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

August 16, 2014

Saturday, August 16, 2014

Saturday, August 16, 2014

Tonight's picture was taken on August 22 of 2009. What Mattie was holding in his hand was his tooth fairy box. He lost his front tooth that day and he put his tooth in the box with the hopes that the tooth fairy would visit that night and leave him a gift. Mattie did not want money. Instead, he would leave the tooth fairy a note with a specific request each time he lost a tooth. Sometimes he would ask for a Hotwheels car and I remember on one particular occasion he even asked for a necklace made out of raw pasta. A very interesting request indeed! I remember buying that tooth fairy box with Mattie on a trip we took to Florida together. He picked it out himself. I still have this box in my nightstand (with teeth inside), where I keep other mementos of mine. 


Quote of the day: If you want to lift yourself up, lift up someone else. ~ Booker T. Washington


This morning Peter was sitting at my desk proofing the book chapter. While he was there, he received a real treat! He got to see what I have been talking about..... he saw both a monarch butterfly and a hummingbird. He couldn't capture the butterfly, but he grabbed my phone and snapped a quick photo of the hummingbird in motion. If you look closely you will see the hummingbird is flying on in and targeting my petunias!!!! 










This afternoon, we went out for a walk. I feel like I haven't moved in ages, so walking is a great plan. We went passed Mattie's favorite fountain! I can't tell you how much water shoots up from this fountain, but the spray is INTENSE! The sky was a beautiful blue and Peter seemed to have caught the perfect composition with the Washington Monument in the background. 










At the very top of the fountain are these "Dancing Waters!" Or this is what I call them! Since this is what it looks like to me. It is mesmerizing and I suspect this maybe one of the aspects Mattie found so intriguing besides the sheer volume of the fountain's water.   





The fountain is also surrounded by roses! It is a glorious spot and people who pass by can't help but stop and want to photograph this space! If the water doesn't get you, then the flowers certainly will. 








We continued walking down to the Washington Mall. We spotted the US Park Police on horseback! I happen to love horses and Peter knew I rode horses in high school. I took a photo from afar but Peter suggested we go up to the horses and the officers. So we did. 






The officers were lovely and were very agreeable to take photos and to allow me to pet the horses. The brown horse's name was "Easy" and the bi-colored horse was "Magic." Easy couldn't take his eyes off of me and seemed to truly respond to my conversation with him. Beautiful animals and if you have never rode a horse, you are missing out on a special experience and connection with a wonderful animal. 

For quite some time the tidal pool has been drained and under renovation. We used to take Mattie down to this area often and we have many photos together with the Washington Monument in the background! 







To me no trip to the tidal pool would be complete without looking for ducks! Which is why it is so nice to see the pool filled back up and to have the ducks and the ducklings inhabiting the space again! This photo was taken in honor of Mattie, who loved looking for a mother duck and her ducklings. Mattie's comment would always be, "there is a mama duck and her baby.... just like you and me." Today while I was observing this wonderful sight of this mama duck and her six ducklings, I was watching a mom and her son interact. The little boy wanted to come over and watch the ducks. However, his mom pulled him away from the tidal pool and told him, "you have seen one duck, you have seen them all!" I personally was mortified! That is totally NOT the point on so many levels! What message is this mom sending to her child? No time to stop to watch the ducks? It is a sad commentary to me, and NO, not all ducks are alike! It is like saying all people are like and therefore when you have seen one person you have seen them all! But all of that is besides the point! The child is taking an interest in something in his world and that to me is where a parent needs to step in and embrace and cultivate that interest! 

August 15, 2014

Friday, August 15, 2014

Friday, August 15, 2014

Tonight's picture was taken in August of 2007. This big chair is actually a rocker. We got it when we were expecting Mattie! Thinking this would be the perfect chair to rock Mattie in! The irony was Mattie did not really like sitting or being rocked in a chair!!! I still have this chair, it seems to have migrated around our home. It is now in our bedroom. It was funny that I captured Mattie sitting on this chair because he really did not sit in it much, in fact, I would say Patches (our calico) spent more time in it! I happen to LOVE this chair and as I reflect on this photo, I remember what Mattie was wearing so vividly! It was his summer Scooby Doo pajama set! Mattie was in love with Scooby Doo and though his legs are blocking the picture of Scooby, I remember it well!

