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!'

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

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!

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

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. 

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/

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!