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 14, 2018

Saturday, April 14, 2018

Saturday, April 14, 2018

Tonight's picture was taken in June of 2009 at my friend Christine's home. Christine hosted a 7th birthday party for Mattie. That was his second birthday party that year...... one in the hospital and the other at Christine's. As you can see Christine's husband, James, got dressed up as a roach because he knew how much Mattie loved them, or at least loved to tease me about them! But check out the cake!!! Christine found a baker to create a cake in the shape of a roach! How do you like that????


Quote of the day: I grow plants for many reasons: to please my eye or to please my soul, to challenge the elements or to challenge my patience, for novelty or for nostalgia, but mostly for the joy in seeing them grow. ~ David Hobson


Check out our morning supervisor, Indie the cat!

Yesterday evening we bought all the plants we needed for our deck. So this morning at around 11am we began the clean up process. I am not sure what is worse cleaning up the deck from winter or planting in all of our flower pots. The verdict is out, but given that it was like a summer weather day, we knew we had to get it done today. As tomorrow it returns to gray and cooler! 

Yet it is 7pm, and we finally stopped moving for the day. An 8 hour commitment!

Here are some photos of the deck!
Seeing all the color makes us feel better, given the cold and gray winter we have had. 
The deck has all sorts of Mattie symbols and reminders on it such as butterflies, to his fountains he made me for my birthday, his wind chimes we bought together, and of course sticks and shells Mattie collected over time. 
Mattie would have loved our colorful metal gecko. You may see the orange wind chimes hanging from the basket..... they are the chimes we bought together. 

April 13, 2018

Friday, April 13, 2018

Friday, April 13, 2018

Tonight's picture was taken on April 4, 2009. This was Mattie's 7th and last birthday, which he celebrated in the hospital. Kneeling next to Mattie is Brandon. Brandon was Mattie's closest buddy in the hospital, as they both were diagnosed and treated at the same time. Despite their 12 year age difference, Mattie and Brandon were great friends. They understood each other and they provided different things to one another, that helped  managed chemotherapy, surgeries, and feeling ill. Though Brandon had completed treatment months before Mattie's birthday, Brandon came back often to visit Mattie and to celebrate special occasions with him. If I had to give this photo a title, it would be, FRIENDS.


Quote of the day: "Is the spring coming?" he said. "What is it like?". . . "It is the sun shining on the rain and the rain falling on the sunshine" . . . ~ Frances Hodgson Burnett



Welcome to our tag team! When they aren't getting their needs met..... this is what we get! Doesn't Sunny's eyes say it all?!
Indie took to lying down and Sunny was just disgusted, as work was taking precedence over a walk! 










But don't despair! We took a walk this afternoon in what seemed like summer weather. We passed incredible trees along the way, like this cherry tree. 
 This cherry tree has the perfect shape!
 Mattie Miracle tulips!
The park near us has crab apple trees in it and when they bloom in the spring they are amazing. Not only in color but fragrance. 
I honestly can't wait to donate the toiletry items we have been collecting for Mattie's 16th birthday to the hospital next week. All these boxes were delivered to us today, and we will be sorting and processing the contents in them tonight. We want to thank St. Columba's Preschool in Washington, DC for their wonderful item drive collection for us. 
Later today we got a jump on plant shopping, so we can begin our garden tomorrow morning. Not sure where we get the energy to plant a garden while also dealing with the Walk, but we manage. It is a long weekend of work ahead... planting, toiletry item sorting, and staging raffle baskets for our event on May 20th. 
I end tonight's posting with this..... this is the homeless man living up the street from us. He is taking over 23rd street. This photo doesn't do it justice, as he has a cot, clothes, and other items lined along a city block. He has moved in for months and apparently he has more rights to live here than I do. I pay to live in Foggy Bottom, and as a tax paying citizen I have no voice in the District of Columbia about the homelessness population. I concur with DC that resources and a system needs to be put in place to help our homeless residents, but we disagree on the execution of the support. As I do not deem living on the street support or being charitable. Rather it is putting these residents in danger and frankly our nation's capital should be doing better for all its residents. Seeing such sights in DC should not become common place and yet I am the only one who seems upset that this man is taking up a city block in front of the George Washington University. 

