MATTIE MIRACLE VIRTUAL WALK WAS AN $110,000 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

September 14, 2019

Saturday, September 14, 2019

Saturday, September 14, 2019

Tonight's picture was taken in September of 2008. Mattie was in his second month of chemotherapy. As you can see he lost all of his hair. We spent a lot of time in Mattie's hospital room whenever he was admitted. It was very confining, isolating, and stressful at times. However, we always tried to keep Mattie busy, entertained and engaged. That day he was given some new markers and a cardboard box. Mattie loved working with boxes, and enjoyed transforming them to whatever he could imagine. I snapped this photo because I got a kick out of Mattie with his tower of markers. 



Quote of the day: The deeper the sorrow carves into your being, the more you can contain. ~ Khalil Gibran


Yesterday, I mentioned that my counseling colleague (Betty, the lady in green with the black hat) wanted to nominate me for Mother of the Year. Today I worked with her to answer the question.... tell us why you are nominating this special mother for Mother of the Year. Since no one knows my story better than me, it made sense to help her with this essay. In any case, the essay below was submitted in time for tomorrow's deadline. Now I have step two to do which involves a bio, my philosophy on parenting, more photos, a listing of my community contributions, and two letters of support. To me this is quite a heavy lift for this award, and I am not sure the effort is worth it at the moment. Time will tell. 
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I have known Victoria since 2005. We met when she was the Executive Director of the DC Mental Health Counselors Association. A chapter of a National association that meets the advocacy and professional development needs of mental health providers in the District of Columbia. For three years, I had the opportunity to witness her leadership style, experience the energy and vision she brought to the Association, and observe the way she united members behind a common cause. She was the ultimate role model for graduate students and new professionals, as she balanced work, community service, and was a full-time mom to her only child, Mattie.

When we think of motherhood, what comes to mind are the daily activities, love, and care that we impart to our children in order to equip them with the knowledge, skills, and abilities to become competent, capable, and compassionate human beings. But what happens when a mom loses her only child to cancer? Is she still a mom? Victoria’s story illustrates that a mother’s love never dies. Instead she shows us that it is possible to live and move forward through great adversity and to harness the love she has as a mother to help countless other children with grace and dignity in our Nation’s capital. Once you hear Victoria’s story, you will agree with me that she is worthy of being Mother of the Year, as she is a mom who lives by our Golden Rule. 

Victoria and her son, Mattie, were a lot alike. They looked very similar and both had a vivacious personality. In Mattie’s first five years of life, he was healthy and a typically developing child. However, at the age of 6, Mattie was diagnosed with bone cancer. He underwent eight months of high dose chemotherapy, two limb salvaging surgeries, a sternotomy to remove lung tumors, experimental treatment, and radiation. In addition, three months into the treatment process, Mattie was diagnosed with clinical depression, anxiety, and medical traumatic stress. Mental health issues which he did not have prior to his diagnosis. Through Mattie’s journey, Victoria learned that childhood cancer is NOT JUST ABOUT THE MEDICINE. She quit her job as an educator and put all other professional responsibilities on hold to provide care 24 by 7 to Mattie, who lived primarily in the hospital for 14 months of his treatment. Unfortunately, after a courageous journey with cancer, Mattie died in September of 2009.   

Victoria experienced a parent’s worst nightmare, the death of a child. She and her husband were forced to live in a world without their child, which redefined every aspect of their life and future. Not to mention their relationship. Yet through her strength, and deep commitment and love for Mattie, she keeps his memory alive through the Mattie Miracle Cancer Foundation. A 501c3, that she and her husband created two months after Mattie died, on November 2, 2009. Victoria has a Ph.D. in Mental Health Counseling from the George Washington University and is a licensed professional counselor who was appointed by Mayor Anthony Williams to chair the DC Board of Professional Counseling, a position she has held for 13 years. I mention this because Victoria has a unique clinical lens that she used when she supported her son through his cancer journey. It is this clinical lens that has helped to define and shape the vision and scope of the Mattie Miracle Cancer Foundation.  

The Mattie Miracle Cancer Foundation is the only national non-profit dedicated to psychosocial awareness, advocacy, support and the research of childhood cancer. Victoria always says that Mattie was her best teacher, as she takes the lessons learned from his care to guide the Foundation’s mission and goals. Mattie Miracle supports direct psychosocial services, by funding child life professionals at two hospitals in our Nation’s capital. These professionals help around 3,500 children with cancer and their families a year. Victoria not only sets the vision for the Foundation, but also spearheads all fundraising events.
In addition to Victoria’s local work, she has been working with a team of psycho-oncologists from around the US, Canada, and the Netherlands since 2012. 

