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 5th 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: 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!

October 8, 2015

Thursday, October 8, 2015

Thursday, October 8, 2015

Tonight's creation was created today by Tim Beck. Our FB friend! Tim made an announcement on his Facebook page asking parents if we wanted his latest creation, to then send him nine photos! Picking photos of Mattie for me is easy! I have a folder with ALL of my favorites throughout the seven years he was with us. These are the nine that I selected and Tim then cropped them and put them in a composition that made artistic sense. This was another wonderful gift we received today! As I told Tim.... he helps us keep Mattie's memory alive!

Quote of the day: When we know ourselves to be connected to all others, acting compassionately is simply the natural thing to do.  ~ Rachel Naomi Remen

Today was one of those days in which all sorts of surprises came my way! My greatest surprises are not tangible things! I prefer the intangible ones.... stories, connections, etc! The first one was I received an email from Body Dynamics. They are a physical therapy business in Falls Church, VA. Last year, Body Dynamics collected candy for our annual candy drive (as the photo illustrates), which stocks our free snack cart at MedStar Georgetown University Hospital. Body Dynamics contacted me because they want to continue the tradition this year. They also want to participate in our April item drive. 

The second surprise was one of our good friends and supporters, sent me a grant application to his company to apply for a corporate sponsorship for Walk 2016. These kind of leads are like gold to me. Corporate sponsorships don't just happen and they certainly do not happen without leads and connections. Which is why I view this is a wonderful surprise today. 

The third surprise was from another friend. This friend, like so many people, doesn't like going to the dentist. However, she wanted me to know that after reading the blog and our Facebook page about Fairlington Dental and their support of the Foundation, that she decided to take a leap of faith and call them. Any case, she loved their nurturing phone presence and what she heard about how they care for their patients. They asked her how she found out about their office, and of course the answer was.... Mattie Miracle! So I wrote to Fairlington Dental today and told them that candy has connected us and our communities together! 

While going through Facebook today, I noticed that my friend in cancer posted an article entitled, Six Things I've Learned in a Pediatric Oncology Waiting Room. When I first read the article I wasn't sure what direction the author was taking, because her words sounded so positive and uplifting to be in a pediatric oncology waiting room. However, as I kept reading, she clearly made her point.... it isn't about the wait. While waiting hours upon hours (doctors, exams, procedures, treatment, etc) you learn not to be impatient but instead to look around and really absorb just how incredible an environment this is... psychosocial staff doing the impossible to keep children and their families intact and at times entertained, and of course watching how resilient and full of life children with cancer are under the worst of life's circumstances! They are the amazing ones, along with their parents who support them.
This should make us pause because when we get upset about having to wait at any point during our day, we need to reflect on the countless number of children and families who are waiting in the hospital everyday for treatment, for scan results, or to assist their children as they die.

Six things I've learned in a pediatric oncology waiting room:

October 7, 2015

Wednesday, October 7, 2015

Wednesday, October 7, 2015

Tonight's picture was taken on October 16, 2008. Mattie was in the hospital undergoing treatment. However, this photo was taken before any of Mattie's major surgeries. I can tell because he was freely using his right hand and arm! I also can tell that this photo was taken on a Friday. I know this because Chris, the president of the chemistry club at Georgetown, would come to the pediatric units every Friday. Mattie loved when Chris visited. Chris always did an interesting experiment with the kids! That day Chris made big snowballs with water and dry ice. As you can see Mattie was fascinated holding this ice ball in his hand. These visits from volunteers were so crucial and truly helped to break up our long and tedious days in the hospital. 

Quote of the day: It seems to me that no matter what religion you subscribe to, acts of kindness are the stepping-stones to making the world a better place--because we become better people in it. Jodi Picoult

I want to introduce you to Jenny, the parakeet! Jenny is our visitor to our home!!! She will be staying with us for a week. 

Our neighbors asked us if we could take care of Jenny while they journey to their home state and have a memorial service and burial for their mom, who died in August. 

Though I have never cared for a bird in my life, and neither has Peter, we felt compelled to help this family. They have enough on their minds given the loss of their mom and traveling. 

Jenny and I spent the day together and it has been enlightening. She is relatively quiet, but GOOD GOSH, when she starts chirping, WATCH OUT! When I went downstairs this morning and took the sheet off her cage, she was quiet at first and just looked at me. But within minutes, I came running downstairs because it sounded like a car alarm was going off. That was NO ALARM, that was Jenny! I would never have imagined what a high pitched sound could come out of this little bird! Jenny and I are getting to understand each other. We both seem to respond to sunlight and fresh air. She loves both of them, and appreciates looking out the window with the screen door open, to enjoy the breezes. 

