Mattie Miracle 10th Anniversary Walk was an $119,000 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

January 20, 2018

Saturday, January 20, 2018

Saturday, January 20, 2018

Tonight's picture was taken during Mattie's first birthday in April of 2003. I actually received this photo in the mail about a year ago from Mattie's babysitter, Dana. Dana was an undergraduate student of mine, who would help me every Friday with Mattie when he was a toddler. Dana took this photo of Mattie and me at his first birthday party! Mattie was not a happy camper that day. He was overwhelmed by all the people and noise. As you can see Mattie wasn't thrilled to be held for a photo either. He was squirming and very irritable all day. 





Quote of the day: It takes a great man to be a good listener. ~ Calvin Coolidge




Pictured: My grandmother at her 80th surprise birthday party. Standing next to her was Marian (my mom's friend) and Naomi (my lifetime friend's mom)

Today is the 24th anniversary of my maternal grandmother's death. Seems like a long time ago doesn't it? Yet I still remember that day my mom called me on the phone to tell me my grandmother died and of course I remember my grandmother.

My grandmother lost her husband at an early age to colon cancer. She also had three children, but lost her second child to Sudden Infant Death Syndrome. Of course when I knew my grandmother (who always lived with my parents after her husband died) I was a child and then a teenager. Unfortunately George Bernard Shaw was correct.... youth is wasted on the young. 

I say unfortunately because I never spoke to my grandmother about her husband's death or the death of her child. I was cognizant of both losses, but being so young I had absolutely NO understanding for what such losses actually meant or felt like. You don't dwell on such unpleasantness when you are a child. But now, I sit back and wonder...... how did my grandmother manage all of these losses?

I don't have an answer per se, but if I had to surmise, she managed because of my mom. My grandmother always wanted a daughter, and when she got one after the loss of her second child, I think it helped. Certainly my mom did not replace her son, but my grandmother was able to direct her focus onto my mom. In turn, after my grandmother's husband died, my mom stepped in to help her. As I have learned, it is the support of someone close to you, who really takes care of your every need that truly helps one find his/her way back into the world again. Altered, but living.

The day my grandmother died, I was living in Boston attending a master's program in biochemistry. I literally had a dream in which my grandmother was talking to me and handed me red roses. As I went to grab the roses from her, all of the petals fell from the roses. It was at that point, that my phone rang and woke me up. On the other end of the phone was my mom calling to tell me about my grandmother. But in actuality she did not need to tell me, because based on the dream I was awoken from I knew it was a sign. My grandmother was saying good-bye. Twenty four years later and I can still recall that moment in time as if it was just happening. 

January 19, 2018

Friday, January 19, 2018

Friday, January 19, 2018

Tonight's picture was taken in February of 2003. Mattie was 10 months old and in his "tot wheels," he could move around easily. He was a speed racer in fact and for the longest time, we had skid marks all over our floors from his zooming around. Mattie desperately wanted to walk. In fact, he skipped crawling altogether! Mattie loved the freedom that walking in his tot wheels gave him. As you can see, he was a curious fellow. He would zoom around, then stop on occasion and check out the furniture and open drawers!


Quote of the day: Housework can kill you if done right. ~ Erma Bombeck


I came across tonight's quote and it made me laugh! I would say chores in general can kill you, forget about only the housework. Over the last couple of days I have heard more cancer stories than I can absorb. Even today, as I started the Foundation's Walk plans, I had the opportunity to interact with some of our event sponsors. I had sponsors write to me today about how cancer has touched their lives personally and why what Mattie Miracle is doing is so important. 

Between Foundation work and walking Sunny, my days can fly by. Yet since the Fall, I have been making a conscious effort to stop and attend my zumba class. When my alarm went off this morning, it was pitch black outside and I was tired. I really did not want to get up to go to class, but I did! My instructor is absolutely lovely and she never comes to a class without a smile. Her demeanor is charming, warm, and energizing. I told her today that she exudes positivity. I really think that makes a difference and it is not surprising that she has quite a devoted following. As some of her students have been with her for 9 years.  

