Mattie Miracle 2021 Walk was a $125,000 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: 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

June 11, 2016

Saturday, June 11, 2016

Saturday, June 11, 2016

Tonight's picture was taken in June of 2006..... Mattie was walking along the Roosevelt Island boardwalk. A place we would visit often on the weekends! It is hard to believe that so much greenery and wildlife exists just minutes from our home. It was a place Mattie loved exploring and he never came home empty handed.... rocks, leaves, and branches were Mattie's typical finds. 

Quote of the day: Loneliness leads to nothing good, only detachment. And sometimes the people who most need to reach out are the people least capable of it. Jane Espenson

Today we attended a high school graduation ceremony and party. However, unlike the previous graduation I attended on Tuesday, this one was held at Mattie's school. It is a very surreal experience to witness the process of graduation at your son's school and yet we know that in 2020, when the rest of Mattie's class will graduate.... he will not! Why did we go to today's graduation? To support our friend whose daughter was graduating. Ironically we know many families, teachers, and administrators at the school, and keep in mind that Mattie only attended kindergarten there! He did not have the opportunity to be a part of that school community for years. 

Tonight's quote is somewhat apropos because loneliness does lead to detachment, especially when you deem yourself as different from other people who happen to be parents. It is a constant struggle to figure out how much I want to be a part of this world, share in other people's joys and happiness, without doing myself in? I want to be supportive of others and share in their lives and usually put that desire over my own needs. Mainly because my own needs are not really understood and I am always cognizant of the fact that the world doesn't revolve around my own needs.

However, I do think that given my life experiences, it clouds my impression and perception of things. For example, people may appreciate certain aspects of a graduation ceremony that mean NOTHING TO ME! I find I need to hear words and sentiments that reflect real world challenges and obstacles, values that pertain to helping others and being a responsible citizen. Otherwise such occasions seem to be unmemorable and lack meaning and depth. 

After today's festivities, we came home and we literally needed to clear our heads and go for a walk. Despite the heat and humidity!

While out, we saw Mattie Moon.
When you lose a child to cancer, it can be hard to know how to react at graduations and milestone moments for our friends.  Clearly we want to be happy for friends, yet it is hard not to feel personal pain at the same time.

We do not have the gift of Mattie with us, but instead we turn to nature to find him..... we see him when we look at the moon, walk along the water and pass boats (a Mattie favorite), or anytime we see a turtle or duck.

This turtle was out basking in the sunshine, but we felt he had one eye tuned to us. 

June 10, 2016

Friday, June 10, 2016

Friday, June 10, 2016

Tonight's picture was taken in May of 2007. We took Mattie to Pennsylvania over that Memorial Day weekend. Mattie got to see Amish Country, ride on an Amish wagon, see farms, and also go to Dutch Wonderland. A theme park geared toward preschoolers. Mattie had a great weekend, and at the hotel we were staying at..... the chef took a liking to Mattie. So he dawned on Mattie's head a chef's hat. Mattie clearly thought that was great given his big smile!!!

Quote of the day: The greatest gift of the garden is the restoration of the five senses. ~ Hanna Rion

Yesterday Mattie's class graduated from middle school. After you lose a child to cancer, each day moving forward has its challenges, but milestone moments like these are even harder. I think it is ironic that of all days, our butterfly ginger lily decided to flower YESTERDAY. I take that as a Mattie sign!!!

The butterfly ginger lily produces clusters of beautiful blooms that look like butterflies, hence its common name. The scent is delightful, reminiscent of a spicy gardenia! But as beautiful as the flowers are, unfortunately, they only last for a day or so. The stalks grow to a height of 3-6 feet tall and has large, sword-shaped leaves that grow to be 2 feet long!

About two years ago, Peter and I went to the Outer Banks of North Carolina after the Foundation's Walk. While there, we toured the Elizabethan Gardens on Roanoke Island. The Gardens are absolutely amazing! But in the gardens was a caretaker, who struck up a conversation with me. I will never forget him. He was a young fellow who lost his grandmother recently. He was very close to his grandmother and missed her dearly. He told me that he found working in the garden therapeutic and helped him feel connected to her. Needless to say, what he was telling me resonated with me. Standing in front of us while we were talking was a flower bed. I happened to ask him what was growing because I had never seen big green leaves like this before. He was the one who introduced me to the Butterfly Ginger Lily. He told me to consider purchasing one in the gift store before leaving and also mentioned that the blossom of the lily is intoxicating. He told me I wouldn't be disappointed. 