Mattie Miracle had the vision to create evidence based psychosocial standards of care. Ironically there are medical standards of care for children with cancer, so regardless of the hospital children are treated at, they will receive the same cocktail of medications. However, the psychological and social supportive care services offered to children and families varies greatly from one hospital to the next. Having Psychosocial Standards of Care would ensure that children and families receive the optimal level of support from the time of diagnosis, through survivorship, or end of life and bereavement care. Which is vital, since research shows that psychosocial support enhances the effectiveness of the medical care. 

The Psychosocial Standards of Care were published in a top tier medical journal, Pediatric Blood & Cancer, in December of 2015. The Psychosocial Standards of Care for Children with Cancer and Their Families were developed over a three-year time frame, involved 85 health care professionals from 44 institutions across the U.S., Canada, and the Netherlands. The project resulted in the largest and most comprehensive psychosocial standards research study to date in which 1,217 journal articles were reviewed. These historic evidence-based standards define what children with cancer and their families must receive to effectively support their psychosocial needs throughout the cancer journey.  The Standards have been endorsed by 17 professional organizations: 1) American Academy of Child & Adolescent Psychiatry (AACAP), 2) American Childhood Cancer Organization (ACCO), 3) American Psychological Association's Society of Pediatric Psychology (SPP - Division 54), 4) American Psychosocial Oncology Society (APOS), 5) Association of Pediatric Hematology/Oncology Educational Specialists (APHOES), 6) Association of Pediatric Hematology/Oncology Nurses (APHON), 7) Association for Pediatric Oncology Social Workers (APOSW). 8) American Society of Pediatric Hematology/Oncology (ASPHO), 9) B+ Foundation, 10) Canadian Association of Psychosocial Oncology (CAPO), 11) Cancer Support Community, 12) Children's Cause for Cancer Advocacy (CCCA), 13) Children's Oncology Group (COG), 14) CURE Childhood Cancer, 15) Momcology, 16) National Children's Cancer Society, and 17) St. Baldrick's Foundation. Currently the Mattie Miracle research team is working on strategies to implement these Standards at treatment sites around the Country.

In 2019, Mattie Miracle celebrated its 10th anniversary. Here are some of the highlights from Victoria’s ten years of service as president and co-founder of Mattie Miracle:

1) Raised over $500,000 for childhood cancer 
2) Supported over 25,000 children with cancer
3) Endowed the Mattie Miracle Child Life Program 
4) Funded four Child Life Specialists 
5) Established the Mattie Miracle Snack & Item Carts at multiple hospitals
6) Provided snacks and items to over 20,000 in-patient families 
7) Published the first Evidence Based Psychosocial Standards of Care  
8) Funded over $40,000 in psychosocial research grants 
9) Added psychosocial language to the childhood cancer STAR Act (signed              into Law, June 2018)
10) Mentored hundreds of students and young professionals

It is very evident to all of us who know Victoria, that she is passionate about helping children and families facing a cancer crisis. Yet she uses her education, skills, and abilities, to not only directly help children and families within our community but is trying to change how comprehensive cancer care is provided on the national level. She believes that psychosocial support is just as important as the medicine and works tirelessly to advocate for change on Capitol Hill. 

What is also impressive is the vast number of volunteers who are part of the Mattie Miracle family. This is important to mention because Mattie Miracle uses no funds raised to support administrative or overhead costs. All funds directly support their psychosocial services and programs. Therefore, volunteers of all ages, are the life blood of the Foundation. Victoria models kindness, compassion, and energizes individuals, schools, and businesses each year to take part in the Foundation’s bi-annual item drives. All items donated help to stock the free snack and item carts that Mattie Miracle operates at hospitals. These carts help to support the basic needs of families while they are in the hospital caring for children with life threatening illnesses. 

I believe that Victoria is still a mom. It is my hope that American Mothers concurs with me and seriously considers her for the honor of Mother of the Year. She uses her maternal energy each day to make the world a better place for children with cancer. From great tragedy, she has emerged, and is devoting her life to helping others, supporting other families like her who are facing the impossible, and in the process has built an incredible legacy for her son, Mattie. Victoria illustrates to all of us that with a mother’s love all things are possible.