It seems to me that when we sense someone is kind and treats you with kindness, it is amazing what types of results this produces. Think about it for yourself, when you receive kindness (at work, in a hospital, with a school teacher, etc), isn't even the hardest task more manageable? I know when Mattie was undergoing cancer treatment, there were some people he was more eager to listen to, to work with, because he knew they understood him, were patient, and simply put..... were kind. Kindness made a blood draw more bearable, a scan more doable, and managing pain more tolerable! There is NO rule book on how to be kind and it is hard to quantify and assess. Yet we all know what it feels like when we receive it. 

January 18, 2018

Thursday, January 18, 2018

Thursday, January 18, 2018

Tonight's picture was taken in January of 2003. Mattie was 9 months old and I would have to say this is one of my favorite photos of Mattie. Peter and I took Mattie outside into our enclosed commons area. Mattie loved his "tot wheels," which was a baby walker. When Mattie got on flat surfaces, you wouldn't believe how he could move! Practically a speed racer. When Mattie came to a stop, Peter snapped this photo. What was charming about this, was Mattie wasn't looking at the camera, but instead at me. Actually Peter used to joke with Mattie all the time that he was a "mama lover," because Mattie always kept track of my every move. 


Quote of the day: Cancer is a word, not a sentence. ~ John Diamon 


Cancer maybe only a word, but I would say it is a word that requires no other words. No sentences, no paragraphs, or stories needed. When someone says they are worried that they could have cancer, I can fill in the rest of the sentence. Rather unfortunate that I have this insight, but I very much get it. It is a life altering fear like no other. Yet because of what I survived with Mattie, I have noticed two things. First, people feel more comfortable sharing with me their own health story, but second, I am not only hearing the story, I can feel the story and deeply empathize. So Mattie maybe not be with me, but his life lessons continue on when I listen and help other people facing cancer. 

I went to push the Mattie Miracle snack cart at MedStar Georgetown University Hospital. Some days, I can do this in under and hour and other days like today I am there for hours. It just depends on who I meet along the way, what the needs are, and who wants to talk. Experiencing the cart in real time, is very important to me. Because I want to see how the cart is received by families and I want to observe what is working and what needs re-evaluation. 

In the process of pushing the cart, I learned that one of the moms I had come to know (mainly because I visited with her monthly and she and her son loved hanging art work on the outside of their door) lost her son to cancer. She was an absolute trooper, with such a sweet face and disposition. The kind of person that was such a sweet soul, you just did not want anything bad to happen to her. Hearing that her son died, has made me terribly sad, because I know the long road ahead of her. 

I had the opportunity to see Mattie's favorite HEM/ONC nurse, Tricia, while pushing the cart. Seeing Tricia is always one of my highlights as Tricia saw Peter, Mattie, and me under the worst of circumstances. Yet Tricia said to me today that no matter what was happening during treatment, I never lost it and I always kept it together. You never know how others perceive you when you are living a crisis day to day for 14 months, but I appreciated Tricia's insights. I think my calm but forceful demeanor was challenging to several on the social work team, because what they wanted to see was a Vicki that was crying and hysterical. However, this is NOT Vicki in a crisis, and they had to learn this. I can cry and be hysterical in times when I was by myself or felt the freedom to do this without worrying about Mattie. 

It was the kind of day when I heard one health crisis after the other, after the other. So by tonight, I know I need to pause and regroup. 

January 17, 2018

Wednesday, January 17, 2018

Wednesday, January 17, 2018

Tonight's picture was taken in January of 2003. Mattie was 9 months old and FULLY engaged. Though my joke always was that Mattie was BORN ON!!! I just loved his smile and excitement as he was playing with the toys in front of him! As a baby Mattie looked much more like Peter than me, but that all changed as Mattie became a toddler!


