Saturday, February 18, 2017

Saturday, February 18, 2017

Tonight's picture was taken in February of 2005. This was another favorite photo of mine. Peter captured Mattie with an expression of sheer joy. Though Peter joked with me by saying that when Mattie and I were together.... Mattie always seemed to glow with happiness. Not sure if that was true, but I certainly loved hearing it. 



Quote of the day: Love is the only answer to every question. It is the only thing that will serve you in every situation. It is the route and the destination. It is medication, liberation and should be at the heart of and expression of your vocation. ~ Rasheed Ogunlaru

When we woke up this morning, we found ducks swimming in the hotel pool. It was a real sight and lots of people were taking photographs of this occurrence!

There was weather over the Carolinas, so air traffic in Florida was basically at a stand still. If you were flying east. Our flight was delayed close to two hours. But we made it home safely and took wonderful photos on our descent..... this was Great Falls, VA. 

I can't get over this photo. This is an aerial view of Georgetown University. This may look beautiful, but to me it symbolizes cancer. When Mattie was hospitalized for over a year, many of the rooms we were in faced this green AstroTurf. I felt that Mattie's room was my own private Alcatraz. I could see life, normality, and students engaging in sporting events on this field and yet we were trapped, isolated and very different. This AstroTurf doesn't evoke sports or the university.... but pain, cancer, and ultimately death. 

Flying over the Kennedy Center!

An amazing view of the Washington Mall!

The Washington Monument!

While we were away, our college sent us a valentine. It is actually a fundraiser, but what captured my attention was the message and the heart. Peter and I met at Union College, and the College is acknowledging our "union" together. Great play on words.







Meanwhile, Peter went to pick up Sunny tonight, who was boarding with a friend. It turns out when Peter got to her home, her front door wasn't completely closed and the house had lights on, but no one was home! So Peter was suspicious and called me. I was home unpacking. It turns out that Sunny escaped and was running through the neighborhood, and worse across a major street. The family was out chasing Sunny and left the house in a hurry. One of the streets Sunny crossed is almost like a mini highway. The fact that he wasn't killed tonight is a miracle. I have come to the conclusion that two escapes is enough for me. He escaped during his boarding with someone else in January and now escaped with another friend. Moving forward Sunny is going to a facility when we are away. I wanted to keep him at someone's home because I thought he was thrive with that kind of attention, but I can't trust him. He needs constant supervision and in a very secured surrounding. Quite a welcome home!

Friday, February 17, 2017

Friday, February 17, 2017

Tonight's picture was taken in February of 2004. You can see the beauty and excitement of Mattie. But what you can also see was Mattie in red. Naturally when he was a toddler, I dressed him in all colors. But the color he gravitated to was red. As he got older, he would tell me that red was his favorite color, and then continue on by saying..... that's your favorite color too!




Quote of the day: To the romantic soul, the rituals of Valentine's Day echo every day of the year. ~  Richelle E. Goodrich

Our 90 minute plenary was a success today. This panel, incorporated researchers, clinicians, a childhood cancer survivor, parent advocates, and a payor (Anthem).

Pictured from left to right are:
Vicki, Pat Martin (Anthem), Lori Wiener (NIH), Andrea Patenaude (Dana Farber), Melinda Marchiano (Lymphoma survivor), Lee Marchiano (Melinda's mom) and Peter

Peter and me pictured with Melinda. Melinda and her mom live in Southern California. Mattie Miracle paid for them to come to the conference. We met this dynamic duo in Washington, DC in 2015, at an Institute of Medicine workshop. Melinda did an absolutely amazing job sharing her psychosocial story as a survivor. So much so that it remained with me for years. When we discussed with our researchers the importance of giving a voice to a survivor and parent on our panel, I recommended Melinda and Lee. What I love about Melinda is her ability to be engaging and inviting to her audience as she discusses a very difficult and painful subject matter. Melinda can deliver an honest picture, without making you feel completely depressed, but instead motivated to make a change and a difference.

Melinda and Lee were asked to tell their stories in relation to the psychosocial standards of care. Meaning if the standards had existed when Melinda was diagnosed.... would it have made a difference? Of course the answer is YES! Melinda addressed our survivorship standard and Lee addressed school re-entry and psychosocial support for parents.

Though I have heard Melinda speak before, several things she discussed resonated deeply with me. In our everyday lives, we walk around with a shell, to protect us from our losses/issues and the world. However, to do a presentation like this means opening one's self up to be vulnerable. Exposing truths, real feelings, and also dredging up the past. Don't get me wrong, the past is always with us, but having to find the courage to verbalize it and it to make sense to others takes great energy. Melinda also mentioned that she can talk to people in her life and yet no one truly understands what she lived through, which compounds the isolation. So much of what she reports as a childhood cancer survivor is true for parents as well. Especially parents who lost a child. Which brings me to another misnomer..... when people think of childhood cancer survivors they think of only the children. But in all reality it is everyone in the entire family system who is a survivor.

