Saturday, March 3, 2018

Saturday, March 3, 2018

Tonight's picture was taken in March of 2009. Mattie was home between treatments and as you can see he wanted to go on our deck and in his sandbox. Due to all his chemo treatments, Mattie had close to no immunity and he easily got sick. Regardless of what we did, Mattie always became neutropenic. It was a bi-product of each chemo infusions. Neutropenia is an abnormally low level of neutrophils. Neutrophils are a common type of white blood cell important to fighting off infections — particularly those caused by bacteria. Given that Mattie was going to get sick anyway, I felt it was important for Mattie to be able to be a child, and not curtail things he wanted to do. Within reason of course. So when Mattie wanted to go outside, we bundled him up and Peter even brought a portable heater outside, aimed at Mattie. What you can't tell however, was that Mattie couldn't walk to the sandbox and put himself inside of it. As a result of all of his surgeries Mattie coped with massive disabilities that prevented him from functioning independently. Given all of this..... look at that smile!


Quote of the day: Coming together is a beginning. Keeping together is progress. Working together is success. ~ Henry Ford


I think Henry Ford was absolutely correct! People can come together, but that doesn't equate to teamwork or success. As the simple act of coming together is just step one in the process. I liken Ford's analogy for success to Mattie Miracle, specifically in regard to our participation with psychosocial researchers. 

In 2012, Mattie Miracle hosted the first ever psychosocial symposium on childhood cancer on Capitol Hill. We had the opportunity to meet and work with four leading researchers who ran scientific panel presentations throughout the symposium. I deem this as coming together. However, it is the leadership we have supplied since 2012, that keeps us coming and working together. 

For the past five years, we have been working together for a common goal.... to create, publish, and get endorsed psychosocial standards of care for children with cancer. We have accomplished ALL of that together, but because we are a solid team now, we continue to push forward trying to strategize how we are going to get the Standards implemented. A good way to begin this push is with subsequent research. Research aimed at assessing who is supplying psychosocial care to children and families at treatment sites around the country and also answering implementation issues and barriers that could be preventing access to this much needed care. 

Which leads me to this research article. Peter and I had the opportunity to work with a group of fantastic social workers from our team to conduct a national survey, to analyze results and then publish the article entitled, Psychosocial standards of care for children with cancer and their families: A national survey of pediatric oncology social workers. The data was collected from around 80 different facilities around the country. We really worked on this from the ground up. It all started in April 2016, when we presented with this group of social workers at the Association of Pediatric Hematology/Oncology Social Workers conference in Rhode Island. At the presentation we told participants that the Association would be electronically sending this survey to them. That proved to be fruitful! Now almost two years later, we have this publication. 

The article's abstract:

In 2015, an interdisciplinary group of psychosocial experts developed The Standards of Psychosocial Care for Children with Cancer and Their Families. This paper presents data from a national survey of pediatric oncology social workers and their experiences in delivering psychosocial care to children and families. In total, 107 social workers from 81 cancer institutions participated in a 25-item online survey that mirrored the 15 Standards for Psychosocial Care. Both closed and open-ended questions were included.

Social work participants reported that psychosocial support is being provided at most cancer centers surveyed, primarily by social workers and child life specialists, addressing adaptation to the cancer diagnosis, treatment, and transitions into survivorship or end-of-life care and bereavement. While social workers reported offering comprehensive services throughout the cancer trajectory, many of the 2015 Standards are not being systematically implemented. Areas for improvement include funding for psychosocial support staff and programs, incorporation of standardized assessment measures, assessment for financial burden throughout treatment and beyond, consistent access to psychology and psychiatry, integrated care for parents and siblings, and more inclusion of palliative care services from time of diagnosis.


