Mattie Miracle 8th Annual Walk & Family Festival was an $88,000 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

Random Shots of Mattie, Family and Friends

October 22, 2017

Sunday, October 22, 2017

Sunday, October 22, 2017

Tonight's picture was taken during Halloween of 2004. Mattie was two and half years old, but this was his third Halloween. For Friday and Saturday's blogs, I posted Halloween photos of Mattie from 2002  the and 2003. However by 2004, Mattie understood the notion of Halloween and it was his first year trick or treating. But like the previous year, Mattie did not want to wear a costume, mostly because he did not want anything heavy or itchy against his skin. So again, we returned to Target and together we picked this cute Winnie the Pooh sweatsuit. It may not be a full fledged costume, but I think Mattie made the cutest Pooh!


Quote of the day: I'm so glad I live in a world where there are Octobers. ~ L.M. Montgomery


It has been a glorious weather weekend in Washington, DC. When DC has its typical Fall or Spring weather it is very special. Today was in the 70's, with not a cloud in the sky. We took Sunny to Roosevelt Island and he had a great time sniffing and checking every tree out!

The resident Great Blue Heron was in the water, and all of us walking stopped in our tracks to take in this sight! 
After a two mile walk on the Island, Sunny literally sat in the parking lot for a water break!
After a water break, you can see that Sunny was revived!
This is what I get periodically at home! If Sunny wants my attention, he lies on his back, paws up and with his tail wagging back and forth. This is his attempt to get my attention to come on over and rub his tummy! The funny thing is this usually elicits a response from me. 

Life with Sunny is not boring and he always gets Peter and I moving, walking, and observing the world around us. 

October 21, 2017

Saturday, October 21, 2017

Saturday, October 21, 2017

Tonight's picture was taken in October of 2003. Mattie was a year and a half old here. I am not sure he understood the concept of Halloween any better in 2003, than he did the previous year, but in 2003, Mattie got dressed up the occasion. Mattie did not like the whole notion of a costume. He hated things that were itchy against his skin, were heavy to wear, and the list went on. So together while shopping at Target, we found this adorable pumpkin sweatsuit. Mattie loved the texture of this material and was a happy camper wearing it! An adorable pumpkin, no?!


Quote of the day: A dog will teach you unconditional love. If you can have that in your life, things won’t be too bad. Robert Wagner 


It was a beautiful Fall day in Washington, DC. In the 70's, with glorious sun. We took Sunny to the National Mall, which is one of his favorite places to walk. He primarily loves going there because it is filled with trees and the trees are filled with squirrels. I am convinced that one of Sunny's former owners encouraged him to hunt, chase, and probably catch squirrels, mice, rats, and bunnies. Or perhaps Sunny chased these things because they were his food source. I am not sure which, but it is clear Sunny loves anything that moves. This photo says it all. I called Sunny's name while he was in pursuit of a squirrel. Like Mattie, he complied and I snapped a photo, but he was very eager to return to his activity. Which was exactly the same reaction Mattie gave me whenever I wanted to capture the moment with my camera. 

Though I can manage Sunny, I prefer Peter holding him when we go to the Mall. Only because it is one constant squirrel chase after the other. Sunny is a force when he runs and torques his body quickly to chase those squirrels. 
They are in hot pursuit! Sunny must have chased after at least 20 squirrels today. Some people laugh when seeing this, others encourage Sunny to catch the squirrel, and then there are others who are shocked. Wondering if we are really going to allow Sunny to attack a squirrel! I am NOT a squirrel fan, but that said.... NO we do not let Sunny capture the squirrels. He only chases them. Which is why you need a lot of strength to hold him back. 

Once Sunny chases a squirrel, it usually lands up climbing a tree. Which is frustrating for Sunny, because he really would love for us to let go of his leash so he can finish his herding task! Nonetheless, this photo is typical! It captures the resulting scene of Sunny chasing a squirrel up a tree. He stares at it in the tree, basically saying..... 'don't come down, because you won't be so lucky a second time!'

October 20, 2017

Friday, October 20, 2017

Friday, October 20, 2017

Tonight's picture was taken in October of 2002. Mattie was six months old and clearly did not understand the concept of Halloween yet. To commemorate Mattie's first Halloween, I sat him in our big white rocker and placed a pumpkin by his side. Notice that his hand went directly for the pumpkin and its stem!

Quote of the day: Some people find it counter intuitive that better care can result in lower costs, but that’s often the way it works in healthcare. ~ Dr. Marc Harrison


Sunny went for his grooming appointment today. WOW did he really need it. His fur was getting so woolly and no matter how much I brushed and sprayed him with his doggie deodorizing spray, he still smelled. Given the timing of Sunny's surgery, he couldn't be bathed for a period of time, so thankfully our good smelling Sunny is back! He now smells like warm vanilla cookies!!!

With each grooming, Sunny comes home with a themed bandanna! Sunny has quite a collection now, one for each holiday or season. 
This afternoon, Sunny and I went for a three mile walk. Along our journey I came across this wonderful oak tree which dropped many of its acorns. I collected a few in memory of Mattie. When Mattie was a preschooler, he loved collecting acorns.... only the ones with their hats/caps still on! Then Mattie would distribute acorns to friends. In fact, Mattie's occupational therapist must have had a basket full of Mattie acorns by the time he was finished with her. 


Peter found the article below and sent it to me. It is entitled, Intermountain cuts costs, improves care by integrating mental health into primary care. It is a short article, but packs a powerful punch. In a nutshell, primary healthcare settings are finding that IT'S NOT JUST ABOUT THE MEDICINE (Mattie Miracle's tagline)!!! In my opinion this news isn't earth shattering, because most of us quickly surmise this after experiencing an illness and interacting with our healthcare system! The immediate insight from patients is..... when we are not emotionally supported this further impacts our physical health. Mattie Miracle's tagline needs to become the mantra in all of healthcare, not just with childhood cancer.

