This is a story of a young boy who lost his life to a 14 month battle with childhood cancer, and the subsequent grief that his mom lives with since his death
A Remembrance Video of Mattie
Thank you for keeping Mattie's memory alive!
Dear Mattie Blog Readers,
It means a great deal to me that you take the time to write and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful and help support me through very challenging times. I am 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 have stopped writing on September 9, 2010. However, like my journey with grief there is so much that 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 me, and most importantly thank you for keeping Mattie's memory alive.
As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki
Tuesday, November 3, 2020 -- Mattie died 579 weeks ago today.
Tonight's picture was taken on Halloween of 2008.....Mattie's last Halloween. He was home recovering from his first limb salvaging surgery. However, that year, Mattie celebrated Halloween twice. He went trick or treating at the hospital (pictured here) and then later with his friend Zachary. Mattie was very strategic about picking out his costume. He was allowed to go to the outpatient clinic and be the first child to pick out a costume. I will always be grateful to Mattie's art therapists and child life specialist. They knew that Mattie was very self conscious about his bandaged arm. Mattie was also concerned about being around other children who would potentially knock him over for hit his arm. So having private access to the costume room was brilliant. Mattie carefully examined each costume and then picked the mummy costume. He felt that it would cover his bald head and his bandaged arm. Making it seem like he was just a kid and NOT a kid with cancer.
Quote of the day: Today's coronavirus update from Johns Hopkins.
number of people diagnosed with the virus: 9,365,360
number of people who died from the virus: 232,484
Given the role I serve with Mattie's Foundation, I try to be apolitical. I keep my ideas to myself, because childhood cancer is non-partisan, and we work with people on both sides of the aisle.
Tuesday is my grocery shopping day. Yes I have a schedule! I am sure that surprises no one who knows me. In any case, I went grocery shopping and two things were very evident! One the shelves were empty like during a snowstorm or crisis and two, there was a big sign on the grocery store door saying they were closing today at 10pm. Which is unheard of for this store! Why? Because of the election. What kind of world do we live in that we have to worry about our personal safety, boarding up stores and businesses, and residents in cities having to worry about stock piling of food and paper products? In fact, our neighbor the George Washington University sent out an email this week saying.......students and faculty should prepare for potential protests by having food and other necessities stored in their dorm rooms or homes.
In fact, I came across this article entitled, People are stocking up on money, fuel and meals to prep for potential Election Day unrest — ‘It’s not a pure catastrophe. It’s an election.’ Click on the link if you want to read it for yourself. For days, maybe weeks, this level of fear, uncertainty, and anxiety have been all around me. I hear it on TV, radio, and from my neighbors. I think walking into the grocery store today actually jolted me into reality about the dangers that could potentially be heading our way in Washington, DC. Needless to say, on top of living with lock downs from Coronavirus, we have to worry about potential violence as well. All of this has great mental health consequences, because wherever we are, we can't find peace.
Tonight's picture was taken on Halloween of 2007. Mattie was five and half years old and this was Mattie's first year not in a sweat suit type costume. In fact, Mattie said he wanted to be an Air Force Pilot for Halloween. So it was the first year, we went to the costume store together, looking high and low for a costume. The costume you see here, was a Naval pilot uniform. So when I got home, I contacted my friend who is a retired Lt. Colonel in the Air Force. She and her colleagues sent us many Air Force patches, which I hot glued onto the costume. Mattie was thrilled!
In kindergarten, Mattie's school had a costume parade. He enjoyed the whole experience, as did I! I am so glad I went to see the parade, as I have learned you sometimes don't get second chances.
Quote of the day: Today's coronavirus update from Johns Hopkins.
number of people diagnosed with the virus: 9,270,711
The webinar focused on the role of bibliotherapy to support children who are dying. When dealing with personal issues such as anxiety and depression or coping with grief, sometimes it can be difficult to make sense of what is happening in your mind and body, especially if you don’t have any other experience to compare it to. Bibliotherapy aims to bridge this gap by using literature to help you improve your life by providing information, support, and guidance in the form of reading activities via books and stories.
The presenters told us that they wrote their own children's book called the Gift of Gerbert's Feathers. Why did they write such a book? Because after extensive research in the children's literature world, they only found 5 books in total that were geared to a child who is dying. The majority of books on grief and loss for children focus on the loss of grandparents or a pet.