Needless to say, we had 130 attendees and people sat through the 90 minute presentation. You could have heard a pin drop!

When I returned to our room, I found a towel butterfly! I have no idea why the housekeeper did this, since we did not have an animal in the bathroom at check in. Nonetheless, I view this as a direct Mattie sign.

Thursday, February 16, 2017

Thursday, February 16, 2017


Tonight's picture was taken in February of 2006. That was Mattie's first year of preschool and all the children were exchanging cards with one another for Valentine's Day. We could have bought cards, but I decided.... why not make them together. Mattie loved hands on crafts and projects, especially when I converted the living room floor into an art studio. We made some beautiful cards together and I am so glad I have these memories. 






Quote of the day: On Valentine’s Day, we are reminded what our relationships could be like the other 364. ~  Steve Maraboli

As we were leaving DC this morning, Peter snapped a photo. You can see the Washington Monument right in the middle.

 Still over DC!

This was a photo taken while we were on descent to Orlando. There wasn't a cloud in the sky but lots of wind. It is in the 70s, but with the wind it is chilly. I am in two jackets and wearing tights and feel very comfortable!

This is a view of the conference hotel. I would say it looks better in a photograph than it actually is! 

How do I feel about attending conferences...... well to me it is a very conflicted feeling I have being here. Naturally it is wonderful to share Mattie's story, to highlight the standards, and to engage other minds and hearts into the project to implement standards. Yet on the other hand when I am surrounded by clinicians and researchers, they tend to think they are the gurus on cancer. Certainly they are from a professional standpoint, but regardless of how many years in the field they work, they do not share the lived experience with us. Having your own child diagnosed and die from cancer puts a whole other lens of complexity on the situation. Therefore hearing discussions about what works and things that need to be done to make care more effective, makes me laugh internally. Because you know the feeling when you are listening to a conversation and you have insights into the discussion that no one else has! Yet others know you have these insights and aren't curious to hear them.... that causes great frustration and stress for me.

Before Mattie developed cancer, I attended many conferences as a mental health professional. I even had leadership roles within several national associations. Perhaps it is my understanding for the politics behind associations that clouds my view point of them. Either case, I found I needed to retreat today from hearing this networking chit chat. Our 90 minute plenary starts tomorrow at 12:25pm. Mattie Miracle has paid for many of the speakers to present on this plenary... and the speakers range from researchers/clinicians, to parent advocates and a childhood cancer survivor. Mattie Miracle feels that hearing from a survivor and parents is crucial and adds a vital dimension to the presentation. But it wasn't only the presentation. The standards had families involved throughout their development process. Again, from my perspective you can't develop tools for a population without involving the population in question. That may seem like a no brainer, but this is something Peter and I advocate for all the time..... giving children and their families a voice.... in research and in directing clinical care.

Wednesday, February 15, 2017

Wednesday, February 15, 2017

Tonight's picture was taken in February of 2004. Mattie was almost two years old. Peter and I took him to the Natural History Museum in DC and Peter captured Mattie intrigued by the huge wholly mammoth bronze sculpture in the rotunda. As you can see Mattie was transfixed by its size, its tusks, and height. 


Quote of the day: Dusk is just an illusion because the sun is either above the horizon or below it. And that means that day and night are linked in a way that few things are there cannot be one without the other yet they cannot exist at the same time. How would it feel I remember wondering to be always together yet forever apart? ~ Nicholas Sparks


Decades ago, a friend of mine from college who became a librarian, was talking to me about a book. She was describing the story line and as she continued on, I was intrigued enough to ask her..... what is the title of this book? Audrey told me it is called, The Notebook by Nicholas Sparks. Time passed, but one day I decided to purchase the book. I absolutely LOVED it. Sparks maybe a fictional writer, but the way he captures people, their relationships, and particularly loss speaks to me. I have read EVERY single one of his books. His quote that I posted tonight resonates with my feelings of dropping Sunny off at my friend's house today. 

Peter and I are headed to a two day conference in Florida tomorrow, and as such, I needed someone to care for Sunny in our absence. My friend Jane lost her dog about a year and a half ago, and she offered to watch Sunny. Sunny has met Jane before and has also visited her home. I am grateful to Jane for caring for my doggie baby, but as Sparks so aptly points out..... we sometimes want two things at the same time, and yet it is physically impossible for this to be achieved. I want Sunny to be with us, and yet I also have to board a plane an attend a conference. Both objectives are not achievable at the same time, yet for met saying good-bye to Sunny this afternoon brought up loss. 

