Mattie Miracle 8th Annual Walk & Family Festival was an $88,000 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

Random Shots of Mattie, Family and Friends

November 14, 2015

Saturday, November 14, 2015

Saturday, November 14, 2015

Tonight's picture was taken in September of 2005. We took Mattie on a rowboat ride on the Potomac River. Peter did this often with Mattie on the weekends, but that day they wanted me to come along! Mattie loved being on the water and taking in everything in his environment. 


Quote of the day: Part of the problem with the word 'disabilities' is that it immediately suggests an inability to see or hear or walk or do other things that many of us take for granted. But what of people who can't feel? Or talk about their feelings? Or manage their feelings in constructive ways? What of people who aren't able to form close and strong relationships? And people who cannot find fulfillment in their lives, or those who have lost hope, who live in disappointment and bitterness and find in life no joy, no love? These, it seems to me, are the real disabilities. Fred Rogers



These are the socks Peter wore to our presentation today at the Florida Association of Pediatric Tumor Programs. I call these his Mattie Miracle socks!

I honestly wasn't sure how this presentation would go today. Mainly because in the spring of 2015, we presented at another nursing conference and we couldn't read the audience at all. They gave us little to no feedback. So I would say I went into this nursing conference somewhat hesitant. 


The Association invited and paid for Peter and I to present at their conference. They requested our attendance based on feedback they got last year from their conference attendees! Apparently attendees requested our presence and the expressed their feelings about the importance of talking about psychosocial care and our standards of care. 

Keep in mind that Peter and I were the ONLY non-healthcare professionals presenting at the conference, and I made note of that to the audience this morning. I polled the audience and asked for a show of hands regarding how many were parents, how many were in the healthcare profession and worked with children who have cancer, and finally how many are personally touched by childhood cancer. Well the majority of the audience raised their hands for my first two questions, but three out of 200 raised their hands in the audience to the question about childhood cancer personally affecting their lives. I mentioned how important it is to hear parent's perspectives and that it is from our experiences with Mattie that our vision to create a psychosocial standard of care was born. Without Mattie, I am pretty sure this standard wouldn't have been developed. 

Peter and I did a very solid and meaningful job presenting for an hour! Peter really connected with the audience of women, and we both felt they were hearing our message and were impressed and appreciative with the rigor of evidence that has been assembled to create the standards. When we were finished presenting, we literally got a standing ovation. I wasn't expecting this and was more shocked and stunned than allowing it to sink in. Not unusual for me. I find the role of presenting hard, because I feel it is important to always remain professional. Yet of course what we are presenting is VERY personal to us!! 

Check out the video of the standing ovation. Fortunately Peter was with it enough to capture this with his phone!


video


After we presented, we drove to the Don CeSar Hotel for a late breakfast. Loews Don CeSar Hotel is a Loews hotel located in St. Pete BeachFlorida, in the United States. Developed by Thomas Rowe and opened in 1928, it gained renown as the Gulf playground for America's pampered rich at the height of the Jazz Age and it still serves as a popular retreat for the rich and famous of today. The hotel was designed by Henry H. Dupont. Loews Don CeSar Hotel is a member of Historic Hotels of America, the official program of the National Trust for Historic Preservation.




Then we journeyed to the Weedon Island Preserve, an expansive 3,190-acre natural area located on Tampa Bay. This coastal system, comprised of aquatic and upland ecosystems, is home to numerous species of native plants and animals, an educational facility and a rich cultural history. Indigenous peoples occupied this site for thousands of years. Today, the preserve protects this wide diversity of natural and cultural resources for current and future generations. Weedon Island Preserve is also a well-known birding and fishing site.

Along our walk we saw trees covered with beautiful Spanish Moss.













We walked through a boardwalk of Mangroves. Which to me are special trees.... they really do look like they are walking in the water with their incredible root system.











What was NEW to us were these Mangrove Tree Crabs. At first I thought they were spots on the tree, since they are everywhere. But as Peter examined them, they moved! Totally amazing creatures, and actually kind of creepy when you see you are surrounded by them!
This Night Heron literally jumped out of a mangrove into the water. It was a special surprise. 












Have you ever seen trees dotted with Wood Storks?














A Red Bellied Woodpecker!





















This Osprey owned this perch! He wasn't moving and was so cooperative picture wise! He caught the attention of ALL of us on the boardwalk!

















There were lizards all around us too! This Preserve was peaceful, beautiful, and filled with all sorts of sightings. Not to mention is it was a beautiful weather day, and I have come to the conclusion that those in Florida do not realize how lucky they are!!!