Quote of the day: Either write something worth reading or do something worth writing. ~ Benjamin Franklin

I think Benjamin Franklin said it so well!!! I usually do not sit back and take kudos. In fact, it is quite the opposite. I am usually hard on myself. But I would have to say in two months time, I not only wrote something worth reading, but I did something worth writing about! I can't take credit for the latter. 

Mattie unfortunately developed cancer and as such, Peter and I were placed in the situation of learning about childhood cancer and being his caregivers under the most dire of circumstances. Of course, how one chooses to be a caregiver is ultimately a personal decision! I would like to think that how we chose to perform our roles however was exemplary. I had no control over Mattie getting cancer. Nonetheless, he set the stage for providing me with something very meaningful and heart wrenching to write about. That did not mean I had to pursue it and do anything at all with this content or my feelings. I could have tried to put them somewhere and navigate through the world without focusing upon them. Like so many people would have liked me to do.....to just LIVE A NORMAL LIFE. The problem is once you lose a child to cancer, your life is NOT normal anymore. Instead, you really have to work hard at figuring out what life will look like for you again. You have to reinvest or recreate yourself. 

In any case, I am mentally tired, emotionally worn out, and physically spent from sitting by a computer for so long this summer. I can say that the chapter is done. I will be proofing it this weekend, but there is no more original content to write and NO MORE re-writes! I am beyond thrilled!!!

This evening I was outside watering in my garden and I could hear people were trying to get my attention. So I looked up! The next building over to me were two women looking down at me and into my garden. They were admiring the garden and they were clearly not from this Country. The first question they asked me was WHERE WAS I FROM?! They truly felt that I could not be from AMERICA! When I insisted I was and that I lived in this particular location for almost 18 years, they were in shock. They did not think that someone from here could put such a garden together. I wasn't sure how to respond, but I knew they meant it as a compliment. When I told them that I call the garden my "secret garden" they smiled and said they could see why! They made me feel very good tonight! I work very hard on the garden and it brings me joy, but I also think seeing this piece of happiness in an area filled with concrete has got to bring sunshine to others. So when people stop me to tell me they notice, it is a gift.

August 14, 2014

Thursday, August 14, 2014

Thursday, August 14, 2014

Tonight's picture was taken on August 12 of 2009. That day Peter and Mattie were in the hospital's child life playroom assembling battery operated cars. Peter had two going at once and literally the joke was they labelled one car the "Red Sox" and the other one the "Yankees." These two cars were basically fighting each other in the playroom and crashing into each other. Not unlike the animosity that exists between the two baseball teams! Needless to say Mattie thought the whole thing was hysterical and it brought him great joy to watch this whole scene. 


Quote of the day: To have a good friend is one of the highest delights of life; to be a good friend is one of the noblest and most difficult undertakings. ~ unknown

I am eagerly awaiting the end of the writing phase of this book chapter. You know when you have been on a project for so long, that two things seem to land up happening????!!! One you are so close to the project that what you are writing does not make sense to you any more and two, you are so tired that you just don't have the energy anymore to process what you are reading. I have reached both one and two. I thought I was done, but today, I had more to do. I worked on a section that relates to end of life care and bereavement. These vital issues seemed to be missing in the chapter to some extent. That just couldn't be!!! I could live with this, because that would be negating a whole segment of the cancer population.... the segment in which I fall into! The segment which I believe are the forgotten ones. I felt I couldn't continue perpetrating the same oversight in the literature.  

The highlight of my day and perhaps my week is that my friend Linda came to visit me. I have become friends with Linda this year. My friend Christine introduced Linda to the Mattie Blog and the Foundation and Linda reached out to me on her own. The rest is history. As I tell Linda all the time, she is a great Mattie Miracle Ambassador and I wish I could clone her! Linda wanted to see my garden in person and I must admit I am so used to visiting friends in Alexandria that it is rare when someone says they want to come and visit me. So I was honored. I showed Linda all our renovations and Mattie's things. She has seen them on the blog, but it is different to see them in person.


