Mattie Miracle 15th Anniversary Video

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 6, 2019

Saturday, April 6, 2019

Saturday, April 6, 2019

Tonight's picture was taken on April 4, 2009. This was Mattie 7th and last birthday with us. We celebrated the day in the child life playroom. Next to Mattie is Brandon. Though Mattie and Brandon are 11 years a part in age, they were good friends. Or as Mattie would say, "Brandon is my best friend." Mattie felt that Brandon understood him because they were both diagnosed with cancer at the same time. Though Brandon went into remission three months on treatment, he always came back to the hospital to visit Mattie. Keep in mind that Brandon lives over an hour away from the hospital. So to me this spoke to the power of friendship. 


Quote of the day: I love you every day. And now I will miss you every day. ~ Mitch Albom


We got up at 6:30am, packed up our rental and went to the Sanctuary hotel for breakfast. It is always a wonderful send off on a long trip ahead. This hotel is so elegant, but in an understated way. 


I have to say the trip from South Carolina to North Carolina goes quickly for me. It does thanks to these "South of the Border" signs. Signs that pop up every two miles, over an 80 mile stretch. I literally took pictures of 30 signs today. I haven't posted all of them, but you get the gist. These signs keep me busy and entertained in the passenger seat. 

I think the founder of "South of the Border" was ingenious when he created these signs. I can just picture kids on a long car trip, glued to the side of the road, looking for the next sign to pop up. Of course after the end of the 80 mile drive, is "South of the Border." In essence an amusement park geared for kids. I really think Mattie would have gotten a kick out of this. 
This one maybe my favorite... Hear no evil, see no evil, and speak no evil. 
The signs just make me laugh. 
Humorous no? You can see that most of the signs give you a count down until you arrive. This one tells you that you are 36 miles away from "South of the Border."
It makes you smile, no?
Mattie would have loved the car attached to the sign. 
Makes you chuckle. 
1/2 miles away!
Then you cross the border from South Carolina to North Carolina, you leave "South of the Border" behind and are greeted with Welcome to North Carolina. 

It was a 9 hour drive today. It made for a long day. But we can't get too comfortable as Monday we leave for Phoenix to attend and present at a conference. 

April 5, 2019

Friday, April 5, 2019

Friday, April 5, 2019

Tonight's picture was taken in April of 2008. It was Mattie's 6th birthday. That year we had Mattie's entire kindergarten class (and a few close preschool friends) at the party. Mattie wanted a bowling party. So that it what we planned, with a Scooby Doo theme. What you may not be able to see from this photo was that Mattie began running a high fever at his party. By the time it was over and we took him home, he landed up falling asleep on the couch. Which for Mattie, was unheard of!


Quote of the day: Remember that people are only guests in your story – the same way you are only a guest in theirs – so make the chapters worth reading. ~ Lauren Klarfeld


This was our sighting last night while sitting outside on our balcony. It has been chilly here, so sitting out on the balcony for me has meant having a blanket and a heating pad on me. Fortunately the patio has an electric outlet. Which has enabled me to enjoy being outside, as I love watching the waves, people walking the beach, and of course seeing the deer. 



When we woke up this morning it was pouring out. We really thought the day was going to be a wash out. But we got lucky, because by 11am, the rain moved out and eventually the sun even came out. 

Actually having the rain in the morning helped to slow me down. I slept longer and it is the first day I don't feel ill in some way or anxious. It has taken me a whole week to get to this point, but unfortunately we leave for home tomorrow. I have concluded with Peter, that we really need two weeks away, not one, as it takes me a week to dial it back. 


In honor of our last day here, we did not want to spend the day in the car. Instead, we wanted to be outside. So we decided to bicycle ride. Literally we biked 12 miles total. Half of it on the beach and the other half on biking paths. 

This is what we saw when on the beach, house after house! They are extraordinary. 
Peter was in front of me, but notice very few people on the beach. People are around, but there is SO much space, we are not on top of each other. I absolutely love this freedom of less people around me.
Passed all sorts of shore birds on our bike ride. The sand is so hard packed for miles that it makes it easy to ride on the beach. 
Horse shoe crab washed ashore during storm. 
I snapped this photo because to me this house looked like one big sand castle!
 A crab coming out to say hi!
This house was on the beach! The houses facing the Atlantic are enormous!
After about 5 miles, we got off the beach and then biked on pathways. Along our journey, there are many ponds next to houses. I am not sure what to look at first, the houses or the wildlife. Both are noteworthy! This anhinga was just sitting and enjoying the sunshine. 
Right next to another pond were several alligators and turtles. What you can't see from this photo, was behind this vegetation is a huge house. I am not sure how I would feel having these guys in my front yard. They say there are 600 alligators living on Kiawah Island. I feel like I have seen at least 30 alligators on this trip. The Island says if you stay away from them, they are harmless. The Island pays attention to these creatures and any alligator deemed a nuisance (meaning is looking to be fed and isn't scared of people) is captured. 