November 13, 2015

Friday, November 13, 2015

Friday, November 13, 2015


Tonight's picture was taken on November 13, 2008, Peter's birthday. This was the last birthday Mattie celebrated with Peter. Mattie wanted to give Peter a gift, and decided to make him a model magic birthday cake. After he formed the cake, Mattie even colored each layer and made candles. Believe it or not, this cake still exists and sits on the bureau in our bedroom. When I see this Mattie creation, I am transported right back to this moment in time. 






Quote of the day: Let me tell you this: if you meet a loner, no matter what they tell you, it's not because they enjoy solitude. It's because they have tried to blend into the world before, and people continue to disappoint them. Jodi Picoult


Peter and I are headed to Tampa, FL this morning. We have been invited to present for an hour on Mattie Miracle and our Psychosocial Standards of Care at the Advances in Pediatric Hematology/Oncology Conference associated with the Florida Association of Pediatric Tumor Programs (FAPTP). FAPTP heard about us through their members who are familiar with our story and the development of the Standards. 

So the next time you hear from us, we will be in Florida! It has been a busy week with candy collecting and sorting, and next week I have a surgery. So the timing of this is truly incredible! I consider myself fortunate that I am healthy enough to go and to spread Mattie Miracle's message. Of course celebrating Peter's birthday today in Florida is a great change of pace for us, since acknowledging any special occasion for us is difficult. 

November 12, 2015

Thursday, November 12, 2015

Thursday, November 12, 2015

Tonight's picture was taken in September of 2005. Mattie absolutely loved our staircase, particularly climbing on the railings! As you can see I caught him in action!






Quote of the day: It's not how much we give but how much love we put into giving. ~  Mother Teresa




Today I visited the Ronald McDonald House in Falls Church, VA and met up with Barbara Clarke, the manager of the house. Mattie Miracle donated over 300 pounds of candy to the House today. 

Let me try to put this candy in perspective. What I am reporting is just the candy that I have picked up from people around town and what has been sent to my home address. However, keep in mind that there are three other homes that are also collecting candy and sorting it for Mattie Miracle. These other homes are inundated with candy as well. 

Now with that in mind, you wouldn't believe the input of candy. I can't deliver it fast enough, because as soon as I deliver several hundred pounds, MORE candy comes into my home to be organized and sorted. Take the last two days as an example..... I delivered 300 pounds to Children's Inn at NIH yesterday and today I delivered another 300 pounds to Ronald McDonald's House. Yet at the same time, I got a 500 pound candy donation yesterday (thanks to my friend Heidi and her Beverley Hills community in Alexandria) and a 700 pound donation today (thanks to my friend Margi and her friend Erin who coordinated the candy drive in Burke, VA). Just in our home alone we have processed through 2,000 pounds of candy this week.... a true TON of candy!!!


This is what my car looked like carrying home 700 pounds of candy. But candy carrying is not a simple process for me. It involves loading the car, and candy is heavy, and then transferring it to my shopping cart to carry it upstairs from the parking garage. As you can imagine it takes MANY trips from car to home with 700 pounds of candy. 


Then the candy comes into our home and it has to be either sorted or compiled together with other like candy. I have found putting candy in Ziplocs is the best way to store and transport candy. But again this all takes time. 








We literally have candy everywhere! Though this is our fifth year doing this Drive, I never get used to the incredible amount of candy that comes our way each year. The generosity is impressive as is the number of volunteers who sort candy with us! I could never manage all this candy without our volunteers and their tireless service to the cause. 













November 11, 2015

Wednesday, November 11, 2015

Wednesday, November 11, 2015

Tonight's composition was created for us by our Facebook friend, Tim Beck. I actually took of the photo of Mattie in July of 2003. Mattie was sitting on Peter's lap on the beach and was looking at the ocean for the first time. It was absolutely daunting as Mattie's fist and expression indicates. Tim sent us this composition today and as I told him seeing this made me happy. Here is a person who lives in Arizona, who I never met and yet I feel like he appreciates what I am living without! I wrote this to Tim tonight, "Do you have any idea what kind of happiness and peace you bring to parents like me? You help us acknowledge our grief (and also show the world that it is acceptable to grieve FOREVER for our children), capture the spirit and essence of our children, and with each composition I feel as if you are helping me keep Mattie's memory alive."