The notion of a child dying is hard to grapple with. In fact, though families need great support during this time, this is typically when the treatment team begins to distance themselves from you. It becomes near impossible to accept that your child is dying, much less have a conversation with your child about the process. This is something that I still reflect upon with Mattie. He died, and I don't know his wishes. I have no idea how he wanted to be remembered. Mattie was 7! I don't know how a parent has such a conversation with a 7 year old, but the webinar did introduce me to some wonderful books for my toolkit. I share them below in case you are interested.
A video introduction with activities, to The Gift of Gerbert's Feathers:
Children's Books on Loss....................................
The Heart in the Bottle: There is a wonder and magic to childhood. We don’t realize it at the time, of course . . . yet the adults in our lives do. They encourage us to see things in the stars, to find joy in colors and laughter as we play. But what happens when that special someone who encourages such wonder and magic is no longer around? We can hide, we can place our heart in a bottle and grow up . . . or we can find another special someone who understands the magic. And we can encourage them to see things in the stars, find joy among colors and laughter as they play.
The Invisible String: The perfect tool for coping with all kinds of separation anxiety, loss, and grief. In this relatable and reassuring contemporary classic, a mother tells her two children that they're all connected by an invisible string. "That's impossible!" the children insist, but still they want to know more: "What kind of string?" The answer is the simple truth that binds us all: An Invisible String made of love. Even though you can't see it with your eyes, you can feel it deep in your heart, and know that you are always connected to the ones you love. Does everybody have an Invisible String? How far does it reach? Does it ever go away? This heartwarming picture book for all ages explores questions about the intangible yet unbreakable connections between us, and opens up deeper conversations about love.
Nana Upstairs & Nana Downstairs: Tommy is four years old, and he loves visiting the home of his grandmother, Nana Downstairs, and his great-grandmother, Nana Upstairs. But one day Tommy's mother tells him Nana Upstairs won't be there anymore, and Tommy must struggle with saying good-bye to someone he loves.
Dream Tree: Patti Caterpillar resolves to tell her caterpillar friends what it is like to be a beautiful butterfly when she becomes one herself.
Lifetimes: Lifetimes is a moving book for children of all ages, even parents too. It lets us explain life and death in a sensitive, caring, beautiful way. Lifetimes tells us about beginnings. And about endings. And about living in between. With large, wonderful illustrations, it tells about plants. About animals. About people. It tells that dying is as much a part of living as being born. It helps us to remember. It helps us to understand.
Water Bugs & Dragonflies: How can we answer the many questions young children have about death? Doris Stickney and her minister husband were looking for a meaningful way to explain to neighborhood children the death of a five-year-old friend -- an explanation that would satisfy not only the children but adult minds as well. While they were preparing for the child's memorial service, the fable of the water bug that changed into a dragonfly came to mind.
Tonight's picture was taken on Halloween of 2006. Mattie was four and a half years old and was headed to Zachary's (a preschool buddy) house to go trick or treating. Ironically, Mattie and I made this calico cat costume together in 2005. However, because he was hospitalized for sepsis on Halloween, he never wore his costume. Fortunately, it was made out of sweat suit material, and by 2006, the costume fit Mattie perfectly.
Quote of the day: Tonight's coronavirus update from Johns Hopkins.
number of people diagnosed with the virus: 9,189,715
number of people who died from the virus: 230,870
I have gotten into a routine now. The first thing I do when I get up in the morning is make breakfast and take it to my computer. Where I spend an hour or two doing continuing education. I find if I don't focus on it first thing in the morning, I don't have the time or energy to do it later in the day. Yesterday I finished a trauma course and today I started a 12 hour course entitled, Telehealth for Mental Health Professionals: 2-Day Distance Therapy Training.
One of the first slides the instructor showed us was this! Can you get over what happens in a minute on the internet? It is hard to believe that there are 973,000 Facebook logins, or how about 187 million emails are sent, or $862,823 spent on purchases on line in ONLY ONE MINUTE!!!
Given the role that I serve in my profession, it is important that I understand trends and know how therapy is being applied across the country. Which is why I signed up for a telehealth course! This issue has come to a head during the Pandemic. Once telehealth was just an abstract concept and providers could choose to do it or not. Now the choice has been made for them, especially if they want an income.