April 12, 2018

Thursday, April 12, 2018

Thursday, April 12, 2018

In honor of my dad's birthday today, I am posting this photo. It was taken in March of 2008. I took Mattie to Los Angeles to stay with my parents for a few days, as I had a conference to travel to in Hawaii. I rarely left Mattie, but he did great and had a wonderful time with my parents. While I was in LA, we took Mattie to the Arboretum. Which is an incredible place in Arcadia, CA. It was one of the stops Mattie always enjoyed returning to. But that makes sense if you knew Mattie.... he was all about being outside. Which is how I grew to love being outdoors, as I was not that way prior to having Mattie. 



Quote of the day: Friendship is born at that moment when one person says to another: ‘What! You too? I thought I was the only one. ~ C.S. Lewis


Today I went to Reston, VA and met up with my friend, Mary Ann. Mary Ann and I met in graduate school. In fact, we bonded over ethics of counseling. Unlike most of the students in the class, we took the assignments seriously and particularly loved the on-line exercises in which we had to present ethical dilemmas from our daily lives and discuss them with a counseling lens. Mary Ann and I had a field day with this assignment and in the process of communicating about issues, we had the opportunity to express ideas, feelings, and perspectives. You can learn a lot about a person when dialoguing about ethical dilemmas. From that class we became friends. If I had to title this photo, it would be..... through the years, sharing the ups and downs.  


This may look confusing, but this is how L'Auberge (a family run restaurant in Great Falls, VA) presents a birthday dessert. It is a meringue like no other, surrounded by ice cream.
We also had chocolate souffles and you will notice the tea pot! I absolutely love how they serve tea. To me it isn't only about drinking the tea, but what it is served in can make it a special experience.  

April 11, 2018

Wednesday, April 11, 2018

Wednesday, April 11, 2018

Tonight's picture was taken in April of 2008, during Mattie's sixth birthday party! Mattie wanted a bowling party, so that was what we planned.... using a Scooby Doo theme of course! Mattie LOVED Scooby Doo and we invited his entire kindergarten class and some close friends from preschool. So it was a FULL event!!! However, as the party kept going, Mattie looked tired and worn down. Right after the party Mattie took the the couch with a raging fever. You may notice the Scooby Doo mystery machine on the cake. This little toy car can still be found in Mattie's bedroom, it was one popular item and remembrance from that party. 



Quote of the day: There’s nothing greater in the world than when somebody on the team does something good, and everybody gathers around to pat him on the back. ~ Billy Martin


Today we received the photo below from Lori, a co-director of the Behavioral Health Core and head of the Psychosocial Support and Research Program at NIH. Lori has been working closely with us since 2012. Mattie Miracle may have had the vision for the Psychosocial Standards of Care, but it is Lori who assembled a team of over 80 health care professionals (from around the Country, Canada, and the Netherlands) to develop these evidence based Standards. I assure you that may sound easy, but it wasn't! It required the right type of skill set and leadership of which Lori has both. Creating the Standards was a three year endeavor, but the outcome was that the team produced the first publication of its kind in the psychosocial field for childhood cancer. A publication Mattie Miracle fully funded and has paid for indefinite open access, so the public can read the entire publication at any time. 


Lori is the second person from the right, in the front row. This group of 12 social workers formed a focus group at the 42nd conference of the Association of Pediatric Oncology Social Workers (APOSW) in Austin, TX. Mattie Miracle funded this focus group luncheon in order to get feedback from pediatric oncology social workers regarding a checklist we have been working developing. The Standards themselves are hundreds of pages long. Too long to be truly useful from a practical standpoint. Which is why we are working with Lori and others to develop a guide on how each Standard can be implemented at a treatment site and then a checklist to help the clinician/program determine how well the Standard is being met. 