As we were riding on the pathway, in the middle of a residential neighborhood, out popped this deer. He literally was looking at us!
Toward the end of our 12 mile bike ride, we stopped at the Sanctuary Hotel. This is one elegant and yet not pretentious place. They had all sorts of Easter displays, which captured my attention. 
The lobby of the Sanctuary and everyone who works there is super helpful. 
We stopped for an ice cream at the Sanctuary and ate it on their outside terrace. This was our view. 













I end tonight with a photo of us with deer in the backdrop! 

April 4, 2019

Thursday, April 4, 2019

Thursday, April 4, 2019 -- Mattie's 17th birthday

Tonight's composition highlights all of Mattie's 7 birthdays with us. It is hard to believe he was with us for 7 years and now we have celebrated his birthday alone for ten years!  

Top row from left to right:
2002: Mattie's birth day at Virginia Hospital Center; 2003: Mattie's first birthday, with an Elmo theme; 2004: Mattie's second birthday, with a train theme
Middle row from left to right: 2006: Mattie's fourth birthday, with a dinosaur theme; 2009: Mattie's seventh and last birthday, celebrated in the hospital
Bottom row from left to right: 2005: Mattie's third birthday, with a Blues Clues theme; 2007: Mattie's fifth birthday, with a Cars theme; and 2008: Mattie's sixth birthday, with a Scooby Doo theme


Quote of the day: Because death is the only thing that could have ever kept him from you. ~ Ally Carter


On Mattie's 17th birthday, we decided to plan something to do, otherwise we would most likely retreat. Before I left DC, I bought tickets to a house tour of Charleston. Once a year, private homes open up to the public to showcase their history. We had access to tour ten homes today. We made it to half of them. After a while, I couldn't remember one house from the other. I believe this was the case because of how they were presented. 

First of all, when I booked the tickets, I booked a "walking tour." I literally thought we would have a tour guide who would take us from house to house. But that wasn't how it worked. Instead, we were given a passport to view all the houses and a map. We then had to find our way around on our own from house to house. Once at the house, there were guides. You can't tour the house freely and they move you along way too quickly. Not really giving you a good feeling for the history of the home or the people who currently live in it. So I would say the tour itself is disappointing. Putting that aside, I enjoyed going into these old beauties and getting more familiar with the Charleston "single house" style. 


When we drove from Kiawah Island today to Charleston, we have to cross over a bridge into Charleston. I snapped this photo over the bridge. 
The downtown historic part of Charleston is very charming. You see passage ways between homes that look like this.  
Each house plants incredible flower boxes. Boxes that are hanging from windows. I could literally do a flower box tour, that is how impressive they are.... colorful and so well put together. 
Among stunning architecture and well-preserved historic homes, Charleston boasts some of the world’s most beautiful and ornate gates. Guarding the entrance to a driveway or a secret garden, wrought iron gates can be found at the most prestigious of homes in downtown Charleston.

Historically, iron was not only made into gates, but also into grilles for first-floor windows, sharp spikes on top of fences, and boot scrapers (a necessity before paved streets). In the mid to late 1800's, iron was increasingly used for embellishing gates with beautiful life-like replicas of flowers, leaves and branches that reflected the popular Victorian style.
Before our house tours today, we had a wonderful lunch at Blossom. A sister restaurant to Magnolia (which we experienced last June). Sitting outside surrounded by greenery, hearing the chimes from the church spire in the background and seeing Charleston architecture was lovely. It was in the 60's today and as Peter said... it ranged from cold to warm at any given minute. 

Peter had his orange on, in memory of Mattie!










Schmidt-Connor House - 11 Montagu Street (1816)

Here are the exteriors of the five homes we toured today. We were not allowed to take photos inside the homes. This is a classic "single house." First thing you notice about Charleston homes is they are LONG and narrow. 

A single house has a long porch that runs the length of the structure and serves as an exterior hallway and patio. The interiors of Charleston single houses are consistent, usually one room wide and several rooms long.  It’s the exteriors of the houses that come in many shapes and styles, including Georgian, Federal, Italianate and many many more.  Another feature of the single house is the front door, which actually leads to the ground level porch or patio and then to the actual front door. 


Bernard Wohler House - 40 Montagu Street (1891)

I don't think I will forget this house anytime soon. The family living in it is from Italy. The family has occupied this house for many decades and the house is literally furnished with family heirlooms from Italy that date back many generations. 