The article highlights a team-based approach in a primary care setting that includes mental health services. What was found is this inclusion improved overall health of patients. More patients in team-based practices stick with their diabetes care protocols for example and have documented self-care plans. Among individuals receiving care through this practice's integrated program, emergency room visits declined 23%, hospital admissions declined 10%, and primary care doctor visits declined by 7%. I can't wait to one day have such psychosocial data for childhood cancer!!! Clearly medical practices and insurers are seeing the light!

Yet why in 2017, are we still inappropriately managing psychological issues? Why do we continue to separate out mental health care from physical care? Well according to a second article (https://www.statnews.com/2017/05/31/mental-health-medicine/), this may explain it:

  • Most emergency departments are ill-equipped to meet the needs of patients in the midst of mental health crises.
  • Most insurance plans view mental illness and addiction as exceptions to standard care, not part of it.
  • Despite an overall cultural shift towards compassion, our society still tends to view the mentally ill and those with addiction as morally broken rather than as ill.


Intermountain cuts costs, improves care by integrating mental health into primary care:

http://www.fiercehealthcare.com/practices/intermountain-cuts-costs-improves-care-by-integrating-mental-health-into-primary-care

October 19, 2017

Thursday, October 19, 2017

Thursday, October 19, 2017

Tonight's picture was taken in October of 2007. Mattie was five years old and this was his last trip to the pumpkin patch. The next year, Mattie was fighting cancer. Each October, we took Mattie to practically every fall festival that was in our area. Mattie loved the wagon rides, the games, and of course picking the perfect pumpkin. One year, we must have had 7 pumpkins by the time we attended all the festivals. Now we have no pumpkins. I haven't bought one since Mattie died. 


Quote of the day: The trouble with not having a goal is that you can spend your life running up and down the field and never score. ~ Bill Copeland


It was a busy day of walking Sunny, chores, and conference calls. One of our calls was with the Association of Pediatric Hematology/Oncology Nurses (APHON). Peter and I recently presented at the APHON conference in Palm Springs this summer. APHON was the first professional organization to endorse the Standards and they were the first organization to reach out to us and ask whether we would be willing to annually fund evidence based research grants.

Not just any grants, but grants that will help with the implementation of the Standards. Music to our ears! As we learned first hand, nurses are the front line providers of interventions and interactions with children and families. Therefore, it is vital to have the nursing profession actively answering this question with us. The question being.... how do we implement the Standards in order to provide optimal psychosocial care to children and families?

It is wonderful that the Standards have been published. That was a three year labor of love, but now what? Peter and I certainly did not have the vision to create the Standards with the intention of them being shelf-ware. They must now be made tangible, usable, or in essence implementable for cancer treatment sites around the Country! How? Well that requires more research. Why? Because anyone can cobble together some services and claim they are meeting the Standards, but what does that actually mean? NOTHING. It means nothing until you create a model and then test that model of services out on children and families. After all, whatever psychosocial services children and families receive, we want there to be a measurable outcome, that indicates an increase in quality of life. That is the ultimate goal. 

We had a very productive call with APHON, and it is wonderful to find professionals who are like minded and share our vision and goals. Mattie Miracle has wanted to establish a psychosocial research grant program for some time. Naturally we could have done this ourselves, but we believe partnering with the professional groups who provide the care is a more effective way to attract quality research proposals. APHON has paved the way for us, because now two other professional organizations have asked us to establish Mattie Miracle grants with them as well. 

Soon Mattie Miracle will not only be funding direct supportive care to children with cancer and their families (child life positions and snack carts), providing leadership on the implementation of the psychosocial standards, but also funding quality research grants at three organizations. The beauty of this is that these organizations will oversee all the administrative work associated with the grants, the grants will be open to all their members, and Peter and I will serve on the selection committee to determine grant recipients. Exciting times for Mattie Miracle!

October 18, 2017

Wednesday, October 18, 2017

Wednesday, October 18, 2017

Tonight's picture was taken on October 13, 2008. Mattie was two months into treatment and next to him is Linda, Mattie's child life specialist. Linda is the reason we started the Mattie Miracle Child Life Program Fund at the Hospital. It was in thanks to the countless hours Linda spent with Mattie and our family. She helped in so many indescribable ways. Went way beyond a job description. We met Linda during Mattie's first week at the Hospital. Linda caught onto Mattie's needs immediately and she appreciated and understood him. In turn, he had a great fondness and turned to her for support. That day, Linda invited Mattie into the child life playroom, which was closed to patients and families. It was closed because she received a huge toy delivery and needed that room to process everything. Nonetheless, she invited Mattie in and gave him the task of sorting toys. Mattie LOVED tasks and having responsibility. Linda was smart, because she picked up on that need right away. So much so that on the weekends, Mattie was in charge of feeding the fish in the Hospital's fish tank. Another task he took seriously. I love this photo because I caught these two buddies in action!


Quote of the day: Your most valuable asset can be your willingness to persist longer than anyone else. ~ Brian Tracy


Today Sunny got his stitches removed from all three tumor sites. In addition, his gums were examined to make sure they were healing from the removal of three teeth. Thankfully Sunny is healing very well and all his tumors are benign. However, Sunny has a mind of his own and there was no way he was going to wear his Elizabethan Cone to protect him from scratching at his suture sites. The vet literally wanted Sunny to wear this ridiculous collar (which I am showing you here, being modeled by another dog!) for two weeks, 24/7. Sunny is like Houdini. As soon as we velcro'ed him into this collar, the next minute we knew he was twisting his body and popping it right over his head. 



