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!

March 22, 2017

Wednesday, March 22, 2017

Wednesday, March 22, 2017

Tonight's picture was taken in April of 2002. Mattie was about ten days old. Despite how we were taught and told to wrap Mattie up (swaddle), Mattie absolutely hated it. He did not like to be restrained. As you can see his arms broke free from the wrapping and minutes later the feet would be out too! He was a precious sight and it is hard to imagine such a healthy looking baby could get cancer and die. 


Quote of the day: The most critical time in any battle is not when I’m fatigued, it’s when I no longer care. Craig D. Lounsbrough


Today was literally a catch up day for me and the Foundation. I was glued to the computer processing donations with acknowledgment letters for most of the day. Of course there were Sunny walks. Despite how I feel, there are always Sunny walks. I can tell when he needs to walk because he starts pacing around. It is down right impossible to concentrate when he is pacing! So we walk. I did see a doctor about my feet yesterday, only to learn that I have early stages of arthritis in my feet. Not what I wanted to hear, since I already have a very full plate of medical issues. Part of me wonders whether I have inflammation from all the walks I do with Sunny, or did the walking just speed up an inevitable process? I won't know, but I do know pain. Of which I have been having in my feet for over a week. We take our feet for granted until they aren't working well. But I do a lot of walking, and like to walk, so this is a very hard reality. 

Meanwhile, Peter and I had a phone call today with the leadership of the Association of Pediatric Hematology/Oncology Nurses (APHON). We are no strangers to APHON, since they were the first professional association to endorse the Psychosocial Standards of Care and in the Fall of 2016, awarded Mattie Miracle with an achievement award. Now APHON would like to work with us on establishing Mattie Miracle evidence based psychosocial standards implementation research grants with their association. We are very excited about this opportunity, to work with APHON, and to support such implementation research. Because at the end of the day, Mattie Miracle is looking for data and supportive care models that advance the practice of the standards in order to help children with cancer and their families.  

March 21, 2017

Tuesday, March 21, 2017

Tuesday, March 21, 2017 -- Mattie died 392 weeks ago today.


Tonight's picture was taken in March of 2007. Mattie was almost five years old here, and in preschool. After school we spent time out on the deck and as you can see Mattie captured all the snow that fell and made little castles with it! This was classic Mattie, because after building with sand or snow, he always wanted to decorate his creations. Usually with something found in nature. 






Quote of the day: The only thing that overcomes hard luck is hard work. ~ Harry Golden


Mattie Miracle wrote a psychosocial chapter for a sarcoma book about a year or so ago. Now that the other authors have finished their chapters, the book is set to be published this year. Very exciting because all the other chapters are on medical care, which is why this psychosocial chapter is such a crucial addition. In any case, I spent several hours proofing this chapter, and since it was written about a year ago, several things needed to be updated as it related to the Psychosocial Standards of Care.  Once the book comes out, I will try to share my chapter with my readers. 


Meanwhile, Sunny and I went for a walk this afternoon. He chased a squirrel right up the tree. You can see him in the center of the photo. 
Sunny waiting for the squirrel to come down!!! If I did not hold Sunny tightly on the leash, there would be many dead squirrels in our neighborhood! 
This was the sight in our kitchen today at dinner time. Who says cats and dogs can't be friends? I really think these two enjoy each other's company at meal times.

March 20, 2017

Monday, March 20, 2017

Monday, March 20, 2017

Tonight's picture was taken in April of 2002. Mattie was just born and home from the hospital. Look who was on the couch overseeing the process? Our calico cat Patches! Patches was a true member of our family. She found us literally, as she wandered from the street onto our deck. Shoot in the paw with a BB gun. Patches came to us a mess, but grew into a beautiful cat, who we had for 16 years. When Mattie was born, Patches just understood that she had to behave and watch over Mattie. Even when he pulled her tail and chased her as a toddler, she was patient and never hissed or scratched. Mattie became a preschooler who was very protective of Patches and taught his friends how to interact with a cat, if they weren't familiar with cats. Patches was a loyal and loving companion who we remember today, on the fourth anniversary of her death. 