Frances Carrere Robertson House - 91 Ashley Avenue (1898)

Main take away here was this house was designed by a woman. Which was VERY unusual back in the 1800's, as we were told that women only built homes or had land if they inherited it from a deceased husband. That wasn't the case here, as the woman in question was not a widow.


Edward L. Trenholm House - 93 Rutledge Avenue (1850)


This house was a beauty. Maybe my favorite. The sad part is that it was once 10,000 square feet in total. Now, the house has been partitioned. There are two apartments and an office, that occupy half of the house. 




George Gibbon House - 97 Rutledge Avenue (1885)

















On Mattie's birthday, I always post "My Dearest Mattie" letter. I wrote this letter and had it on display during Mattie's celebration of life ceremony in October of 2009. Mattie loved to hear about the day he was born. The last time I shared this story with him was on August 5, 2009, the day we learned Mattie's cancer metastasized throughout his body. Somehow he knew it was a bad day, and therefore climbed into my lap in the Hospital rose garden and requested to hear the story below. 

----------------------------------------

My Dearest Mattie,

It is said that parents love their children right from the moment they are born. However, in your case, our love for you began as soon as we learned we were going to have a baby. In fact, right after seeing your sonogram picture, we felt like proud parents. We posted those pictures everywhere. We shared these pictures with practically anyone who would listen or showed interest, and each September when I taught prenatal development in my undergraduate human development class, out would come your sonogram pictures to illustrate my points. Even my students got a sneak peek at our baby, a baby who would have a profound and meaningful impact on not just his parents but also every community he touched. Daddy and I did not only love you, we FELL IN LOVE with you, and that love grew stronger with each day. Your energy, spirit, love for life, intellectual challenges, sense of humor, and loyalty to your friends and family were only some of the wonderful traits we always admired in you.

This video is a tribute to you and your wonderful, yet short life. It seems fitting as we celebrate you, and say good-bye to your physical presence that I share the story about how you entered the world. The story of your birth had to be one of your most favorite stories to hear, and I found during times when you were reflective, overly tired, or in need of hugs and tenderness, the request for this story arose. In fact, I remember on August 5th, the day we found out that your cancer metastasized everywhere, you and I were sitting in the hospital’s rose garden, and you requested the story. It was almost as if you knew this was going to be a bad day, so in essence we might as well brace ourselves, cuddle, and prepare for this together.

Here is the story I always shared with you. A story Daddy and I will never forget. On April 2, 2002, at 11pm, I decided to head to bed. I was anxiously awaiting your birth, and as your due date approached, I couldn’t help but wonder, when will “the baby” be coming? I was restless and uncomfortable, so while in bed, I began to watch television. I was having trouble concentrating on what I was hearing, mainly because you were kicking up a storm inside of me. At which point, the kicking became so intense, that I literally felt something pop. You clearly wanted OUT, and you were going to kick your way into the world on your terms. Naturally after feeling this pop, I looked down at my tummy, and when I jumped out of bed, I realized my water had broken. This only happens to 25% of moms, and in retrospect, I should have guessed that this was just the beginning of how different our lives were going to be together. I immediately called the doctor and told her what happened. She asked if I was in pain, which I wasn’t, and she instead told me to get a good night’s rest, because my baby was going to be born the following day. Well I can assure you after hearing this news, sleeping was the farthest thing from our minds.

So on April 3, 2002, Daddy and I headed to the hospital and we were admitted to the maternity unit at 8am. The labor process began, but it was a VERY slow process for me, and at times as you moved inside my tummy, Daddy could see your head pushing against my backbone. Needless to say Dr. Mike, the anesthesiologist, became my favorite doctor that day. The hours kept rolling by, and still there was NO sign of our baby! I was getting weaker, I developed an 102 fever, and by 11pm I really had no energy to give birth to you. In addition, to how I was feeling, your oxygen supply was getting cut off, and your chin was positioned in such a way that would make the birthing process almost impossible. So it was at that point that the doctor recommended an emergency c-section. Things began to happen very quickly around me. I was signing paperwork for surgery and Daddy was being transformed by putting on a bunny suit so he could enter the operating room.

I had never been in an operating room before in my life, but I really wasn’t concerned at that point about myself. I was solely focused upon you. I was wide-awake for the c-section, but unable to see the process, which as you know, was probably a good thing. Daddy on the other hand found the whole thing very exciting, and began to videotape and take pictures of the surgery. Literally a team of people surrounded me and I will never forget Dr. Mike, the anesthesiologist who sat by my side, and talked with me and did whatever he could to keep me pain free.