I am so glad that I listened to this fellow. At first I debated buying this plant because we live in a different climate than North Carolina. But I have to admit two things sold me on this plant..... the name (because it had butterfly in the title, and I like ALL things butterfly), and the hopes of smelling an intoxicating flower. 
He was absolutely correct! This plant doesn't disappoint. You feel like you are in the tropics when you see it growing and blooming! The fragrance is so strong, it is like being in a field of gardenias!
The flower pots on the deck are our green beans! We planted seeds about two weekends ago..... but look at them, they are taking off. 
These wispy fellows are carrots! We have never grown carrots, much less in a pot..... but we will see what happens. 

June 9, 2016

Thursday, June 9, 2016

Thursday, June 9, 2016

Tonight's picture was taken in April of 2005. Mattie was three years old and we took him to the National Arboretum. This is a special place to visit in April and early May, because hundreds of azaleas are blooming. For as far as the eye can see. My joke with Mattie was the azaleas were blooming in celebration of his April birthday. Mattie loved to hear that and we did try to visit the Arboretum around Mattie's birthday to commemorate the occasion. 

Quote of the day: Where flowers bloom so does hope. ~ Lady Bird Johnson

It is hard to believe that Mattie's classmates graduated from 8th grade today. Middle school is done for them and they are moving onto high school in the Fall. I am not sure what is more earth shattering, the fact that I am forever the mom of a kindergartner, or that Mattie is no longer with us and we have missed the opportunity to see him grow like so many other parents get to do and frankly take for granted with their children. What parent thinks.... I better cherish this year, because there may not be more to come? Most parents fortunately do not live with that mindset or childhood cancer experience.

Yet I assure you graduation puts Peter and I into a funk and quandary. I know full well that it is natural for children to graduate and parents to celebrate, but it is very hard to be happy on one hand for our friends, while on the other hand it further solidifies what is missing in our life. I have no answers for this dilemma, other than acknowledging it outright and trying to balance my own feelings, while being sensitive to those around me.

I spent a good portion of my morning doing finishing touches on four flower arrangements I created. I am not sure what was more challenging, buying and carrying all these flowers, arranging them, or packaging them up so they could be safely transported 25 minutes away from where I live. I vote on boxing and transporting!

In all reality I wasn't sure whether I was home or in a flower shop???? The fragrance of all these flowers filled our home. Which was an intoxicating aroma.

I am in love with flowers and yesterday I went shopping to create these graduation gifts shown below. Each arrangement represents a stage of schooling in my friend's daughter's life..... preschool, elementary, middle, and high school.

This photo shows all the flowers I bought, but they had not been arranged yet. 

I like all the arrangements I created but I do have a favorite. Most likely so do you!!!
From Left to Right: Preschool, Elementary, Middle, and High School flower arrangements
This to me signifies the beauty of preschool, where one finds their inner ray of sunshine (symbolized with sunflowers). I also happen to be a big sunflower fan. I received many of them through Mattie's cancer battle and they signify hope, community, and love to me.
This is my elementary school arrangement. The sweet years, where one's personality unfolds..... symbolized by the lily (at first they are closed up, but over time they open up and produce an incredible fragrance).
It is my middle school years arrangement.... filled with ups and downs and trying to figure out who one is as a student and person. To me the purple rose and mums capture that mood.

The high school years and graduation arrangement.... an anticipated day after years of hard work. I wanted to capture the feeling of celebration and the big pom pom flowers of a hydrangea do that for me!

June 8, 2016

Wednesday, June 8, 2016

Wednesday, June 8, 2016

Tonight's picture was taken in July of 2009, around my birthday. The flowers were meant for me. We snapped this photo of Mattie holding the flowers and it is one of the photos that captures the essence of Mattie. Despite being in pain, he was playing, surrounded by Legos and trying to celebrate my birthday. 

If you look closely at Mattie, you will notice that his arms and legs look more like a tiny branch than part of a human being. Mattie had lost so much weight and muscle mass while battling cancer. Yet despite that reality, look at that beautiful smile!!!!!

Quote of the day: I must have flowers, always, and always.  Claude Monet

This is the current state of our kitchen table. It is filled with flowers. In fact, when you walk in our home, it smells like a flower store. My friend's daughter is graduating from high school this week, and one of my gifts to them is designing four flower arrangements for the party. You need a lot of flowers to do this and between tonight and tomorrow morning, I hope to transform this haphazard mess into lovely arrangements. The verdict is still out, so stay tuned!

June 7, 2016

Tuesday, June 7, 2016

Tuesday, June 7, 2016 -- Mattie died 351 weeks ago today.