The beauty of Patches! Four years ago we had to put Patches to sleep because of her progressive bone cancer. Can you believe it? Bone cancer, the same killer that took Mattie from us.  

Patches ashes remain with us, in a beautiful wood box. She meant that much to us. 






Quote of the day: There are some things in this world you rely on, like a sure bet. And when they let you down, shifting from where you've carefully placed them, it shakes your faith, right where you stand. ~ Sarah Dessen


I was in the car with my friend today, as we were running chores. In the midst of chatting, her cell phone rang. She answered it and I could hear screaming on the other end. It was a person who claimed to have kidnapped her daughter and wanted my friend's attention and money. He even put a young girl on the phone for us to hear. The girl was hysterical and screaming for help. The kidnapper said that if my friend didn't comply he was going to cut all of her daughter's fingers off. 

I have to tell you this was a very disturbing phone call. I wasn't even thinking straight because if I had been, I would have called her daughter with my cell phone to verify that she was okay. My friend knew about the virtual kidnapping scam, but nonetheless, right after the call, she contacted her daughter. Who fortunately was find! I then grabbed my friend's cell phone to look at the number of the person who called her. It was a number out of Mexico (I am reporting what showed up on the phone). In any case, I then called 911. Naturally 911 knew all about the hoax and said there was NOTHING they could do about it. They could only help if the child was really kidnapped or if money was transferred. 

This whole incident has stayed with me all day. It really made me uneasy and truly disheartened to think two things..... 1) there are people out there pretending to kidnap children to get money, and have no regard for human life and how this news will affect parents on the phone, and 2) that there isn't anything that local law enforcement can do about this crime. It leaves me perplexed, further disappointed with humanity, and truly wondering about the state of our world. 

I found the article below that highlights the virtual scam in the DC region and what I do what to say is that if this happens to you or someone you know, it should be reported to your local FBI office. 


Reports of virtual kidnapping scams pop up in region:

http://wtop.com/local/2016/05/reports-virtual-kidnapping-scams-pop-region/


March 19, 2017

Sunday, March 19, 2017

Sunday, March 19, 2017

Tonight's picture was taken in April of 2007. We took Mattie to Luray Caverns in Virginia. This commercial cave is a trip to remember. Mattie loved it and managed through most of the tour, until we got to the big Great Stalacpipe Organ. An organ that makes it sounds by mallets hitting 37 naturally formed stalactites. The sound is truly overwhelming, loud, and it seems to shake the entire cave. At which point Mattie headed right to Peter to be picked up! Mattie was a lot braver than me, because even as an adult, going into a cave is not fun or natural to me.  



Quote of the day: Everything yields to diligence. ~ Thomas Jefferson



I feel like Peter and I live by Jefferson's quote. One thing we are as it relates to the Foundation, and that is diligent. There are NO down days, no days when we are not working on a Mattie Miracle project, returning emails, processing paperwork, and so forth. I do believe that it is this diligence and hard work that has gotten us where we are today. 

But sometimes this pace is hard to manage. I have forgotten what weekends are like when you get out, have plans, and do something other than working. This is definitely one of the side effects of losing a child to cancer. You need to fill this immense void in your life, and for me, the way I have learned to cope is through the diversion of hard work. When Mattie was alive, occupying his time, finding things to stimulate his very active brain, and participating and socializing with the world around us described our weekends. I am quite sure that without Mattie in my life, I wouldn't have experienced Luray Caverns, metamorphosis with tent moth caterpillars, or digging for sharks teeth at Calvert Cliffs to name a few. When I hear what my friends are doing with their children on the weekends, it is hard to take. Mainly because I feel like they are part of the world and continue to experience it whereas I am interacting with it in quite a different way. 


This afternoon, Peter and I took Sunny for a walk. Thank goodness for Sunny, because otherwise, especially in the cold, I wouldn't be moving from home. Look at this lovely spring garden we passed along our journey. It did not feel like spring outside, but with all these pops of color, one would think otherwise. 