September 13, 2019

Friday, September 13, 2019

Friday, September 13, 2019

Tonight's picture was taken on August 21, 2008. Mattie was in his first month of treatment. That particular day, we received a visit at home from two teachers at Mattie's school. We had never met Dave (on the left) before, but we knew he was the head coach of the football team. The other teacher in this photo is Larry. Larry was actually one of Mattie's kindergarten teachers and he got to know Mattie quite well. Larry was also the assistant coach of the football team. That day they came over to our home to surprise Mattie with a signed team ball, a photo from the team, and other gear. 


Quote of the day: It is better to deserve honors and not have them than to have them and not deserve them. Mark Twain


I was headed out the door this morning to run my monthly licensure board meeting. At the same time I was gathering my things to leave and our home phone rang. After which my cell phone rang. I couldn't be late to my meeting, so I listened to the voice mail message in the car and then called back my professional counseling colleague. Betty and I go back a while, as I recruited her to be a part of the DC Mental Health Counselors Association board. In fact, she still serves on the board and she says that is only because of me (or I should say my legacy of leadership as Executive Director)! 


Betty wanted me to know that she serves on the National Capital board of American Mothers, and nominated me for the "Mother of the Year" award.

The ideals of American Mothers, Inc. began in the heart and mind of Anna Reeves Jarvis as she sought to heal the damage done to families caught in the conflict of the Civil War. By organizing a day of love and friendship across battle lines, this simple observance grew into the national holiday known as Mother’s Day for which American Mothers, Inc. is the official sponsor.

Criteria for nomination:

  • A nominee for Mother of the Year® must be the mother of one or more children.
  • She should embody those traits highly regarded in mothers and display the ability to strengthen family relationships.
  • She should exemplify in her life and conduct the precepts of the Golden Rule and the power of a mother’s inner strength to deal with the successes and challenges in life.
  • She should also exhibit an interest in her community by participation in programs and services that enrich mothers, children and/or families.
As Mark Twain's quote points out, it is better to deserve honors and not have them, than to have them but not deserve them. To me the fact that those around me want to nominate me for awards is very meaningful. Especially in this particular case because I am not sure society itself would call me a mom. I no longer balance any of the day to day challenges of motherhood. My type of mothering is a bit different, because I nurture a memory. I work hard at this so others know and remember Mattie, and in the process I use the lessons I learned from Mattie to help other children with cancer and their families. We shall see if "American Mothers" also deem me a mom. 

September 12, 2019

Thursday, September 12, 2019

Thursday, September 12, 2019

Tonight's picture was taken on August 30, 2008. This was Mattie's first month on treatment. Within that month's time, chemotherapy triggered complete hair loss. Mattie handled this change quite well actually. He did not seem bothered, or at least wasn't early on in the process. After the limb salvaging surgeries, when he was unable to walk again and function independently, then his hair loss seemed to remind him that he was indeed very sick. 

The picture captured Mattie creating a beautiful tissue box holder while  in his hospital room. This box holder remains on my nightstand today. 


Quote of the day: The Great Nonprofits seal is the second most trusted rating seal, after the Better Business Bureau. According to a study by Software Advice



I have noticed on several other childhood cancer organization websites, that they feature a non-profit seal of approval. So I looked into it and decided to work on applying for one for Mattie Miracle. I have been working on this for the last few weeks, because it requires a minimum of ten testimonials from people who have either volunteered, donated, or supported us in some way. 

According to Great Non-Profits:

  • 80% of donors say reviews influence their giving!
  • 90% of donors say reviews help them better understand a nonprofit's work!
  • More than 3 million people visit Great Nonprofits' website a year!


I am proud to say that we earned our seal of approval on September 11, 2019. Given that yesterday was the anniversary of 9/11, I did not report this news. 

I invite you to read the 11 testimonials we have received to date. My goal is to keep accruing feedback because this is very important to help showcase our work. This website enables potential donors to hear directly from our community. 

Check it out and consider writing a review:
https://greatnonprofits.org/org/mattie-miracle-cancer-foundation

September 11, 2019

Wednesday, September 11, 2019

Wednesday, September 11, 2019

Tonight's picture was taken in August of 2009. This was the beginning of the end for Mattie, as you can see he had oxygen connected to him at all times, along with IV pains meds, pain patches, and IV fluids. How Mattie was able to smile given all he was coping with is truly hard to comprehend. That day Mattie received a Lego kit to create this wonderful Victorian type of home/store. Needless to say, he and Peter spent hours building the structure, and it still remains assembled in our living room today. 



