Thursday, March 8, 2018

Thursday, March 8, 2018

Tonight's picture was taken in March of 2009. This to me was classic Mattie. I did not take this photo, Mattie's nurse Katie did. Peter, Katie and Mattie were in the child life playroom together and Mattie was trying yoga using a Nintendo Wii game board. Mattie stood on this step like board and it read Mattie's movements and Mattie got feedback on what he was doing through a TV screen. Mattie thought the whole thing was fascinating. Everyone around Mattie got a chance on the board, but guess what? The joke was that Mattie was the best on the Wii despite all his surgeries. He had better balance apparently! I just love this photo because it captured Mattie's spirit to life and have fun. 

Quote of the day: It doesn’t take an instant more, or cost a penny more, to be empathetic than it does to be indifferent. ~ Brian Lee


In January, I went with my friend (who has ovarian cancer) to see my gynoncologist. Before I left her office, I mentioned some of the unusual physical issues I was facing. I was looking for her to normalize what I reported, but instead she decided not to take the wait and see approach. So today I went for another transvaginal sonogram. I will never forget the first one I took in 2012 at Washington Hospital Center. It was a reportable nightmare, where I had a very aggressive ultrasound tech, who not only physically hurt me but caused my anxiety about the procedure to increase ten fold. However, since that awful experience, I have had at least four other transvaginal sonograms. If performed by a competent and sensitive tech or radiologist, the procedure is very doable and quick. Notice what I am reporting about is NOT the medicine. It is the quality of care and how care was administered. 

When patients are coming for scans and procedures, they aren't coming to a medical facility in a happy place. Usually patients are scared, edgy, and uncertain about why they feel ill. How a medical provider manages patient stress, fears, and concerns, can really make it or break it for the patient. I have experienced the difference between working with an insensitive and clueless medical provider, versus one who truly is patient centered and takes into account how a scan or procedure may impact us. Naturally regardless of the kind of professional you work with, when you are scared, you are scared. A medical tech's personality and kindness won't change that, but it can influence how you feel about the procedure and your outlook about receiving medical care. 

The reason why my doctor takes my symptoms very seriously is because on February 1, 2012, I got a suspicious cat scan result. A CT scan which was ordered to rule out a bladder issue. The test revealed that my bladder was fine, but that I had numerous masses in my pelvis. A radiologist deemed the masses indicative of adenoma malignum. A very aggressive cancer. Again, my world stopped and I lived with this nightmare for two years. The masses are located in a position that they couldn't be biopsied. I was literally scanned every month for two years. Each month, was like living hell not knowing whether the mass grew or not or what the next steps would be. Over time, I learned that I have several masses and they are not cancerous. This is the short version of this nightmare. 

However, I was calm for today's test. Because I really did not believe something  was wrong with me. But I naturally learned that we can't always tell what is going on inside our bodies, as Mattie's cancer reminds me of that sobering reality. So naturally I had pause today because I know that a scan result can turn your life upside down within minutes. Fortunately I worked with a lovely tech and a competent radiologist. The beauty of Washington Radiology Associates, is that your test is conducted by a radiologist who gives you real time results as she is seeing them. I am very grateful for good results today and I have to say, after the test was over, I felt like I had another lease on life. So regardless of chores I had to do, I was happy that I could do them and not worry about more testing and next steps. When you get a clean bill of health, it is the best gift life can give you. 

Wednesday, March 7, 2018

Wednesday, March 7, 2018

Tonight's picture was taken in March of 2009. By this point, Mattie had undergone 8 months of chemotherapy, along with two major surgeries. I remember taking several photos like this to highlight the enormous IV pole connected to Mattie. You may notice this RED colored IV going into Mattie. Though red may have been Mattie's favorite color, this was doxorubicin, one of 5 chemo drugs Mattie endured on a regular basis. Since Mattie was dressed in clothes in this picture, I can deduce this was an admission's day to the hospital. Why? Because it was only then that Mattie wore regular clothes. When Mattie was living in the hospital, he only wanted to wear pajamas. Nonetheless, despite getting chemo, Mattie looks very calm and peaceful. But photos can be deceiving. 


Quote of the day: Friendship is the only cement that will ever hold the world together. ~ Woodrow T. Wilson

Last night we held our annual volunteer appreciation dinner at the Morrison House in Alexandria, VA. The hotel was built in the style of a Federalist mansion that blends seamlessly into the surrounding historic Old Town neighborhood. It is a charming setting which gets fantastic reviews. However, the property recently changed hands to the Marriott. 