To read this article, go to:

http://www.mattiemiracle.com/implementation

Friday, March 2, 2018

Friday, March 2, 2018 

Tonight's picture was taken in November of 2002. Mattie was seven months old and Peter snapped this photo of us in front of the oak tree near our home. Mattie came to greatly appreciate this oak, because when he got into his tent moth caterpillar collection phase, the leaves from this tree, were the only food the caterpillars would eat. They refused all other leaves. Then of course Mattie began to understand that the oak produced acorns. That became another collection. Mattie had various collections, but in this case he loved sharing his findings, as he typically gave people in his life an acorn gift. In fact, Mattie's occupational therapist received one acorn each week. She had quite a collection going by the end of the year! 


Quote of the day: If when I am gone thou would’st honor me then plant a tree. Some highway, bleak and bare,
Make green with Leaves.
So radiant and fair
And full of leaves my monument
will be, so ever full of tuneful melody.
My monument will be a sight most rare 
Trees planted everywhere.
A highway broad from city to the sea 
Plant this in memory of me. ~ David Wright

We are saddened as Mattie's memorial tree suffered a blow today! This is the third memorial tree that has been planted at his school, because the previous two died, and now the current tree was injured by the 60MPH winds. Needless to say this sight was truly upsetting to us, as a broken tree is not the way we wish to remember Mattie. Nonetheless, it makes us pause yet again because what are the chances that three trees can be affected within such a short period of time?

THE HISTORY OF THE TREES.............The first memorial tree was planted in 2010, and was donated to Mattie's school by his classmates. Mattie loved oak trees and particularly loved collecting acorns, which he would then give to special people in his life. Selecting an Oak to honor Mattie was an easy choice. But that tree died in 2013.

In 2013, a Yellowwood tree replaced the Oak, but the Yellowwood died too. Seeing a trend?

In 2014, another Yellowwood was planted. This was a thriving and beautiful tree that produced amazing flowers timed with Mattie's birthday. Yet today's wind, impaired the tree.


I am sure the School would like to find a way to salvage the tree. But here's the thing..... in this case, I am less concerned about the tree and more concerned about the symbolism of the tree. Which is why I feel like we need to plant a fourth tree. I do not want a broken and less than whole tree to symbolize Mattie. I am particularly sensitive to this given Mattie's battle with cancer, a cancer that left him quite disabled and disfigured. I do not want a tree that mimics what cancer did to his body. I rather see a strong, bold, and vibrant tree that represents the true Mattie.  

Thursday, March 1, 2018

Thursday, March 1, 2018

Tonight's picture was taken in March of 2009. Mattie's best preschool buddy, Zachary, came to the hospital to visit Mattie. In fact, Zachary was very present in Mattie's life even through cancer, with visits both at home and in the hospital. It isn't easy as an adult to visit a hospital, much less a child with cancer. So I can imagine how scary and daunting it must be for a child. Pre-cancer, Mattie and Zachary had a physically active form of play, as they were constantly moving around, running, and jumping. Once Mattie had cancer, the way they played with each other had to change. Again this could have been a game changer for some children, but Zachary found a way to make it work. A special friend.



Quote of the day: Being authentic will get you where you need and want to go, and it will be your path to building the most meaningful and enriching connections with others. ~ Michelle Tillis Lederman


As I mentioned in February 24th's blog, I use an on-line site called Gigmasters to find local vendors for the Mattie Miracle Walk & Family Festival. GigMasters is an event services booking platform that matches your needs with entertainers, planners of weddings, dances, parties, festivals, celebrations and corporate events. They are so easy to use and provide great descriptions and reviews, so you can pick the right person for your event. 

This past weekend, I learned about a whole new service called Roaming Hunger. No one told me about it, I just came across it while doing Google searches. I mention this because it is like Gigmasters, however their focus is food. Roaming Hunger is a food truck booking service that allows people to find food trucks in real time, book trucks for upcoming events, and engage food trucks for advertising and promotional purposes. 

I wanted to replace our ice cream vendor at this year's Walk. However, it is easier said than done to find a food truck that will work your event. You can search for reputable food trucks on-line, but it is time consuming, on top of that, you then have to reach out to each one and explain your needs. By going through Roaming Hunger, you just contact ONE PERSON, explain your needs and requests are then sent out to their food truck network! 