Quote of the day: Nearly two decades later, America and the world have changed significantly, but the events of 9/11 remain with us. Even on that darkest day, the remarkable heroism of countless men and women shone through. In every selfless act, in every expression of kindness, we keep the memories of those heroes alive. ~  David Carlin


Today marks the 18th anniversary of 9/11. For those of us alive during these horrific terrorist attacks, we will never forget where we were when we heard the news or the profound devastation we saw on TV in New York, Washington, DC and Shanksville, PA. I have been glued to the TV and radio all day today, listening to stories about the incredible lives lost whether on the ground or in the air. One woman on the radio today, explained that she went into the common lounge at her place of business to watch TV during the 9/11 ceremonies at Ground Zero. While minding her own business, a colleague came in and basically made fun of her. He wanted to know why she was watching this, as it is "over" and happened a long time ago. 

Just hearing this commentary made me so angry. Not only does this person want to erase history, but he wants those around him to be robotic.... not express concerns, feelings, and sympathy after seeing and hearing such devastation. All basic human emotions, and frankly what separates us from the animal species. You just have to listen to the family survivors, or the rescue workers who are battling all sorts of serious health issues because of exposure to toxins at Ground Zero, to know that people do remember and are hurting deeply. Our fellow Americans' lives have been profoundly changed, people continue to grieve, and the pain hasn't decreased for them in 18 years. Therefore, 18 is just a number. I haven't lived their trauma, but I understand traumatic loss. The words and feelings they express make sense to me. I truly feel what they are saying and it isn't a foreign language to me. 

I continue to be amazed how 9/11 is NOT acknowledged in schools. As many school aged children now weren't even alive during this tragedy. So what does that mean? You didn't experience, so what it doesn't exist or matter? I would say educators and administrators are in essence saying this to our children by their actions. I get the skirting around difficult issues, but we aren't doing our children any service by not equipping them to process and verbalize crises, pain, and grief. 

I came across the article entitled, 9/11: Remembering Those Lost 18 Years Ago
(https://www.nytimes.com/2019/09/11/nyregion/september-11-tribute-ceremony.html). The below excerpt caught my attention, because I would say for the most part everyone around me in Washington, DC today acted like it was business as usual. Sure we want to return to our vibrancy, but in my opinion that doesn't mean erasing our history and memories.

The 18th anniversary, not a major milestone like the fifth or the 10th, is taking place in an area that rebounded as it was rebuilt and, some say, as the country moved on. The crowd outside the ceremony thinned as the morning went on.
Men and women in business clothes rushed from one appointment to the next. Riders on Citi Bikes shouted “bike lane” to oblivious pedestrians who were standing in their way while texting on cellphones. But for the families whose relatives were killed, the grief remains as piercing and profound as ever.  La-Shawn Clark said the memorial was where she sensed his (her husband's) presence the most. “There’s never closure,” she said, “but when I come here, when the wind blows, it’s like he’s kissing me.”

When I attended high school in California, my school's librarian was Mrs. Lynn Angell. She was a lovely lady and truly wanted to help each and every student and made the library an inviting place to visit. Mrs. Angell died in Flight 11 on 9/11. While listening to the names announced at the Ground Zero ceremony today, I heard her and her husband's names read aloud. I remember Mrs. Angell and my heart goes out to all 9/11 family members left behind. 

September 10, 2019

Tuesday, September 10, 2019

Tuesday, September 10, 2019 -- Mattie died 519 weeks ago today. 

Tonight's picture was taken on August 22, 2009. Mattie was home for a brief time from the hospital and that evening he lost his front tooth. In the middle of coping with cancer, we had several developmental milestones like loose teeth and visits from the tooth fairy. We celebrated all those moments! Before Mattie was diagnosed, we bought a tooth fairy box in Florida together. We used it for all his baby teeth. Mattie had a deal with the tooth fairy. He did not want money, but instead would write her a note and tell her what he was hoping for. The requests ranged from a hotwheel car to even a necklace made out of pasta. 