The instructor shared with us some information that helped us see the trend or increase in internet usage in the USA.
Whether we are talking socioeconomics or demographics, the trend is upward in internet usage.
Imagine if 2020 was on this list! It would be 100%!
Again, the percentage would be far higher if we examined 2020!
Our instructor showed us this 4 minute video clip on what the internet is doing to our brains! I found it fascinating and I unfortunately do see the profound impact of such distractions in myself and others. See it for yourself.......................
Our adventure today was to Great Falls Park. As soon as we started walking, we came across a mama deer and her baby! A favorite sighting of Mattie's! I can imagine his reaction if he saw this and frankly I can still hear his commentary in my head.
The mom!
The baby!
They deemed us safe and continued foraging through the grasses!
Tonight's picture was taken in October of 2005. That year, Mattie wanted to be a calico cat for Halloween. Not unlike his own cat, Patches. We bought a black sweat suit (Mattie's ideal material) and then went to the craft store to buy felt. We cut the patches and hot glued them to the material. I made a cat tail out of black stockings and added furry ears to a headband of mine. Mattie loved this costume. He was eager to wear it to preschool and trick or treating. Except that year, Mattie landed up in the hospital from an ear infection that turned to sepsis. This was thanks to his pediatrician not taking me seriously when I brought Mattie to her office just days before saying that I suspected he had an ear infection. She thought I was being over protective and a hypochondriac. Turns out, I was right, and when she saw us admitted to the hospital, she apologized for her mistake! Any case, that year, Mattie spent Halloween in the hospital. It was a hospital that did not have a peds unit or child life specialists. So literally the nurses did not know what to do with Mattie or me for that matter. In a way, it was my first real experience having to advocate for Mattie in a hospital setting. Skills that were definitely needed three years later when Mattie was diagnosed with cancer.
Quote of the day: Today's coronavirus update from Johns Hopkins.
number of people diagnosed with the virus: 9,104,336
number of people who died from the virus: 230,281
Every two years, in order to renew my professional counseling license, I need to complete 40 hours of continuing education. Typically I can get these hours by attending conferences, but clearly that wasn't happening this year. Therefore, I have been glued to on-line trainings. Today, I finally completed a 12.5 hour training, entitled, Certified Clinical Trauma Professional (CCTP) Intensive Training Course.
I have to admit, for me learning on-line doesn't work as well as face to face. Nonetheless, it was an intense course that provided students with a ton of information, research, insights, and interventions. They instructors ended the training with Viktor Frankl's quote...... Between stimulus and response there is a space. In that space is our power to choose our response. In our response lies our growth and freedom.
This is an illustration of Frankl's beautiful and meaningful words. Honestly, this was a fantastic way to end a very comprehensive training. Because at the end of the day, this quote or illustration is empowering to all of us.
Whether we are stressed out, feeling depressed or traumatized..... this reminds us that WE ARE IN CONTROL. We can't control stressors, what happens to us, or when it happens to us. But we can choose how we wish to respond to these stressors. Our decision on how we respond needs to be thoughtful, because if we are reactive rather than intentional, what happens is we aren't true to ourselves. We lose integrity and our guiding principles.
One of the instructors today, flashed this slide up on the screen. It is his illustration of trauma and how it impacts how we act, behave, and feel. This illustration practically jumped off the page at me, because I feel it described me at various stages after Mattie's death. As the slide illustrates, there are many triggers in our lives. Mostly they come in through one of our senses. Typically when stressed we are not calm, and therefore not thinking clearly. So we become reactionary. In this mode, we can become impatient, nasty at times, and even resentful of our situation and those around us. However, stepping back, learning relaxation techniques that enable us to switch from reactionary to intentional, enables us to THINK and therefore respond to stressors in ways that are in line with our vision about how we want to life our lives.
