Saturday, September 17, 2016

Saturday, September 17, 2016

Tonight's picture was taken in September of 2005. This was a typical Fall weekend occurrence for Mattie and Peter. Peter wanted to share with Mattie the beauty of being on the water and also fishing. Mattie loved the experience and this bonding time with his dad. On occasion Mattie would invite me along and of course I was always photographing the moment to capture it in time. 


Quote of the day: I love a dog. He does nothing for political reasons. ~  Will Rogers

Today Peter, Sunny, and I took a car trip over the Bay Bridge to Queenstown. A place I never even heard of, which is over an hour from DC! Why did we go there? To meet Rose! Rose is a friend of a friend. Rose rescues collies and boards them in her home. She is a widow, loves her dogs, and lives in a part of Maryland that is so serene, peaceful, and green. A night and day difference from DC. We passed many corn fields as we drove to Rose's home.

Rose is a very loving lady. I have been having email communications with her for two months now. She occasionally sends me photos of her rescues and shares a story about them! One day, Rose decided to check out the footer of my email, which lists Mattie Miracle's website. Rose went to the website on her own, learned about Mattie and the work we do. She then wrote to me and told me she wanted to make an in kind donation to the Foundation. We picked up from her today a ton of beautiful hand knitted blankets today as well as trinket baskets that children in the hospital will appreciate. 

But I think the highlight of the day was watching Sunny run around UNLEASHED in her fenced backyard with her two collies. Frankly I have never seen this side of Sunny. Typical he is calm, gentle, and sedate. But when in a group of dogs, he becomes the leader and has NO PROBLEM asserting his authority in a playful way. He had a great time and I so wish I captured these moments on camera. They just happened too quickly. 

After visiting Rose, we went to visit our friend Lori who lives about 30 minutes away from Rose. Lori had two girl dogs with her today and Sunny totally loved playing with them in Lori's backyard. I loved watching the difference in Sunny's play style with girl dogs versus boy dogs. There was a dramatic difference. But he had fun with both! We could see that he is a runner, agile, and a true herder!

Lori then took us to her local Amish Market. What an amazing experience. I have never gone to an Amish Market before, but the products, freshness, and quality were remarkable. Lori bought Sunny this wonderfully big bone stuffed with marrow for dogs. This was the sight of Sunny working on his bone once he got home. He was transfixed and LOVED it. It is a bone that apparently lasts for months! 

Friday, September 16, 2016

Friday, September 16, 2016

Tonight's picture was taken in September of 2005. This photo makes me laugh! Mattie was with us at a park by the Potomac River. At the park he saw this huge piece of wood. What inspired him to pick it up and lug it to another location was beyond me. Nonetheless, I captured it in a photo. 


Quote of the day: Nothing is easier than self-deceit. For what each man wishes, that he also believes to be true. ~ Demosthenes

It was one conference call after the other today. In between I was working on setting up things for our booth on the National Mall on Sunday. Look who my two helpers were? Sunny has been such a positive addition to our lives, it is my hope that he enjoys a full day on the Mall on Sunday! 

Meanwhile, Peter and I have been working on two foam board cutouts for a month now. These are selfie boards. Which means you take a photo behind it and post it to social media. These boards will be at Curefest (a walk and advocacy event for families dealing with childhood cancer-- people come from all over the Country to attend) on the Mall on Sunday, and it is our hope that it will inspire people to visit our booth, take photos, and learn more about us!

Thursday, September 15, 2016

Thursday, September 15, 2016

Tonight's picture was taken in September of 2007..... way before childhood cancer was a term on our radar scope. On the weekends, when the weather was nice, Peter would take Mattie out in a row boat on the Potomac River. They experienced fishing together and Mattie enjoyed the hunt for catfish. They would catch them and then throw them right back in the water. Mattie had a few fishing poles and in fact his retractable rod still sits on his shelving unit in his room even today. On occasion Mattie invited me to go with them on an adventure and though I wasn't into fishing, I got a kick out of watching Captain Mattie! A boy who loved a boat. 



Quote of the day: Learning to trust is one of life's most difficult tasks. ~ Isaac Watts

Our day started at 5am. Totally NOT my hour. Peter had a day trip to New Jersey for business and he had to get up early to catch a train. Which meant as he got up so would Sunny and Indie. Needless to say I am going to bed very early these days, so I can be up by 6am, when everyone in my home is alert and moving! For those of you who know me, you know I DESPISE the mornings. So getting up each day before the sun is a challenge. 