We loved the two assigned wait staff to our event, Romil and Griselda. They both worked very hard to set up the space as we requested and they couldn't do enough to make us happy. They truly made the night special, which was good because right after the event, I filed a formal complaint about the food. The food was served luke warm, and if food could look tired, WELL THEN IT LOOKED TIRED. They also had a dessert mishap in the kitchen, and two of us had to have a completely different dessert. I expect a lot better form a boutique hotel run by the Marriott. 


We had 17 guests, plus Peter and me at the dinner. Romil snapped a few photos of all of us. This core group of volunteers have been with us for every Foundation walk, and several helped plan the Mattie March in 2009, when Mattie was alive. So imagine service to us for ten years! An incredible group of people! 

Pictured Seated (left to right): Jane Pisano, Mary Doane, Carolyn McFadden, and Ali Goldwater

Pictured Standing (left to right): Christine Cooper, Tina Lytle, Jennifer Connors, Marisa Tordella, Peggy Elkind, Denise Tordella, Patricia Tilch, Bernie Tilch, Debbie Keefe, Dawnee Giammittorio, Ann Henshaw, Dave Tordella, Katie Magnuson, and Peter, and me.  

 At past dinners, we always had handouts! This time we got rid of paper at the table and showed a power point presentation. I think the visual made communicating so much easier. We also showed the group our Walk video from last year. I really think that energized us! Here is one of the slides we shared with our core team last night. It truly shows the great progression we have made in fundraising over the years. None of which could be done with this core team!

As of this date, we have 16 corporate sponsors who in total have donated $21,500 to our $85,000 walk goal! I would say that we are officially in Walk planning mode now. 

Tuesday, March 6, 2018

Tuesday, March 6, 2018 -- Mattie died 442 weeks ago today.

Tonight's picture was taken in March 9, 2003. Mattie was almost a year old. This was the day before my doctoral dissertation defense. I can still recall how stressed out I was, but one thing was the motivator...... I wanted to graduate before Mattie got any older. I did not want to live with the stress of pursuing a higher degree and being a mom. 



Quote of the day: Looking back at my life's voyage, I can only say that it has been a golden trip. ~ Ginger Rogers

I had the opportunity today to go back to the George Washington University and sit on a doctoral student's dissertation defense. Why is this significant? Because 15 years ago today, I defended my dissertation. Pictured here was my doctoral committee................

Front Row: Dr. Pat Schwallie-Giddis, me, and Dr. Carol Hoare
Back Row: Dr. Rich Lanthier, Dr. Don Linkowski, Dr. Rolf Peterson, and Dr. Rob Gallagher

After defending my dissertation, which is like a major oral exam in which you sit around a table and everyone on the committee as they raise questions about your study. Of course you need to be prepared to effectively provide answers. After the defense, you go out to lunch with your committee. Which maybe just as nerve racking as the exam! 

This was Peter and me with Dr. Rob Gallagher. Rob was my outside the university examiner. However, Rob was key to my study, as it took me three years to find him. He worked for a large governmental agency that offered eldercare support services to its employees. Rob provided exactly what I needed, which was access to employed individuals who were caregivers of an older adult family member. It wasn't easy to find any agency who was willing to work with me and give me access to their employees. But I think Rob saw the benefits of working with me. He viewed me as a person who could give him important data about the effectiveness of his agency's work life services. Any case, we were a good match together and I credit Rob for enabling me to truly finish my dissertation. Because without data, I was in limbo!!!

After my defense was over, Rob told the committee that he wanted to offer me a Grade 13/14 job in the government to run his agency's work life program. A major job offer, which I was flattered to receive, because clearly my month of data collecting enabled Rob to see my ability to fit in his agency! 

Fast forward to today, sitting at a dissertation defense, I was left looking back at my academic journey! Would I have guessed back then how my life would have turned out? That I would have a child die from cancer and in the process learn first hand the psychological issues associated with this disease and the impact on the family!? Of course the answer would be NO! You have big plans and goals once you graduate, but as I have learned plans change! So I couldn't help but view this student from this lens today. I also found it was very clear that she was naive about the topic of aging (her topic). As TRULY not grasping its complexity. But that is the beauty of being in her 20's. Yet I do think despite being young when I wrote my dissertation, I had a solid understanding for the aging population and the system of caregivers who provide support. I credit this to watching my maternal grandmother suffer from the effects of a massive stroke, and experiencing my mom's significant level of caregiving for her own mom. 