March 18, 2017

Saturday, March 18, 2017

Saturday, March 18, 2017

In December of 2006, we took Mattie to Butterfly World in Florida. It is truly an amazing, tranquil, and memorable place to visit. It appeals to all the senses. I can never see enough of these beautiful and fluttering creatures. Every time we visit Florida, we go to Butterfly World. It connects us to Mattie and to many butterflies, which also remind me of Mattie. 


Quote of the day: Life is short. If you doubt me, ask a butterfly. Their average life span is a mere five to fourteen days. ~ Ellen DeGeneres



As tonight's quote points out, a butterfly's life is short, yet beautiful. This maybe one of the many reasons why I think of Mattie each time I see a butterfly!

Peter and I visited Mattie's memorial tree at his school today. We wanted to change the ribbon and bow around the tree and add a few ornaments. All in memory of Mattie's 15th birthday which is fast approaching. The metal butterfly ornaments we added to the tree today, were purchased at Butterfly World in Florida. This seemed appropriate given how much Mattie loved visiting this preserve. 

This is Mattie's yellowwood tree. Soon trees and flowers will be springing from the tree. 
Can you see the big butterfly ornaments we added to the tree? They are made out of metal and enamel and are truly colorful and special like a butterfly. 
Our daffodils that we planted come back every year, along with crocus and tulips! I changed the bow and ribbon around the tree. Took down the winter themed bow and put something springy in orange. 
Butterflies blowing and floating from the tree in the wind. In addition to the butterflies, there are legos, toy cars, hearts, a bird house, and chimes hanging on the tree. 
Later this afternoon, we took Sunny outside in our commons area off leash. He LOVED it. I captured Sunny and Peter playing hide and seek!
Love the tail batting around with excitement! 
Sunny checking out the squirrels from our commons area balcony. 

March 17, 2017

Friday, March 17, 2017

Friday, March 17, 2017



Tonight's picture was taken in March of 2009, on St. Patrick's Day. One of Mattie's friends gave him the glasses, headband and necklace. So Mattie was decked out for the day, ready to visit the cancer clinic for treatment. I still have the headband and glasses, in fact if you look in the cabinet photo below, you maybe able to see them displayed in Mattie's memory shelves. 








Quote of the day: Our anxiety does not empty tomorrow of its sorrows, but only empties today of its strengths. ~ Charles Haddon Spurgeon



Every year around Mattie's birthday, Peter and I leave town. Leaving town becomes more complicated when you have animals. Fortunately for us, Indie is easy going and loves staying at our vet. She loves them, and they love her. So I don't worry about her. Sunny is a whole other story. 

Sunny is a VERY sensitive creature. He has bonded with me and frankly I can pick up when he is anxious. The place I take Sunny for grooming, is a lot like Dogtopia (where Sunny was today). However, when Sunny enters the facility where he is groomed, it is visibly noticeable that Sunny is anxious, because he shakes with fear. He doesn't react that way to Dogtopia, but he isn't exactly calm there either. This is Sunny's second time at the facility. I am trying to get him used to it before moving to a full week of boarding. Notice where Sunny is in this photo. At the 9 o'clock position, which puts him in front of the door to the room. Meaning he wants out!!! The beauty of this facility is that there are webcams and I can assess how Sunny is doing for myself. 

Peter was also watching Sunny through the Webcam at work and noticed that Sunny gravitated to the man at the 6 o'clock position. That is the owner of Dogtopia. Everyone who works at Dogtopia however is friendly, dog centered, and wants to make the experience positive for each dog. 
When I picked up Sunny this afternoon, the staff agreed with me that he is anxious. Which was a better response, since the grooming facility believes it is me who is making Sunny anxious. Which isn't true, I am getting anxious from his reaction. As Dogtopia said to me today..... Sunny wasn't around me all day, and the anxiety is coming from him. Since I wasn't present for him to feed off of.

Sunny refused snacks today at daycare and spends most of the time by the door. So I will be bringing him back next week for more visits, so he understands that being there is temporary. I even spoke to the general manager today. She asked how long I had Sunny and where I got him. Once she learned he was a rescue, she felt that being in a room with other dogs may remind him of being in a shelter, which could trigger his anxiety. So I am not sure what to do with Sunny. I can't imagine boarding him at a kennel, where he is locked up in a cage for a majority of the day being a positive experience for him either. 