All week, I have been getting ice cream, frozen yogurt and ices vendors contacting me. However, I went with a couple who owns an ice cream store in Leesberg, VA and sells Hershey's Ice Cream. They have agreed to come to the walk and sell (not popsicles like last year's vendor) actual scooped ice cream. They will supply us with 12 different flavors as well as two flavors of ices, and donate 10% of sales. 

So I can officially say, I have lined up all our vendors for this year's Walk on May 20th, and we have more activities than ever before.............................

1. a Challenge Walk
2. Two enormous inflatable moon bounces
3. A corn hole tournament with three top prizes
4. A raffle, with baskets valued at over $500 each
5. Lego displays and hands on activities
6. A 30 minute Reptile Alive show, followed by a 30 minute meet and greet with the animals
7. A magic show
8. Make your own crafts
9. A great DJ
10. professional caricaturist
11. professional face painter
12. Food from local vendors
13. corporate sponsor tables
14. Lawn Games

Wednesday, February 28, 2018

Wednesday, February 28, 2018

Tonight's picture was taken in March of 2009. I will never forget this moment in time. Mattie's child life specialist, Linda, invited Mattie to take part in the ribbon cutting event of the child life playroom. When we first entered the hospital in August of 2008, there was NO playroom in the pediatric units. Not until several months into Mattie's treatment, when a playroom was actually funded and constructed. Once it was built, it was one of Mattie's favorite places to visit. Linda understood what the room meant to us and she definitely understood that Mattie thrived on responsibility. He loved being a part of that special day and using a big scissor to cut the ribbon on the door. Pictured around Mattie was the chief of pediatrics at the time and the current president of the Hospital, Michael Sachtleben.


Quote of the day: The only good thing about times of adversity is that you realize who your real friends and fans are – and the rest go away – which in my mind is an OK thing. ~ Pete Wentz

I went to visit my friend Margy today who was diagnosed at the end of January with stage 4 ovarian cancer. Margy has already survived thyroid cancer, and is a cancer survivor in her own right. 

Margy's sister, Nancy, is in town this week visiting her. So I got to meet Nancy for the first time. However, Nancy and I have communicated numerous times by email, as she is a faithful donor to Mattie Miracle. It was lovely to meet her in person and I am impressed with the love and support being shown to Margy. Because unfortunately Peter and I have learned that adversity doesn't always bring out the best in people. 

Margy's husband takes a selfie of all of us each time we visit. I am so happy he does this because I think every aspect of the cancer journey is worth chronicling and photographing. It serves as a remind of what you have experienced and managed through, but at the end of the day, these visuals serve as our legacy. 

When I took photos of Mattie, I never thought I was doing that out of fear he was dying. Instead, I photographed each day because he was living and to me every aspect of Mattie's life was worth documenting. I did this when he was well, so I just continued my memory making while he had cancer. As I always say..... thankfully I did this, because now these photos of all his seven years are priceless to us. 

As I left Margy's house tonight, look who was greeting me!!!! A large Mattie moon. I took that as a sign! Or as Margy would say this was a "Godwink."

I heard her use this term today and I stopped her! Mainly because I never heard it before, so I looked it up. 

A Godwink is what some people would call a coincidence, an answered prayer, or simply an experience where you'd say, "Wow, what are the odds of that!"


What do Godwinks mean? Think about when you were a kid and someone you loved gave you a little wink across the dining room table ... Mom or Dad or Grandma. You didn't say, "What do you mean by that?" You knew. It meant: "Hey kid, I'm thinking about you right now." That's what a Godwink is too: a message of reassurance from above, directly to you, out of seven billion people on the planet, saying "Hey kid ... I'm thinking of you! Keep the faith! You're never alone."

Tuesday, February 27, 2018

Tuesday, February 27, 2018 -- Mattie died 441 weeks ago today. 