Do I have regrets that I did not take that government job? Absolutely NOT! If I had, I would have been working around the clock and wouldn't have been instrumentally involved in Mattie's development. Which would have been truly horrific, since I only had him in my life for seven years. I would like to think that I made him my priority for 7 years, and with that I have no guilt. However, I would have had intense life long guilt, if I had made the decision to work full time, and not have had quality time with Mattie. In Mattie's short life, quality time meant EVERY HOUR I had with him! I find it interesting how attending someone else's doctoral defense today could send me right back in time!

Monday, March 5, 2018

Monday, March 5, 2018

Tonight's picture was taken in February of 2009. This was Mattie's version of a goofy face! He was busy building something out of popiscle sticks with his trusty glue gun. Mattie learned to use a glue gun in preschool! He took to it like a duck to water. It was Mattie who taught me how to use a glue gun interestingly enough. 

Mattie loved to build all sorts of structures and fortunately he had this interest because it really helped to pass the long hours and days away in the hospital. 





Quote of the day: Flowers are restful to look at. They have neither emotions nor conflicts. ~ Sigmund Freud


I have one thing after another tomorrow. One of which is attending and serving on a doctoral student's dissertation defense and the other is hosting our Foundation's volunteer appreciation dinner. Though I am not defending a dissertation tomorrow, I remember the stress and anxiety leading up to that day. That's a kind of experience you never forget, because earning a doctorate is kind of the mental equivalent of fraternity hazing. You won't get that Ph.D. without persistence, humility, and determination. As those are the three key ingredients to completing the process. 

When I earned my doctorate in 2003 (on March 10, 2003 -- pictured with me are Peter, my parents, and my dissertation chair), doctoral students had to undergo the painstaking process of finding research subjects, administering assessments, conducting interviews with these subjects, and then interpreting your own data. Now, Universities seem to understand that this original research process is too time consuming and most likely costly. So instead, doctoral students are now allowed to use data set. Meaning data that was collected by another researcher. Therefore when using a data set, students have to design a study in essence after it happened. You have to fit your research questions with the data. It is not a philosophy I care for, and given what I endured to find a sample of employed caregivers for my dissertation, I am left to pause. I realize the quality of education is in question at the high school and college levels. But I thought graduate school was preserved. 

In preparation for tomorrow evening's volunteer appreciation dinner, I worked on designing Mattie Miracle themed floral arrangements. 

The ladies in the flower store got a real kick out of me today. They wanted me to buy pre-arranged flowers and I said NO! I really prefer to pick my own flowers and arrange them myself. It takes more time, but I think it's worth it! Our home smelling intoxicating tonight. Nothing like the fragrance of fresh flowers.  

Sunday, March 4, 2018

Sunday, March 4, 2018

Tonight's picture was taken in March of 2009. Mattie received special box seats at the Verizon Center to see the Ringling Bros and Barnum & Bailey circus. This was Mattie's first and last time seeing the circus. It was a very special treat to have a whole box to ourselves and that way I did not have to worry about germs all around Mattie, given his compromised immunity. Mattie had a fun time, got all sorts of circus gear, and even saw his best buddy, Brandon (a cancer survivor) at the circus. It was a memorable moment, and all of the items we bought for Mattie that day are still on display in his bedroom. 



Quote of the day: Kindness can transform someone's dark moment with a blaze of light. ~ Amy Leigh Mercree

You maybe asking yourself.... what is this a photo of? Well today, Peter and I went to Mattie's school to see the damage to his memorial tree for ourselves. You would have to enlarge this image, but I took it because a lot was going on by Mattie's tree when we arrived on campus. There were 30 Dominion power people on campus to manage the fallen electrical wires. Wires which came down with the falling of several big tree branches. The limbs from this big tree fell onto Mattie's memorial tree and several pieces of playground equipment. In fact, one of the playground pieces used to stand directly behind Mattie's tree. You can't see if anymore because it was completely destroyed. But if you look at the big tree on the left, covered with ivy, you will see a man sitting in the tree. He had to be 60 feet or more in the air, and he was cutting down this damaged tree, branch by branch. It was a sight to watch. 