When you have a c-section, your arms are strapped to the operating table, so I couldn’t move, and directly over my head was what appeared to be a rope with a clamp that was holding open my abdominal cavity. Normally by this point I would have passed out, but when it came to you, I developed strength I never knew I had. As the doctor began cutting, and finally got to you, the first thing she said was, “what is this?” That is NOT what you typically hope to hear when having a c-section. The doctor let me know that I had a grapefruit sized tumor on my bladder, and my immediate thought was, did this affect the baby? The next thing I knew, I felt her tugging, and I heard the loudest cry ever. Now here is the part of the story that I know was always your FAVORITE! I would always try to replicate the sound I heard coming from you that day, a sound that will always remain in a parent’s ear. It was a very large WAAHHH! WAAHHH! At which point the doctor told us two things: first, that you were one of the most beautiful babies she had ever seen, and second, that you had quite a set of lungs on you! I concurred with both statements.

The doctor then brought you over to me, and she felt that I needed to be the first person to touch you. So despite my arms strapped to the table, my right hand miraculously reached out and grabbed your tiny, soft, and cute foot. It was a moment I will always cherish, a moment in which I will never forget, and a moment I am so happy you too enjoyed hearing about. Each time I retold the story I felt as if it further bonded us together, and I always enjoyed hearing your comments, thoughts, and reactions to your story.

Seeing you made Daddy very happy! Though he was worried about me, since after the c-section, I had to have bladder surgery to remove the tumor, we both agreed that Daddy should stay with you and accompany you to the nursery. It is there that Daddy got to see you cleaned up, he learned that you weighed 6 pounds and 13 ounces, and that you had high Apgar scores of 8 and 9. Within an instant, Daddy became one of your fiercest protectors, and he cared for you for five days straight while we were in the hospital together. In fact, Daddy is the first person who changed your diaper, and though those were five very challenging days in the hospital, they were days that helped us form our strong family ties. Ties that were imperative and that we relied on for seven years of your life!

Your presence is so greatly missed. Nothing seems the same, is the same, looks, feels, or tastes the same without you in our lives. May you always know that Mommy and Daddy love you, cherish you, and that feeling will remain with us forever and always. Good-bye my Mooshi Moo angel and goodbye Daddy’s best buddy. With love from Una Moon and Daddy!

April 3, 2019

Wednesday, April 3, 2019

Wednesday, April 3, 2019

Tonight's picture was taken in April of 2007. It was the morning of Mattie's fifth birthday party. We held that party at the National Zoo. What an event that was. It was cold and pouring all day long. The Zoo's policy was  that parties happened rain or shine. I thought it was going to be a disaster, but it turned out to be a memorable adventure. The kids loved the fact that no one else was at the zoo besides them and to my surprise all the animals were out in the rain putting on a show for us. 


Quote of the day: What we have once enjoyed we can never lose; all that we deeply love becomes a part of us. ~ Helen Keller


We tried to unwind today, rather than spending the day in the car. Despite our best efforts not to work, we both are. Lots of things to do for the Walk and we even had a conference call this morning about a presentation we are doing next week in Phoenix. 

At around noon, we headed out for a bike ride on the beach. We did 8 miles together, and at times it was challenging, especially when riding into the wind. 
Peter snapped this of me. Considering all the various medical issues I have been dealing with lately, it is a miracle that I was able to get here and even bicycle ride. 
This was taken during what I called a 'pause.' Riding into the wind is a killer, and I had to take periodic breaks in order to catch my breath. As it is exhausting, and to be honest most people don't do it. They usually ride with the wind and either walk back against the wind, or ride through the neighborhood to avoid the wind on the beach. 
When riding into the wind, Peter and I ride at different paces. But it is an experiencing riding on the sand. The sand is very hard packed and it is a wonderful way to see the shore, the houses, and bird traffic. 
I love the pelican fly overs. I stopped my bicycle to capture this photo. 
The shore birds are everywhere. I love riding on the beach and seeing these pockets of water in the sand. It is where the birds like to hang out, and it also happens to be where we can find some wonderful shells. 
The actual ocean is straight ahead in the distance. I was actually riding on the sand, far from the shore line. It is deceptive when looking at this photo, because it looks like I am at the shore line. But I was not. 
Jellyfish were everywhere. In the water and on the sand. 
This is what the beach looked like today.... not fighting for space with other people. Sure we passed others on the beach, but for the most part this area is pristine, calming, and beautiful. 
The beauty of the dunes.
We had a lovely lunch at the Ocean golf course clubhouse. This was our view. Rolling green grass with the ocean in the backdrop. 
This evening, while sitting on our balcony (and I am under a blanket with a heating pad, because it isn't warm here), we were greeted by many deer.