I can only imagine if Patches, our calico cat, were alive today to see Jenny! It would be quite a show. Patches chased anything that moved! I also know that Mattie would have gotten a lot of joy out of Jenny! Mattie met our friend's parakeet while he was battling cancer and he got a kick out of her sitting on his hand or shoulder! 

October 6, 2015

Tuesday, October 6, 2015

Tuesday, October 6, 2015 -- Mattie died 316 weeks ago today. 

Tonight's picture was taken in October of 2008. This was a classic Mattie and Linda photo. Linda was Mattie's child life specialist and they had a special connection and bond. Linda understood that Mattie needed to have responsibility and to feel a part of something. That day a big shipment of items came into the play room. Linda invited Mattie into the mix to help sort and check things out! Of course in the process Mattie came back to his room with a few items! 

Quote of the day: To be yourself in a world that is constantly trying to make you something else is the greatest accomplishment. Ralph Waldo Emerson

As the calendar has turned over to October, Mattie Miracle is now focused on its fifth annual Candy Drive. In order to get ready for this, I have been reaching out to hospitals and community organizations that assist children with cancer and their families to see whether they will accept candy from us this year. Last year we collected 4000 pounds of candy, and I learned how important it is to know before hand where this candy's destination will be. So far this year we know that our candy will go to:

1) MedStar Georgetown University -- to stock our Mattie Miracle Snack/Item Cart. This cart revolves around the inpatient pediatric units three times a week and is greeted with smiles and deep appreciation. In many cases, parents come to the hospital in an emergency situation and do not bring toiletries with them. Which is why our April toiletry drive is crucial, because it helps to stock the cart. However, our candy drive is just as vital, because when stressed out and caring for a child 24 by 7, the number one item families turn to to perk themselves up, is candy! 

2) Children's Inn at NIH
3) Hospital for Sick Children in DC
4) National Children's Medical Center
5) Two Ronald McDonald Houses
and other organizations! 

However, the community that enables us to collect all this candy is vast! We get candy from individuals, schools, and businesses in DC, Maryland, and Virginia! In fact the Lab School of Washington, DC just confirmed with me today that they will be collecting candy for us a third year in a row. In addition, we saw this wonderful Arlington Now publication that came out today announcing that Fairlington Dental in Arlington will be collecting candy for us this year. In fact, I have been on the phone today with Fairlington Dental and they hope to donate 300 pounds of candy and are even willing to entertain being a corporate sponsor for our Annual May Walk! Needless to say Fairlington Dental made my day!

Article on Fairlington Dental:

October 5, 2015

Monday, October 5, 2015

Monday, October 5, 2015

Tonight's picture sent to me by my Facebook friend, Tim Beck. Tim created this composition of Mattie and surprised us with this wonderful gift. Tim produces these gifts for countless families, and as I told him, it is so special to see Mattie through his lens. Tim finds photos of Mattie on the blog and has a way of capturing them in beautiful tributes. Mattie loved leaves and the color orange. So this really resonates with me. In addition, on the easels are two things. One is a photo of Mattie which was taken when he was healthy. He was visiting Roosevelt Island and while on the Island found a crinkly hedge apple. Which intrigued him and it took it home with him. On the other easel was an abstract painting Mattie created in the hospital! Tim was concerned I wouldn't like the painting turned on its side, since I display it vertically in our living room. But as I said to Tim, the beauty of his abstract is that it works anyway you display it! 

Quote of the day: Tenderness and kindness are not signs of weakness and despair, but manifestations of strength and resolution. Kahlil Gibran

Today I met a friend in Alexandria and we had lunch near the pier in Old Town. Today was the first sunny day in a week, so it was a special treat. I snapped this photo because a boat by the name of the "Matthew Hayes" was docked. We took Mattie on this boat before and he loved it. Not to mention the fact that Mattie loved that boat because it had the same name as him! 

While on the Alexandria pier, I could look across the Potomac to Maryland and see the Capital Wheel in the distance. This is the same Wheel that turned GOLD for childhood cancer awareness month! 

On the other side of the pier, I could see the Capitol building in Washington, DC! It is like a bird's eye view of Maryland, Virginia, and DC from this spot! 