Take a look at the toiletries coming in from all over the USA. All these items will stock our free snack/item carts at local hospitals. It is wonderful to see this pile and it my hope it will double by April! 

To see our WISH LIST, go to:

https://smile.amazon.com/gp/registry/wishlist/2UQOK4GY955ZL/ref=cm_wl_list_o_1?

March 16, 2017

Thursday, March 16, 2017

Thursday, March 16, 2017

Tonight's picture was taken in April of 2009. At his birthday party, which was in the child life playroom of the hospital. Take a look at the birthday card he received from his art therapists! They knew Mattie LOVED roaches, or at least loved the fact that the notion made me sick. I am not sure Mattie ever saw a live roach. Any case, to me this photo is priceless! Look how proud he was to receive this card!


Quote of the day: But remember, boy, that a kind act can sometimes be as powerful as a sword. ~ Rick Riordan



Today I drove to Baltimore, MD with my friend Margy. It was a DAY LONG adventure to visit Children's Hospital at Sinai. In reality the hospital is about 50 miles away, but with DC traffic, things always take longer. To put this in context, it took us about two hours to drive home.

Mattie Miracle launched its second snack and item cart today. Our first cart is at MedStar Georgetown University Hospital and now our second cart is in Maryland. 
Pictured here are Kristen (Child Life Specialist), Dr. Aziza Shad (Chief of Pediatrics), me, Laura (Child Life Coordinator), and Kelly (Child Life Specialist)


When Mattie was dying, Dr. Shad was the attending physician on call at MedStar Georgetown. Even though she wasn't Mattie's oncologist, Peter and I had many opportunities to interact with Aziza and of course I think you learn a lot about a person over the death of your child. Dr. Shad had to make a tough call about Mattie's death. His body was dying but his will did not want to die. Mattie was in agonizing pain and his room and bed looked like a war zone filled with syringes of pain meds. These syringes were given on top of the ones he was already getting through steady IV. Needless to say, Mattie had to be placed into a coma with propofol to die. It is a moment in time I will never forget, regardless of the number of years that go by. 

When Dr. Shad moved from MedStar Georgetown to Sinai Hospital, we decided to continue our support of our work. So we started by donating a snack/item cart. 

The cart was a huge hit today. The hospital gave us permission to post several photos of children we met along our journey today. Typically I do not like to feature children on our blog or website, because I am sensitive to their illness and do not want to highlight our accomplishments by exploiting a child's hardship and struggles.

I have made an exception to my rule today, because I could try to tell you there were smiles and happiness over the cart, but sometimes a picture says it all!
This fellow was priceless! As were all the children we met today. This cutie is five, and managed to deal with all of us transcending onto the clinic and hovering around. He was coloring in a Shamrock for St. Patrick's day and he and his mom were thrilled to get some items from the cart. 

I am not sure why meeting all the children and teens today impacted me so. As Margy said.... we met many 7 year olds today. The age Mattie was at when he died. Her comment resonated with me because it is hard not to see Mattie in these little ones.  

Julien was wearing a hat that said... cancer can't beat me. I think what struck me about the children I met today was their incredible strength, courage, and overall positive 'can do' attitude. Which truly is remarkable. 

So many of their faces remain with me tonight, because the child life staff brought us into every room and gave us an opportunity to talk with the children and parents. We weren't only delivering treats, but connecting with people. Which is what I love best. 
After visiting the outpatient clinic, we went to visit the inpatient pediatric units. This hospital is designed beautifully, with every room and detail thought through to make a family comfortable. 
This is Daniel. He had just undergone a painful procedure. But when he came out to see the cart and receive a star balloon from us, his demeanor changed. It is wonderful to be able to personally see the difference a snack can make. 
This cutie is Graham. He was also unforgettable. You can see in the lower left hand corner of his bed all the goodies he picked out for himself and his parents. He has the sweetest smile and I asked him if I could capture it!
After touring the outpatient clinic, the inpatient units, and the pediatric ER, Margy and I went to lunch with Dr. Shad. 
Margy and I in front of the sea creature sculpture as you enter the children's hospital!