This evening, I was walking Sunny, and bumped into my neighbor who has a puppy. He was telling me that male dogs tend to bond better with their female owners. I had never heard of this before, but if Sunny is any indication, I would say that theory is absolutely correct. But you know me? I couldn't let it go. So I started Googling the topic to see what I could find. Low and behold, people are actually doing research on dogs and the genders they are attracted to! At the end of the day, it appears that researchers have debunked the myth that dogs are attracted to any gender. 

The study referred to in the article below found that neurotic owners and neurotic dogs appear to be sensitive to each other’s needs, and spend more close time together than non-neurotic pairs. This had me LAUGHING hysterically. Why? Because one could classify me as partly neurotic. Neurotic is characterized as experiencing unpleasant emotions easily, such as anger, anxiety, depression, and vulnerability. That's me, and I also think that is Sunny. Sunny is super sensitive to his environment and for a dog, has very visible moods. 

I particularly love this quote in the article:

“Owners scoring high on neuroticism may mainly regard their dogs as being a social supporter and thus will frequently interact with them and reinforce spatial closeness with their dogs.”

That sums up Sunny and me! Now of course, one could say that Sunny is bonded to me because I do the primary dog care...... food, clean up, walking, and grooming. All of which meet his biological needs, but Sunny is much more complex than this and you can't just evaluate him and his actions without also taking into account his behaviors and emotions. A complex dog for a complex girl!

Do dogs prefer men over women? https://healthypets.mercola.com/sites/healthypets/archive/2013/11/20/human-canine-interactions.aspx

October 17, 2017

Tuesday, October 17, 2017

Tuesday, October 17, 2017 -- Mattie died 422 weeks ago today.

Tonight's picture was taken in October of 2008. Mattie was three months into treatment and this photo was taken before any of his limb salvaging surgeries. Life was much simpler at that point for Mattie, even though he was on high dose chemotherapy. That evening, we were invited over to Mattie's "girlfriend's" house. Charlotte and Mattie met in kindergarten and they had an instantaneous friendship. You can see Charlotte peeking through the tunnel Mattie was holding up! I didn't just come up with the title "girlfriend" on my own. I got it from Mattie! In fact, one day while driving them both to a friend's birthday party, Mattie reached into his pocket and gave Charlotte a plastic ring he got from the dentist's office for a good cleaning. He told Charlotte this was an engagement ring and he planned on marrying her. How I did not drive off the road is an amazing feat. Mattie was serious, and Charlotte took the ring with the same level of intention. In many ways, it was as if Mattie knew he had to live his life quickly, because he wasn't going to get a lifetime to do it in. 


Quote of the day: A true test of character isn’t how you are on your best days but how you act on your worst days. ~ unknown


In the past two days, I had two different friends ask me...... do you know how powerful your blog is? Do people write to you to tell you this? Of course in the next breath, these friends also acknowledge that they do not know where I get the content or the inspiration to write. After all, if you write a blog everyday, you need to express a thought or a feeling. It isn't just meaningless words on a screen. Daily writing may sound easier than it actually is! 

So to answer the first question..... I am happy others find the blog useful, meaningful and applicable to their own lives. That is a great compliment especially since I do believe what makes Mattie's story and our journey so powerful is I am talking about real human thoughts and emotions. All of us may not experience childhood cancer, but we do experience emotional highs and lows, illness, loss, and life altering moments. These are things I do not sugar coat in my writings, though given how I do try to protect myself and others, I do not share every waking thought and feeling here. I never have because I think it would detract from the nature and the purpose of the blog. 

Now onto the second question. Occasionally people do write to me to tell me they checked in on the blog and how one particular day resonated with them. But for the most part, I get regular feedback from a handful of followers, which I appreciate. Is this feedback needed? Well we all need feedback in life and I appreciate knowing that what I am writing is making a difference to others and more importantly that my writings enable them to get to know Mattie. Since I have been writing the blog since July of 2008, I have learned to be my own compass. I write about things happening to us, my perspectives on life as a mom without a child, about our Foundation work, and at times I will reflect on how my lens has evolved over the past eight years since Mattie died. It would be hard for others to give me feedback on this, since what I write about is so personal. Therefore at the end of the day, the feedback that is the hardest is my own, because to me the blog is a representation of Mattie. 

After Mattie died, I had many followers up in arms wondering if I would continue to write the blog. Mainly because reading the blog became part of their daily ritual. Almost like brushing one's teeth. Thousands of people were glued to the blog and our story. So initially in 2009, I most likely decided to continue writing to address that need. But over time, things shifted. Or at least my need to write the blog changed from fulfilling others' needs to fulfilling my own. Since the blog is a labor of love, the motivation must come from within otherwise it would be easy to say.... I am not writing today! Or I would be caught up with worry about what others wanted to hear, or what content I should cover, and so forth. But that was never the purpose for why the blog was created. The blog was created to share Mattie's journey with others, in a real and candid way. IN MY OWN WORDS! Through this candor, a community was build. People rallied around a cause, a cause they couldn't see or experience daily, but one they learned about through my words and photos. In many ways, without the blog we wouldn't have a Foundation, because our core supporters of the Foundation, are the result of being drawn into our lives through this blog. 

October 16, 2017

Monday, October 16, 2017

Monday, October 16, 2017

Tonight's picture was taken on October 4, 2008. We took Mattie to the Inner Harbor in Baltimore to have lunch along the water. We were trying to distract Mattie before his first big limb salvaging surgery on October 20. My parents were visiting too and we made it an adventure for Mattie in Maryland. Naturally back then we had no idea how Mattie's surgeries were going to transform his life, and not for the better! In retrospect it is good that we were clueless, because if we actually knew what we did now, I am not sure we would have had the necessary hope to carry on. 


