MATTIE MIRACLE VIRTUAL WALK WAS AN $110,000 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 7th 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!

A Remembrance Video of Mattie

April 21, 2018

Saturday, April 21, 2018

Saturday, April 21, 2018

Tonight's picture was taken in April of 2009. Mattie was home between treatments and we were having a silly moment together. Since those moments were so few and far between, we captured it on camera. Mattie received an alligator toy from a friend and as you can see Mattie was opening his mouth like the toy! We were trying to see whose mouth was bigger!


Quote of the day: The day the Titanic left Belfast for Southampton, England, a massive fire was found in one of the coal storage bunkers. Typically firemen aboard a ship's dig out the burning coal before the fire spreads, but the Titanic's coal bunkers were three-stories high making it impossible to quickly deal with the massive flames. ~ from the Smithsonian Channel's Titanic's Fatal Fire 


This past April 15th, marked the 105th anniversary of the sinking of the Titanic. Those of you who are loyal readers know I am fascinated by the Titanic, its history and the stories of all the passengers aboard! This week, the Smithsonian Channel ran two documentaries. One is entitled, Titanic's Fatal Fire. Since I never heard about a fire aboard the Titanic, I decided to record this show so we could see it today. It was very well worth the watch! 


For the first time, investigative journalist and Titanic expert, Senan Molony revealed the real story. In a television exclusive, Titanic's Fatal Fire uses a breathtaking new graphic technique to bring to life, in full moving color, recently unearthed photographs of the launch and maiden voyage of RMS Titanic.

Thanks to a photo album that showed up at an auction house, more clarity has now been uncovered about Titanic's perilous fate. So what does this photo show? This photo was taken as the Titanic left its dock in Belfast, Ireland, and was headed to Southhampton, England to pick up passengers for its maiden voyage. What you are seeing circled in this photo was a LARGE scorch mark, from a fire. That is correct, there was a coal fire already out of control on the Ship before it ever left port in Ireland!

I am not sure what I find more intriguing, the new information revealed or Molony's passion to answer plaguing questions about the Titanic (such as when the Titanic received several warnings of icebergs ahead, why did the captain steam full speed towards them without changing course?). 

Shockingly, the owners of the Titanic knew about the fire before she set sail and deliberately kept the fire secret from their passengers. Modern scientific analysis explains how the fire was ultimately responsible for Captain Smith's decision to charge through the ice-field at top speed (basically it wasn't his choice, rather as smoldering coal causing the fire was removed from the boiler room, to try to stop the fire, this coal was thrown into the engine, which caused the ship to MOVE FASTER). The fire also explains the catastrophic failure that led to the "unsinkable" Titanic unexpectedly giving way, taking one and a half thousand passengers to their death. In a nutshell, the fire compromised two of the bulk heads, by destabilizing the steel. So when the ship hit an iceberg and water was filling the bulk heads, two of the bulk heads couldn't contain the water and exploded. It is quite plausible that without the fire damage, the bulkheads would have kept the ship afloat long enough for ALL passengers to be rescued from the Titanic. 

Molony shared in the documentary that in the wake of the disaster, he believes White Star's Chairman, J Bruce Ismay, did everything in his power to keep the real story about the fire from getting out. There was great competition between the White Star Lines and Cunard, and the voyage of the Titanic was viewed as a prestigious money maker for the ship line. Therefore NOTHING of any kind was going to postpone its voyage. 

But this voyage had many strikes against it, starting with the cost cutting measures from White Star Line executives that included using sub par steel to build the ship and the decision to provide a limited number of life boats. Low quality steel is more susceptible to changes when exposed to heat, such as the fire. In addition, when the Titanic set sail it had a limited amount of coal on board, because of a coal shortage. Therefore, even if the captain wanted to slow the ship down because of iceberg warnings, he really couldn't because the Titanic wouldn't have had enough fuel to make it to New York City. Taking all of these factors into account, this was a damned voyage. 