This was a big chipper, as tree limbs were cut into manageable pieces, they were chewed up in this machine. 

Peter and I had the opportunity to meet Tim Boyd today. We have met Tim on several other occasions but we did not know how familiar he was with our story until today. Tim is an arborist and outside contractor for the school. I knew the school consulted with an arborist regarding the health of Mattie's trees throughout the years, but what I did not know is it is Tim who has donated Mattie's tree to the school. I assumed the school paid for the tree all along. I was wrong. Tim is planning on making yet another tree donation to replace this damaged tree.  

We are deeply indebted to Tim for understanding the importance of the tree. He got it right away that Mattie's tree needed to be replaced. As clearly took a major blow in the storm and with all its damage it could easily get infected now. Peter and I both felt at ease talking to Tim, and we truly appreciated his understanding and compassion regarding losing Mattie. He gave me a big hug and told us he is a father and grandfather. Though saving trees is his business, he is aware of the fact that some things are bigger than the tree itself. All of Tim's crew were very respectful of Mattie's tree, especially while working around it to get at the bigger tree. In this photo you can see one of Tim's crew members collecting all the items that were salvageable from Mattie's tree. We had all sorts of ornaments on the tree and the majority of them went airborne and can't be found. But the ones that remained we collected and took home with us, along with Mattie's memorial tree plaque. 

Tim told us about Sawtooth Oak trees (pictured here), as I shared with him how much Mattie loved oak trees and particularly collecting acorns. Mattie's original red oak that was planted in 2010, died from a root infection. Since that time we were counselled away from oaks. But Tim says the Sawtooth Oak is hardy, grows quickly and is will be a much bigger tree than a Yellowwood could ever be. The Sawtooth is an Asian species of oak native to China, Korea, Japan, Indochina (Vietnam, Thailand, Myanmar, Cambodia) and the Himalayas (Nepal, Bhutan, northeastern India). It is widely planted and has become naturalized in parts of North America.

The Sawtooth Oak is typically planted  for wildlife food provision, as the species tends to bear heavier crops of acorns than other native American oak species. How do you like this cute little cap on top of the acorn? I think Mattie would have gotten a kick out of this!

But the tree leaf looks spiky, quite different from an American oak. So we are deciding what to plant, but the good news is a new tree will be planted in Mattie's memory, thanks to Tim. 

Saturday, March 3, 2018

Saturday, March 3, 2018

Tonight's picture was taken in March of 2009. Mattie was home between treatments and as you can see he wanted to go on our deck and in his sandbox. Due to all his chemo treatments, Mattie had close to no immunity and he easily got sick. Regardless of what we did, Mattie always became neutropenic. It was a bi-product of each chemo infusions. Neutropenia is an abnormally low level of neutrophils. Neutrophils are a common type of white blood cell important to fighting off infections — particularly those caused by bacteria. Given that Mattie was going to get sick anyway, I felt it was important for Mattie to be able to be a child, and not curtail things he wanted to do. Within reason of course. So when Mattie wanted to go outside, we bundled him up and Peter even brought a portable heater outside, aimed at Mattie. What you can't tell however, was that Mattie couldn't walk to the sandbox and put himself inside of it. As a result of all of his surgeries Mattie coped with massive disabilities that prevented him from functioning independently. Given all of this..... look at that smile!


Quote of the day: Coming together is a beginning. Keeping together is progress. Working together is success. ~ Henry Ford


I think Henry Ford was absolutely correct! People can come together, but that doesn't equate to teamwork or success. As the simple act of coming together is just step one in the process. I liken Ford's analogy for success to Mattie Miracle, specifically in regard to our participation with psychosocial researchers. 

In 2012, Mattie Miracle hosted the first ever psychosocial symposium on childhood cancer on Capitol Hill. We had the opportunity to meet and work with four leading researchers who ran scientific panel presentations throughout the symposium. I deem this as coming together. However, it is the leadership we have supplied since 2012, that keeps us coming and working together. 

For the past five years, we have been working together for a common goal.... to create, publish, and get endorsed psychosocial standards of care for children with cancer. We have accomplished ALL of that together, but because we are a solid team now, we continue to push forward trying to strategize how we are going to get the Standards implemented. A good way to begin this push is with subsequent research. Research aimed at assessing who is supplying psychosocial care to children and families at treatment sites around the country and also answering implementation issues and barriers that could be preventing access to this much needed care. 