After Mattie died, things would set me off and I would be very reactive to friends. Historically this wasn't my typical style in relating to people. It was out of character for me. Which was also upsetting to me, because after lashing out at friends, some of them would lash back out at me. Needless to say, I found their reactions hurtful and it was a vicious cycle... of me being reactionary to friends, they were reactionary back at me, and really it propagated a vicious cycle of hurt. Now that I see this model, I realize that my reactionary style was how I was coping with trauma. Seems to me this is the number one piece of educational information EVERY person (not just professionals) should know when trying to support a trauma survivor or bereaved individual. We have pent up thoughts, feelings, and emotions and that energy is volatile. So naturally it makes sense that it would be expressed in inappropriate ways. That doesn't mean we give up on those who are traumatized or bereaved (though I admit we can be wearing on friends because the healing process takes time and support), rather it means we need to find ways to help us relax and breathe, and take back control so we can think and make decisions that are true to how we wish to live our lives.
Tonight's picture was taken on Halloween of 2004. Mattie was two and a half years old and was definitely into the spirit of Halloween. As you can see, Mattie's costume was really a sweat suit. Which made it the perfect material and outfit for Mattie. I thought Mattie made the cutest Pooh! Winnie the Pooh was a favorite to both of us, and together we must have read every Pooh story out there. While driving through Georgetown today, we passed an elementary school which was having a Halloween costume parade. It instantaneously took me back in time to when Mattie's kindergarten class had a Halloween parade. I thought we would have MANY MORE parades together.
Quote of the day: Today's coronavirus update from Johns Hopkins.
number of people diagnosed with the virus: 9,015,262
number of people who died from the virus: 229,293
This is Adina, our child life specialist at Children's Hospital at Sinai in Baltimore, MD. Each year, Adina takes it upon herself to make up trick or treat goodie bags for the children and their families in all the pediatric units. Where does the candy come from? It comes from Mattie Miracle! We are grateful for Adina's initiative and passion to meet the psychosocial needs of families, and for her idea to package up our candy in this creative way.
This is all Adina's doing! However, having been stuck in a hospital for all major holidays, I know how a bag of candy can feel like winning the lottery.
Which is why our Post Halloween Candy Drive is so important. It provides our hospitals, that we support, with a year's worth of candy!
I love Adina's cowgirl costume! She is a ray of sunshine and I have no doubt she brightened up the lives of many families today.
Items are piling up in Mattie's bedroom from the Candy and Snack Drive. Please check out our Amazon Wish List, and help support our candy drive! It is easy! All items should be shipping to the "Ali Goldwater Gift Registry" address! THANK YOU!
Tonight's picture was taken in October of 2003. Mattie was one and a half years old and was beginning to understand the concept of Halloween. At least that people dressed up for the occasion, however, costumes and Mattie did not go well together. Mattie did not like being constrained, he did not like things on his head, and he disliked anything that made him feel itchy. One day, I took Mattie to Target (Mattie had two favorite stores we could take him to..... Home Depot/Lowes or Target) and put him in the shopping cart. We wheeled around together looking through the store. Then I spotted these cute pumpkin sweat suits. The perfect material for Mattie, and I am so glad I captured that moment in time.
Quote of the day: Today's coronavirus update from Johns Hopkins.
number of people diagnosed with the virus: 8,922,632
number of people who died from the virus: 228,370
My lifetime friend, Karen, sent me this text message today! It featured this charming photo of penguins and the posting on social media that was attached to the photos. I am not surprised Karen sent this to me, as she knows I love animals, but I am also intrigued by grief and how each of us and animals express it.
Just like me, Karen, also knows that not everything you read about on social media is legitimate. So I told her I would investigate the story behind it. These are such splendid photos, that one could think at first that they were contrived or staged. However, it turns out from just doing a simple Google search on these photos, that many different organizations published the story about the photographer and his incredible photos.
So what is this a photograph of? These two Fairy Penguins (type of penguin, smaller in stature) were poised upon a rock overlooking the Melbourne skyline. The were standing there for hours, flipper in flipper, watching the sparkling lights of the skyline and ocean. A volunteer approached the photographer and told him that the white one was an elderly lady who had lost her partner and apparently so did the younger male to the left. Photographer Tobias Baumgaertner snapped the touching moment in St Kilda, a suburb of Melbourne, Australia, in 2019, but only recently shared the images on Instagram.
The photographer had this to say about the penguins.....
"The way that these two lovebirds were caring for one another stood out from the entire colony. While all the other penguins were sleeping or running around, those two seemed to just stand there and enjoy every second they had together, holding each other in their flippers and talking about penguin stuff.