Quote of the day: And in a very real sense, our world is changed the moment a loved one dies because each person we love makes up a precious and vital piece of our world. At such a challenging time, we need to be patient with the chaos we are now enduring both inside us and around us. ~ Carol Staudacher,


I had the opportunity to talk with someone today who is from another Country. Her father died two years ago and she and her family appear to be grieving differently. It concerned her that she cries at sad movies and still thinks about her dad, whereas others in the family seem to be happier and aren't crying. She gave me an example about a movie they were recently watching together and apparently she was the only one who found the content sad, reminded her of her dad and her family. She wanted to know why others weren't moved by this movie and weren't crying?

Many questions and many concerns. Not knowing her family makes it hard to provide suggestions and thoughts on this as her friend, but I can surmise why there maybe differences based on the information she has shared with me over the years. Why am I mentioning this? Well her dialogue today sparked my own experiences with grief. We all are impacted by the loss of a loved one in different ways and how we manage the loss also differs by person. Yet when  overwhelmed by feelings it is hard to step back and have perspective. The immediate reaction is..... 'something is wrong with me? No one else around me is acting or feeling this way!'

Peter and I went through this very same feeling, early on in our grief journey. While one of us was fine, the other was a mess. I wanted to be around children Mattie's age and Peter did not want any part of it (I say that, but unfortunately I put Peter in such situations). At first this was off putting as a couple, because the natural reaction 'is why aren't you feeling this way too?!' We got down to the point of not understanding one another and being perplexed, until we really talked this through and agreed that we both are dealing with the tragedy of Mattie's death. But we are different people and therefore though married and Mattie's parents, we won't be feeling the exact same thing or reacting the exact same way on any given day. That doesn't mean we aren't both grieving, we were, but we needed to cope with the loss in our own manner. Once we got on board with appreciating these differences, we did a much better job at navigating the journey together. Which is good, since it is a lifelong journey.

My friend's story today reminded me of my own struggles and the fact that society has a mindset that grieving looks a certain way. If you aren't emoting, then surely something isn't right with you, and you need help. Actually I would beg to differ. Emoting comes with more time and more comfort with living with the loss. In the beginning (and the beginning time span can look different for each person), being numb and having a flat affect about the loss are nature's way of protecting us. After an unexpected or traumatic loss, just meeting one's physical/basic needs consumes all the energy one can muster in a given day. The emotional work comes much later, but when it does, wow..... I remember wishing for the days of being numb again. 

September 9, 2019

Monday, September 9, 2019

Monday, September 9, 2019

Tonight's picture was taken on September 1, 2009. This maybe the last photo I took of Mattie in the month of September, because a week later, he died. That day, Mattie was readmitted to the hospital. He was in terrible pain, which we could no longer manage at home. It was Mattie who elected to come back to the hospital, as he did not feel comfortable at home. Which should give you a good indication for how miserable Mattie felt. Pictured with Mattie is Jenny, one of his art therapists. Jenny worked very hard that day to try to engage Mattie, divert his attention, and to give him a moment of happiness with a remote controlled dinosaur. 


Quote of the day: Your instinct may be to avoid someone who is experiencing loss because you fear you'll say the wrong thing. But loss can be very isolating, and if you stay away, you will compound the loss and the pain. ~ Robbie Miller Kaplan


Last week, Peter and I attended a non-profit fundraiser. It was not childhood cancer related. Within the event was a bingo tournament. I have played a lot of bingo in my life, and I can safely say..... I have still yet to win. 

While at the event, a woman came over to our table and asked if she could join us as the event was full and there was no other table available for her. We welcomed her and chatted for quite a bit. Naturally it being back to school season, we heard a lot about her children and their schools. She asked us about our children, and I just said it was a long story and skipped over it. Since this wasn't a childhood cancer event and we were not there to spread awareness about Mattie Miracle, I did not feel it was the appropriate place to have such a conversation. 


Then we moved into the actual bingo tournament of the evening. We were all good sports about the game, as none of us expected to really win. The goal was to support the non-profit. While one game finished and a next was about to begin, our table mate said to me.... "I live a happy life, so I don't need to win Bingo." She then said, "I am sure you feel the same." Well something about that comment set me off, so I literally said.... "no I have not had a happy life" and told her that we lost our only child to cancer. She was in total shock. You know when you can see on someone's face the fact that they are replaying in their head exactly what they have been talking about with you the whole evening. I believe that was what I was observing. 