Quote of the day: Researchers found that when pet owners looked into their dogs’ eyes, a rise in oxytocin, also known as the cuddle hormone, ensued. And the feeling is mutual, it seems. The study revealed an increase of 130 percent in dogs and a 300 percent increase of the hormone in people. ~ Melissa Matthews (Newsweek article)


The other day I was listening to the radio and the commentators were talking about a study done at Northeastern University that indicated people loved their dogs more than their fellow humans. Just hearing this made me laugh! I know for certain that Sunny is my tried and true friend. He is my companion 7 days a week, at all hours. I do not need to arrange a visit, we do not need to check calendars, we just are!

Nonetheless, you know I had to dig up this story! So I found an article about this in Newsweek and then also included a link below to the actual study. The study itself was fascinating as it surveyed over 200 undergraduate students and had them read factitious stories in newspapers about physical abuse in four scenarios, abuse to: 1) a human infant, 2) a 30 year old human, 3) a puppy, and 4) a 6 year old dog. 

I do not know if I am surprised, but I would say I am shocked. It turns out that we humans tend to have MORE empathy for puppies (first) and human infants! So apparently AGE matters. We are more protective of things that are younger than us. Interesting, no? I do not know where I stand on this because I wouldn't want to see anything living abused with a baseball bat, as presented in this study. 

The Newsweek article went on to discuss how dogs actually manipulate us with their sweet faces (although, it’s not necessarily intentional). Dogs use more facial expressions when humans are around as a way to communicate, and apparently these expressions are reserved for the ones who care for them. Peter and I comment to each other all the time that Sunny has a diverse range of facial expressions. At times it is like he is raising his eye brows at us, other times he looks at us with his big sad cow eyes, and other times he appears to be smiling. He is filled with all sorts of expressions and is also VERY good at getting us to do exactly what he needs. 




DOGS ARE BETTER THAN PEOPLE AND THAT'S WHY WE LOVE THEM MORE THAN OTHER HUMANS

http://www.newsweek.com/dogs-are-better-people-and-thats-why-we-love-them-more-other-humans-699775


Are People More Disturbed by Dog or Human Suffering?

http://booksandjournals.brillonline.com/content/journals/10.1163/15685306-12341440

January 16, 2018

Tuesday, January 16, 2018

Tuesday, January 16, 2018 -- Mattie died 435 weeks ago today.

Tonight's picture was taken in January of 2003. Mattie was nine months old and at that point LOVING his exercise saucer. If Mattie wasn't in my arms or in the baby back pack, then he was in this saucer. Mattie loved the independence the saucer gave him and literally he would jump up and down so hard in this thing, I thought he was going to take off like a plane. A friend of mine sent this saucer to us as a gift. Probably when Mattie was 3 months old. When Mattie first tried the saucer, he was scared to death of it. But over time, he conquered those fears and loved playing it!


Quote of the day: Genie showed that lexicon seemed to have no age limit. But grammar, forming words into sentences, proved beyond her, bolstering the view that beyond a certain age, it is simply too late. The window seems to close. ~ Susan Curtiss, a UCLA linguistics professor


This horrific story about the Turpin family, living in Southern California, broke all over the news yesterday. This is a family with 13 children, ranging in ages from 2 to 29 years. However, the children are so malnourished that rescue workers thought the 17-year-old girl who called 911 was only 10, given her small size and emaciated appearance. We are in the year 2018, and I can't believe such stories are still possible in the United States. As soon as I read about these children, I was instantaneously  transported right back to graduate school. 

When I was getting my degree in counseling, I will never forget the first time I saw the documentary on Genie, the wild child. Genie was 13 years old in the 1970's, and was abused and tortured by her father since a baby. When Genie was found, she couldn't walk, talk, toilet herself, and the list went on. Genie's story was heartbreaking, and reading the story of the Turpin children made me reflect on the case of Genie.  