Tonight's picture was taken in July of 2002, at Mattie's baptism. The priest presiding was Jim Greenfield. I met Father Jim at the George Washington University and I always credit Jim for also giving me my first clinical client. While I was in graduate school I became friends with Jim. He is an extraordinary priest, which is why he is now the Provincial of the Wilmington-Philadelphia Province of the Oblates of St. Francis de Sales. Jim gave Peter and I pre-cana (to get married in the Catholic church), he baptized Mattie, and he also presided over Mattie's funeral. While attending a graduation today of a Catholic School, don't you know they mentioned Jim in their ceremony! I associate Jim with our life with Mattie and as soon as I heard Jim's name, I was transported back in time. 

In this photo, from left to right were: Chris (Peter's brother), Lisa (Peter's Sister-in-law), Peter, Jim with Mattie, Vicki, Donna (Vicki's cousin), and Peter (Donna's husband)

Quote of the day: Share your sparkle wherever you are. ~ Dodinsky

I was invited to Isabel's graduation from Bishop Ireton High School. Isabel is the daughter of my friend Heidi. How did I meet Heidi? I met Heidi in my zumba class, however, Heidi actually knew of me before I met her. She had been reading Mattie's blog all through his cancer battle. She knew about us through her church. The funny part about this was when I entered zumba class on the first day (about a year after Mattie died), Heidi came up to me and hugged me. She knew me, but I did not know her. Over the years, I have gotten to know Heidi's family and have worked closely with her daughter, Isabel, through Mattie Miracle events. Isabel has volunteered many hours with the Foundation from middle school through high school. 

Today's graduation ceremony was at the Basilica of the National Shrine of the Immaculate Conception. This is the largest catholic church in the United States and truly reminded me of St. Peter's in Rome. 

The ceremony featured 208 graduates, their faculty, two student speeches, and a commencement speech by an Admiral in the Navy. The Admiral told a story about his experiences captaining a submarine and the moral of the story was mistakes happen. But it is what we learn from mistakes and how we pull out of them which is important. It was a touching presentation, especially knowing that his daughter was in the graduating class. He told the graduates that many of the men he works with on his current assignment.... an aircraft carrier, are all about their age. That these men work hard, under terrible conditions to provide them with freedom and the ability to go to school, therefore he asked that they think about this before going to bed tonight. 

The basilica is a very special setting, along with the beauty of the organ commemorating the occasion.    

After graduation, Isabel and her family invited me out to lunch at Washington Harbor. This is Isabel and me with the Kennedy Center, the Watergate and Memorial Bridge behind us. 
 Heidi, Isabel, and me. 

Isabel --- the proud graduate!

June 6, 2016

Monday, June 6, 2016

Monday, June 6, 2016

Tonight's picture was taken on September 1, 2009. Which was 7 days before Mattie died. When I try to explain Mattie's pain to attendees at conferences, I always show this photo. To me this photo speaks 1,000 words. Mattie was hooked up to a portable pain pump. Yet despite that, he was still miserable and in pain. That day in clinic, Mattie's art therapists tried to engage him and divert his attention. They gave him this remote controlled dinosaur, which you can see intrigued Mattie for a short while. 

Quote of the day: Some old wounds never truly heal, and bleed again at the slightest word. George R.R. Martin

I posted an article on Facebook today entitled, "Bright lights, big hassle for children in the hospital." For some this article maybe surprising, but for those of us who have lived in a hospital for days, weeks, and months on end.... WE GET IT!!! SLEEP doesn't come naturally in a hospital, mainly because it is impossible to distinguish day from night (thanks to noise, monitors, machines beeping, blood pressure and vital checks every four hours, or how about the radiology tech who thinks it is okay to take an x-ray of a child at 3pm, etc...)!

If children get any sleep it is because parents are advocating for this and the angels helping us carry out this request (of fewer night disturbances) are our nurses!!!

In addition to the article below, you will also find a copy of my September 4, 2009 posting. The reason why I copied it below is it speaks to one of MANY of the crises we faced at night in the hospital. As I re-read my words now, I also see how CLUELESS I was about the fact that Mattie was dying within days. No one really prepared me for Mattie's rapid decline and death until one day two of Mattie's nurses got a hold of me and told me what the filling up of fluid in the abdomen meant for Mattie. Mattie was dying and yet NONE of his doctors could tell me. What I land up reflecting upon even today is that throughout Mattie's battle, we were always being pro-active and doing something to make Mattie get better. When we learned there was NOTHING else that could be done medically, this was a real shift and we initially felt disempowered. Yet what we learned was we still had a lot of DO.... we were no longer performing tasks in hopes for a cure but we fought hard for comfort care throughout the end of Mattie's life. 