Quote of the day: Anything that’s human is mentionable, and anything that is mentionable can be more manageable. When we can talk about our feelings, they become less overwhelming, less upsetting, and less scary. The people we trust with that important talk can help us know that we are not alone. ~ Fred Rogers


This afternoon, I glanced down at a publication I received from the American Counseling Association, and noticed on their front cover of Counseling Today, the topic in bold letters.... providing trauma informed treatment. Naturally this topic is in my strike zone and I was curious to know how trauma was defined in the article and I wanted to understand the impact of childhood trauma on the lives of adults. 

Here's an excerpt from the article:

In 1995, the Centers for Disease Control and Prevention and Kaiser Permanente began what would become a landmark study on the health effects of adverse childhood experiences. Over the course of two years, researchers collected detailed medical information from 17,000 patients at Kaiser’s Health Appraisal Clinic in San Diego. In addition to personal and family medical history, participants were asked about childhood experiences of abuse, neglect and family dysfunction, such as emotional and physical neglect, sexual and physical abuse, exposure to violence in the household and household members who had substance abuse problems or had been in prison. Researchers found that the presence of these negative experiences in childhood was predictive of lifelong problems with health and well-being. The more negative experiences a participant had, the more likely — and numerous — these problems became.

So in a nutshell, this study was asking adults to recall their childhood traumas and one thing that immediately caught my attention was there was NO mention of illness as a potential trauma (of course my lens is on cancer, childhood cancer, or a parent's cancer diagnosis) and let's not mention the taboo words... death/grief. Illness and grief can both cause traumas, and I would beg to say more than just one trauma, as dealing with a chronic or life threatening illness exposes the patient and caregivers to multiple traumas (diagnosis, adverse side effects of treatment, having to undergo scans and to receive test results, receiving bad news, prolonged hospitalizations, exposure to other infections, watching others around you in treatment die, and the list goes on). 

The article seemed to identify other traumas pretty easily.... abuse, neglect, family dysfunction, exposure to violence, and family members contending with substance abuse or incarceration. With almost 500,000 childhood cancer survivors in our US population, clinicians in the community should be alert to the traumas associated with illness and death. 

Putting aside what qualifies as a trauma, the article talked about the fact that people coming to talk to a therapist may not bring up, admit, or feel comfortable addressing past traumas initially. So it isn't the therapist's job to uncover or pressure a person to reveal something he/she isn't ready to discuss. Which I think makes perfect sense because when I think about my own situation, I am not going to relive aspects of my time with Mattie with just anyone. Regardless of who I am with.... because reliving aspects of Mattie's care and the reality of our daily life are heavy and complex. 

But I love the paradigm shift in therapy from.... what is wrong with the person, to what happened to the person sitting before me. It is vital to understand how we all have been impacted by trauma and how we have reacted and adapted to those experiences. The article discusses how trauma effects the brain and emotional regulation and how such things as self care and exercise help on a daily basis to fight the impact and arousal of trauma. I would like to insert that the impact of trauma isn't necessarily short term. For me, it was like a catastrophic emotional experience completely altered my circuitry, and though things may reconnect and I look like I function, the wires aren't connected the same way. How do I know? Because for example, I no longer can multi-task. If you ask me to read something in a public place with music or talking in the background, I can't! I literally can't. It is as if I am seeing the words but I have NO IDEA what they are saying to me. I have other examples too, not just this one!

I find that exercise does indeed help me with a whole host of issues. Certainly walking Sunny gets me up and out every day, but now I am back to doing Zumba. Zumba works for me because it is intense, high impact, and involves music. If you ask me to exercise and music isn't involved, I literally won't do it. Music keeps me focused and also in a way forgetting about what I am physically doing. Sure I may have preferred this form of exercise prior to Mattie getting sick, but now I really need it to keep me focused and expending energy. To me, everything I am talking about is yet another psychosocial impact of childhood cancer. The medicine may have ended 8 years ago, but the psychosocial journey is ever present and constantly evolving. 


Informed by Trauma:
https://ct.counseling.org/2017/09/informed-by-trauma/

October 15, 2017

Sunday, October 15, 2017

Sunday, October 15, 2017

Tonight's picture was taken in October of 2008. Mattie was two months into treatment and it was before his first limb salvaging surgery. Frankly chemotherapy was bad enough, but what made our situation twenty times worse were all of the major limb surgeries Mattie needed. Mattie was never the same physically or psychologically after his surgeries. On this particular day in the photo, Mattie's cousins were visiting from Boston. They had a full and active day together, ending with running around the flag poles near our home. The ironic part about all of this is I can't pass those flag poles now without thinking of this moment in time. 


Quote of the day: There are no dogs in heaven, then when I die I want to go where they went. ~ Will Rogers


Peter and I went out today to do some chores. When we got home, someone was working me hard to go out for a walk. Sunny followed me up the steps and down the steps and was supervising me as I was putting my sneakers on!!!

Sunny is a velcro dog and he primarily does this with me only! Peter jokes that Sunny is my "boyfriend" and that he looks at me the same way Mattie used to look at me. Not sure about that, but one thing is for certain, where ever I am, Sunny is not far behind. 








I have no idea why I thought about this today, but it dawned on me that if Mattie had only one bone tumor at diagnosis he most likely would be alive today. I have no clue, why 8 years after Mattie's death, I should be reflecting on this. I imagine that early on in Mattie's diagnosis process I thought about this fact, but back then I was probably too clueless to know the significance and the extremely poor prognosis he had with multiple primary bone tumors. I thought it was devastating knowing about the one huge tumor in his right arm but the other tumors were found by happenstance. 

Mattie was given a CT scan to determine if his cancer progressed to his lungs, since that is the usual trajectory of osteosarcoma. It was during the CT scan of his lungs, that the imaging caught his left arm on the scans by accident. The scan detected no disease progression in his lungs, but instead another large tumor was found in Mattie's left arm. At that point, Mattie's whole body had to be scanned because he had a very rare form of osteosarcoma. Maybe one child every ten years around the world, develops a cancer like Mattie's. After a full body scan, we learned that Mattie had four primary tumors (one in each arm, right left, and left wrist). 