Which leads me to this research article. Peter and I had the opportunity to work with a group of fantastic social workers from our team to conduct a national survey, to analyze results and then publish the article entitled, Psychosocial standards of care for children with cancer and their families: A national survey of pediatric oncology social workers. The data was collected from around 80 different facilities around the country. We really worked on this from the ground up. It all started in April 2016, when we presented with this group of social workers at the Association of Pediatric Hematology/Oncology Social Workers conference in Rhode Island. At the presentation we told participants that the Association would be electronically sending this survey to them. That proved to be fruitful! Now almost two years later, we have this publication. 

The article's abstract:

In 2015, an interdisciplinary group of psychosocial experts developed The Standards of Psychosocial Care for Children with Cancer and Their Families. This paper presents data from a national survey of pediatric oncology social workers and their experiences in delivering psychosocial care to children and families. In total, 107 social workers from 81 cancer institutions participated in a 25-item online survey that mirrored the 15 Standards for Psychosocial Care. Both closed and open-ended questions were included.

Social work participants reported that psychosocial support is being provided at most cancer centers surveyed, primarily by social workers and child life specialists, addressing adaptation to the cancer diagnosis, treatment, and transitions into survivorship or end-of-life care and bereavement. While social workers reported offering comprehensive services throughout the cancer trajectory, many of the 2015 Standards are not being systematically implemented. Areas for improvement include funding for psychosocial support staff and programs, incorporation of standardized assessment measures, assessment for financial burden throughout treatment and beyond, consistent access to psychology and psychiatry, integrated care for parents and siblings, and more inclusion of palliative care services from time of diagnosis.


To read this article, go to:

http://www.mattiemiracle.com/implementation

Friday, March 2, 2018

Friday, March 2, 2018 

Tonight's picture was taken in November of 2002. Mattie was seven months old and Peter snapped this photo of us in front of the oak tree near our home. Mattie came to greatly appreciate this oak, because when he got into his tent moth caterpillar collection phase, the leaves from this tree, were the only food the caterpillars would eat. They refused all other leaves. Then of course Mattie began to understand that the oak produced acorns. That became another collection. Mattie had various collections, but in this case he loved sharing his findings, as he typically gave people in his life an acorn gift. In fact, Mattie's occupational therapist received one acorn each week. She had quite a collection going by the end of the year! 


Quote of the day: If when I am gone thou would’st honor me then plant a tree. Some highway, bleak and bare,
Make green with Leaves.
So radiant and fair
And full of leaves my monument
will be, so ever full of tuneful melody.
My monument will be a sight most rare 
Trees planted everywhere.
A highway broad from city to the sea 
Plant this in memory of me. ~ David Wright

We are saddened as Mattie's memorial tree suffered a blow today! This is the third memorial tree that has been planted at his school, because the previous two died, and now the current tree was injured by the 60MPH winds. Needless to say this sight was truly upsetting to us, as a broken tree is not the way we wish to remember Mattie. Nonetheless, it makes us pause yet again because what are the chances that three trees can be affected within such a short period of time?

THE HISTORY OF THE TREES.............The first memorial tree was planted in 2010, and was donated to Mattie's school by his classmates. Mattie loved oak trees and particularly loved collecting acorns, which he would then give to special people in his life. Selecting an Oak to honor Mattie was an easy choice. But that tree died in 2013.

In 2013, a Yellowwood tree replaced the Oak, but the Yellowwood died too. Seeing a trend?

In 2014, another Yellowwood was planted. This was a thriving and beautiful tree that produced amazing flowers timed with Mattie's birthday. Yet today's wind, impaired the tree.


I am sure the School would like to find a way to salvage the tree. But here's the thing..... in this case, I am less concerned about the tree and more concerned about the symbolism of the tree. Which is why I feel like we need to plant a fourth tree. I do not want a broken and less than whole tree to symbolize Mattie. I am particularly sensitive to this given Mattie's battle with cancer, a cancer that left him quite disabled and disfigured. I do not want a tree that mimics what cancer did to his body. I rather see a strong, bold, and vibrant tree that represents the true Mattie.  