The timing worked out well however, because Sunny had an orientation and full day play session at a facility called Your dog's best friends. What intrigues me about this boarding/day care facility is that they don't use cages or pens. In addition, they believe in positive play care. Which in essence is like positive reinforcement. Everyone who works there is totally into dogs and how they keep dozens of dogs straight is amazing to me. 

I was invited to Sunny's orientation. I spent the first hour with the owner of the facility and their head trainer. They worked with Sunny to assess his temperament and behavior in one room, isolated from other dogs. Then slowly they started introducing Sunny to a few dogs in the pack. From there, Sunny was brought into an intermediate space, to meet more dogs. Within an hour's time Sunny was in the "sweet dog" room. Filled with more gentle dogs. Whereas the "salty dog" room is filled with highly energetic and rough play dogs. It was very interesting to watch Sunny transition into this room and also fascinating to me that Sunny looked to me for reassurance. He did not move from one room into the other without coaxing from me. It was hard to leave him behind, and it did remind me slightly of what it was like to leave Mattie for the first time in preschool. I have many issues with trust and frankly in order for me to trust you, you have to prove yourself with me. Otherwise, you aren't getting too far. I always am suspect as to whether others can care for and nurture my child or dog in the same way as me. 


Orientation was from 8:30 to 9:30am, and at that point I was asked to leave Sunny at the facility until 4pm for him to get acclimated and for them to watch his behavior. When I picked Sunny up, I gave the general manager my camera and I asked her to take a photo of Sunny in the room. This was one of the photos she captured! Notice where Sunny is.... right along side a human. Sunny is very person focused. He gets along with dogs, but frankly I feel he thinks they are just that..... dogs. At times I think Sunny believes he is part human. 

After Sunny and I left the facility, he looked upset to me. As if there was too much stimulation for him and he was on overload. He complied by getting into the car, and when he got home he drank plenty of water and ate up a storm. But he just did not seem like himself. So I knew that meant he had to go for a walk. So out we went on a three mile walk. This was one of our walk sightings.... a Mattie butterfly!

Meanwhile back at home, we have Indie the cat who is now freely moving about our home again! She and Sunny are checking in with each other more and the other day when I got home from running a chore, Sunny herded me right over to Indie. He wanted me to know where she was. 

Wednesday, September 14, 2016

Wednesday, September 14, 2016


Tonight's picture was taken in September of 2006. We took Mattie to Scott's Run Nature Preserve that weekend and paused for a minute to take a photo. Most of the time Mattie complied for my need for photo documentation. To me those moments together were special and I wanted to capture them for all of us, but most importantly for Mattie. I figured one day he would look back at them and reflect. Little did I know that I was the one who was going to be reflecting and what role the photos would serve in my life. 





Quote of the day: In order to properly understand the big picture, everyone should fear becoming mentally clouded and obsessed with one small section of truth. ~ Xunzi


When I saw this quote today, it struck a chord with me! Why? Because of the day I have had. Sometimes when you work with people, they only see a very small segment of the reality. You can try to point out the truth and the bigger picture but it isn't always appreciated or absorbed. In the context I am writing this, I am NOT talking about cancer. 

Each May, Mattie Miracle hosts a Foundation Walk and Family Festival. It is our largest fundraiser of the year. For the past five years a local restaurant has donated all the food and has come to cook it for our guests. It has been a beautiful arrangement, in which Peter and I became good friends with this restaurant's executive chef. In the spring, this chef left that restaurant group and she gave me several email addresses of people to contact to keep the relationship going. So a few weeks ago, I wrote a long email to one of the executive chefs in the restaurant group. It was a deeply meaningful message because I shared with him what his restaurant means to me and my family. It was Mattie's favorite restaurant and one we patron OFTEN since 2005. I happen to know this chef lost his wife to cancer and I mentioned that in the message. Not to upset him but to let him know what we share a commonality of losing someone we love to cancer and knowing that it profoundly changes our future. I explained to him about Mattie, our Foundation, the importance of the walk and what his restaurant has been doing for us for the past five years. With the hope that he would continue the tradition. 

Well apparently my message was NOT well received by him. He was very upset, bordering on mad that I mentioned his wife in the email and refused to answer my email. Instead, he sent it along to his director of communications. Who basically said she had NO idea that the former executive chef was doing this for Mattie Miracle, but that the restaurant's policy is not to do such events because they can't afford to take staff away from their restaurant for an outside event. I explained to her that the former executive director worked for us on a day she wasn't scheduled to work at the restaurant and also brought her family and friends to help her. So she wasn't at all taking away man power at the restaurant. I got NO where with the director of communications and told her this needed to go up the corporate ladder. 