To read more, go to:

https://www.usatoday.com/story/life/nation-now/2017/04/14/titanic-photos-may-show-why-it-sink-fire-boiler-room-iceberg-death-105-anniversary/100410926/

To see the actual hour documentary, go to:

https://www.youtube.com/watch?v=USdreZ0WIwE

April 20, 2018

Friday, April 20, 2018

Friday, April 20, 2018

Tonight's picture was taken in April of 2009. Whenever we were home and the weather was nice, we would take Mattie for a stroll around town. Peter snapped a photo of Mattie and me in front of Mattie's favorite fountain. He loved this fountain because of how much water shot up into the air and then came crashing down. Peter and I can't pass this fountain today without calling it "Mattie's fountain." One thing I have tried to block out of my memory was the stares we used to receive when Mattie was in public. Instead of people having care and compassion, what was exhibited was fear, bordering on disgust. We tried to protect Mattie from seeing this, but unfortunately we absorbed each encounter.  

Quote of the day: And when one of us is gone, And one of us is left to carry on, Then remembering will have to do, Our memories alone will get us through, Think about the days of me and you, Of you and me against the world. ~ Helen Reddy


Helen Reddy was an Australian singer from the 1970's. Though most people today have no idea who Helen Reddy was, her music still plays on. Case in point, today I was at the grocery store. While migrating up and down the aisles, I heard the first few notes by the clarinet and immediately knew I was about to hear..... "You and Me Against the World." 

Why am I so attuned to this? I am because I used to sing this to Mattie all the time. It is a very touching song, and if you are unfamiliar with it I attached the link and the lyrics below. Even before cancer, Mattie dealt with an overcame many issues.... one in particular was sensory processing disorder.  Sensory processing disorder is a condition in which the brain has trouble receiving and responding to information that comes in through the senses. Some people with sensory processing disorder are oversensitive to things in their environment. Common sounds may be painful or overwhelming. The light touch of a shirt may chafe the skin. 

In Mattie's case he did not like crowds, or having anyone too close to him physically. He was very sensitive to clothing on his skin, textures of foods and had trouble swallowing them and the list went on. However, Mattie would get very frustrated with over stimulation from his environment and would have full blown tantrums. Tantrums that could last 15 minutes or more, and multiple tantrums a day. Some of which landed up in biting. We started Mattie in occupational therapy at age 2, along with speech therapy. Within two to three years of starting therapy, none of his teachers could tell Mattie had any issues at all. In fact, I remember attending a parent teacher meeting with our occupational therapist. The teachers told us they saw no signs or symptoms that Mattie had any special needs. Myself and the occupational therapist simply laughed because these teachers had no idea what we went through with Mattie for the two years prior! But intensive therapy worked! I am a big believer in early interventions. 

The disappearance of these processing issues did not just happen on their own. It happened because I took Mattie to therapy sessions twice a week, and participated in all the sessions. We worked hard together and frankly in many ways, I was the one person who truly understood Mattie. I did a lot of explaining of Mattie's behavior to other people but at the end of the day, I knew that Mattie was bright, sensitive, and loving. Which leads me to Helen Reddy's song. When Mattie was a toddler, I started singing You and Me Against the World to him. I felt it was the most appropriate song because that is exactly how it was raising Mattie..... it was us AGAINST the world. 

So when I heard this song today, it brought me right back to Mattie's toddler days. I am sure most people don't roam around the grocery store in tears because of a song that is playing in the background! But I do! I am not a crier at all, but there are some things like songs that get me every time. 

The specific lyric in the song that is so fitting for my current relationship with Mattie is.... And when one of us is gone, And one of us is left to carry on, Then remembering will have to do, Our memories alone will get us through, Think about the days of me and you, Of you and me against the world. I would have never guessed that Mattie would be the one to go first and as a result I am his memory keeper rather than the other way around. 


You and Me Against the World:
https://www.youtube.com/watch?v=lzb1KRyDgi4

You and me against the world
Sometimes it feels like you and me against the world
When all the others turn their back and walk away
You can count on me to stay

Remember when the circus came to town
And you were frightened by the clown?
Wasn't it nice to be around someone that you knew?
Someone who was big and strong and looking out for

You and me against the world
Sometimes it feels like you and me against the world
And for all the times we've cried I always felt that
The odds were on our side

And when one of us is gone
And one of us is left to carry on
Then remembering will have to do
Our memories alone will get us through
Think about the days of me and you
Of you and me against the world

Remember when the circus came to town
And you were frightened by the clown?
Wasn't it nice to be around someone that you knew?
Someone who was big and strong and looking out for

You and me against the world
Sometimes it feels like you and me against the world
And for all the times we've cried I always felt that
The odds were on our side

And when one of us is gone
And one of us is left to carry on
Then remembering will have to do
Our memories alone will get us through
Think about the days of me and you
Of you and me against the world
You and me against the world
You and me against the world

April 19, 2018

Thursday, April 19, 2018

Thursday, April 19, 2018

Tonight's picture was taken in April of 2009. Mattie was home and in between treatments. That day we wheeled Mattie down to the National Mall. We fed the ducks and tried to have a picnic on the lawn. Peter snapped this photo of us and I remember this snapshot in time like it were yesterday. 