Linda and I both spend a great deal of time working in front of a computer. But today was different. We both walked to Washington Harbor and had lunch by the Potomac River. We experienced a new restaurant called, Fiola Mare! Fiola Mare's website says the restaurant "Evokes the seaside dining experience found along the coasts of Italy and the Mediterranean, Fiola Mare specializes in the freshest, most pristine seafood prepared with elegant simplicity through delicate and subtle additions of color, flavor and texture. Fiola Mare is a place to enjoy the highest quality seafood and wines paired with the finest hospitality and service in the city. Fabio Trabocchi’s (chef and owner) passion for cooking grew organically beside his father and grandparents growing up in Italy’s Le Marche region." 


The above photo was my view of the River from where I was sitting. Boats and cruises were leaving from the dock all afternoon long. You can see the red Pirate ship docked in the harbor and there were kids waiting dressed in costumes eagerly awaiting their cruise. 

Food was an experience today and our waiter seemed to love food as much as I do! He enjoyed sharing his knowledge and walking you through the menu and he made it come alive for us. This was my lunch entree -- Rockfish -- Melted Leeks, Kusshi Oysters, Prosecco Lemon Zabaglione! If you like lemons and zabaglione sauce, well this sauce was sinful. 

Linda ordered Ahi Tuna Carpaccio which came with  San Marzano Tomatoes, Meyer Lemon,Taggiasche Olives, and Pantelleria Capers. Though the pansies on top caught our eyes for sure!

Naturally the amazing food, service, and views were very special! But the friendship, conversation, and mutual sharing of thoughts and feelings to me was very special. A day to remember by the Potomac.

August 13, 2014

Wednesday, August 13, 2014

Wednesday, August 13, 2014

Tonight's picture was taken on August 12 of 2009. Since by that point we knew that Mattie's cancer had spread to his lungs, his care team wanted to find ways to exercise his lungs. So they gave him an incentive spirometer. Mattie wasn't going to do any therapy per se without a buddy. So I had the dueling spirometers going in the PICU room!!!! Peter and I were used to being Mattie's therapy buddy for all sorts of things..... physical therapy, occupational therapy, you name it! Whatever it took, we did it. If Mattie had to endure it, the least we could do, was help to support him.  


Quote of the day: Perhaps the butterfly is proof that you can go through a great deal of darkness, yet become something beautiful. ~ unknown 

I spent another day by the computer working on the chapter I am writing. I am hopefully coming to a close with this chapter! Which would be wonderful since I feel like I have become one with the computer. I honestly do not know where the summer has gone, since I have been attached to a computer for most of it doing research, thinking, writing, and re-writing. It has been extremely labor intensive and in addition to that writing about childhood cancer has been emotionally laden work. Especially when it entails weaving Mattie's case history into the chapter, to make the research come alive. 

This afternoon while I was writing, out of the corner of my eye, I saw something flying around outside the window. When I looked up it was a HUGE monarch butterfly. Literally it wasn't by a plant, but fluttering by the window as if it wanted to come inside or tell me a message. Understand that I live in the city! It isn't as if monarchs are typically hanging about here! I was absolutely stunned to see this butterfly. I tried to capture this visit on my cell phone but like all ethereal visits they happen too quickly! I took this visit as a sign from Mattie, a sign about this chapter, about my writing, and just his way of telling me to hang in there --- that it is almost over. 

At the same time that I had my butterfly sighting, my friend the "butterfly whisperer" sent me tonight's quote because she was thinking of me! So apparently she and Mattie were on the same wavelength today! In any case, I am so honored that two of my friends want to read my chapter. That means a lot to me since they have been listening to my chapter saga all summer! It is hard to imagine how difficult this can be, I suppose until one sees the finished product! But here is the reality of all of this..... I have another book chapter due on November 1! I will be taking a break soon for a few weeks, but in September I will right back to writing. The only problem is in addition to writing I will have to balance that with running Foundation events and other Foundation responsibilities!