Pain has brought them together. I guess sometimes you find love when you least expect it. It's a privilege to truly love someone, paradisiacal when they love you back."
One may read the photographer's commentary and say..... how sweet, or HOW DO YOU REALLY KNOW WHAT IS GOING ON HERE? The thing is that scientists have and continue to study different species and how these animals respond to grief. The elephant for example is a remarkable creature and the herd will not leave a dying elephant until it is dead. The mourning process involves a lot of standing around (not unlike our human wakes), they use their trunks to inspect every part of the body, and elephants do not leave the side of their dead loved one for days.
I saw our cat Patches experience the loss of Mattie. After Mattie died, Patches slept on Mattie's bed and basically spent her days in his room. Something she never did before when Mattie was alive. I also observed our neighbor's dog, JJ, who came to our front door every day for months. Waiting to see his friend. JJ even slept with one of Mattie's sandals. Having these personal experiences enables me to believe the beauty and sentiment captured in these photos of these two penguins left behind. It is hard to be a survivor, knowing that the one you loved most in life is gone. How do you go on? As our penguin friends illustrate in such a meaningful way, you turn to nature and to others for comfort, re-connection to the world, and to be understood. A lesson that is too precious to forget and should guide us in our every day lives.
Tonight's picture was taken in October of 2002. This was Mattie's first Halloween. Of course he was only six months old, so he wasn't going trick or treating, or wearing a costume. However, even at that young age, Mattie loved pumpkins. Not sure if it was the color (which was a favorite of Mattie's), its size, shape, or texture. Nonetheless, Mattie LOVED everything pumpkin.
Quote of the day: Today's coronavirus update from Johns Hopkins.
number of people diagnosed with the virus: 8,837,688
number of people who died from the virus: 227,421
The polls in the District of Columbia opened yesterday. So today, we got up early and met neighbors at 7:45am. Together we all walked about a half of a mile to our polling center. Mornings are not my favorite time of the day, but I was fearing LONG lines and chaos. So when our neighbor suggested getting to the polling site before it opened up, we agreed.
We have many neighbors around us who have lived in our complex since the 1970s! Of course as we age, completing certain tasks and maneuvering around the city can become more challenging. Which is why neighbors wanted to come with us today. We could handle the directions, the logistics, and also manage any sort of safety concerns that could arise. Unfortunately in the District, safety has become an alarming issue on all of our minds. Therefore, there is more security when traveling together.
Last night, I literally pulled out a sample ballot and started doing research on each of the positions and the proposed proposition on the selling and distribution of marijuana. Needless to say, I literally looked up each local candidate running, read about them, their positions, and their platforms. Fortunately I did, because our neighbors had lots of questions this morning and I could easily pull up candidate webpages, because I had them open on my phone. I was a walking fountain of knowledge.
Needless to say, by the time we got to our polling center, we were the third in line. There were NO LINE (even when we left), everything was very organized, the polling folks were lovely and friendly, and it had to be the smoothest voting process I have ever seen. I even got to see my ballot scanned and counted!
Tuesday, October 27, 2020 -- Mattie died 578 weeks ago today.
Tonight's picture was taken in October of 2008. Mattie was visiting his friend Campbell and as you can see they were enjoying Halloween cookies together. At that point in time, it was before Mattie had any of his limb salvaging surgeries. Meaning that from an emotional standpoint, Mattie was doing well. Or as well as one could expect being diagnosed with cancer and on treatment. During that time period, Mattie was still able to visit with friends and enjoy this social experience. Which is why I am happy such photos were captured. Because as Mattie's treatment continued to unfold, he became more traumatized, more guarded, and preferred isolation.
Quote of the day: Today's coronavirus update from Johns Hopkins.
number of people diagnosed with the virus: 8,759,939
number of people who died from the virus: 226,436
I spent a part of today, continuing the trauma certification course I signed up for to obtain continuing education units for my professional license. This course if 12.5 hours long, and I have about two hours left. I would say that it has definitely opened up my mind to the physiological component of trauma and why trauma work must involve learning to regulate one's body. I think many of us who have experienced trauma believe that we are still traumatized. But the course has shown me that I have really integrated the trauma into my life's narrative, but that doesn't mean I am actively traumatized now. I am still wrapping my head around the biological nature of trauma and the evidence based methods to support survivors of trauma. Within today's discussion was a non-evidence based (or pseudoscience method if you will) technique presented to us called, Thought Field Therapy (TFT). Like this photo indicates, it involves tapping the body in sequences.