I included an article about Genie and the incredible 60 minute video entitled, Genie: Secrets of the Wild Child. I saw this video in graduate school, and I found it SO PROFOUND that I bought it, showed it to Peter, and when I became a professor, I incorporated it into my lectures. I am not sure what was worse.... the fact that Genie was tortured as a child, or that she was discovered by researchers at UCLA, enrolled into funded linguistic trials and got all sorts of attention, but when progress wasn't being made (as Genie was never able to learn grammar and speak in sentences) and funding was being pulled, the interest in Genie vanished. In a way Genie was abandoned and continues to live in the California State system. I am not doing the story its full justice, which is why I included the links below. I think the scientific community learned from Genie's case that guidelines and safeguards for human subjects HAD TO BE put in place for ALL future studies. A study like the one Genie participated in would NEVER be allowed to take place today. 

This is what Jay Shurley (a psychiatrist) had to say about Genie: "She was this isolated person, incarcerated for all those years, and she emerged and lived in a more reasonable world for a while, and responded to this world, and then the door was shut and she withdrew again and her soul was sick.” 

How does this happen? In Genie's case, it all started with an unstable father, Clark Wiley. He grew up in the foster care system himself. He was a controlling man who hated noise, and he did not want children. Yet children came. The first, a baby girl, who died after being left in a cold garage. A second child died from birth complications. A third, a boy named John, survived, followed five years later by Genie.

When a drunk driver killed Wiley’s mother in 1958, he unraveled into anger and paranoia. He brutalized John and locked his 20-month-old daughter alone in a small bedroom, isolated and barely able to move. When not harnessed to a potty seat, she was constrained in a type of straitjacket and wire mesh-covered crib. Wiley imposed silence with his fists and a piece of wood. That is how Genie passed the 1960's.

Unfortunately none of this turns out well. Genie lives in the adult care institution in California, and John died. John had a daughter, Pamela, who grew up with a drug problem and was charged with endangering her own two daughters. Pamela also died. My point to this is such profound dysfunction and abuse, doesn't end with one generation. Instead, with the case of Genie, we are talking about four generations impacted by this terror. 

The story of Genie is absolutely haunting and to me and the story of her life is worth telling. There should be a moral message from Genie. We shouldn't want to sweep up this gruesome picture up and make it go away. Of course as a mom who lost a child to cancer, I can not relate to these deranged parents on any level. I am sorry if they had a tough childhood, underwent atrocities of their own.... HOWEVER........this is NOT an excuse or gives them a free pass to abuse their own children. May we all learn from Genie.


Children found shackled and malnourished in Southern California home; parents arrested:

http://www.latimes.com/local/lanow/la-me-ln-perris-children-shackled-20180115-story.html


Starved, tortured, forgotten: Genie, the feral child who left a mark on researchers:

https://www.theguardian.com/society/2016/jul/14/genie-feral-child-los-angeles-researchers


Genie: Secrets of the Wild Child (60 minute long video):

https://topdocumentaryfilms.com/genie-secret-wild-child/


January 15, 2018

Monday, January 15, 2018

Monday, January 15, 2018

Tonight's picture was taken in January of 2003. Mattie was nine months old and traveling in his favorite fashion..... on Peter's back. Mattie disliked his stroller and felt it confining, but when in a back pack, up high, he loved it. This photo was taken on Roosevelt Island. A place we visited practically every weekend.


Quote of the day: There is something about words. In expert hands, manipulated deftly, they take you prisoner. Wind themselves around your limbs like spider silk, and when you are so enthralled you cannot move, they pierce your skin, enter your blood, numb your thoughts. Inside you they work their magic. Diane Setterfield


Words most definitely can captivate and inspire, but they can also entrap and deflate our spirit and presence. Funny how a bunch of letters put together can have such a profound impact on our daily lives. On Saturday, Peter took Indie to the vet for her yearly shots. Anyone who has ever had to grab a cat and put it in a cage understands the stress of that activity alone. I can do practically anything with Sunny, but NOT with Indie! The one thing I don't like is catching Indie and putting her in a cage. So when I can schedule her appointments on a weekend, I do. I do because Indie is "Peter's cat!" She truly loves and responds to him. 