Mattie would have loved this picture of boats! Mattie's greatest wish was to be the captain of a boat! He always told people that he was saving his money to buy a boat. Many people thought he meant a toy boat, but he actually meant a REAL one! 

October 4, 2015

Sunday, October 4, 2015

Sunday, October 4, 2015

Tonight's picture was taken on October 11, 2008. We had taken Mattie for a walk in our neighborhood. On the way back home, we passed this row of flag poles. As you can see, Mattie hopped up on the base and began running in between the poles. He was having a great time. Whenever Peter and I pass these set of flag poles now, we can't help but remember this snapshot in time. You may also notice that Mattie was carrying something blue in his right hand. It was a toy car! This was not an unusual occurrence for Mattie, he typically transported cars with him no matter where he went. 

Quote of the day: Everything that slows us down and forces patience, everything that sets us back into the slow circles of nature, is a help. Gardening is an instrument of grace. ~ May Sarton

It was another cold, grey, and dreary day in Washington, DC. Yet Peter and I were outside and working on our deck. We finally reassembled the deck after all the construction on the brick wall. I would love to say that the construction project is over, but it isn't! These folks are still outside our deck door, going on week four! At this point I have gotten used to them, their noise, and scaffolding. Rather ironic, since I don't like noise. 

Basically the brick wall underwent a major transformation. They had to remove all the old mortar, then replace it, and finally power wash the wall down. Mind you this wall is 30 feet tall. In order for them to do this work, all our planters which were bolted into the wall had to come down. That may not sound so bad, but today we had to drill new holes in the brick and install the planters back on the wall, along with my flower basket hooks. It was a major undertaking.  

I am proud to say that despite our plants having to be relocated somewhere else for three weeks, many of them thrived and survived (of course we went to water them while they were away from our deck). Our deck is now back together again and looking very green. What bothers me though is they were working during the last pleasant weeks of the summer, and therefore we did not get to enjoy being outside and sitting on our deck! 

October 3, 2015

Saturday, October 3, 2015

Saturday, October 3, 2015

Tonight's picture was sent to us by our Facebook friend, Tim Beck. Tim surprised us by creating this pumpkin composition for us. Tim found this photo of Mattie painting a pumpkin and transposed it on a larger pumpkin. The photo of Mattie painting a pumpkin was taken at the hospital in October of 2008. I can remember that day perfectly, as Mattie was just admitted to the hospital and as he was getting hydrated to start chemotherapy, he went to the child life playroom for this activity. Mattie LOVED pumpkins and also eating anything pumpkin related! As I told Tim, this was a lovely surprise on such a grey and dreary day!

Quote of the day: What is important is to spread confusion, not eliminate it.  Salvador DalĂ­

I love and can appreciate Dali's quote as it applies to art. Because as we know his art was intriguing and highly confusing! But what happens when things around us, in our actual world, makes NO SENSE? It can produce confusion and in some cases, confusion isn't always good. The only positive to confusion is it gets us talking about it and trying to understand it so that we can resolve the problem/issue quickly. 

I went onto Facebook this morning and a fellow clinician had posted a story about this woman who has Body Integrity Identity Disorder (BIID). I have to admit I never heard of this disorder before today, but now that I know about it, I am deeply confused.  

Currently BIID is not included in the International Statistical Classification of Diseases 11 or the Diagnostic and Statistical Manual of Mental Disorders IV (though it is defined now in the DSM-V). As such this disorder is often not known to surgeons, neurologist and psychiatrists. To exasperate this issue, BIID individuals typically avoid healthcare and often act out their desires by pretending they are disabled or perform actual self-amputation (Psychological Medicine, 2005).

Body Integrity Identity Disorder (BIID) is a rare, infrequently studied and highly secretive condition in which there is a mismatch between the mental body image and the physical body. Subjects suffering from BIID have an intense desire to become disabled, for example by desiring an amputation of a major limb or sever the spinal cord in order to become paralyzed. Or as the article (below) which I received today illustrates, the desire to be BLIND. 

Typically I am very open to understanding the plight of mental illness as well as understanding both sides of the coin. But in this case, I am absolutely confused because after seeing Mattie suffer with limb salvaging surgeries which he did not ELECT to have, I can't imagine that someone with healthy limbs would want to have a leg removed. Or with healthy and functioning eyes, to want to be blind. 

In the case presented below, this woman felt that she was meant to be born blind, but unfortunately for her was born with perfect vision. She became obsessed with the desire to become blind and sought the help of a psychologist, who after working with her to two weeks agreed to assist her achieve her desire. The psychologist poured bleach into this woman's eyes. 