"Always together yet forever apart." A powerful statement from Sparks. In his book he was referring to a husband caring for his wife with Alzheimer's disease, yet his quote is quite applicable to loss of a child. For me Mattie is with me daily through this blog, through my work on the Foundation, and in all his artistic objects that surround me. Yet physically we are forever apart. It is hard to really grapple with this dichotomy of together and apart. It is a constant struggle, mind game, and emotional roller coaster bereaved parents face and certain activities in our daily lives cause these wild feelings to come to the surface. Like saying good-bye to Sunny today. Sunny looked at me with his sad big eyes and it made me feel like I was failing him. Yes not rational, but feelings don't always make sense. 

The good part is Jane will be keeping in touch and I will be tracking how Sunny is doing. Jane and I met when our children were in preschool together. She is very active in our annual walks and helps me manage our walk teams. It is truly remarkable if you think about it that most of the moms in Mattie's first preschool class are still friends with me today and are dedicated Mattie Miracle volunteers and supporters. Naturally I focus on why we are going away...... to present at a conference and share Mattie's story as well as bring awareness to the fact that Mattie was the impetus for the creation of the national psychosocial standards of care for children with cancer and their families. 

Tuesday, February 14, 2017

Tuesday, February 14, 2017 -- Mattie died 387 weeks ago today.

Tonight's photo was taken on Valentine's Day in 2009. As you can see Mattie was surrounded by Valentine's cards. All the first grade classes at his school sent him Valentine's and a friend sent along this huge lollipop. Not sure Mattie ever ate it, but he loved playing with it and using it as a magic wand. 


Quote of the day: Love attracts, connects, builds and frees the beauty of humanity. Happy Valentines Day. ~  Euginia Herlihy

I found this Valentine's message years ago and have posted it on the blog before. Clearly this is NOT a message one can find in Hallmark, as there really are few cards that apply to parents who lost a child to cancer. 

Time moves forward, and yet bereaved parents the sadness remains. We may look normal on the outside, but if you scratch the surface and really listen you may see the reality of the pain. 






There are certain days of the year where I really don't wish to hear about someone else's children, their children's accomplishments, plans for the future, and challenges they face. Yet how do I say..... JUST STOP talking! If bereaved parents do this, then we are deemed as having the problem. Yet it is ironic that the rest of society does influence and direct what bereaved parents can talk about. It is a very lopsided problem. 

One of the highlights for me today was reconnecting with Becca (you can see her pictured here). Becca used to be an executive chef at the Clyde's Restaurant Group. For five years, Becca donated all the food to our Walk and even came to cook and serve it on site. She is a remarkably generous women who stands behind our cause! 

Becca has since left Clyde's and now works managing the local Nordstrom's cafes. We had a fun time chatting with each other as she made her two hour commute home. As I always say, Mattie connected us with some amazing people, that he left behind for us. 

Monday, February 13, 2017

Monday, February 13, 2017

Tonight's picture was taken in March of 2009. As you can see this was Mattie's chicken nugget phase. There were all sorts of food phases throughout chemotherapy. As quickly as one came on, it never seemed to last long. We were constantly moving from one craving to the next. But that was okay, we were happy to oblige especially if Mattie would eat. 

If you notice behind Mattie was a model magic sign he made it with his name on it, and directly behind him was a green sock that he made to resemble a snake. It was never boring in Mattie's room and it was always filled with art. In fact, the art did help to break the ice for many incoming health providers, because typically Mattie did not want doctors entering his room and would usually turn them away. However, if they took an interest in his items that usually provided a productive diversion to enable an exam to occur. 


Quote of the day: All you need is love. But a little chocolate now and then doesn't hurt. ~ Charles M. Schulz

It was a day focused on the Foundation Walk, which is on May 21! However, in the midst of work, I retrieved two packages. One was this lovely pink rose display. A nice surprise because I never expect flowers on Valentine's Day. Even Sunny and Indie were intrigued by the flowers. They were sniffing them and truly wanted to be a part of the opening the box process. 

This adorable box is from a friend of mine who lives in Rhode Island. I met Angie when I was in my graduate program at Boston College. Which was a significant amount of time ago. But Angie keeps in touch and has followed our whole journey with Mattie. She writes to me on every holiday and always helps me celebrate Valentine's Day with treats. I never know what treat I am going to get, but she never disappoints. They are always delicious and memorable. Angie feels that Valentine's Day is a wonderful holiday to help brighten a bleak winter. I never thought about it that way, but it makes perfect sense to me. So tonight I am surrounded by flowers, chocolate, and fresh popcorn. I would have to say that unexpected surprises have a way of brightening up one's day. 