August 12, 2014

Tuesday, August 12, 2014

Tuesday, August 12, 2014 -- Mattie died 257 weeks ago today.

Tonight's picture taken on August 9 of 2009. Mattie was in the Lego store of our local mall. The unique part about this was it was after hours and the store was closed. The store was open just for Mattie. He had the WHOLE store to himself. This special gift was arranged for him by his child life specialist, Linda. Linda knew how much Mattie loved Legos and during this visit Mattie got to work with two Lego master builders. They were wonderful with him. Mattie could have built anything he wanted to within the entire store! However, he decided he wanted to build a NYC taxi (something he experienced riding in while being treated at Memorial Sloan Kettering). Mattie elected not to build something from a kit. The reality was Mattie probably had constructed every Lego kit in the store that year, while battling cancer in the hospital. The master builders had no problem designing a taxi scheme! You can see the finished product in this photo! This taxi is in our living room on a display shelf that features many of Mattie's things that were important to him!


Quote of the day: Writing is hard. That's why so few people stick to it and actually finish things. And why you have a right to be immensely proud when you finish something.Andy Ihnatko


I began my day bright and early. I had a lot of administrative work to do for the Foundation before I could proceed to work on the book chapter. I have less than a week to complete this chapter and therefore, am trying diligently to get it done. The chapter is only 40 pages in length, which is really not long in reality, but writing something meaningful to an audience of physicians I think is complex. Especially when the topic has to do with psychological issues. I knew back in my graduate school days that mental health issues sometimes lie at the bottom of the totem pole (in comparison to medicine). So when Mattie entered the hospital the frustrations I experienced with psychosocial care were not necessarily novel to me. Yet as his parent my world stopped and I guess I expected everyone else's to come to a grinding halt as well! 

Fortunately with regard to this book chapter, I had the where with all, to ask two of our psycho-oncology team leads for the Foundation to work on this chapter with me. They have been instrumental to me! They have read, re-read my work, edited my work numerous times, given me feedback and have written a portion of the chapter. I couldn't have done this without them and they have made the chapter stronger and ready for prime time.... a medical audience! I feel this will be a wonderful published piece for the Foundation when it comes out in the spring! I have been working on this chapter since June! I would say over the last two months, I have combed through the research and have gained an understanding for the psychosocial literature that I did not have before. Someone could have done this for me and perhaps I could have even read someone else's literature review. But there is something to be said for doing the work yourself! I know what is out there, what isn't out there, what exists in the research, and what is missing! The only way I could truly know this is to have done the painstaking work for myself. 

In the midst of writing today, our Foundation's psychosocial team was also having email chats back and forth about our National Psychosocial Standard of Care. It is true I am not a psycho-oncologist, yet I am able to share my own thoughts and insights about care because of the journey we had with Mattie. As I always say, Mattie was my greatest teacher, and I try to always give voice to his experiences in all the work that I do.   

August 11, 2014

Monday, August 11, 2014

Monday, August 11, 2014

Tonight's picture was taken on August 10th of 2009. Mattie was readmitted to the hospital and with him, he brought Sunshine. Sunshine was the name of his stuffed animal -albino boa constrictor! He received Sunshine from his good pal, Jocelyn! Jocelyn gave Mattie Sunshine as a gift after she found out about his terminal diagnosis. She knew how much Mattie loved meeting a real albino boa constrictor during his seventh birthday party! A party which was held at Campbell's house, a good buddy of Mattie's from kindergarten. Christine, Campbell's mom, held a Reptiles Alive party for Mattie in her backyard in June of 2009, and it was in her backyard we got an up close and personal view with a real Sunshine! Upon admission that day, Jocelyn surprised Mattie with his own Sunshine snake! He loved Sunshine and to this day, Sunshine remains perched on top of Mattie's bed! Sunshine reminds me of Mattie and Jocelyn! We lost both of these two fighters to osteosarcoma. 