Tonight's picture was taken in March of 2009. Mattie was home between treatments and you can see two things for sure. First, Mattie wasn't putting pressure on his right leg. He never did post-surgery, as Mattie was never able to walk independently again. But the second things was, look at Mattie's room. Mattie's room became a warehouse filled with toys and gifts he practically received everyday while in treatment. I was unable to keep track of things, so instead they went into piles. Also notice the aeromattress on the floor. When we were home, this was where I slept while Mattie was in his bed. Because Mattie was hooked up to all sorts of IVs, he couldn't be left alone at night, especially as he needed help using the bathroom. After Mattie died, it took me YEARS to clean out this room. Now of course we use it as our Mattie Miracle work space. 


Quote of the day: Strength is the capacity to break a Hershey bar into four pieces with your bare hands - and then eat just one of the pieces. ~ Judith Viorst



Next week, Mattie Miracle is hosting its annual volunteer dinner. How did this event get started? Well it really started as a planning meeting for our Walk & Family Festival. It was held at a friend's home and finger food was served. But food wasn't the main reason for coming. Since that time, this event has evolved out of a home, into a restaurant, and now to a hotel. I really think in the beginning of the Foundation's history, I needed a lot of help brainstorming the Walk, which is why the planning meeting was crucial. Back then, I wasn't long on ideas and I certainly did not have the energy to devote to a fundraiser. As the journey of grief was all encompassing. However, with time this changed, and I would say the bulk of the Walk is my responsibility. It's a rather daunting proposition, because without these funds we can't run many of our programs and initiatives. 

Though I plan, coordinate, and do a great deal of the heavy lifting for the Walk, I can't do it alone. Especially on the day of the Walk, this group of dedicated volunteers are miracle workers. My core group of volunteers are invited to our annual appreciation dinner because Peter and I know how lucky we are to have these friends. They have been with us long term and are generous with their time, skills, and resources. The event goes smoothly because of these individuals who run activities, fundraise, and help market the Walk. 

I feel like a juggler. One of the things I am planning is next Tuesday night's dinner. On top of that I am trying to finalize Walk sponsors, raffle donors, updating the Walk website, and now just learned today that I have another strategy session for the Psychosocial Standards to plan on March 10. Of which I have to coordinate all the logistics. It doesn't end there, because April is our Item Drive month. 

We invite our friends and supporters to HELP US stock the Mattie Miracle Carts with toiletries in memory of Mattie's upcoming 16th birthday. We ask that all of the items on our AMAZON WISH LIST arrive to us by Monday, April 16. 

We fund and operate a Snack and Item cart at both the MedStar Georgetown University Hospital in Washington, DC and at Children's Hospital at Sinai in Baltimore, MD. These carts provide nutritious snacks, drinks, candy, and toiletry items free of charge to families caring for children with cancer. The carts revolve around the pediatric units three times a week and support families who are providing around the clock care to their children. The carts are greeted with sheer gratitude and appreciation.

Check out our Amazon Wish List:

https://smile.amazon.com/gp/registry/wishlist/2UQOK4GY955ZL/ref=nav_wishlist_lists_1

Monday, February 26, 2018

Monday, February 26, 2018

Tonight's picture was taken in March of 2009. As you can see I am holding up a huge pretzel. Mattie went through different food cravings. For the most part Mattie only wanted starches, but the type of starch could change week to week. That week.... the food of choice was a big circus pretzel. I literally put a request out to our care community and, lo and behold, pretzels arrived. With the sight of the pretzel, Mattie smiled. I am not sure what I would have done without our support network, because I was just too busy managing Mattie's daily care and needs, that there was no way I could have left the hospital room to meet food or toy requests. 


Quote of the day: Hard work spotlights the character of people: some turn up their sleeves, some turn up their noses, and some don't turn up at all. ~ Sam Ewing


Peter sent me the article entitled, Parental Caring Behavior Matters During Cancer Treatment. I attached the link below for you to see. I think Peter and I are on some sort of mission to not only help children with cancer but to prove this is a family disease. When your child gets cancer, to some extent everyone involved in the care also experiences it. 