Thought Field Therapy is an energy-based form of psychotherapy designed to reduce symptoms of psychological distress by manipulating how energy flows in the body. TFT is based on the premise that bodies consist of energy fields and that imbalances in this system cause physical and emotional issues. It is thought imbalances can be corrected by finger tapping specific energy points in certain sequences in order to restore an individual's health and wellness. Some claim TFT produces rapid, lasting results in the treatment of various psychological conditions, including phobias, addictions, anxiety, trauma, and depression.
Thought Field Therapy was developed by American psychologist Roger Callahan. Combining modern psychotherapy and Eastern tradition, it draws heavily on ancient Chinese medical practices including acupressure and acupuncture, which emphasize the presence of an internal energy system. These healing methods are based on the idea that energy flows along a network of pathways in the body and that blockages in the system result in physical illness. Each pathway, also called a "meridian," involves its own set of internal organs and ends at a specific point on the skin's surface. Stimulating meridian end points by applying pressure (acupressure) or inserting needles (acupuncture) is believed to remove blockages, restoring a normal flow of energy, and by extension, physical health. In TFT, Callahan adapts and extends these Eastern principles to the treatment of psychological issues.
Needless to say, the course's trainer (who is deemed an expert in trauma therapy), walked us through Callahan's model today. He literally had us focus on something that is distressful (and score it on a scale of 1-10), then we began rhythmically tapping parts of our body (near eyebrow, cheekbone, under arm, and collarbone area). After that tapping, came tapping on the "gamut point." Which is between the ring finger and pinky. While tapping there, simultaneously we had to look up, down, to the left, right, eye going clockwise, counterclockwise, we had to hum, count out loud and hum again. When all this was over, we were asked to rate our distress level on the same issue we presented with. The majority of the class had a steep decline in their distress level.
Where do I stand on this? The few studies that have been published to demonstrate the efficacy of TFT, including some by Callahan, have been criticized for methodological flaws, such as the lack of control groups, standardized assessment tools, and unsatisfactory reporting of data. Additionally, no credible research to date supports the underlying mechanism of TFT, namely the existence of human energy fields that influence psychological health and can be manipulated by finger tapping. There is also no empirical support for the diagnostic methods used in TFT. That said, the trainer swears by this technique for himself and uses it with his clients. Though he explains to clients that this isn't evidence based, but it has been antidotally reported to be helpful for clients with anxiety and when working with trauma.
Clearly, if something so simple and non-invasive works for some people, then I think that is great. Why not use it. But for myself, I was becoming irritated with the whole notion of tapping, and I was simply a student in a virtual classroom. I can't imagine coming in for therapy, managing a trauma, and being presented with this tapping technique. What I am finding with this entire trauma course, is I have to remain open minded, because I use my experience with Mattie as the benchmark against all content presented to me. Childhood cancer is a complex example to bring into this class, because it isn't made up of a single event. It is rather an on-going trauma, that frankly continued for the first several years after Mattie died. The instructor says that people can't claim to still be traumatized if they are able to sleep. That maybe true, but then again, many of us who have survived trauma have sleep issues and resort to talking to our doctors about sleep aids to cope. So again, I am not sure some of these cute quips of guidance he provides his students are truly on target or meaningful.
Any case, I found this video on YouTube about what TFT looks like. You can see the tapping for yourself and come to your own conclusions.
Tonight's picture was taken on October 15, 2008. Mattie was three months into treatment. In September of that year, Mattie met Brandon. Brandon is the fellow you see sitting next to Mattie. There was about a 10 year age difference between these two friends, yet that did not matter. They were the "best" of friends and even when Brandon's cancer went into remission, he came back to the hospital quite often to visit with Mattie. Mind you Brandon lived about 90 minutes away from the hospital. So that was a big commitment. Mattie loved to build things and that day Mattie and Brandon worked together on a popsicle stick structure. I would have to say that I learned a lot about friendship from observing these two amazing fellows.