Quote of the day: Change is inevitable. Change is constant. ~ Benjamin Disraeli


You maybe asking... what is this a photo of?! I took this photo at MedStar Georgetown University Hospital today, as I was on campus to push our snack cart around the pediatric units. 

The Hospital is undergoing a major construction project to build a whole new surgery center. In doing so, they are tearing down the brick building you are seeing in the background. 

To me this is like destroying a piece of Mattie's treatment history. Mattie and I went to this building multiple times. For all of his hearing tests (which weren't always a positive experience, as Mattie's treatment permanently affected his hearing of higher pitched sound) as well as all of Mattie's outpatient meetings with his psychiatrist. I remember wheeling Mattie around in that cavernous building as well as toward the end hearing a story his therapist told me. 

Mattie and his psychiatrist did a lot of play therapy. Many times Mattie gravitated to playing with a toy house. Apparently in his play scenarios the dolls represented Mattie and all his friends in the hospital. However, toward the end of Mattie's life, his play scenario was different. The Mattie doll refused to go into the house to play with his doll friends. When the psychiatrist asked him why, Mattie basically said he was different and could no longer play with them. In fact he said something like.... ghosts don't live in houses. On that day, I learned through play therapy that Mattie understood that he was dying. 


In this open lot, which once served as a parking lot for people with disabilities, a new surgery center is under construction. I can't tell you how many times Peter and I walked through this lot to get to the brick building. On the ground floor of that building, was the only decent restaurant on campus. We waited in that restaurant for HOURS as Mattie endured three major surgeries. Some surgeries were over 12 hours in duration. I even took Mattie to this restaurant once as a treat for enduring a two hour bone scan. Various parts of the Hospital campus mean something to me, as I am sure this is the case for other patients/families as well. Yet change and progress march forward, while I am stuck in the past. Which is why I am taking photos of this space before it becomes unrecognizable. 

April 18, 2018

Wednesday, April 18, 2018

Wednesday, April 18, 2018

Tonight's picture was taken in April of 2008. Our next door neighbors moved to New York that year and decided to mail Mattie a birthday gift. Mattie loved the brown paper that surrounded the box. If you notice our friends drew on the paper and wrote all sorts of messages to Mattie to wish him a happy birthday. He absolutely loved it and we displayed the paper for a couple of days! 


Quote of the day: Donors don’t give to institutions. They invest in ideas and people in whom they believe.G.T. Smith


I would like to highlight our 23 corporate sponsors of this year's Walk & Family Festival. Attracting sponsors is no easy task! Just ask anyone who fundraises. It is a labor of love because it involves networking and explaining the purpose and mission of Mattie Miracle. Years ago we tried to cold call local businesses and organizations to ask for sponsorship support of our annual awareness Walk. We did not get too far with that. Instead, we now make targeted asks. 

Thankfully in addition to just me working on this, I have two friends who began to help me with sponsorships last year. The more people who help Mattie Miracle find sponsors the better. Since we all travel around in different circles and interact with different businesses. My two friends have been successful at getting 10 of the sponsors on this list. 

To put this into context. Last year, our Walk had 16 corporate sponsors. We added 7 new sponsors this year to give us a total of 23! These sponsors (in total) have donated to Walk 2018, $29,750.



Mattie Miracle Level ($5,000)

  • TeraThink
  • Anthem


Platinum Level ($2,500)

  • Children's Hospital at Sinai
  • Inovalon
  • Kearney & Company
  • MedStar Georgetown University Hospital







Gold Level ($1,000)
  • ECS, Federal
  • Fairlington Dental
  • Georgetown Pilates
  • Ostendio
  • Results Direct
  • Robert & Tyler of Washington Fine Properties
Silver Level ($500)

  • Alexandria Children's Dentistry
  • Edelman Financial
  • The Goodhart Group
  • SKS Dental
Bronze Level ($250)

  • After-Mouse.Com
  • Ann & Melissa
  • Chris Lantos Foundation
  • Deehan Landscaping
  • Elevation Burger
  • HBP
  • JL Tree Service

April 17, 2018

Tuesday, April 17, 2018

Tuesday, April 17, 2018 -- Mattie died 448 weeks ago today.