Quote of the day: Candy is nature's way of making up for Mondays. ~ Rebecca Gober


This morning I drove to the Children's Inn at the National Institutes of Health. If you have never been to NIH's campus, well then let me assure you it isn't easy to access as a visitor. You need to go through a check point gate, in which you walk through a metal detector and your car gets inspected! Every aspect of it. So if you think you are just going to waltz in, deliver candy and leave..... it isn't going to happen. You have to think strategically when going to NIH, because it requires time. However, to my advantage today, I went on Veteran's Day. Therefore most of the agency was on holiday and traffic through the gate was non-existent. Everyone seemed more at ease and I spoke to several of the guards, who wished me a good trick or treating! Since they inspected all the candy in the trunk! I delivered close to 300 pounds of candy to the Inn today and fortunately they have this wonderful cart to schlep it inside. However, I had people taking photos of the candy and several people started chatting to me about the favorite candy they saw on the cart! It was a very lovely visit! 

After NIH, I then drove to my friend Heidi's house. Heidi has been doing a collection for the Foundation in her neighborhood as well as sorting the candy. This was ALL the candy Heidi sorted! It is a lot of candy, try around 500 pounds. I really appreciate when people sort the candy by type for us, because it is a very labor intensive process! 



Our newest addition to our candy collectors and sorters is St. Mary's Catholic School in Alexandria, VA. These girls are part of the Junior Catholic Daughters Club and they told me they enjoyed sorting and working for a great cause. 



November 10, 2015

Tuesday, November 10, 2015

Tuesday, November 10, 2015 -- Mattie died 321 weeks ago today.

Tonight's picture was taken in November of 2005. Mattie was three years old and he loved spending time in our room and in our bed. We spent many a time at night reading there, playing, and at times when Mattie was battling cancer, he would watch Scooby Doo movies from this perch. 


Quote of the day: There’s nothing as cozy as a piece of candy and a book. ~  Betty MacDonald



My friend Debbie sent me this photo today. Apparently it is Vanilla Cupcake Day. When Debbie saw this sign, she took a photo of it for me and then also had a cupcake in honor of Mattie. This was a very touching email to receive! Mattie lived on vanilla frosted cupcakes when he was in the hospital. I made cupcakes any chance I was home, brought them to the hospital, and used them as incentives for Mattie to do his physical therapy. Many of us can't look at a vanilla cupcake without thinking of Mattie. 


This afternoon, I went to the Lab School of Washington to pick up their load of candy for Mattie Miracle. The Lab School has been donating candy to us for the last three years. When I go to pick up the candy, I also get the opportunity to meet the children who collected and helped sort it, as well as explain the purpose of the collection and where the candy will go. 

Collection and sorting is a process. Because I pick it up, bring it upstairs to our home, and then begin to sort it. As you can see our dining room looks like Candy Chaos! I am thankful that many schools and organizations donating candy this year are also using their own volunteers to sort it. This helps greatly manage what our team has to sort. However, there is still plenty of candy that comes in to us unsorted. It comes in by the garbage bag full, which is a daunting sight and just as daunting to sort. However, if candy isn't sorted it all takes on the smell and flavor of the other long term. In addition, I have found that it is important to sort the candy in order to inspect it. So though laborious, there is a purpose for the sorting. Meanwhile keep in mind that I have friends with dining rooms that look just as chaotic all around town, as they are collecting candy and sorting for Mattie Miracle. 


November 9, 2015

Monday, November 9, 2015

Monday, November 9, 2015

Tonight's picture was taken in September of 2005. I literally just found this photo tonight on our Shutterfly account. I have not seen this picture in YEARS! I frankly do not even remember this moment in time. Other than we took Mattie along the Potomac River to go in a row boat and to have a picnic. However, this was classic Mattie. Always looking for items that intrigued him. Many times the items came home with us. Clearly not in this particular case! 


Quote of the day: Patience serves as a protection against wrongs as clothes do against cold. For if you put on more clothes as the cold increases, it will have no power to hurt you. So in like manner you must grow in patience when you meet with great wrongs. ~  Leonardo da Vinci


I spent another full day at the hospital today doing more assessments. One thing about Virginia Hospital Center is that they really do try to make the torture as simple as possible. People tend to be professional, concerned about the patient experience, and therefore as a result you land up feeling better about the process. Naturally when not feeling well and anxious, one doesn't need much to be set over the edge. But in comparison to other hospitals, their professionalism matters and makes a difference. Though I like Georgetown for various reasons, they really need to learn a great deal from Virginia Hospital Center. Every time you deal with Georgetown and you interface with administrative staff in a doctor's office or radiology (my favorite nightmare!) they are either surely, attitudinal, or talking amongst themselves. So in a way, they make you feel like you are bothering them. It is a demeanor in the health care setting that I have NO tolerance for. When you aren't feeling well, the last thing you want to hear is chatting about people going on a date, living a normal life and the list goes on. This is a place of business and therefore I would hope they would be sensitive to those around them and why they came in for testing or to see the doctor. 