Bright Lights, Big Hassles For Children In The Hospital

Blog Posting from September 4, 2009 (four days before Mattie died)

As our readers know, Mattie was in intense pain on Thursday during the day, which is one of the reasons he was readmitted to the PICU. However, by Thursday night, Mattie's abdomen was becoming VERY distended. So much so that it looked like he was going to burst open. By around 2am, Mattie looked about nine months pregnant. The whole situation was down right frightening, Mattie was in excruciating pain, and the worst part about this is we weren't getting sufficient answers to our questions. At one point last night, we were dealing with over four different medical residents in our room, all from different specialities. Each professional had their own opinion about what was happening, but guess what?! No two opinions were the same. We landed up becoming highly anxious over all of this, and we were very uncertain how to help Mattie. The surgical resident felt that Mattie needed follow up xrays last night. So literally at 2am, a portable xray came up to take the first xray, and then about an hour later came back for an additional xray. However, I had a major problem with this x-ray tech. This tech had neither expertise working with children nor compassion to help a child in pain. The tech wanted to place Mattie's body in a very uncomfortable position just to take the x-ray. Mattie was hysterical, anxious, and in so much pain that he barely could move his body. Yet the tech kept insisting and becoming impatient with Mattie that he wasn't complying with his directions. Peter was helping the tech, and I went into the room next door, because I needed a break from the screaming and crying. However, when Mattie yelled out, "Mommy," I ran back in the room, and chewed out the tech. I told him he had to learn to think outside the box. If he is working with a patient who is unable to move his/her body to a certain position, then it was his job to find another way to get the job done. So I showed him how it could be done differently. I was so angry, I wanted to throttle this man.

The situation only got worse. There were two groups of thinking for why Mattie's abdomen was dramatically increasing in size. One theory was that Mattie's pleural cavity was filled with air, and the other theory was the cavity was filled with fluid. Naturally air and fluid are two different things, and should be treated accordingly, not the same way. Our nurses and advocates were concerned about Mattie's distention too, and a few of them recommended the placement of an NG feeding tube last night to help tap and pull out the air from Mattie's abdomen. The problem with this is two fold. Mattie would have to sit still for the placement of this tube without sedation. This may work for a typical child, though I imagine no one likes the gagging feeling this tube produces while it is being inserted, but for Mattie having such a tube placement would only heighten his anxiety. In addition, as Peter astutely said, we are NOT sure that Mattie's cavity is filled with air, and if it wasn't, then we would be subjecting Mattie to an unnecessary painful procedure. So Peter did not consent to an NG tube placement. I was actually on the fence about this, I just wanted the stomach region to return to its normal size. But Peter did a great job, and he actually made the right choice in the end.

So basically after several theoretical arguments with residents, watching them manipulate and touch Mattie's abdomen (which caused INTENSE pain and anxiety), and two unpleasant xrays, we were all wiped out, with no real answers or a plan of attack for this growing problem. By 7am today, I literally couldn't take it anymore. Peter was up most of the night with Mattie, helping him manage Mattie's pain. I was listening to Mattie's pain all night, but physically couldn't move to help him. I was too wiped out from my previous all nighter the night before. Peter and Mattie's wonderful HEM/ONC nurse, Janelle, just couldn't give Mattie enough pain medication early this morning to balance and mitigate the pain. Mattie just kept on screaming and crying. It was completely INHUMANE! I had observed enough to know that something had to be resolved ASAP and we needed answers. Until we were able to get answers the doctors raised the concentration of Mattie's Dilaudid pain dosage, which we hoped would help with the pain, but Peter and I were both concerned that the cause of the pain wasn't being identified. We were only throwing medications at the problem to cover up the pain. So I wasn't happy and grew more and more concerned. 
The irony is, I wonder if the doctors were as concerned as we were. They certainly did not act like it, but Peter and I just kept pressing the issue! I told Janelle, that the on call attending doctor, Dr. Abu-Ghosh had 30 minutes to get herself here to answer our questions, otherwise I was going around her. I needed an attending physician to help us, and had more than my fill of residents by 7am. Janelle worked hard to pass along our messages, and in the mean time, I called Dr. Snyder, Mattie's oncologist. I basically started off the conversation with the line, "I need your help." She could hear Mattie writhing in pain in the background and within 30 minutes, ordered a CT scan and ultrasound for Mattie with sedation. I also paged Debbi, our sedation nurse angel, because I felt we needed a powerful advocate. Debbi responded to my page within minutes and came to visit and assured me that in an hour Mattie would be sedated and scanned. Thank God! I had asked for a CT scan on Thursday, but the doctors felt that Mattie did not need one. Here is the irony of all of this, so far when Peter and I have said that something is wrong with Mattie and he needs further assessment, we are usually 100% correct.