Quote of the day: Transformation occurs when you open your mind to experience freedom. During the process, you transform your thoughts which enable you to leave behind old habits and negative thinking. You are then able to conquer your fears and remove self doubt. This irrevocable transformation allows you to be seen in a new light. It reveals your unique characteristics and truthfulness. ~ Amaka Imani Nkosazana


This is the last day I am posting about the kitchen! Somehow this has been a major transformation for us. It has only taken us over a decade to do this to the kitchen!!! This evening we replaced the light fixture! Funny how lighting can transform the whole look of a space. Peter has wanted to get rid of the old kitchen fixture for years. But I never thought it would make that big of a difference. Tonight I see I was wrong. These pin lights are angled on certain features in our kitchen which really give the space a lovely glow. There is something to be said about transforming your space. For me transforming my physical space this year has been important for my mental health and well being. I thrive on organization and order, and I also find that brighter colors help with my mood. Since I spend a great deal of time working from home, the space that I work in has to be conducive to me. 

As I mentioned last night, I collect hot plate tiles from all the places we visit! I have LOTS of tiles! Not all of them are up on the walls! We try to display them in the order we bought the tiles! I snapped a photo so you can see just what I am talking about! Each and every one of these tiles had to come off the wall this weekend, get washed and dried, and then of course get rehung after the paint dried. This wasn't an easy process by any stretch of the imagination despite the fact that this is a small space! 

Hopefully we are done with physical home transformations for a while now. Since we have been at it for a YEAR! It has been exhausting! It was the year I tackled and cleaned out Mattie's bedroom, and it is a year I will never forget. I tackled it alone, without a team of help. One of the hard realities a grieving parent has to face on a continual basis is the simple notion that once your child is gone, in many cases one's support network dwindles. It gets smaller with each successive year that Mattie has been gone! I will always be incredibly thankful for the support we received when Mattie was battling cancer, but it has been challenging for me to learn how to manage going from such intense 24/7 support, to what I have today. This is something I rarely talk about on the blog, but it is definitely noteworthy, NOT BLOG worthy BUT book worthy. 

August 10, 2014

Sunday, August 10, 2014

Sunday, August 10, 2014

Tonight's picture was taken in August of 2009. Literally weeks before Mattie died. This was "Speedy Red," Mattie's ride-on car, which he loved and spent a lot of time with while he was home. Mattie did elect to return to the Hospital because he couldn't tolerate the pain and felt more comfortable there, and unlike the rest of us, he understood he was dying. Yet while he was home, he would ride on Speedy Red, and initially, I would ride with him. Obviously this car was built for a child, so I would have to squeeze inside of it. But I was determined to do that to make sure Mattie was safe and that he knew how to operate the car. Mattie was a gadget guy... so within minutes he had the car all figured out!  


Quote of the day: The painting has a life of its own.Jackson Pollock

Although Jackson Pollock was not referring to Peter and I with this quote, this is most definitely how we felt this weekend. Our kitchen painting task did take on a life of its own. I think we can safely say that we are thrilled that every room in our home is now painted and we do not have to think about this again for a while. Painting always seems like such a doable project until you actually are in the midst of it. It is actually much harder than it looks especially if you happen to work with me, since I like things done in a certain way. 

Behind our kitchen door, you will still see Mattie's "Block room news." These pieces of papers came from Mattie's preschool class, with his teacher Kathy. During his second year of preschool, Mattie's symbol was the Magnet. So he graduated from Mattie Moon (in Margaret's classroom the year before), to Mattie Magnet (in Kathy's classroom). On the days that Mattie was the line leader, I also happened to be the parent helper for the classroom (since this is a coop preschool, parents are very involved within the school). I saved each paper that Kathy created announcing Mattie's line leader day for that entire year. Those papers are all found behind my kitchen door. They have been there since 2006! Yes we painted today, but the news went right back up! It seems to just be a tradition. One of the many fun things Kathy instilled in her classroom was a special good-bye. Each day she had another fun saying. As you can see on Day 1 that Mattie was a line leader the good-bye saying was "Blow a Kiss Jelly Fish!" 

After two very tiring days of dis-assembling, cleaning, painting, and re-assembling.... the kitchen is now back in order!!! Our mission has been accomplished.