The purpose of the focus group was to have clinicians evaluate the checklist to see if it was clear and most importantly usable. I look forward to hearing the feedback, but I heard there was a lot of energy at the luncheon. People were familiar with the Standards and are very anxious for something tangible to use to take back to their practice. Given our schedules, it wasn't feasible for Peter and I to go to this conference, but as always Mattie Miracle is happy to be involved and fund anything that will help implement the Standards. 

April 10, 2018

Tuesday, April 10, 2018

Tuesday, April 10, 2018 -- Mattie died 447 weeks ago today.

Tonight's picture was taken in April of 2007. This was the morning of Mattie's fifth birthday party. This was a party to REMEMBER! As you can see from the cake, Mattie was in love with Lightning McQueen and that entire Pixar movie. That year we held Mattie's party at the National Zoo. Good in theory, but we learned the hard way that the Zoo hosts the party RAIN OR SHINE. On the day of Mattie's party it was raining, not just a a drizzle, but more like a torrential downpour. I thought the party was going to be a disaster and everyone was going to be miserable. It may have been the best party ever for several reasons.... 1) the Zoo was empty, as the zoo staff gave us a tour, it was like having the Zoo all to ourselves, 2) animals apparently like being out in the rain, and those animals you rarely see were out and about, and 3) kids love getting wet, they enjoyed being under umbrellas and felt like the zoo tour was a true adventure, as it felt like we were walking in a rain forest. 


Quote of the day: A real conversation always contains an invitation. You are inviting another person to reveal herself or himself to you, to tell you who they are or what they want. ~ David Whyte


For the last couple of months, we have been helping researchers with the design of a bereavement survey. A survey that could be completed by parents who lost a child to cancer. It has been an interesting experience to share our insights into the survey's design and our view point on the content being solicited. Peter is an active member on a closed bereavement group on Facebook. I am a member too, but the group has more significance to Peter. I would imagine because we approach the group needing different things from it. 

If I am going to talk about Mattie and my experiences, I would like others to really listen and respond to the content and the feelings. However, what I have learned from DAY ONE after losing Mattie, is that my support can't come from fellow bereaved parents. What I am also well aware of is that many other bereaved parents would disagree with me, as they feel that only those of us in this special group understand each other. I have yet to find that, and I suspect this is the case because we are all grieving and to each of us, our grief is the worst. Talking about loss ironically can set up a sick form of competition.... "my loss is worse than yours," "my child suffered more," and the list goes on. All of these comments have been directed to me, so I am not manufacturing this from the top of my head. 

Nonetheless, the researchers asked Peter to post this bereavement survey on the closed Facebook group site. This group has over 1,000 members and only 100 surveys need to be completed to collect significant data. Therefore only ten percent of the membership really needs to respond. The response rate is what surprises me as well as the reaction to the survey. As a fellow bereaved parent, I thought others would jump at the chance to talk about their experiences and what was missing from their child's end of life care and their own bereavement support. I do think parents feel end of life and bereavement are areas very poorly supported at treatment sites. But despite that, a majority of parents appear hesitant to take the survey. Keep in mind that the survey links people OFF of Facebook and into a secure survey site. So sensitive data is not being captured by Facebook. Which has clearly been a consistent problem with Facebook. 

What I surmise is the survey is too intense and emotional for parents to get through. But this has me pausing because I took the survey and was energized to complete it. I spent about thirty minutes on the survey because I wanted to give detailed responses to any open ended question asked. As such feedback can only help future psychosocial care. Clinicians don't know what is working and what isn't working without our feedback. I also fine anytime I can meaningfully share our experiences and story, it is beneficial. But this is where I again differ from a good chunk of bereaved parents. So naturally the mental health professional in me asks WHY? Why am I so different? 