I was talking to my friend today about the overall lack of psychosocial care within a hospital setting. Think about going for testing, whatever test it may be.... xray, ct scan, MRI, or Mammogram. Half the time you are told to comply, sit still and undergo procedures that you have no idea about. For example you may not know the length of time the scan will take, how contrast in scanning will make you feel, or how things are being assessed. This lack of information is daunting. No one should just be expected to comply without be educated about what they will be undergoing. That is part one of the problem. Then part two of the problem is what if you are given a result? What happens when you are told that you potentially have a cancerous mass?! Who is there to support you when you hear this news? Who helps you deal with this reality at that particular moment in time? The answer is NO ONE! You are on your own. I assure you when you are told that you or someone you love has cancer, it is traumatizing and to me it is unconscionable that the medical profession sees no problem dumping this news on us without taking the responsibility for how this might be perceived! 

I may go through all the testing and look compliant, but do they really know how anxious I am? That I went through cancer with Mattie and lost him after 14 months? The answer is also NO, and frankly I am not sure they care! There isn't time to care and they aren't being paid to care. They are being paid to test, diagnosis and treat. Treat with medicine, however, there is a whole other part of us that is being negated in this process.... our psychological, emotional, and social side. 


When I got home today, I received photos of a load of candy that was dropped off to us from the Arlington Unitarian Co-Op Preschool. This is the first year this preschool participated in our drive. However, they not only collected candy, they also sorted it! Check out this cute box the kids designed to collect candy at their School.












There were many boxes filled with candy! 














Get the picture!?





















I always love seeing the cute signs, notes, and cards the children leave for the Foundation. Some of these notes are meant to be given to children and families at the hospital. Which of course we pass them along when appropriate! 

November 8, 2015

Sunday, November 8, 2015

Sunday, November 8, 2015

Tonight's picture was taken in November of 2005. This is another photo I have just found through our Shutterfly account. But to me it is adorable and so wonderful to have it back in my files. This was quintessential Mattie... always building and his milk sippy cup was never far from reach. In fact Mattie drank so much milk that I figured he would have the strongest bones around. Clearly osteosarcoma missed that memo about consuming milk and having healthy bones!


Quote of the day: People with anxiety and trust issues find themselves drawn to people of consistency because they feel safe with someone who is predictable. However, that doesn’t cure their problem. The anxious person still remains the same because anxiety is a wave that crashes on the shore every time an unpredictable circumstance challenges their expectations and comfort zone. Shannon L. Alder



Peter and I worked most of the day on Foundation items. Which is wonderful, but also very absorbing and it can feel as if poof there goes another day. Peter and I had the opportunity to speak with a reporter from The Washington Post on Friday, and in our conversation he asked what it is like to work for the Foundation full time. On a subject area that is so personal and has affected our lives so deeply. It was an excellent question actually because clearly we do what we do because it is a way of keeping Mattie's memory alive and to build his legacy. There has to be some reason why Mattie went through his horrific battle. I am still looking for the why, but in the meantime, I can't let childhood cancer just die from our lives because then in a way we would lose all connections to Mattie. But is the Foundation all consuming? Absolutely. Yet I told the reporter, when you think about the fact that the Foundation is our figurative baby, that it represents Mattie.... then caring for it 24 by 7 isn't that unusual. Any parent nurtures and helps develop their child. Not just from 9 to 5, but ALL THE TIME. The Foundation is just like that, and requires the same devotion. Maybe even more in a way, because we get no feedback, no two way nurturing and love, and basically at the end of the day we have to be satisfied with our own results. 


My friend Jane sent me these photos last night. Jane hosted a candy sorting party at her home. As you can see the kids developed their own way to sort the candy. I have found that each sorting group has their own style and strategy for sorting, and in the end the results are the same. I enjoy seeing the creativity! 













Some people like sorting using bowls and some prefer to sort on a flat surface. At Jane's party, both methods were used. 











Sorting is truly fun for all ages. Kids love to sort candy. Probably because of the nature of the subject matter, but I also think it is the process. Even when children are infants, they seem to gravitate to sorting colors and shapes, and frankly even now as an adult I find the whole process of sorting therapeutic. 
We thank the Lytle, Pisano, and Sparrow families for a very productive sorting party on Saturday!