All I know is I am happy I am not presiding over the ethical hearing of this mental health provider. Because clearly his license will be in jeopardy and his competence to practice will be coming into question. As you read the second article I posted below, there have been several studies which indicate that psychotherapy is not helpful for such patients with BIID, and in many cases, these patients resort to disfiguring their own bodies if assistance isn't offered to them. 

I wonder as you read this story and watch the video embedded in that link, if you will be just as confused as I am? Her friend commends her decision to put bleach in her eyes and go blind. He says that she "is an inspiration to the blind community." All I can say is wow! I would love to check in with those who are blind (due to illness or genetics) and determine their reaction. 

I Poured Drain Cleaner in my eyes to blind myself:

Amputees by choice:

October 2, 2015

Friday, October 2, 2015

Friday, October 2, 2015

Tonight's picture was taken on October 10, 2008. Since Mattie was on a transporting gurney/bed, I know that meant he was headed to a procedure and we were waiting for Debbi (his sedation nurse angel) to show up to take us. In the mean time, Mattie was with me and Linda (his child life specialist). I know Linda was with us for two reasons, first was Mattie had a new activity book that he was working on and the second was Linda came with us on EVERY procedure. After the first couple of scans that we did without her, which did not go well, Linda then accompanied us for every subsequent one. Which not only helped Mattie, but I found it of great support to me. It took two of us at times to help Mattie cope and on top of that we had radiology techs that usually needed to be put in their place! When I look at the date this photo was taken, it is hard to believe that a year later on this same date we held Mattie's memorial service.   

Quote of the day: Kindness is a language which the deaf can hear and the blind can see. ~ Mark Twain

I spent the day, or six hours of it, at my car dealership. I happen to be attached to my car, since I got this car a month before I gave birth to Mattie. I selected this particular car because of its safety features back in 2002. But as one can imagine a 13 year old car, doesn't hold up as well as a typical 13 year old person. 

My service representative that I always have worked with over the years, left the company. So when I initially called to book a service visit they assigned me to work with someone who I would deem as obnoxious. He was so awful that we both landed up becoming hostile with each other on phone. As a result he wouldn't book a time for me to get the car serviced. He infuriated me to no end, that I called the dealership back and spoke to his boss and reported his rude and insulting behavior. I also mentioned that he needed to train his service representatives to deal more effectively with woman. I have to say after what I experienced today (in which my service person even printed out photos to explain what was wrong with the car), my message was translated down to his employees. 

When I got to the service counter today, all the representatives were wearing pink. In honor of breast cancer awareness month. I made a mental note of that. What you as a reader may not be aware of is that the childhood cancer community has real issues with pink. For some advocates it sends them right over the edge, because breast cancer gets a lot of attention and public awareness, and childhood cancer has to really work at it to get anything to turn GOLD. I have mixed feelings about this debate, because I know several people with a breast cancer diagnosis and I believe all people with cancer need access to cutting edge research and support. Needless to say, I got the contact information for the general manager, because you know I will ask him to consider having his employees wear GOLD in September! 

My car had some major issues today, which is why I was there for six hours. But over the course of the day, I had many interactions with Mike, my service representative. I learned that my car has all the same parts inside of it as an Audi, and in all reality though the label is different, I have for all intensive purposes a luxury car. He made me laugh! But we quickly bonded when I started talking to him about his pink shirt! The pink shirt lead us to a discussion on illness, and he revealed to me that his son was just born with a rare genetic disease. He went into how this has/will impact his son's life and how he and his wife have been almost in crisis mode since his son was born. I listened and chatted with him literally for 30 minutes. I then told him that I understood his fears, his runs to the hospital, and the paranoia he feels regarding every symptom his son has because my son had cancer and died. We chatted about this too and then he asked me..... are you the candy lady? The lady who collects post-Halloween candy and gives it to hospitals? Yep that is me, the candy lady! Apparently this fact about me was known throughout the service representatives and I credit my former service representative for spreading the message. I loved Sharon (my former service representative). Her dad was struggling with cancer, and we talked about that often too. 

So what I continually know all too well is if you scratch the surface with people, you find out all sorts of information. Sure Mike may have been helping me with my car, but this was clearly a dad who needed to talk and to be heard. Seeing what Peter goes through, I know it is important that men have the opportunity to be heard and to express their fears, sadness, and worries when it comes to dealing with a sick child.