Certainly there could be a host of reasons, but I think first and foremost the main reason is because I reflect on Mattie's loss daily. Whether through this blog or in our Foundation work. Talking and reflecting about Mattie's life and loss are like a fifth appendage in me. It comes naturally like brushing my teeth. Therefore, completing this survey was stimulating and gave me the opportunity to share what didn't and still doesn't work with professionals who potentially can change how care is provided to future families. 

April 9, 2018

Monday, April 9, 2018

Monday, April 9, 2018

Tonight's picture was taken in April of 2006. Mattie was celebrating his fourth birthday at Riverbend Nature Center in Great Falls, VA. This was Mattie's first birthday party outside of our home. That year we invited only a handful of preschool buddies to the party. Mainly because Mattie's preschool teacher said with this age group, kids can get overwhelmed easily. So it was better to have the same number of kids in attendance as the age Mattie was turning. So we invited four of Mattie's close friends to a dinosaur party, which involved a trip through the woods with a naturalist, a dinosaur dig in a sandbox, a meet and greet with animals like snakes and turtles, and a pinata and cake. 


Quote of the day: That no one dies of migraine seems, to someone deep into an attack, an ambiguous blessing. Joan Didion


Yesterday I developed a migraine and I can't say it is any better today. It is the type of headache where you just can't get any peace, even from closing your eyes and trying to rest. Rest isn't possible. So tonight's positing will be very short!

Migraine and all, I worked the entire day on Foundation things and of course walked Sunny. While down by the Potomac River with Sunny, I could see anhingas floating in the water. The anhinga is also called the snake bird, because of its snake like head protruding in the water. I saw many of these birds in Florida, but rarely in DC. Especially when it is so cold (as today felt like WINTER). So I felt this was a little piece of Florida coming to visit with me today. 

April 8, 2018

Sunday, April 8, 2018

Sunday, April 8, 2018

Tonight's picture was taken in April of 2005. It was during Mattie's third birthday party. This was the last birthday party we held in our home. After that, we hosted a themed party outside of our home. However, we had an Elmo party to celebrate Mattie's first birthday, a train party to celebrate Mattie's second birthday, and a Blue's Clues party to celebrate Mattie's third birthday! For the first three birthdays, we always had a special artistic cake. I remember Mattie sitting in his car seat as I drove to Silver Spring, MD to pick up these cakes. It was always an outing that signaled to Mattie that his birthday was fast approaching. 


Quote of the day: An animal's eyes have the power to speak a great language. ~ Martin Buber


Peter went to our vet this morning to pick up Indie. When we are away, I never worry about Indie. Indie has a wonderful and easy going disposition. Meaning, she is happy with whatever you give her, as long as she is happy and safe. 

When Indie came home today she was thrilled. She wanted our attention, she wanted to play, and was interested in having outdoor time on our deck. Unfortunately since it is too chilly for her, she did not want to stay out long. However, once spring and summer kick in, she will be meowing at the door until we open it so she can sit outside. 
We picked up Sunny at his boarding place in Alexandria this afternoon. We chose this afternoon, so they could bathe him before he came home. However, when we went to pick him up at 2pm, he still hadn't been given a bath. Normally I wouldn't have been pleased, but Sunny sees Mandy (his groomer) on Wednesday. I knew Sunny wanted to come home and we weren't going to let him wait a minute longer. 
We walked Sunny for an hour and he was so happy to be outside, he was practically trotting, NOT walking. He loved sniffing trees and grass and chasing squirrels. But he was thrilled to get home and took to the couch. Meanwhile, I started to brush Sunny's coat. This is something I do daily since he is so woolly, like a sheep. Here is the first wave of fur I got off of him today, as he isn't brushed during boarding. Sunny absolutely loves all attention, especially brushing. 

All four of us are under one roof tonight and both Indie and Sunny are pleased!