Tonight's picture was taken in April of 2008. In front of Mattie was a slice of ice cream cake. This was NOT Mattie's birthday cake that was served at his party. Mattie had two cakes. A large one for his friends and then a small one for just the three of us at home. I always loved having a Carvel ice cream cake for my birthday. I have a summer birthday, and given that the weather is warm in July, ice cream was always the perfect type of cake for me. If you know a Carvel cake, then you are aware of the fact that it has vanilla and chocolate ice cream layers. Mattie despised chocolate. He did not like its look, smell or taste. So if you look closely at this photo, you will notice that I carved out the chocolate layer of ice cream and gave Mattie two layers of vanilla instead! In any case, we celebrated a birthday week with Mattie, not just one day. 


Quote of the day: "A greylag goose that has lost its partner shows all the symptoms that [developmental psychologist] John Bowlby has described in young human children in his famous book Infant Grief . . . the eyes sink deep into their sockets, and the individual has an overall drooping experience, literally letting the head hang . . ." ~ Conrad Lorenz


In light of non-stop work today for the Foundation, I am posting something cute and yet intriguing! My mom sent me a cute email about the story of a lonely goose who is running around a neighborhood in Florida. The goose is causing havoc..... tearing through house screens, chasing children, and scaring residents. I included the link to the article and video below. Why? Well not just for its humor but I was fascinated when a resident noticed that the goose's personality changed soon after the death of his goose friend. Rather an astute observation!

We think of our feathered friends as being not too smart. After all being labeled a bird brain isn't a nice commentary. Yet humans are not the only ones to express emotion, at least an emotion like grief. I love tonight's quote from a Nobel laureate ethologist who has observed the impact of loss on a goose. The goose seemed to exhibit some of the same traits we do when grieving. 

All I know is when Mattie died, we saw both Patches (our calico cat) and JJ (our resident Jack Russell Terrier) contend with grief. The cat and the dog expressed it in different ways. Patches spent a lot of time in Mattie's room and sitting on his pillows (something she never did), and she developed urinary issues (a sign of grief, according to our vet). As for JJ, he would come down to our unit and sit on our doorstep. He refused to eat for two weeks and apparently even slept with an old sandal of Mattie's for many months. None of us directed these animals to do this, they just did it. 

Perhaps grief means something different to animals. It may, but what is clear is animals bond and when the bond is broken, there are consequences on behavior. Perhaps this goose feels the need to strut around and honk at others to get attention! To let others know something is wrong, something is MISSING! I relate to that goose, but unfortunately people don't honk nor is it socially acceptable to call attention to a loss (for any extended period of time). 


Lonely goose runs a fowl, causing chaos in DeBary neighborhood

https://www.clickorlando.com/news/lonely-goose-runs-a-fowl-causing-chaos-in-debary-neighborhood

April 16, 2018

Monday, April 16, 2018

Monday, April 16, 2018

Tonight's picture was taken in April of 2009. Mattie was home, in between treatments. What Mattie was showing the camera was his corn flake. I suspect he thought the flake looked like an animal and wanted to make sure I saw it. Mattie had a good sense of humor and we understood each other. However, given all that Mattie was dealing with, one has to ask..... why was he smiling? That was the beauty of Mattie. Between the pain and inability to function independently, it makes you wonder, but I do think most adults couldn't have managed what Mattie coped with on a daily basis.  


Quote of the day: The great pleasure of a dog is that you may make a fool of yourself with him and not only will he not scold you, but he will make a fool of himself too. Samuel Butler


Over the course of the past year, I have bumped into two women on occasion at the waterfront. We bump into each other while we are all walking our dogs. They have three lovely dogs, dogs that like Sunny. Of course Sunny, is my ambassador and wants to get to meet and greet all furry friends. 

Last week, I noticed one of the women was missing a dog. She only had one dog in tow. It turns out the other dog was ill and died. So I caught her on the first week anniversary of her dog's death. Now here's the thing.....