Quote of the day: Today's coronavirus update from Johns Hopkins.
number of people diagnosed with the virus: 8,679,483
number of people who died from the virus: 225,495
This morning Peter and I had a conference call with one of the early investigator researchers we are funding through Mattie Miracle. We granted this researcher $20,000 and with these funds she generated data that is so rich and significant, that she is now applying for a Research Project Grant (R01). R01 is the original and historically oldest grant mechanism used by National Institutes of Health (NIH). As this researcher said this morning, she would never have qualified for this multi-site random controlled psychosocial study grant (through NIH) without the data generated through our grants. Which is very exciting news. We will feature an update from this researcher in our January newsletter. However, of the 12 studies we have funded so far, two of them helped early investigator researchers qualify for NIH R01 grants. Amazing, no?
Mattie Miracle grants are advancing the evidence based psychosocial research, they are helping to implement our Psychosocial Standards of Care, and most importantly they are getting us one step closer to optimizing supportive care to children with cancer and their families.
Our Foundation's October e-newsletter went out today. This newsletter is distributed to 2,000 people. If you aren't receiving our newsletters, and want to, please send us a note to sign up: admin@mattiemiracle.com
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Tonight's picture was taken on October 13, 2008. Mattie was admitted to the hospital for treatment that day. I can tell because Mattie was wearing clothes. Mattie only wore clothes when he was coming from home. Otherwise, when hospitalized Mattie chose to wear pajamas. In any case, the playroom was closed that day because a major donation was given to the hospital. Mattie's child life specialist, Linda, was trying to sort through everything and store the items. She invited Mattie into the room to help. Linda understood that Mattie needed to stay busy and have responsibility. They were good pals and Linda made the impossible seem much more bearable.
Quote of the day: Today's coronavirus update from Johns Hopkins.
number of people diagnosed with the virus: 8,626,537
number of people who died from the virus: 225,197
The beauty of having a dog, is a bit like the postal service.... you need to walk in rain, sleet, snow, and sun. Unlike yesterday, today was damp, rainy, and bordering on raw. The highlight of our days is taking Sunny for his longer afternoon walk. Mind you he walks FOUR times a day. But his afternoon walk ranges from 2 to 3 miles. As you can see, the foliage is changing and reminds us that winter is coming.
When we arrived at Great Falls Park, we were greeted by this grazing deer. This deer could have cared less that we were watching her. She kept on grazing and did not move!
Sunny loves adventure! Mattie would have loved him. Sunny has no problem walking on trails, climbing rocks, and exploring. Sunny was on top of the world today!
The beauty of Great Falls, even in the rain.
Despite the cold and rain, there were plenty of others walking the trails. For so many of us, our parks are a God sent especially during COVID.
With heavy hearts, we said goodbye to our precious Mattie when he died on September 8, 2009 at 7:15am. He fought death for five hours, and he finally fell into a deep sleep. My hunch is he did not want to say good-bye to us, and it took massive amounts of drugs to ease his suffering.
Mattie in Summary
Diagnosis timetable: July 23, 2008 - tumor in the right humerus; August 1, 2008 - tumor in the left humerus; August 6, 2008 - tumors in the right femur and left radius. On August 6, Mattie was officially diagnosed with Multifocal Synchronous Osteosarcoma. Tumor Resection and Limb salvage surgeries (repiphysis): on October 20, 2008 and November 12, 2008. Percentage of Necrosis: 60% in right humerus; 80% in left humerus; 100% in left radius; 2% in right femur. Chemo began on August 8, 2008: High Dose Methotrexate, Cisplatin, Doxorubicin; Ifosfamide, and Etoposide were added to the treatment protocol on December 1, 2008; MTP-PE was added to the treatment protocol on January 12, 2009. Chest CT scans post surgery:December 5, 2008 – four 3mm lung lesions; January 8, 2009 – CT scans reveal no change in the lung lesions; March 19, 2009 - CT scans reveal slight changes in two of the lesions. With potential increases in size of up to 1-2 mm per lesion. On June 5, 2009, CT scans at 1.5mm cuts (so very refined cuts) revealed that Mattie's lung lesions doubled in size since January. The four lesions are now 8-9mm in size, indicating that Chemotherapy is not working. Median Sternotomy: June 15th, 2009, removed 9 lesions, four in the left lung and five in the right lung. We do know that two of the lesions had calcified indicating bone material was present. This confirms that the bone cancer has metastasized to the lungs and that Mattie's chemotherapy was not effective at fighting the cancer in his lungs. PET Scan: There appears to be a possible variant (i.e something abnormal) in the lower left femur, but as of now it is too small to determine what it really is. Normally, one would biopsy this, but the location is difficult as it involves the growth plate, and with lung surgery imminent, and Mattie just being off of chemo, the advice we're getting is to wait and watch, and to see what it looks like during the next scan. Echocardiogram: Mattie has a reduced LVEF (Left Ventricle Ejection Fraction), which in layman terms means that his heart is not pumping with its normal level of pressure. Although it is not at a dangerous level, the doctors do want to monitor it with a follow-up echo in a few months to determine if this is a temporary impairment or if long term damage has been done.
