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!

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)

https://mccaul.house.gov/sites/mccaul.house.gov/files/Childhood%20Cancer%20Star%20Act_0.pdf

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

Joe McDonough, Peter Brown, and Jonathan Agin

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! 

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:
https://climbingupthepolkadottree.wordpress.com/2014/09/19/as-strong-as-the-weakest-link/

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! 

Monday, September 19, 2016

Monday, September 19, 2016

Tonight's picture was taken in September of 2005. We took Mattie peach picking that weekend. What a great time we had. It was a first for me as well as Mattie. We came home with a ton of peaches. I remember making peach jam with many of the peaches and Mattie absolutely loved the process. No surprise as we always called him our "Farmer Brown."


Quote of the day: Buy a pup and your money will buy love unflinching. ~ Rudyard Kipling

This photo isn't meant to gross you out in any way. Rather I entitle it..... "the hamster." This is the amount of Sunny fur I pick up every few days with a vacuum. Mind you I brush him down every day. But this boy has FUR, and MORE FUR!!! When I dumped the vacuum container in the trash today, the sight of all the fur made me laugh. I hope it makes you chuckle too!

Today was our first rainy day together. I am NOT a rain fan, but apparently neither is Sunny. We went out for a quick walk earlier in the day and Sunny seemed miserable. So much so that when he got back home, he went upstairs to his dog bed to lie down. Totally not like him, but he literally seemed depressed. Now we have two in our home who are in need of sunshine.... me and Sunny!

This is a photo I took of Sunny before our afternoon walk. Sunny needed to get out of our home and moving. He thrives on walking and looking for squirrels. This is the before photo. Looks a little dejected in comparison to the next photo.

Sunny and I walked to the White House and back. That was a three mile walk in the rain. I can assure you, without Sunny, I wouldn't be outside walking. Look how happy he looks. He loves walk and despite the rain spotted many squirrels. The National Mall is a squirrel friendly place and it is literally Sunny's playground!



I would have to say that post childhood cancer events (like the one yesterday) are always a let down and emotionally and physically draining. Which is why having Sunny around helps a great deal. He is a constant companion and loves to be loved and needed! This morning, after I got back inside from our walk, I was damp and wet from the rain. So I put a kettle on to make hot tea. When the kettle started to whistle, Sunny literally came running into the kitchen to see if I was okay. He knew I was in there, but couldn't place the whistle and that concerned him greatly. Hard to believe that our two week long new addition, seems so well integrated into our lives. 

Sunday, September 18, 2016

Sunday, September 18, 2016

Tonight's picture was taken in September of 2005. That evening before heading to bed, Mattie want to read books in my bed.  So we had a cozy story time and clearly Peter captured that moment. Which I am so glad he did, because this photo helped to jog my memory tonight. Otherwise, I would have to say I forgot about such occurrences. What I won't forget however, was those weekend mornings when Mattie would run from his room into ours and come over to my side of the bed. Alerting me that it was time to get up!


Quote of the day: How very little can be done under the spirit of fear. ~ Florence Nightingale



Today we attended Curefest on the National Mall in Washington, DC. This is an annual event in which the majority of attendees are families impacted by childhood cancer. The event provides the opportunity to meet other non-profits and to talk with others whose lives have been affected by the same disease. 

Sunny and Indie have a way of arising by 5am. Not my hour, but today it was needed because we left our home at 7:30am to walk with Sunny to the National Mall. It was a rather pleasant 2.5 mile walk in the morning, despite having a cart load of things in tow and several posters. But we made it. 

The weather today was the HOTTEST it has ever been for Curefest. Last year I was in fleece and the wind was fierce. This year, we would have welcomed a wind. It was stifling, humid, and the sun was intense, even under a tent. In fact, I want to say the tent traps in the heat.


This is what our tent set up looked like. Hanging on the right side of our tent were our selfie posters. On the table was a lot of informational placards about Mattie Miracle, our brochures, business cards, a copy of the National Standards of Care, and fun give-a-ways like t-shirts, friendship bracelets, bendable toy animals, and awareness ribbon stickers. 