I did not say the comment to make her feel badly, but in essence that is what happened. I always land up asking myself why people think it is okay for me to absorb their conversations about their children and their life, and yet it is NOT okay for them to hear about my life. I know this is a rhetorical question, but I do ask myself this on many occasions. 

September 8, 2019

Sunday, September 8, 2019

Sunday, September 8, 2019 -- Mattie died 10  years ago today. 

Tonight's picture was taken in August of 2009. That night, we took Mattie to the shopping mall. Specifically to the Lego store. Mattie's child life specialist, Linda, arranged for a special outing, in which Mattie would be in the store alone (after store hours) and have the opportunity to construct whatever he wanted with Lego master builders. It was an incredible experience and Mattie felt like a celebrity. We all knew that Mattie's condition was terminal, and therefore in a way this was a special wish Linda tried to grant. Out of all the Lego kits in the store, Mattie told the master builders that he wanted to build something off the top of his head. He wanted to make a NYC taxi. I imagine the taxi was on his mind, after his two trips to NYC for experimental treatment. In this photo, Mattie was holding the final project they created together. This taxi remains in our living room today!


Quote of the day: There is no grief, like the grief that does not speak. ~ Henry Wadsworth Longfellow


Today marks the 10th anniversary of Mattie's death. Just like on September 8, 2009, today is a beautiful sunny day in Washington, DC. The sun maybe out, but there is no joy or happiness in our hearts. After a decade of living without Mattie, we realize our lives will never be normal. There is NO 'NEW NORMAL.' A phrase commonly shared with families during diagnosis. However, to me it is a platitude that serves no purpose at any point in the cancer journey. You try living with the memories of your child going through treatment, a horrific death, and intense grief, and then we will talk about NEW NORMAL. I wouldn't wish our life upon anyone.





I know that it is frequently thought that time heals all wounds. Again, I am living proof that this is NOT the case. For Peter and me, we can't remember life before Mattie was diagnosed with osteosarcoma. In a way we also died in 2009, and though we may look like we function and appear to have re-integrated back into the daily routine, we actually haven't. If you dig deeper into our lives and scratch the surface, you will see that the psychosocial impact of childhood cancer REMAINS! In fact the aftermath of childhood cancer does not end when the treatment does. This is the big myth, but one Mattie Miracle is determined to correct.




Below, I share a letter that I wrote for Mattie's celebration of life service in October of 2009. It is a story of Mattie's birth, something that he loved hearing about, especially in uncertain and stressful times. I shared that story with him yet again on August 5, 2009, the day we learned that his cancer metastasized to his stomach, lungs, and liver.













Mattie was an incredible force in our lives! We work daily to keep his memory alive through the Mattie Miracle Cancer Foundation. In ten years, the Foundation has assisted over 25,000 children with cancer, and each day of service we never forget Mattie's psychosocial battle, nor the journey we continue to face as the silent victims of his medical trauma.



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My Dearest Mattie,

It is said that parents love their children right from the moment they are born. However, in your case, our love for you began as soon as we learned we were going to have a baby. In fact, right after seeing your sonogram picture, we felt like proud parents. We posted those pictures everywhere. We shared these pictures with practically anyone who would listen or showed interest, and each September when I taught prenatal development in my undergraduate human development class, out would come your sonogram pictures to illustrate my points. Even my students got a sneak peek at our baby, a baby who would have a profound and meaningful impact on not just his parents but also every community he touched. Daddy and I did not only love you, we FELL IN LOVE with you, and that love grew stronger with each day. Your energy, spirit, love for life, intellectual challenges, sense of humor, and loyalty to your friends and family were only some of the wonderful traits we always admired in you.

This video is a tribute to you and your wonderful, yet short life. It seems fitting as we celebrate you, and say good-bye to your physical presence that I share the story about how you entered the world. The story of your birth had to be one of your most favorite stories to hear, and I found during times when you were reflective, overly tired, or in need of hugs and tenderness, the request for this story arose. In fact, I remember on August 5th, the day we found out that your cancer metastasized everywhere, you and I were sitting in the hospital’s rose garden, and you requested the story. It was almost as if you knew this was going to be a bad day, so in essence we might as well brace ourselves, cuddle, and prepare for this together.