Debbi helped us obtain Versed for Mattie today. Mattie was SO anxious this morning, we could bearly touch or talk with him. Versed helped tremendously and we were able to take Mattie down to the CT scanner. Jey, our favorite CT tech, and Mattie's "big brother" met us in the CT room. He spoke with Mattie and told Mattie that he did not have to get off the stretcher mattress, instead Jey transferred Mattie onto the CT scanner, mattress and all. This was actually a very thoughtful and compassionate gesture, because any additional movements for Mattie were painful.

The CT scan identified the problem immediately. Mattie's pleural cavity was completely filled with fluid, NOT air! Thank goodness we did not do the NG feeding tube last night, because that would NOT have addressed the problem. We met with a radiologist today, who highly recommended a Paracentesis, which is a procedure to take out fluid that has collected in the belly (peritoneal fluid). This fluid buildup is called ascites. Ascites may be caused by infection, inflammation, an injury, or other conditions, such as cirrhosis or cancer. The fluid is taken out using a long, thin needle put through the belly. The fluid is sent to a lab and studied to find the cause of the fluid buildup. Paracentesis also may be done to take the fluid out to relieve belly pressure or pain in people with cancer or cirrhosis. I liked this radiologist's style, because she performed this procedure immediately under the guidance of an ultrasound. The radiologist pulled out 1.5 liters of fluid from Mattie's abdomen. That is a HUGE amount of fluid, and it is no wonder he was in severe pain. The radiologist told me that when the pleural cavity is under pressure and that level of expansion, that this can cause off the charts pain.

I was relieved that there was an explanation for the pain, because I was also being prepared for the option that this issue wasn't correctable and this was perhaps just disease progression, making it virtually impossible to alleviate Mattie's pain. Hearing this news was devastating alone, and when I heard that the CT scan showed fluid build up, I felt as if I won the lottery because in my mind this was correctable. I also had the pollyanna attitude that once the fluid was drained, Mattie would feel better for a while, and we would be able to be discharged within a day or so. All very wishful thinking.

June 5, 2016

Sunday, June 5, 2016

Sunday, June 5, 2016

Tonight's picture was taken on June 17, 2007, which happened to be Father's Day. That day we walked around DC and even took our first and last Duck Tour. Mattie loved the Duck Tour experience because the bus drives on land and also drives right into the Potomac River and operates like a boat. Mattie thought that was absolutely incredible, not to mention the duck like whistles they give each passenger. It was a Father's Day we reflect on often. I am sure most people do not look at activities they do with their children and think.... this could be my first and last time doing this with my child? Unfortunately for us, we had many firsts and lasts with Mattie. 

Quote of the day: It’s not whether you get knocked down, it’s whether you get up. ~ Vince Lombardi

I feel that Vince Lombardi's quote truly applies to Peter and me. We were invited to several high school graduation events and parties this week. Starting today, in which we attended two parties. Back to back! It would be a lot easier naturally to say we are NOT GOING! We face quandaries like this often.... do we go and support our friends or do we play it safer and not go? After all, at some point during happy events, I always land up feeling sad and depressed. I try to move through these feelings because if I don't, I would shut out the world and with that all the things my friend's experience. 

The second graduation party we attended this afternoon was at our friend Heidi's home. Heidi's daughter, Isabel, has done a lot of volunteer work with Mattie Miracle. In fact, she started when she was in middle school. 

Heidi had set up several creative tables that truly caught my attention. The first one was this candy table. On one of the chalk boards it says... Nerd, Dum Dum, Smartie, Air Head or book worm.... which one were you in high school? The reason this is SO adorable, is the fact that these descriptors are also the names of candies! So Heidi asked us to guess..... Peter classified himself as a Nerd and myself a Smartie! Ironically I guessed Peter was a smartie and he guessed I was a book worm. I don't view Peter as a nerd and though I may have gone to school forever, I am anything but a book worm. To me this was the perfect party favor table, because kids and adults alike gravitate to candy. 

This was the second table that caught my attention. There were three things Heidi asked people to do here..... one was to take a puzzle piece and write your name on it. This will serve almost like a guest book documenting who attended once Isabel assembles the puzzle. The other two ideas.... first, to write a favorite memory we had of Isabel and the second was to write some words of wisdom for Isabel. 

This was the beautiful cake!

There was a "Big Cheese" truck that visited Heidi's home. This fellow made grill cheese sandwiches to order for all of us! There had to be close to 70 people, but he did not miss a beat. 

At the party was also a photo booth. I remember these things at carnivals as a kid. But haven't done one since. Peter encouraged me, so we went inside!