Sunny was an incredible trooper. I swear I feel like Sunny has been trained to be a helper dog. He is just too cued into his owner and his/her needs. Sunny knew we had our hands full and literally sat under the tent compliant. He wasn't going anywhere, and wasn't making a fuss, and believe me there was a lot to fuss about. We tried to keep him hydrated and with plenty of snacks. But by 2pm (after getting there at 8am), we were all terribly overheated, and had to leave. 

Mattie was acknowledged on the memory wall. 

This maybe my favorite photo! Sunny was captured in the photo!

Thankfully we had great helpers today! This is Marisa. Marisa knew Mattie when she was in high school, and would help Peter and I when Mattie was home from the hospital. Now Marisa runs our Foundation Walk bake sale and her whole family are huge Mattie Miracle supporters.

I thought I could manage the booth myself today, but I was sorely wrong. Marisa helped us with set up and really fielded many people coming up to talk with us. She did a great job, because it is hard to talk to everyone at once.  

Our friend Ann and her daughter Abbie also came to help us again this year. Mattie would have been Abbie's age if he were alive today!

Ann sits on the Mattie Miracle board, but also was our Team Mattie coordinator. A role that was absolutely vital and necessary throughout Mattie's cancer battle. 

I took a selfie with my good friend Margy and her husband Ken. Margy is a childhood cancer advocate and runs a successful childhood cancer non-profit ("Growing Hope) for almost twenty years now. Margy is a huge Mattie Miracle fan and supporter and is one of my first facebook friends! 

Margy brought treats for Sunny today which were a total hit!!! 

I took another selfie with my friend Ilona. Ilona lost her only child to cancer and we became friends over three years ago, after her son Chris died. Ilona is the president of her non-profit, The Chris Lantos Foundation. 

I was so surprised to have a visit from Charlotte, our Godchild. Charlotte and her parents (Cesar and Koseth) braved the heat and came to visit us. It was a highlight of our day!

Vicki and Ann. Mattie brought us together as friends and as I always say to Ann, Mattie would be happy that we are still together. 

The stage at Curefest

 The Curefest Walk

The Capitol in the background. 


I think today's surprise was that out of the blue an interviewer and camera person came to talk with us. They were selecting a few Foundations to talk with, and they selected us. Not sure what drew them to us, but they had us tell our story, explain our mission, and hopes for childhood cancer. They asked us how we learned about Mattie's diagnosis and also wanted specifics about how psychosocial support helped in our lives. I relived for them how Mattie was diagnosed. Mattie was attending a tennis camp in July of 2008. After the first week of camp, Mattie complained of arm pain, but by week 2, he couldn't lift his arm. Fortunately when I took him to the pediatrician, she took our concerns seriously and ordered an xray. Honestly she and I did not think much would be found, but she was being cautious. It took 45 minutes to do a simple xray and I remember being annoyed at the tech. Once the x-ray was complete the tech took me to a waiting room. It was a tiny room and inside the room were other adult patients. While waiting, I was trying to entertain Mattie when the phone in the room rang. No one went to answer it. So I did. The radiologist asked if I was Mattie's mom and when I said yes, he told me I had to report back to the pediatricians office. But it was how he said it, that made me pause. I literally told him I wasn't moving until he told me the xray finding. Of which he did. I heard that Mattie had cancer over a phone, with other people watching me, along with Mattie by my side. I moment I will never forget. 

But I explained to the interviewer today that psychosocial support comes in many forms. Not just through professionals in the hospital. In fact, I told them about our care community which was comprised of Mattie's schools, and our places of work. All these communities united together. But remember many of the people within these communities who did not know each other. Yet they started pitching together, coming up with plans, and rose to the occasion to deliver food around the clock to us for 14 months. Not to mention toys and gifts practically daily. Whatever was needed, I just needed to ask and it was delivered. It is actually very hard to go from living such a public and important life to the life I live now, but I did not happen to mention that psychosocial adjustment. Nonetheless, I wanted to make it clear that support comes in all forms and sometimes ordinary people can do extraordinary things, things that can alter the outcome of a really bad day for the child and the family. The interviewer plans on sharing this clip with us, so we shall see!