The reason why I believe childhood cancer is comprised of multiple traumas, is for this very reason I am describing. I thought our world ended when we heard Mattie had one tumor in his right arm. Yet once we learned that he had four tumors, we really longed for the previous diagnosis. With each stage of Mattie's treatment process we were faced with more bad news, challenging decisions, and seeing Mattie transformed before our eyes. Yet while interacting this week with parents who also lost their children to cancer or have childhood cancer survivors, I noticed that we all sound the same! The same in the sense that the traumas are part of our lives, we reflect on them often, and time doesn't change our reality or how we think of this reality. We may function and continue to move forward, but forward doesn't mean without our child, forgetting our child, or returning back to normal! 

October 14, 2017

Saturday, October 14, 2017

Saturday, October 14, 2017

Tonight's picture was taken in October of 2008. Mattie had already undergone his first limb salvaging surgery which was why he was in a wheelchair. I know that this photo was taken on a Friday. Why? Because Mattie was watching the chemistry club doing experiments on the hospital floor. Every Friday the club came and interacted with patients. They were fabulous and the chemistry club president took a liking to Mattie. On days Mattie wasn't able to come out into the hallway, Chris (the president) brought the experiments into Mattie's room. That particular day, Chris was making ice cream with nitrogen gas. This fascinated all of us. Mattie was surrounded by buddies... his two child life specialists (Whitney and Lesley) and his big buddy (and fellow childhood cancer friend), Brandon. Though that did not take Mattie pain or issues away, having this support made a huge difference to our quality of life. 



Quote of the day: We are shaped and fashioned by what we love. ~ Johann Wolfgang von Goethe


Peter and I were tired today after a long week. I have to remember that in addition to doing Mattie Miracle work, I was hit by a horrible migraine for a week. I am finally coming out of that. Despite the grayness and change of weather, Sunny needs to go out for a walk. So we headed to Roosevelt Island, a Mattie and now Sunny favorite. In the spring and summer, the Island is always packed with people and it is hard to find parking. But now that the weather is turning cooler, there is no parking competition. This is the one benefit of the weather changing. I also find that in the winter time, only Sunny and I are outside walking. There is no congestion on the sidewalks, and it is delightful. 




Meanwhile this afternoon, while I was sitting on the couch, I saw that the sun was coming out. It was such a glorious sight, I snapped a photo! I really rely on our room with view in the cooler weather months, and soon many of our outdoor plants will be brought in for the winter. Indie just LOVES all the plants coming in and we are entertained at watching her hide and jump around the plants. 

October 13, 2017

Friday, October 13, 2017

Friday, October 13, 2017

Tonight's picture was created by Tim Beck, our Facebook friend. Tim sent it to us today and it is always a lovely surprise when he sends us a Mattie collage. At the center of this collage, was a photo I took of Mattie sitting on a white rocking chair in October of 2002. Mattie was only 6 months old and holding onto a real pumpkin. Then Tim superimposed on the pumpkin a photo I took of Mattie on Halloween of 2003. So in essence you are seeing the progression of Mattie at Halloween in this composition. All the other photos surrounding these central photos, are other Halloween photos of Mattie throughout the years.  


Quote of the day: The meaning of life is to find your gift. The purpose of life is to give it away. ~ William Shakespeare


Yesterday while attending an International childhood cancer conference, I heard mention of the fact that childhood cancer survivors experience aging at a faster rate than their non-cancer peers. This nugget of knowledge stayed with me all day until I decided to look up the research study that addressed this premature aging finding. Clearly, premature aging has great consequences on one's physical health and longevity of life.

Can you imagine managing this as a parent, and having to help an adult child cope with these bodily changes? Some of these adults were so young when they were diagnosed that they do not even remember their cancer journey. Yet their cancer can never be forgotten, even if they have no memory of the treatment. The problem with childhood cancer is that toxic medications are given to developing bodies and minds, unlike with adults, therefore children are more likely to deal with many long term effects from the treatment (e.g., heart issues, diabetes, secondary cancers, infertility, high blood pressure, hearing loss, eating disorders, addiction, depression, anxiety, ADHD, etc). When you think about all these chronic and life threatening issues that can arise in adulthood, it shouldn't be that surprising then that the body ages from all these stresses. 

Below are the specifics on the survivorship study on aging. I think you will find this enlightening, and yet like many aspects of childhood cancer, this too is not typically discussed. Yet like I always say..... the psychosocial issues do not end when the treatment does. Here is yet another example. 

St. Jude (located in Tennessee) is the coordinating center for the Childhood Cancer Survivor Study (CCSS). This multi-institutional collaboration is the world’s single largest resource for survivorship research. The data from this large study indicates that young adults who survived childhood cancer are more likely than their peers to be frail. Researchers also found that frail health was associated with a greater risk for adult childhood cancer survivors of death and chronic disease. 

Being frail was defined by the presence of at least three of the following – weakness, self-reported exhaustion, physical inactivity, low muscle mass and slow walking speed. In the general population, being frail is most commonly associated with advancing age.

In this study of 1,922 childhood cancer survivors, 13.1 percent of women and 2.7 percent of men qualified as frail despite having an average age of less than 34 years old. In a comparison group of 341 young adults with an average age of 29 years old and no history of childhood cancer, none qualified as frail. Nationally, an estimated 9.6 percent of women age 65 and older and 5.2 percent of men in the same age group meet the definition. The unexpectedly high prevalence of frailty among childhood cancer survivors suggests accelerated aging.