Sunday, February 12, 2017

Sunday, February 12, 2017 -- Today marks the day in which Mattie has been dead for the same number of days he has been alive. 


Tonight's picture was taken in May of 2009. Four month before Mattie died. At that point in time we had no idea that Mattie had a terminal diagnosis. I recall this day as if it were yesterday. Normally I never left Mattie because whenever he was in the hospital I slept there. But the night before this photo was taken, I went home to sleep and Peter covered Mattie alone. I needed a physical and mental break. When I came back to the hospital the next day, dressed in normal clothes, Peter snapped a photo of me with Mattie. Mattie was happy I was back, as he relied on me throughout the day. To this day, I refuse to wear anything that remotely looks like or feels like a sweat shirt or pants. I wore so many of them for over a year while caring for Mattie, that to me this material symbolizes childhood cancer. 


Quote of the day: The whole world can become the enemy when you lose what you love. ~ Kristina McMorris


After today, Mattie will be gone from our lives longer than he was with us. This is a very painful reality to face as a parent. It is truly hard for me to grasp that I raised Mattie for 7 years, because now that he has been gone for 7 years, I struggle with remembering if I ever was a mom and what that feeling was even like. I struggle to remember his smile, his eyes, his laughter, his voice, and his touch.

My constant mission is TO REMEMBER! Which is why Peter and I are deeply grateful to our supporters who keep our second baby... The Mattie Miracle Cancer Foundation, alive and thriving. We learned the hard way, as we live with grief each day, that childhood cancer is NOT JUST ABOUT THE MEDICINE.

In 2009, we created this remembrance video of Mattie. It highlights photos of Mattie over his seven years. Mattie lived each day to the fullest and I assure you if Mattie was in a room.... you knew about it! Ooga Booga Mattie (which in Mattie-ese means.... I LOVE you)!

Remember Mattie Video:
https://www.youtube.com/watch?v=ziP83j9Oz90

I forgot I had a folder that featured photos from Mattie's celebration of life reception. Mattie's funeral and celebration of life reception were held on October 10, 2009, a month after he died. I needed that amount of time to plan for an event that I felt would appropriately acknowledge Mattie's life. At the reception, there was an entire room featuring Mattie's art. Art that he made while hospitalized for 14 months. Thankfully we had friends who created placards for each of the pieces and helped to display them so beautifully. Mattie was prolific while battling cancer and many of the items you see in these photos I still have on display in our home. 

Another table filled with Mattie's art. Many of these canvases are still hanging in our home. The irony is when these items were created, I am sure Mattie's art therapists never imagined they would serve as his legacy/remembrance pieces. But in essence that is exactly what they mean to me. 

There were many Lego
structures on display at the reception. This one did NOT come from a kit, but instead from Mattie's mind. Mattie's child life specialist, Linda, asked Mattie to design his ideal hospital room. Mattie created this room out of Legos. His design featured a huge hospital room which had access to an outdoor space, garden, and playground. 

This was Dr. Crazy Hair. Mattie made this statue with Peter in the clinic. We had this fellow in our living room for the longest time. Any case, this doctor had some interesting things in his pockets. In one pocket was a big oyster shell. The shell represented a big toenail that the doctor removed from a patient. Don't ask me where Mattie got his ideas from, but whenever he saw the shell he reacted to it as if it was someone's toe nail. It was a riot to watch! 

On the easel was featured the valentine's box Mattie made for me and on the board were all the valentine's inside the box that he gave me. 

At the celebration of life reception there was a balloon release for all of the children, Mattie's friends. Many of them tied a message on a white piece of paper to the balloon for Mattie. Since red was Mattie's favorite color, the balloons were red. 

In memory of Mattie..... we visited his memorial tree. We always keep a bow around the tree to reflect the current season and yesterday we added 7 butterfly ornaments and Legos to the tree in honor of Mattie's 7 years with us. I am not sure Sunny grasped what was happening, but he complied and stood by the tree as we were decorating and photographing it. 

The barren tree. It maybe leaf less, but it certainly isn't a boring tree. All sort of items hang from the tree in remembrance of Mattie..... legos, hotwheel cars, butterflies, a bird house, and wind chimes. 

This is the placard in front of the tree. This tree was dedicated to Mattie by his graduating class, class 2020. Notice the crocus we planted in the fall are beginning to bud. 

We keep a ribbon and bow wrapped around the tree throughout the year. The ribbon usually features a theme of the season. So this is our snowman bow that we just placed on the tree.