So back to Saturday. I did not go to the vet with Peter. However, when Peter got home after the appointment, I could sense he wasn't happy. Why? Well I asked!!! The vet introduced herself to him (as she wasn't our usual vet in the practice) and told Peter that she has three children and was THRILLED to get out of the house, away from them, to have a break!!! This is all Peter had to hear! I can't tell you how many times since Mattie died, we have heard parents complaining to us about their children and specifically complaining about the time commitment, the endless chores, and the schedule management. 

Depending upon our moods, when we hear this we can do one of two things.... disengage with the person (which is what Peter did with this vet), or give the person a reality check! It is quite humorous to say to someone who lost their only child that you need time away from your children and that they are driving you crazy! Naturally we would like to lash out and say..... do you know how lucky you are to have healthy children and TO HAVE THIS PROBLEM!?????

Clearly this vet did not know who she was talking to, and most likely if she was talking to a fellow parent, the comment would have been acknowledged, appreciated and perhaps even commiserated! Which leads me to what tonight's quote points out.... WORDS! I am not saying we have to walk on eggshells with each other in life, but I think we need to be cognizant that others may have losses in their lives, and given such experiences some words can come off as clueless, mean spirited, and naive. However, with that said, I have HIGHER expectations for those in the helping profession. I expect healthcare professionals (of any kind) and mental health professionals (of any kind) to have a broader lens into the medical travesties of life and therefore act accordingly, with deeper insight. Yet it is me who continues to be disappointed. Sometimes I have it in me to educate some of these professionals and other times, as Peter did, I just let it go. 

I would have to say though, shortly after Mattie died, when we heard such comments, it would turn around in our minds and hearts for days. Now we register them, we absorb them, and they still hurt, but we have built up a sort of inner armor so that we are no longer derailed for days.  

January 14, 2018

Sunday, January 14, 2018

Sunday, January 14, 2018

Tonight's picture was taken in February of 2004. Mattie was almost two years old. That cold weekend, we took Mattie to the Natural History Museum in DC. Mattie was transfixed on the iconic African elephant statue in the rotunda of the Museum. 






Quote of the day: Having rebelled against a centralized authority, the first inclination was to place most of the power in the states and to limit national authority by establishing a weak central legislature. However, the realities of building a nation that faced internal disputes and international affairs led many to reconsider the role of the national government and the need for strong executive leadership. Out of this debate emerged the American presidency. ~ From the Smithsonian's American Presidency Exhibit


Peter and I wanted a change of pace and routine today. It is very needed in this cold weather, where it is easier to stay home all day then venture out. We decided to go to the American History Museum. I must admit that we live close to these museums but rarely go. Why? Well I appreciate the content within the Smithsonian museum system, but frankly I find the museums very crowded, massive, and at times overwhelming in terms of how the content is presented. 

We literally went through four exhibits today. One in greater detail (The American Presidency) and the others not in depth (America on the Move; Food: Transforming the American Table; and The First Ladies). A highlight of the visit is below.  

After the museum, we tried a new restaurant (at least for us) in DC. I tend not to experiment much with restaurants because I don't like being disappointed by what I am eating. Today was no different, the restaurant got a lot of hype and the menu looked good, but I am not going back! Any case, we broke our routine today and even walked home several blocks in single degree temperatures.  



The American Presidency exhibition explores the personal, public, ceremonial and executive actions of the 45 men who have had a huge impact on the course of history in the past 200 years. More than 900 objects, including national treasures from the Smithsonian’s vast presidential collections, bring to life the role of the presidency in American culture.


Visual timeline of all 45 presidents.
This display case was devoted to inaugurals! It included pins, ribbons, and other visuals to commemorate the occasions. 
This exhibit is presented like this.... with displays chuck full of information. You really need to pause and read each placard, otherwise you have no idea what you are seeing. But it is a challenging task because of the number of people who attended this exhibit and also the sheer volume of items in this exhibit. It is easy to get overwhelmed. In addition, because the Smithsonian is trying to preserve documents and items, the lighting is low. Nonetheless it is a wonderful way, if you have time, to learn about the history of our democracy and why and how a three branch governmental system was established. 