Adult Survivors of Childhood Cancer Article:

https://www.stjude.org/media-resources/news-releases/2013-medicine-science-news/adult-survivors-of-childhood-cancer-at-risk-of-becoming-frail-at-an-early-age.html

October 12, 2017

Thursday, October 12, 2017

Thursday, October 12, 2017

Tonight's picture was taken in October of 2008. Mattie was in the hospital managing treatment and that evening was a music night. I naturally can tell because our incredible musical duo of volunteers allowed Mattie to play with their keyboard. Jerry and Nancy were volunteers we met during Mattie's first week of chemotherapy. In fact, they showed up at a time when we really needed to forget our troubles and sing a long. They always came in the evening hours after work, so Peter got to experience their fun and antics. In fact, they were so fond of Mattie that they donated a keyboard to him while he was battling cancer. Of course after Mattie died, I donated it to the hospital so other children could experience the power and gift of music. To this day, Peter and I meet up with Jerry and Nancy for dinner on a periodic basis. I will never forget their kindness, good spirit, and games they played with Mattie. They always played a 'name that tune' game with Mattie. However, Jerry would email me before their visit to make sure whatever songs we was planning on playing, Mattie could identify. Speaks to his character, no?


Quote of the day: To say nothing is saying something. You must denounce things you are against or one might believe that you support things you really do not. Germany Kent


Today we attended the Pediatric Psycho-oncology track at the SIOP conference in Washington, DC. The International Society of Paediatric Oncology (SIOP) was founded in the late 1960’s.  SIOP has over 1000 members worldwide including doctors, nurses, other health-care professionals, scientists and other researchers. 

SIOP is an interesting conference because at least two or three conferences are going on simultaneously. The majority of attendees are oncologists, and most of the sessions are medically related. However, the other two components are a parent track and a mental health track. The problem however with all of this is the three tracks don't necessarily interact with each other and hear one another's perspectives. The doctors stays with the doctors, the parents with the parents, and the mental health folks with the mental health folks. 

I attended two sessions in the morning. I frankly did not go in with the mindset of challenging anyone. After all, in this audience I am not the clinician, just the parent. But in some cases, as tonight's quote points out..... you can't stay silent. 

One researcher presented her study on the long term fate of parents, parents of children who survived cancer. She was very clear that soon after treatment ends these parents return to normal, or in some cases better than normal. Meaning in comparison to parents of healthy children, these parents reported lower mental health concerns. That was deeply troubling to me, since this has NOT been my experience with any parents of a survivor that I have talked to, throughout the Country! 

But then she presented socio-economic data, and this bar graph. She wanted to let us know that she looked at employment status of mothers and fathers, both those with healthy children and those who had a child cancer survivor. Overall, the employment situation of parents of survivors was significantly different from control parents. In both populations the majority of mothers was employed part-time. However, overall, more mothers of survivors were not employed compared to control mothers. 

She truly had no comprehensive way to explain this other than perhaps it is because Switzerland (where the study was conducted) doesn't have medical leave policies like we do in the USA. When it came time to ask her questions, I couldn't help myself. To me there were so many blaring issues. So I first told her that I couldn't understand her data which indicated that the trauma experienced by parents is not significant at predicting issues into the future. That I was perplexed by what she was reporting, given our practical experience working with families. This is NOT what we are seeing and hearing. But then I asked her whether she thought there was a psychosocial link as to why mothers of childhood cancer survivors couldn't go back to work when treatment ended. To me this is a no brainer. She couldn't accept what I was saying, as she was adamant that psychosocial issues aren't a factor and also dissipate over time for parents of survivors. She lost me and the more I kept at her the more she pushed back at me. Mind you this discussion was in front of an entire audience of researchers/clinicians.

When I removed myself from the microphone, two other parents stood up and wholeheartedly agreed with me and also challenged her. During the break, we convened and the parents really thanked me for standing up and speaking the reality. It is my hope that this researcher has learned one important lesson from this. The lesson is it is always important to run her findings passed parents, or at least be open to possibilities in her interpretation of the findings. 


At 12:45pm today we presented an hour long panel presentation on the implementation of the Psychosocial Standards of Care. I had five minutes to explain why we had this vision to create the Standards. To me it was a blur, but Peter taped a part of it and he said I was poignant and spot on! But he's biased!
Peter did a great job capturing some highlights of the presentation!
Interesting that the backdrop is gold. Clearly by happenstance, but gold is the official color of childhood cancer. 
The audience listening to our presentation!

October 11, 2017

Wednesday, October 11, 2017

Wednesday, October 11, 2017

Tonight's picture was taken in October of 2008. Mattie was in the outpatient clinic, at the art table. But of course! Mattie and his art therapists had been working on a "haunted house" for several weeks, as Mattie wanted to decorate for Halloween. The house originated from a simple cardboard box that he decided to transform. With each visit to the clinic, more was added to the box. It was actually quite intricate, because inside the box was very spooky. Just like you would expected from a haunted house. On the outside Mattie created a witch and several ghosts flying over head. We had this cardboard house for the longest time and I am so happy we photographed it. 



Quote of the day: There can be no deep disappointment where there is not deep love. ~ Martin Luther King, Jr.


I think Martin Luther King, Jr., captured my feelings about October. Naturally his quote has nothing to do with breast cancer or the month of October. But to me the sentiments of his quote capture what is in my heart. For those of you who do not know (though with the pink campaign, it would be hard to NOT know), October is national breast cancer month. Clearly I think cancer of any type and at any age is horrific. I am aware of the magnitude of breast cancer, how many woman are diagnosed, and impacted. I have several friends who are either battling or battled this disease. So do not take my next statement the wrong way..... but I am always perplexed why childhood cancer doesn't get as much attention as breast cancer. Few people know that September is childhood cancer awareness month and that the official color for children is gold. Because they are golden to us! But why is that? Of course there are many reasons for example.... fewer children get cancer each year than women (though 16,000 children a year sounds like a lot to me), childhood cancer is a subject no one wants to hear or talk about, and the pharmaceutical industry really has no incentive to produce drugs for children (since their audience who needs them is much smaller in children than adults). 