Washington Post Article on my Work
An article was published on July 24, 2010, in the Washington Post's Metro section.
Many thanks to Post Reporter Rick Rojas, for covering a great story! To read the article on the Post's website, click HERE
Washington Post Article on Reach the Day and Mattie's Blog
In the July 2nd, 2009 edition of the Washington Post, our story and our blog were briefly mentioned in an article regarding CureSearch's Reach The Day event, held June 22-23, 2009 on Capitol Hill.
Click HERE for a link to read the article on the Washington Post's web site.
Mattie's Channel 9 Story
To watch the YouTube version of Mattie's video, click Mattie's News Story
or
to Read the actual story on the 9NewsNow site, click HERE
Mattie's Situation
Mattie Had Bone Cancer Mattie had a bone cancer called Osteosarcoma. The diagnosis was: multi-focal, synchronous osteosarcoma. He had four tumors in his extremities: the upper portions of the right and left Humerus, which is the bone that connects the shoulder to the two lower arm bones (the radius and ulna), the lower (distal) left radius (right near the wrist) and the lower (distal) right femur (just above the knee joint). Although commonly found in adults, this type of bone cancer is very, very rare when found in six year old children.
Mattie started chemotherapy on Thursday, August 7, 2008, consisting of several five week cycles containing five types of drugs (Doxorubicin, Cisplatin, high dose Methotrexate, Ifosfamide and Etopicide). After the second cycle Mattie underwent a surgery (Oct. 20) to remove the tumor in his right humerus, and then a second surgery (Nov. 12) to remove the other three tumors. Mattie had three prostheses (both arms and the leg) that use the Repiphysis technology. We also tried an experimental drug called L-MTP-PE in the effort to give Mattie the best fighting chance of survival. It's a shame it wasn't enough.
All of our Family and Friends have done so many wonderful and amazing things for us to help Mattie. For that we are forever grateful. We want you all to know that we cannot thank you enough for these things and your selfless acts of kindness. We cannot adequately express how much your love, caring and devoted attention to Mattie meant to us. God Bless each and every one of you.
We made a deal from the beginning with Mattie to never lie to him about his situation, and we talked him through each step of the way. Mattie knew he had "some bad bugs" in some of his bones, and he knew that the drugs he was given were to kill the bugs, and the surgeries were meant to remove the bugs from his body. Mattie even requested from Dr. Bob Henshaw (who performed the surgery) "to let me keep a bone" once the procedures were over. Mattie did get several pictures of the procedures which he always thought were really neat.
This kind of statement only furthered our immense respect and astonishment that we had for Mattie and his emotional intellect, intelligence, and maturity. It was amazing that a six year-old could so quickly rationalize and embrace a situation and keep such a strong and positive attitude going, when his parents were a pair of emotional and physical trainwrecks. The irony is that Mattie gave us our strength to go on at a time when we should have been giving him his strength to fight.
Mattie's life during the 13 months of fighting cancer was not a normal one, even though we did whatever was humanly possible to make it as normal as possible. Fortunately, we have good friends who helped us get to the right doctors and to the program at the Lombardi Center in what everyone says was record-breaking time, who embraced us and helped us with what was unquestionably the greatest challenge of our lives. Of course, without our family and good friends, life would be a whole lot tougher than it is right now, so for those of you who are reading this, all we can say is Thank You and We Love You. God Bless.