So today I received an email from the director of operations. His email was equally frustrating, if not bordering on insulting. He basically said that the restaurant has NO recollection of us and that it was the restaurant who has been very generous to us over the years NOT the executive chef. He then mentioned specifically that the general manager of the restaurant doesn't know who I am. I couldn't get this go!!! Because the general manager must have amnesia! I immediately wrote the director of operations back and let him know that the general manger does indeed know me. We have had several email, phone and in person conversations. That is problem number one. Problem number two is I wanted him to know that I am aware of the restaurant's generosity and in a way I try to do my part (besides dining there often). I host a volunteer dinner for 15-20 people at his restaurant every February before the Walk and then after the walk, I have a post family dinner there. In essence what I spend on both of these dinners, is equivalent to their food donation. Not to mention my frequent patronage. In addition, I let him know that I always give the restaurant an in-gift tax deductible acknowledgment letter for all the food. To say that I am disgusted by these back and forth messages is putting it mildly. It really is insulting, since I have been going to this restaurant for over a decade, have spent a lot of money at this restaurant, and worse, this was Mattie's favorite place, and they DON'T seem to know or remember this. Just plain SAD! 

Tuesday, September 13, 2016

Tuesday, September 13, 2016 -- Mattie died 365 weeks ago today. 

Tonight's picture was taken in September of 2008. The computer you see was given to Mattie by his technology teacher (Mary) at school. Mary and Mattie had a special connection. Mary lost her mom to cancer and understood the toll on both the patient and the family and was truly devastated that this was happening to Mattie. Mary was one of the teachers who visited Mattie practically weekly at the hospital. I am not sure she realized what a gift that was for me. It gave me an hour to regroup, while she worked with Mattie. Initially Mary came to work with Mattie on technology issues, but over time she could see that Mattie was stressed and frazzled and therefore used the time together however he wanted. Mary is an amazing person and teacher and the computer she lent to Mattie was greatly appreciated because it helped serve as a distraction on several occasions. 


Quote of the day: To be a champ, you have to believe in yourself when nobody else will.  ~  Sugar Ray Robinson


Over the last four years Mattie Miracle has worked hard at developing its vision for psychosocial standards of care for children with cancer and their families. Prior to us beating this drum, I am not sure people were really giving the psychological, social, and emotional issues even the time of day on the National level. But, it is a tireless job and one with continuous needs. I am not quite sure people thought we could get as far as we have gotten with the standards. After all, for decades NO EVIDENCE based standards existed, until we said they were needed. But just saying standards are needed isn't enough. In order to have accomplished this monumental task, a competent group of professionals needed to be assembled and the group had to be able to work effectively together and be passionate about this common goal! Yet what working with this group of over 80 health care professionals showed me is that people can collaborate for the greater good. That isn't a lost art, which was very refreshing to see. 

The childhood cancer parent advocacy space is filled with many organizations and foundations, many of whom are focused on raising funds for biomedical research and treatment. Of course Mattie Miracle supports and respects this work, but this just isn't our focus or our passion. On the contrary our tag line is..... IT'S NOT JUST ABOUT THE MEDICINE, and we believe that psychosocial care is just as important as the medicine. This isn't just a nice statement, but rather, it is a statement backed up by research and my own personal experiences with Mattie. When psychosocial care was appropriately administered, Mattie seemed happier, complied with treatment and experienced less pain.  

Yet, despite the reality of how emotionally impacted children and families are after diagnosis and beyond, the majority of advocates do NOT share our platform. Many cannot look past the medicine. In my perspective the medicine failed us like so many other families, so why wait for the panacea that may never come in our lifetime? After all, children are being treated with medications that are over 50 years old and only three new cancer drugs have been FDA approved in the last 20 years. Rather deplorable! So personally I rather deal with the here and now and how we can help a child and their family today!

What I am observing however, is now that the standards have been published, people are coming out of the wood work because they want to know more. Naturally I am all for sharing information, but unfortunately I also know the dynamics of the non-profit space. Anyone who thinks there is no competition and cut throat behavior within non-profits, doesn't know this space well. The non-profit world can be just as brutal as the for profit world, but what is worse is there is usually an emotional component to the work. People get involved in non-profit work for a reason, typically inspired by personal experiences on some level. We are learning the fine art of sharing and yet at the same time protecting our intellectual baby (the psychosocial standards). 

Everything about running a foundation is a learning experience. But it is much more complicated for me, because the Foundation represents Mattie and his legacy. If I deem you messing with the vision or mission of the Foundation, it may be problematic for the recipient, which is why, working with us typically means that we have a personal connection and understanding together. That may sound limited but so far it has been a winning strategy for us and Mattie Miracle. 