Following the medical model, physicians and hospitals are focused on the PATIENT. Of course with children, come their side kicks..... the parents. However, the medical system is NOT designed to manage and treat the entire system. In fact, at times the family can appear to get in the way, especially with doctors who do not like to be questioned or challenged. I think medical personnel have some, and I emphasize SOME, understanding for how scary procedures and treatment can be for the child. But the majority of providers do not take into account the impact of all of this on the parent. 

Which may be why both Peter and I are intrigued by cancer studies that involve parents. The article I read today focused upon parent non-verbal behavior. In fact until this study, parents’ nonverbal behaviors have been rarely studied in relation to childhood cancer care. This research can expand parenting roles clinically in cancer treatment–related procedures (blood draws, scans, port access procedures, etc). Which actually is necessary, since parents pay a crucial role in care and it is vital that the medical team embrace this fact. In addition, such work can encourage nurses to develop educational interventions that aim to advocate for “caring” parents, in order to decrease the negative effects of invasive procedures on the psychological health of both child and parents.


Here are some key highlights of the study:

• Children often report more pain and distress due to procedures than from the cancer itself. Among cancer survivors, prior experiences with distressing procedures can lead to avoiding both regular primary care and monitoring for adverse effects of cancer therapies.
• P-CaReSS is a promising tool for evaluating parental verbal, nonverbal, and emotional behaviors during cancer-related painful procedures. This tool can help to further understand how parental caring verbal and nonverbal behaviors impact children’s experiences.
• Children were found to be significantly less likely to display behavioral (eg., kicking and escaping) and verbal distress (eg., asking for help and screaming) following parental caring behaviors, especially the rarely studied nonverbal behaviors (eg., eye contact, distance close enough to touch, and supporting/allowing). 
• If a child was already upset during the medical procedure, parental caring behaviors (eg., eye contact and supporting/ allowing) reduced child distress. 

The results of this study do not surprise me in the least! I learned the power of nonverbals first hand with Mattie. Mattie was asked to do the impossible, practically every day in the hospital. Once exposed to one fear (for Mattie his initial fear was scanning), then all subsequent tasks he was asked to do led or triggered a fear response. Mattie lived in a hyperalert state and even basic medical tasks could send him right over the edge. Which was why Mattie had to be sedated for scanning. No amount of talking, rationalization, or comfort was going to help him. But I learned when under great stress and fear, TALKING, doesn't help. Hearing someone tell you.... it's okay or everything will be alright, actually makes matters worse. I understood that for Mattie, because it is also true for me. Hearing words for me during times of crisis make me more anxious. Yet non-verbals such as eye contact and touch can truly perform miracles. Which maybe why as Mattie's treatment continued on, his level of clinginess with me increased significantly. He wanted to have my attention constantly and I could never be far, unless he was VERY distracted in an activity. 

Yet medical and psychosocial professionals DO NOT always understand this clinginess! In fact, they view it as something wrong. Which it isn't, because if you really stop to think about what we ask children with cancer to undergo, wouldn't you also need comfort and physical closeness from someone you trust? Which is why studies that highlight the importance of parents are so crucial to overall medical care! Simply said, when you empower the parent to help the child, it psychosocially helps the child and the parent. 


Read the article:

http://www.oncnursingnews.com/web-exclusives/parental-caring-behavior-matters-during-cancer-treatmentrelated-procedures-

Sunday, February 25, 2018

Sunday, February 25, 2018

Tonight's picture was taken in February of 2009. You maybe asking yourself..... what was going on here? This was what a typical physical therapy session with Mattie looked like. Nothing with Mattie was ever ordinary or typical, and this illustrates my point. Mattie's physical therapist, Anna, learned very early on when working with Mattie that she had to think outside the box. She had to be creative to motivate Mattie to want to move his body in therapy. Mattie suffered from great pain and therefore doing therapy wasn't deemed a boring activity by Mattie, but his avoidance of it was due to protecting himself from additional pain. Yet when Mattie had a team of people around him who he liked and cheered him on then he was more eager to participate in the process, and get out of his wheelchair. Pictured behind Mattie were: Jenny (his art therapist), Denise (his social worker), Jessie (his art therapist), and the last person was a physical therapy intern who worked with us only  one time. 