The placard said:
"I want to talk for a few minutes with the people of the United States about banking." So began, on March 12, 1933, the first of about thirty informal "fireside chats" that Roosevelt delivered over the radio. His ability to communicate directly and personally through the new medium, addressing each listener as a respected friend, gave FDR a powerful tool to shape public opinion. 

This CBS microphone was used by Roosevelt. 
These were riding chaps worn by Theodore Roosevelt.
Dinner at the White House with the Gorbachevs!

It consisted of:

Columbia River Salmon & Lobster Medallions

Loin of Veal

Medley of Garden Greens 

and check this out....................

Tea sorbet in honey ice cream (which to me sounds absolutely horrible!) 
The placard said:

This brooch given by the people of Paris to Edith Wilson, who accompanied her husband to the WWI peace treaty negotiations in 1919. Rene Lalique designed the pin with glass doves perching on diamond studded gold laurel sprays. 
The placard said:

President John Tyler's administration (1841-1845) established the tradition of playing "Hail to the Chief" as a ceremonial introduction announcing the arrival of the president. The first lady, Julia Tyler, reportedly instructed the US Marine Band to play the song whenever her husband made an official appearance.











The First Ladies exhibit (which maybe one of the most popular exhibits in the Museum) explores the unofficial but important position of first lady and the ways that different women have shaped the role to make their own contributions to the presidential administrations and the nation. 

The exhibit featured more than two dozen gowns from the Smithsonian’s almost 100-year old First Ladies Collection, including those worn by Frances Cleveland, Lou Hoover, Jacqueline Kennedy, Laura Bush, and Michelle Obama. 
Also featured were the china patterns selected by many of the first ladies. I think the patterns in a way captured their personalities. Apparently not every first lady picked a new china set, but I would say over the course of the last 40 years, each first lady had her own pattern.



In the exhibit entitled, Food: Transforming the American Table, you are immediately greeted by a tribute to Julia Child. 

Julia Child’s home kitchen, with its hundreds of tools, appliances, and furnishings, serves as the opening story of the Museum’s first major exhibition on food history. From the impact of innovations and new technologies, to the influence of social and cultural shifts, the exhibition considers how these factors helped transform food and its production, preparation, and consumption in post-WWII America, as well as what we know about what’s good for us.

Believe it or not, Julia Child was over 6 feet tall. Because of her height, her kitchen counters were about three inches higher than your average counter. In addition, she changed how women displayed items in their kitchen. She changed the stark look, in which everything was stored and out of sight, to a kitchen were pots, utensils, and items were part of the kitchen visual and easily accessible. 

Legendary cook and teacher Julia Child (1912–2004) had a tremendous impact on food and culinary history in America. Through her books and television series, which spanned forty years, she encouraged people to care about food and cooking. She inspired many Americans to conquer their fears of the unfamiliar and to expand their ideas about ingredients and flavors, tools and techniques, and meals in general. This kitchen contains tools and equipment from the late 1940's, when Julia Child began her life in food, through to 2001, when she donated this kitchen to the Smithsonian Institution.

Each pot belonged on a certain hook. To assure that each pot was returned to its rightful place, a tracing of the pot can be found underneath it on this cork board. 

The final exhibit! 

The Museum's transportation hall encompasses nearly 26,000 square feet, includes 340 objects, and features 19 historic settings in chronological order. From the coming of the railroad to a California town in 1876 to the role of the streetcar and the automobile in creating suburbs to the global economy of Los Angeles in 1999, America on the Move takes visitors on a fascinating journey. Multimedia technology and environments allows visitors to see historic artifacts as they once were, a vital part of the nation’s transportation system and of the business, social, and cultural history of the country.

Can you see Peter!!??? He was trying to blend in with the statues, all waiting for a Washington, DC trolley car!