One, she opened up her tote bag and showed me a box of her dog's ashes. She explained that he was an important part of her life and wants him to continue to be with her. The second thing she told me was that she was planning a trip to Europe because she promised her dog that he could see another continent with her. So she feels taking his ashes will fulfill that promise. I am aware of the fact that one and two may sound very off to anyone that hears them. In fact, before losing Mattie, I may have thought this woman needed serious support. Or at least she wasn't coming to terms with her grief. 


But I would say I feel differently now. When Patches died (March 20, 2013), I could not part with her (she was a loyal companion to us and Mattie for 17 years). Nor did I want to hear about how the vet would dispose of her body. So we had her cremated. She is in the reddish box on this stand. A stand that has many of Mattie's items on it. It is true I did not carry Patches box around with me, but I can understand why this woman does. 

In fact, the woman in question said to me..... "you must think I am nuts." My response was "no, I think you miss your companion, and we all need to figure out how to deal with loss in our own way." Needless to say this woman was in tears over the loss of her dog. She explained what he meant to her and she really viewed him like her child. In fact, now that he died, I think she is questioning her own mortality and what the purpose of her life is. She has never asked me why I understand what she is feeling, and even if she asked, I most likely would stay on the surface. 

When we lose a loved one in our lives, some people make a piece of jewelry or another object from the ashes. There are all sorts of companies to help us with this desire. Why is that socially acceptable and yet it isn't acceptable to carry the ashes of one's pet? I am not sure why this did not bother me, but when I met a mom in September of 2017, who came up to our Mattie Miracle booth at an outdoor awareness event and introduced me to her teddy bear as her son this bothered me greatly. I think I was totally caught off guard by the fact that she thought the bear represented her son, until I put one and one together and deduced the bear was the receptacle holding his ashes. The difference I felt about these two women, was the woman with the dog was very aware of the fact her dog died. She just wanted to feel his presence and honor his life. Whereas the mom with the teddy bear, I really wasn't sure what her motive was for carrying the ashes. She clearly loved the shock factor as she told people the bear was her child. At first I really thought she believed the bear was her child. It took me a while to really figure out what she was telling me. 

Grief is complicated enough, without us purposefully making it more confusing. But one thing I have learned from Mattie's death is we all have to deal with the death and loss of a loved one in our own way. Which is why I suspect this woman carrying her dog's ashes even shared this with me. In fact, she thanked me for being open to listening without being judgmental. 

April 15, 2018

Sunday, April 15, 2018

Sunday, April 15, 2018

Tonight's picture was taken on April 4, 2009. Mattie's 7th and last birthday. Mattie was very excited that day because a handful of his closest friends came to the hospital to celebrate his birthday in the child life playroom. Mattie spent the day decorating the room and figuring out what games he wanted to play with his friends. After school, his friends came over and spent several hours with us playing games, having Georgetown Cupcakes, and even building a 3-D dinosaur puzzle. I am not sure who decided to take a photo of the three of us together, but I appreciate it. Peter and I reflected today that we have only a few photos of the three of us together at any point in Mattie's life. We were always the ones taking photos of Mattie or Mattie with others. Of course this was also before selfie technology was possible, which is a shame because I could have had many photos of the three of us together.


Quote of the day: Sometimes when we are generous in small, barely detectable ways it can change someone else's life forever.Margaret Cho


For the past several weeks we have been getting item donations for the Mattie Miracle Snack and Item Carts at MedStar Georgetown University Hospital (Washington, DC) and Children's Hospital at Sinai (Baltimore, MD). These item donations have come from around the entire Country. The beauty of an Amazon wish list makes this possible. 

We finished sorting all the items today and snapped a few photos to post on social media and in our upcoming newsletter. 

Do you love Indie, our Tortoise Shell cat? Just walking around inspecting the items while we were snapping photos!
Naturally if Indie is in the mix, so is Sunny! Sunny had no idea what was going on, as we were moving around boxes and things to stage this photo. This photo is deceptive, because there are a lot of items stuffed on this couch. 

Half of our donation with go to MedStar Georgetown and the other half will go to Children's Hospital at Sinai. Our first delivery will occur this coming Tuesday. 
The items donated include:

Coffee, candy, crayons, shampoo, conditioner, body wash, razors and shaving cream, lip balm, toothpaste, toothbrushes, lotion, floss, child themed bandaids, and nail files.

TOTALLY AMAZING! We are very grateful our community was so generous in memory of Mattie's 16th birthday as we help other families caring for a child with cancer.