Today, I went to the salon to get my nails done. I visit this salon frequently. I am aware of the fact that the salon gets involved in philanthropic causes and recently they sent out a mass email to all their clients letting them know about their upcoming breast cancer fundraiser. All great! Today while checking out of the salon, the two young women behind the counter inquired whether I was going to make an appointment and support their breast cancer fundraiser day. Literally my response was 'NO!' I explained that I value their cause and hope it is a successful event, but that my focus and support goes to children with cancer. They just looked at me! They honestly did not know children get cancer, much less that 4 to 5 children die each day from cancer in the US. But what sent them over the edge was that I told them that my quest to support children with cancer was personal, since my son had cancer and died. When I tell you these women looked like they were hit by a train, I am not kidding. They both started tearing up and they couldn't speak a word to me. My intention was not to disrupt their day, but my intention was to educate them that not only women get cancer and need our support. 

So back to Dr. King's quote. I get upset about October and seeing pink to some extent because of my deep love of Mattie. If I did not experience childhood cancer for myself and lose Mattie, would I still have this same disappointment about October? Unfortunately the answer is no. I can't get upset at others because I know that I potentially would be just like them, clueless. I long for clueless and wish I did not know children get cancer and die. Nonetheless,  I see growth in my reaction. Years ago I had a visceral reaction to seeing pink awareness. But now I feel internally it is possible to acknowledge both without negating the other. Well at least in theory. 

October 10, 2017

Tuesday, October 10, 2017

Tuesday, October 10, 2017 -- Mattie died 421 weeks ago today. 

Tonight's picture was taken on October 10, 2009, the day of Mattie's funeral and celebration of life event. After Mattie's funeral, hundreds of people walked from the church up the block to the Visitation School. Thanks to one of our friends who is a graduate of the school as well as a board member, the School opened one of its beautiful buildings for us to host a celebration of life ceremony, to display many of Mattie's art pieces, to have a luncheon, and a dedicated room for Mattie's friends to gather, create and have a balloon release. I can't tell you how many photos, pieces of art, and other objects that were on display at this event. Thankfully I had help putting this event together, which was why we waited a month after Mattie's death to host this meaningful day. 

Quote of the day: Ever has it been that love knows not its own depth until the hour of separation. ~ Kahil Gilbran


It is hard to believe that 8 years ago today was Mattie's funeral and celebration of life event. I went back to the blog in 2009, and realized I did not post many photos of Mattie's celebration of life event. But one thing was very clear, hundreds of people attended Mattie's funeral and event. I copied the posting I wrote in 2009 below. I think it is worth reading, I know I appreciated reflecting upon it. One thing that caught my attention is that I wrote: "I had many questions asked of me, as to whether I would continue writing the blog. As I said before I would write up until Mattie's funeral. I am not sure how I feel about this now, and will continue until I have determined I can't do this any more. A part of me feels by writing each day, I force Mattie's memory to be ever present and therefore to never die. Of course I realized whether I write now or not, his legacy will continue on to some extent. But until I can assure his legacy with an effectively functioning Foundation, I most likely will keep writing."

Can you believe this? At one point I thought I was going to stop writing the blog after Mattie's death! I know I have toyed with this notion many times since then, but for nine years, I write this blog daily. It is a labor of love. I would say that my thoughts and feelings have evolved over the years, but at the end of the day the fear is still the same. Time has not erased that..... I write because I don't want to forget Mattie. What a commentary for a parent to have to write. 


Blog posting from the day of Mattie's funeral (October 10, 2009): 

I can confidently say that Mattie had a beautiful funeral mass, reception, and celebration of life ceremony today. I know he was looking down upon us and was smiling. He was smiling for many reasons, I am sure he was beaming over the fact that people were appreciating his art work and creativity, and most likely because he could see just how many people united together and formed a solid community. This community helped us through the past 13 months, through this emotionally laddened day, and I have no doubt some of you will be there as a continued force into our uncertain future.

It is after midnight, and I am not thinking as clearly as usual. I am exhausted physically and emotionally, and therefore plan on making this short tonight, in hopes that having another day to reflect on today, will make whatever I say tomorrow more insightful. If that is at all possible. One thing I do want to say is that we are SO grateful to Team Mattie for helping us plan, coordinate, and execute our dreams and desires for today's event. You far exceeded my expectations, and having you all in our lives is a blessing beyond measurable proportion. Mattie's art work was exquisitely displayed, and when I saw it filling each and every room, I took great pride in his works and appreciated the importance of art in his life this year.

We want to thank all of you for coming or sending us messages today. Your presence made today possible, and several of you assured me you would never forget Mattie. I had many questions about whether I would continue writing the blog as well. As I said before I would write up until Mattie's funeral. I am not sure how I feel about this now, and will continue until I have determined I can't do this any more. A part of me feels by writing each day, I force Mattie's memory to be ever present and therefore to never die. Of course I realized whether I write now or not, his legacy will continue on to some extent. But until I can assure his legacy with an effectively functioning Foundation, I most likely will keep writing.


The day couldn't have been more special. Every part of it was memorable, and seeing the children sing a self created song for Mattie was touching, along with their red balloon release with messages attached for Mattie to read in heaven! What a sight that was, and I will never forget any of this. None the less, even after a mass, talking to several hundred people, hearing tributes to Mattie, and being surrounded by amazing love and support, I still tonight feel so empty, so alone, and so directionless. I actually don't feel much these days, I can't cry, and I move from one task to another. Despite not feeling, I do know on some level I am profoundly changed and I miss everything about Mattie in our life.



