Chris Van Hollen, Rep. Jackie Speier, and Rep. Mike Kelly), medical leaders in the field, as well as cancer survivors. Survivors did a beautiful job in a short period of time describing the long term medical effects and social-emotional struggles they continue to face after the treatment is over. As one survivor said..... childhood cancer is a LIFETIME DIAGNOSIS.
Mattie Miracle stands firmly behind the fact that treating childhood cancer effectively means discussing BOTH the medicine and psychosocial support. Yet these two aspects of care continue to be compartmentalized and as a result comprehensive cancer care can never be effectively achieved. If there is any doubt about this just listen to a childhood cancer survivor and his/her family for five minutes. The number one issue ALWAYS discussed is the social, emotional and psychological consequences of the treatment!
CHILDHOOD CANCER IS "NOT JUST ABOUT THE MEDICINE" and it is Mattie Miracle's mission to educate the community, legislators, and providers to this reality!
There were multiple congressional greetings today. The first one was given by Rep. Michael McCaul (R-TX).
The second greeting was given by Rep. Chris Van Hollen (D-MD).
An audience of about two hundred people heard from 3 cancer survivors:

Luke Gidden, Osteosarcoma

Sydni Jankowski, Leukemia

Greg Aune, Hodgkin's Lymphoma
Mattie Miracle could definitely add to this list of problems, since there is NO mention of the complexities of psychosocial care and the importance of implementing a standard of psychosocial care at every treatment site (so that children and families have access to a minimum level of care, care which can positively impact medical outcomes). Not to mention the challenges associated with the reimbursement of psychosocial care.

For those of you interested in learning more about the STAR Act, I encourage you to check out the link below. Mattie Miracle is proud to have added a mental health/psychosocial piece to this legislation (pp. 28-34)

Three dedicated cancer dads and advocates, all of whom lost a child to cancer.

Joe McDonough, Peter Brown, and Jonathan Agin

September 22, 2016

Thursday, September 22, 2016

Thursday, September 22, 2016

Tonight's picture was taken in October of 2004. I went on a field trip with Mattie's first preschool to Butler's Orchard in Maryland for a hayride and to visit the pumpkin patch. Mattie absolutely LOVED the hay ride, jumping in hay, and seeing a field full of pumpkins on the vine. 

Quote of the day: Things which matter most must never be at the mercy of things which matter least. Johann Wolfgang von Goethe

I had the opportunity to have lunch today with a friend who is battling breast cancer. Naturally there has been a great deal for her to adjust to, not to mention the impact of her treatment on her entire family. However, while talking today, what caught my attention was what she feels cancer has taught her. It has taught her exactly what Goethe quote refers to..... to focus on what matters most in life. Now that she is going through treatment, she has more time to focus on herself and those in her life. When healthy, we really push ourselves to work that extra hour, accomplish as much as possible, and unfortunately with all this pressure something has to give. What usually gives or is compromised is connecting with family and friends, because we think, there will be time later for this when things lighten up in our lives. CANCER is the universal eliminator, the disease that clears the deck of everything expendable and unimportant. 

I was able to relate to what my friend was saying because I lived through Mattie's battle and saw how present focused I became. Actually, part of me is this this way even today. I really refuse to do much long term planning anymore. I think once you lose a child to cancer, your future dies, and therefore I find that I have no interest to dwell over future plans, and do drag my feet when it comes to planning anything further than a week out. I assure you I wasn't like this before Mattie's cancer. This is just one of MANY psychosocial issues that childhood cancer left me with, and I wasn't even the patient. 

This afternoon, when I came home after visiting with my friend, Sunny and I went for a walk. In total we walk about 7 miles daily. This is what Sunny looks like after a walk. While I was working, I had Sunny on one side of me and Indie on the other! 
Can you see Indie? She is sitting on a chair getting the afternoon sun. In three weeks time, Indie has now officially adjusted to Sunny. She doesn't hid, freely plays and walks in front of him and even drinks out of his water bowl. I think this co-existence has occurred so soon because of Sunny's disposition. He seems to read people and animals well and adjusts his behavior accordingly. Sunny has been very patient, gentle, and friendly with Indie. I am so proud of Indie for responding! 

September 21, 2016

Wednesday, September 21, 2016

Wednesday, September 21, 2016

Tonight's picture was taken in September of 2005. To me this was CLASSIC Mattie. Mattie loved to climb up and down the stairs, not using the stairs, but clinging to the stair rail. At first I was afraid Mattie was going to fall, but I learned pretty early on that Mattie was cautious and did not take on challenges he did not think he could complete. The beauty of Mattie was he always made me see the world in a different way, and after all why go down the stairs in a conventional way. 

Quote of the day: There is no medicine like hope, no incentive so great, and no tonic so powerful as expectation of something tomorrow. ~ O.S. Marden

On my Facebook page the other day, a fellow cancer mom attached the link below to a blog posting entitled, "As Strong as the Weakest Link." It was a guest posting written by a mom whose child is now a cancer survivor. I attached the article below in case you want to read it for yourself. But in a nutshell, the take away lines that caught my attention were........