Monday, September 12, 2016

Monday, September 12, 2016


Tonight's picture was taken in September of 2006. Mattie went with Peter to Boston to visit his parents. I remained in DC because I was studying for a licensure exam and needed time to myself to concentrate. I remember receiving this photo! Clearly Mattie was having fun with a box that was transformed into a play house. Mattie was totally into boxes and always saw the possibilities!!! 








Quote of the day: Life is problems. Living is solving problems. ~  Raymond E. Feist


Sunny and I spend a lot of time together. We walk a good five miles a day, in two mile increments throughout the day. However, there are times during the day when I have to leave him alone and go out. Unfortunately you can't take a dog everywhere you want to go! What I am proud to report is that Sunny is absolutely perfect at home left to his own devices. He doesn't touch anything, damage anything, and has a bladder of steel!!! He is such a wonderful addition, and fits right in. 

Last night was his first night sleeping in a dog bed, not in his crate. He did great. Despite being very awake at 6:30am! But he clearly did not like the crate and to us it seems like he must have spent a lot of time prior to coming to us in a cage. So we really are opting for a cage free environment for him, especially since he is such a good boy! 

We are quite certain that Sunny has never had a toy before. He doesn't seem to know what to do with them! But I know he LOVES looking for and chasing REAL squirrels. So this weekend, I bought him a squirrel squeaky toy.  As you can see, he is LOVING it! Can you see his big teeth?

This squirrel doesn't have a chance!!!

This afternoon, I had this sighting! This is a first... both Indie and Sunny playing side by side. I view this is great progress as we are only in week two. 

Meanwhile my computer buddy is back!!! I haven't seen her out and about for a week, and was missing her cute ways. 

Sunday, September 11, 2016

Sunday, September 11, 2016

Tonight's picture was taken in September of 2006. Mattie was four years old and loved our calico cat, Patches. Patches understood Mattie's importance in our household, and she was truly patient, gentle, and kind to him at ALL times. In this particular photo, Mattie decided to play with Patches on our staircase. I am not sure who was more entertained by Patches' toy.... Patches or Mattie. They were good pals and as Mattie was dying he really wanted Patches to visit him in the hospital, but the hospital did not allow cat visits. Nonetheless, I remember how good Patches was with Mattie and how much he loved her company. 


Quote of the day: Today, our fellow citizens, our way of life, our very freedom came under attack in a series of deliberate and deadly terrorist acts. The victims were in airplanes or in their offices: secretaries, business men and women, military and federal workers, moms and dads, friends and neighbors. Thousands of lives were suddenly ended by evil, despicable acts of terror. The pictures of airplanes flying into buildings, fires burning, huge -- huge structures collapsing have filled us with disbelief, terrible sadness and a quiet, unyielding anger. These acts of mass murder were intended to frighten our nation into chaos and retreat. But they have failed. Our country is strong. A great people has been moved to defend a great nation.  ~ U.S. President George W. Bush.

For anyone who was alive on September 11, 2001, it is a day we will never forget. Not only were around 3,000 people senselessly killed, the lives of many are forever changed. I can't even imagine what it must be like to a survivor of that incredible tragedy. 

I will never forget that horrific day in 2001. I was home and Peter was at work in Northern Virginia. I was pregnant with Mattie and when Peter called me to turn on the TV, I was absolutely stunned. It was frightening to watch the total disregard for human life and of course, now years later, I understand all too well the lifetime of devastation for all the families affected. This morning, Peter and I watched the History Channel, who has been doing a fantastic job covering the 15th anniversary of 9/11. Their documentaries are educational, emotionally overwhelming, and deeply meaningful. 

In fact, the History Channel had a documentary entitled "Hotel Ground Zero." I honestly did not know there was a Marriott Hotel at Ground Zero, a hotel that was completely destroyed when the South Tower fell down. The documentary highlights the terror within that hotel and we got to hear the stories of several hotel survivors. One of which was a woman in a wheelchair dealing with multiple sclerosis. 

To see a short clip on Hotel Ground Zero  go to: https://vimeo.com/28059002

What we noticed however while watching the 9/11 documentaries, was Sunny was getting very depressed, dejected, and sad. It was obvious to both of us. I can't quite explain it. I don't know if Sunny could see and process what he was seeing, or he was sensitive to our reactions to what we were watching. Either case after an hour or so, we needed to turn off the TV and take Sunny for a walk to reset him. He is that kind of pooch! 

Post walk, look who jumped up on our bed. These two boys are the best of friends and Sunny enjoys our attention equally. Sunny is just a very loving and sensitive fellow who we feel very lucky to have in our lives.