Thursday, March 1, 2018

Thursday, March 1, 2018

Tonight's picture was taken in March of 2009. Mattie's best preschool buddy, Zachary, came to the hospital to visit Mattie. In fact, Zachary was very present in Mattie's life even through cancer, with visits both at home and in the hospital. It isn't easy as an adult to visit a hospital, much less a child with cancer. So I can imagine how scary and daunting it must be for a child. Pre-cancer, Mattie and Zachary had a physically active form of play, as they were constantly moving around, running, and jumping. Once Mattie had cancer, the way they played with each other had to change. Again this could have been a game changer for some children, but Zachary found a way to make it work. A special friend.



Quote of the day: Being authentic will get you where you need and want to go, and it will be your path to building the most meaningful and enriching connections with others. ~ Michelle Tillis Lederman


As I mentioned in February 24th's blog, I use an on-line site called Gigmasters to find local vendors for the Mattie Miracle Walk & Family Festival. GigMasters is an event services booking platform that matches your needs with entertainers, planners of weddings, dances, parties, festivals, celebrations and corporate events. They are so easy to use and provide great descriptions and reviews, so you can pick the right person for your event. 

This past weekend, I learned about a whole new service called Roaming Hunger. No one told me about it, I just came across it while doing Google searches. I mention this because it is like Gigmasters, however their focus is food. Roaming Hunger is a food truck booking service that allows people to find food trucks in real time, book trucks for upcoming events, and engage food trucks for advertising and promotional purposes. 

I wanted to replace our ice cream vendor at this year's Walk. However, it is easier said than done to find a food truck that will work your event. You can search for reputable food trucks on-line, but it is time consuming, on top of that, you then have to reach out to each one and explain your needs. By going through Roaming Hunger, you just contact ONE PERSON, explain your needs and requests are then sent out to their food truck network! 

All week, I have been getting ice cream, frozen yogurt and ices vendors contacting me. However, I went with a couple who owns an ice cream store in Leesberg, VA and sells Hershey's Ice Cream. They have agreed to come to the walk and sell (not popsicles like last year's vendor) actual scooped ice cream. They will supply us with 12 different flavors as well as two flavors of ices, and donate 10% of sales. 

So I can officially say, I have lined up all our vendors for this year's Walk on May 20th, and we have more activities than ever before.............................

1. a Challenge Walk
2. Two enormous inflatable moon bounces
3. A corn hole tournament with three top prizes
4. A raffle, with baskets valued at over $500 each
5. Lego displays and hands on activities
6. A 30 minute Reptile Alive show, followed by a 30 minute meet and greet with the animals
7. A magic show
8. Make your own crafts
9. A great DJ
10. professional caricaturist
11. professional face painter
12. Food from local vendors
13. corporate sponsor tables
14. Lawn Games

Wednesday, February 28, 2018

Wednesday, February 28, 2018

Tonight's picture was taken in March of 2009. I will never forget this moment in time. Mattie's child life specialist, Linda, invited Mattie to take part in the ribbon cutting event of the child life playroom. When we first entered the hospital in August of 2008, there was NO playroom in the pediatric units. Not until several months into Mattie's treatment, when a playroom was actually funded and constructed. Once it was built, it was one of Mattie's favorite places to visit. Linda understood what the room meant to us and she definitely understood that Mattie thrived on responsibility. He loved being a part of that special day and using a big scissor to cut the ribbon on the door. Pictured around Mattie was the chief of pediatrics at the time and the current president of the Hospital, Michael Sachtleben.


Quote of the day: The only good thing about times of adversity is that you realize who your real friends and fans are – and the rest go away – which in my mind is an OK thing. ~ Pete Wentz

I went to visit my friend Margy today who was diagnosed at the end of January with stage 4 ovarian cancer. Margy has already survived thyroid cancer, and is a cancer survivor in her own right. 

Margy's sister, Nancy, is in town this week visiting her. So I got to meet Nancy for the first time. However, Nancy and I have communicated numerous times by email, as she is a faithful donor to Mattie Miracle. It was lovely to meet her in person and I am impressed with the love and support being shown to Margy. Because unfortunately Peter and I have learned that adversity doesn't always bring out the best in people. 

Margy's husband takes a selfie of all of us each time we visit. I am so happy he does this because I think every aspect of the cancer journey is worth chronicling and photographing. It serves as a remind of what you have experienced and managed through, but at the end of the day, these visuals serve as our legacy. 