I am signing off tonight out of sheer exhaustion, but I would like to end with a message I received.


This message is from one of Ann's neighbors who I met at a picnic in the spring. Karen wrote, "I have started and re-started this email several times in the month since Mattie passed away. I worried that you would think it strange that someone who does not know you or Mattie would write an email to share her sympathy. But as you have already heard from many others, Mattie's life and his battle against cancer have been in my thoughts so much these last few months, so I wanted to let you know a few things. First, though I never met him, I will not forget Mattie. When reading your blog, it always struck me that Mattie was able to keep his sense of humor, his inquisitiveness, and his sense of self through incredible pain and through situations most adults would struggle to endure. It is truly amazing. I have two boys, and when I look at them I sometimes wonder about Mattie and how someone so young was able to have the strength and spirit to fight the way he did. He was clearly an exceptional boy, and I know it is because he has exceptional parents. Which leads to me to my second point - what a profoundly generous thing it is for you and Peter to share your journey through your blog. As I said before to you, I have several friends who haven't met you but who have followed Mattie's battle. All of us have been deeply affected by his fight and his death, and while we are sad, I also know that it has been a lesson. While I believe (hope?) that all parents love their children, your complete love and devotion to Mattie, and how you were able to fight for him so fiercely despite being exhausted and being faced with unimaginable pain, struck everyone I know who reads your blog. Something brought this home to me the other day. I had to take my 2-year-old to the ER for stitches after he hit his head on a table. He was fine, and I knew he would be fine, but it was a pretty hairy 30 minutes when they strapped him down to a board to start doing the stitches on the back of his head. He was hysterical. After they finished and I was comforting him, I thought - how did the Browns do this every day for over a year without being able to tell their child or know that everything would be "fine" in a half-hour? And it led me to this. Mattie was able to do it because he knew that his parents loved him without limit, and his confidence in that gave him the strength and courage to keep battling cancer. I am grateful to you and Peter for sharing Mattie's life and for allowing me to know him."

October 9, 2017

Monday, October 9, 2017

Monday, October 9, 2017

Tonight's picture was taken in July of 2009. This was before we knew that Mattie's cancer status was terminal. That day Mattie was at clinic receiving his experimental treatment. While waiting around, Mattie naturally gravitated to the art table. As you can see he had a ton of supplies in front of him. Which was typical for Mattie. Next to Mattie was Katie (one of his outstanding HEM/ONC nurses) and Jocelyn (his buddy who also had osteosarcoma). Both Mattie and Jocelyn lost their battle to osteosarcoma. Mattie died at age 7, and Jocelyn at age 31. Despite the age difference, they were good friends and I very much appreciated Jocelyn's presence around Mattie, because he felt that she truly understood how he felt. 


Quote of the day: Walking alone is not difficult but when we have walked a mile worth a thousand years with someone then coming back alone is what is difficult.Faraaz Kazi



Tonight's quote is spot on! The sentiments of the quote take me back to the day Mattie died at the hospital. I can still remember the feeling of entering the hospital as a family of three and then several days later after Mattie died we left for home as only two. Peter and I walked a journey with Mattie for seven years and certainly there were times as a parent when you feel alone. However, the isolation and feelings of being alone are magnified ten fold when you lose a child to cancer. We know what it was like to walk alongside our child, and now we have had to figure out a way to walk without him.

The reality of our loss is ever present, but when other losses occur, these deaths bring to the surface all our painful feelings. Around Mattie's birthday in 2014, Peter and I went to Florida. We always travel on Mattie's birthday, mainly because no one is going to celebrate his birthday with us, and instead of dealing with the emotions that evoke, we leave town. While on our trip, I received a phone call two days before Mattie's birthday. The call was from Jocelyn's mom, Laurie. Laurie wanted me to know that Jocelyn died and lost her battle to osteosarcoma. Needless to say I was shocked. Shocked because I did not realize Jocelyn's situation was terminal and second, Mattie loved Jocelyn and considered her a wonderful buddy in cancer. In this photo, you see a card that is propped up next to my desk lamp. This card was given to all of us at Jocelyn's celebration of life service. I look at that card daily. While at this service in 2014, Laurie (Jocelyn's mom) told me she was diagnosed with leukemia. This weekend, we learned that Laurie lost her battle. So now Jocelyn's family has lost Jocelyn and Laurie to cancer.

I naturally knew Jocelyn better than Laurie. As I saw Jocelyn often in clinic and she and Mattie had a beautiful friendship. I will never forget when Jocelyn tried to normalize Mattie's fears about his first limb salvaging surgery. No one could have done it better. She had a way of taking something so serious and making light of it. For example, she knew Mattie was scared about his surgery. Unlike Mattie, Jocelyn's leg was amputated. But Mattie did not realize that until Jocelyn popped her prosthetic off. You might think that was scary, but she made it is humorous and as a result Mattie began to see that even if something happened to his leg, he would be able to function.... after all look at Jocelyn. 

One day while in the clinic, Laurie came with Jocelyn for her infusion. So I had the opportunity to meet Laurie. Since the clinic was small, it would be impossible not to observe one another, and apparently Laurie was able to watch Mattie and me interact. The next time I was in clinic, Jocelyn came up to me and handed me a gift bag. The gift was from her mom to me. She said her mom wanted me to know that she thought about me and wanted me to know I was loved. The gift she gave me was this lime green mug from Starbuck's in the photo above. I still have and use this mug today. It always reminded me of our time together in the clinic, and how Jocelyn's mom and I shared a common bond... the loss of our children. I am saddened to know that the giver of this mug is no longer alive with me. For me, Mattie's death is so intertwined with Jocelyn's and now Laurie's.


This is a photo of Jocelyn's youngest sister, Hannah, with Laurie (her mom).
A photo of Laurie with her two surviving daughters and her grandson.