Here is the story I always shared with you. A story Daddy and I will never forget. On April 2, 2002, at 11pm, I decided to head to bed. I was anxiously awaiting your birth, and as your due date approached, I couldn’t help but wonder, when will “the baby” be coming? I was restless and uncomfortable, so while in bed, I began to watch television. I was having trouble concentrating on what I was hearing, mainly because you were kicking up a storm inside of me. At which point, the kicking became so intense, that I literally felt something pop. You clearly wanted OUT, and you were going to kick your way into the world on your terms. Naturally after feeling this pop, I looked down at my tummy, and when I jumped out of bed, I realized my water had broken. This only happens to 25% of moms, and in retrospect, I should have guessed that this was just the beginning of how different our lives were going to be together. I immediately called the doctor and told her what happened. She asked if I was in pain, which I wasn’t, and she instead told me to get a good night’s rest, because my baby was going to be born the following day. Well I can assure you after hearing this news, sleeping was the farthest thing from our minds.

So on April 3, 2002, Daddy and I headed to the hospital and we were admitted to the maternity unit at 8am. The labor process began, but it was a VERY slow process for me, and at times as you moved inside my tummy, Daddy could see your head pushing against my backbone. Needless to say Dr. Mike, the anesthesiologist, became my favorite doctor that day. The hours kept rolling by, and still there was NO sign of our baby! I was getting weaker, I developed an 102 fever, and by 11pm I really had no energy to give birth to you. In addition, to how I was feeling, your oxygen supply was getting cut off, and your chin was positioned in such a way that would make the birthing process almost impossible. So it was at that point that the doctor recommended an emergency c-section. Things began to happen very quickly around me. I was signing paperwork for surgery and Daddy was being transformed by putting on a bunny suit so he could enter the operating room.

I had never been in an operating room before in my life, but I really wasn’t concerned at that point about myself. I was solely focused upon you. I was wide-awake for the c-section, but unable to see the process, which as you know, was probably a good thing. Daddy on the other hand found the whole thing very exciting, and began to videotape and take pictures of the surgery. Literally a team of people surrounded me and I will never forget Dr. Mike, the anesthesiologist who sat by my side, and talked with me and did whatever he could to keep me pain free.

When you have a c-section, your arms are strapped to the operating table, so I couldn’t move, and directly over my head was what appeared to be a rope with a clamp that was holding open my abdominal cavity. Normally by this point I would have passed out, but when it came to you, I developed strength I never knew I had. As the doctor began cutting, and finally got to you, the first thing she said was, “what is this?” That is NOT what you typically hope to hear when having a c-section. The doctor let me know that I had a grapefruit sized tumor on my bladder, and my immediate thought was, did this affect the baby? The next thing I knew, I felt her tugging, and I heard the loudest cry ever. Now here is the part of the story that I know was always your FAVORITE! I would always try to replicate the sound I heard coming from you that day, a sound that will always remain in a parent’s ear. It was a very large WAAHHH! WAAHHH! At which point the doctor told us two things: first, that you were one of the most beautiful babies she had ever seen, and second, that you had quite a set of lungs on you! I concurred with both statements.

The doctor then brought you over to me, and she felt that I needed to be the first person to touch you. So despite my arms strapped to the table, my right hand miraculously reached out and grabbed your tiny, soft, and cute foot. It was a moment I will always cherish, a moment in which I will never forget, and a moment I am so happy you too enjoyed hearing about. Each time I retold the story I felt as if it further bonded us together, and I always enjoyed hearing your comments, thoughts, and reactions to your story.

Seeing you made Daddy very happy! Though he was worried about me, since after the c-section, I had to have bladder surgery to remove the tumor, we both agreed that Daddy should stay with you and accompany you to the nursery. It is there that Daddy got to see you cleaned up, he learned that you weighed 6 pounds and 13 ounces, and that you had high Apgar scores of 8 and 9. Within an instant, Daddy became one of your fiercest protectors, and he cared for you for five days straight while we were in the hospital together. In fact, Daddy is the first person who changed your diaper, and through those were five very challenging days in the hospital, they were days that helped us form our strong family ties. Ties that were imperative and that we relied on for seven years of your life!

Your presence is so greatly missed. Nothing seems the same, is the same, looks, feels, or tastes the same without you in our lives. May you always know that Mommy and Daddy love you, cherish you, and that feeling will remain with us forever and always. Good-bye my Mooshi Moo angel and goodbye Daddy’s best buddy. With love from Una Moon and Daddy!