When I took photos of Mattie, I never thought I was doing that out of fear he was dying. Instead, I photographed each day because he was living and to me every aspect of Mattie's life was worth documenting. I did this when he was well, so I just continued my memory making while he had cancer. As I always say..... thankfully I did this, because now these photos of all his seven years are priceless to us. 

As I left Margy's house tonight, look who was greeting me!!!! A large Mattie moon. I took that as a sign! Or as Margy would say this was a "Godwink."

I heard her use this term today and I stopped her! Mainly because I never heard it before, so I looked it up. 

A Godwink is what some people would call a coincidence, an answered prayer, or simply an experience where you'd say, "Wow, what are the odds of that!"


What do Godwinks mean? Think about when you were a kid and someone you loved gave you a little wink across the dining room table ... Mom or Dad or Grandma. You didn't say, "What do you mean by that?" You knew. It meant: "Hey kid, I'm thinking about you right now." That's what a Godwink is too: a message of reassurance from above, directly to you, out of seven billion people on the planet, saying "Hey kid ... I'm thinking of you! Keep the faith! You're never alone."

Tuesday, February 27, 2018

Tuesday, February 27, 2018 -- Mattie died 441 weeks ago today. 

Tonight's picture was taken in March of 2009. Mattie was home between treatments and you can see two things for sure. First, Mattie wasn't putting pressure on his right leg. He never did post-surgery, as Mattie was never able to walk independently again. But the second things was, look at Mattie's room. Mattie's room became a warehouse filled with toys and gifts he practically received everyday while in treatment. I was unable to keep track of things, so instead they went into piles. Also notice the aeromattress on the floor. When we were home, this was where I slept while Mattie was in his bed. Because Mattie was hooked up to all sorts of IVs, he couldn't be left alone at night, especially as he needed help using the bathroom. After Mattie died, it took me YEARS to clean out this room. Now of course we use it as our Mattie Miracle work space. 


Quote of the day: Strength is the capacity to break a Hershey bar into four pieces with your bare hands - and then eat just one of the pieces. ~ Judith Viorst



Next week, Mattie Miracle is hosting its annual volunteer dinner. How did this event get started? Well it really started as a planning meeting for our Walk & Family Festival. It was held at a friend's home and finger food was served. But food wasn't the main reason for coming. Since that time, this event has evolved out of a home, into a restaurant, and now to a hotel. I really think in the beginning of the Foundation's history, I needed a lot of help brainstorming the Walk, which is why the planning meeting was crucial. Back then, I wasn't long on ideas and I certainly did not have the energy to devote to a fundraiser. As the journey of grief was all encompassing. However, with time this changed, and I would say the bulk of the Walk is my responsibility. It's a rather daunting proposition, because without these funds we can't run many of our programs and initiatives. 

Though I plan, coordinate, and do a great deal of the heavy lifting for the Walk, I can't do it alone. Especially on the day of the Walk, this group of dedicated volunteers are miracle workers. My core group of volunteers are invited to our annual appreciation dinner because Peter and I know how lucky we are to have these friends. They have been with us long term and are generous with their time, skills, and resources. The event goes smoothly because of these individuals who run activities, fundraise, and help market the Walk. 

I feel like a juggler. One of the things I am planning is next Tuesday night's dinner. On top of that I am trying to finalize Walk sponsors, raffle donors, updating the Walk website, and now just learned today that I have another strategy session for the Psychosocial Standards to plan on March 10. Of which I have to coordinate all the logistics. It doesn't end there, because April is our Item Drive month. 

We invite our friends and supporters to HELP US stock the Mattie Miracle Carts with toiletries in memory of Mattie's upcoming 16th birthday. We ask that all of the items on our AMAZON WISH LIST arrive to us by Monday, April 16. 

We fund and operate a Snack and Item cart at both the MedStar Georgetown University Hospital in Washington, DC and at Children's Hospital at Sinai in Baltimore, MD. These carts provide nutritious snacks, drinks, candy, and toiletry items free of charge to families caring for children with cancer. The carts revolve around the pediatric units three times a week and support families who are providing around the clock care to their children. The carts are greeted with sheer gratitude and appreciation.

Check out our Amazon Wish List:

https://smile.amazon.com/gp/registry/wishlist/2UQOK4GY955ZL/ref=nav_wishlist_lists_1