"I suppose I created a false reality for the rest of the world."
"I didn’t post about the friends who drifted away, who moved on with their lives."
"Instead, I created a false happiness."
"The truth is no one wants to see a sick and suffering child.  It is too hard, too heartbreaking and too emotionally draining."

What caught my attention about what this mom was saying was that she felt she couldn't honestly report how her day to day life was for her, her sick child, and her family while her son was battling cancer. She gave her support community updates through social media but in a way the messages were scrubbed or sugar coated. I absolutely understand her need to do this and also respect the fact that she is now expressing some of the psychosocial issues she faced and my hunch is still does today. 

Why do we sugar coat? We sugar coat because if you saw the actual reality of what we witnessed no one would read our postings! I would like to think that when I wrote Mattie's blog (while he was in treatment) that I was being somewhat honest with our support community. But I do know that I typically did not post disturbing photos on the blog (and believe me I could have posted many) and I still remember my running joke with some close friends. My joke used to be that I report about 80% of things on the blog, but the other 20% I kept to myself (I did this because what I would have reported would either be that horrific or in telling the reality or the truth, would have hurt my readers' feelings). 

I think as a society and even within the childhood cancer advocacy space, we are so used to just sharing the FACTS. The facts being the MEDICINE, and the medicine only. We seem very cautious about delving into how the medicine makes our child and us feel! Yet these are also vital facts that need reporting because how you are emotionally will translate into how you are physically. Any time a parent sheds light on psychosocial issues and concerns, I want to give them a GOLD star because it helps to break down some invisible myth that these issues are not as important as the medicine or worse that these issues don't exist. THEY EXIST and if we want them treated and managed effectively MORE OF US need to start talking about the psychosocial impact of cancer. We need to give words to the psychosocial pain and long term ramifications of treatment. No longer is it acceptable to stifle these thoughts and feelings, and yet what do I constantly hear parent advocates speaking up about..... the funding of biomedical treatment... in hopes for a cure.  

I am perplexed why fellow parents do not promote and advocate for comprehensive cancer care, to include psychosocial care. I am confused because these are the same people who live and breathe cancer and they know how cancer as affected their family emotionally, socially, and psychologically. What's the fear? Or is it that no one has given them permission to talk about these issues freely? Does admitting that psychosocial issues arise make the child/family seem weaker in the eyes of others?

So why isn't this freely discussed. I figure it isn't discussed for two reasons: 1) Childhood cancer is a nightmare of a topic. It is hard enough to talk about the physical issues and the treatment, but adding that the treatment makes children develop mental health issues would be deeply depressing and sad to hear about. We don't handle SAD well as a society and we certainly do not manage chronic and long term issues well either. Which is what psychosocial concerns tend to be. You can't throw a pill at a psychosocial problem, it is much more complex than that in order to produce effective change!  2) The simple and most frustrating reason though is that there is still great stigma associated with having mental health issues. In general society shies away from discussing such clinical issues. But they are indeed very real and also very pervasive in the childhood cancer space. In my opinion the clinical issue to be worried about is not the diagnosis of a mental health problem, but rather the un-diagnosed and festering issues that go unaddressed and misunderstood. 

As strong as the weakest link:

September 20, 2016

Tuesday, September 20, 2016

Tuesday, September 20, 2016 --- Mattie died 366 weeks ago today.

Tonight's picture was taken in September of 2005. Mattie was three years old and enjoyed going out on the weekends for nature walks and then a picnic. Not something that I would have ever done without Mattie in our lives. 

Quote of the day: Dogs are not our whole life, but they make our lives whole.Roger Caras

This afternoon my friend Peggy came over to meet Sunny. I had no idea she was coming with a bag of goodies for both Sunny and Indie. Peggy brought a lot of happiness into our home today. 

Sunny is a great dog, but came to us with NO concept on how to play. We have been working with him on this. Peggy brought Sunny two orange toy balls today and encouraged Sunny to fetch. To my amazement Sunny chased the ball and brought it back to us. He loved the engaged, not to mention watching the ball bounce. He practically bounced right along with it!

Peggy brought sunny this hard edible bone stuffed with marrow. This bone was a hit and will keep Sunny busy for weeks!
Peggy also brought Sunny a stuffed bear. Peggy just did not give it to Sunny, she really introduced Sunny to the toy. Told him it was his and then literally encouraged him to grab it and play with it. It worked! 
My friend Margy, brought this orangey bone to Curefest on Sunday. Sunny was overwhelmed from heat at Curefest, but I was happy to see him so playful today! 

Sunny is coming into his own and I am proud to report that Indie is freely moving about, playing, interacting with us and even Sunny. They are finding a way to tolerate each other and hopefully one day become friends! They are both such loving animals that I believe it is only a matter of time!