Quote of the day: It takes longer to recover from cancer than to be treated for it. But we have focused so heavily on treatment that we almost entirely neglected the rest of the patient's life. The rest of a patient's life is like a room with the lights out. We don't even know what's in there. There's been such little investigation and study into that. ~ Geoff Eaton (cancer survivor and executive director of a cancer non-profit in Canada)

An article came out today entitled, Childhood cancer survivors found to be at higher risk of mental illness. Ironically what this Canadian study found was exactly what Mattie Miracle has been saying all along, and that is childhood cancer is NOT JUST ABOUT THE MEDICINE. 

Researchers analyzed data from about 4,000 childhood cancer survivors in Ontario as well as 20,000 others in the general population to compare health care use. The findings have implications for mental health supports and parenting those who have survived cancer. According to the article, most children with cancer in Canada now survive (personally I am suspect of this reported FACT). But children are at greater risk of poor mental health outcomes, such as anxiety and substance abuse. Dr. Sumit Gupta, a co-author of the study and a staff oncologist Toronto's Hospital for Sick Children, was actually surprised at the severity of the mental health issues.

I always love hearing when medical doctors are surprised! Especially as it relates to psychosocial issues. As if they can't understand how such issues could possibly arise!!! Worse they haven't even prepared themselves or their patients for their possibility much less explored how to proactively mitigate them. Perhaps physicians work in a vacuum, but unfortunately for patients and families, we are deeply affected by the environment that we are exposed to during cancer treatment. 

Here are the top findings from this study:

• Among cancer survivors who were four years and younger when they were diagnosed, 131 had a severe event (from a mental health issue) during the follow-up period of the study. 
• By age 28, the cumulative incidence of a severe event such as hospitalization or visit to an emergency department for a mental health reason among this group was more than 16%. 
• The most frequent mental health issues included anxiety, substance abuse and mood disorders. 
• The researchers also found that childhood cancer survivors had a 34% higher rate of medical visits for a mental health complaint compared to the general population.
• Dr. Gupta and his team looked at some of the treatments children with cancer receive at a young age to see if the drugs triggered a reaction. The type of chemotherapy didn't pan out as an explanation. Instead, it seems like something about the experience of enduring cancer when young increases the risk of long-term mental health problems.

The last bullet point intrigues me because physicians are looking for a medical explanation for these psychological issues. As it is too far fetched for them to grasp that the experience of being diagnosed and undergoing treatment is in and of itself toxic, stressful, and disturbing. These experiences alone can trigger mental health issues and concerns. 

I single out physicians, but in all reality I am not sure I would have understood the psychosocial consequences myself if I hadn't experienced them personally. Peter and I got to watch Mattie endure months of chemotherapy and surgeries, while living in-patient. We saw Mattie transformed before our eyes from a humorous, bold, and happy child, to one that had great sadness, fears, and preferred isolation. The transformation isn't only experienced in the child. It also happens with parents. 

The study highlighted that parents become hyper vigilant while their child is in treatment. We have to, as our children rely on us for their round the clock care and to be on hand to report complications of treatment. It is very hard to go from living in this heightened state of arousal to returning back to baseline when treatment is over. Parents need support post treatment. Meaning it is hard to go from living in the cancer world, back to the real world, where cancer is not a daily threat.  

I have attached a link to the article below, so you can read it for yourself. In either case, I am very happy that the reality of cancer care is being expressed in this study. As Mattie Miracle always says...... the psychosocial issues do not end when the treatment does." Thankfully medical researchers are beginning to highlight this fact.

http://www.cbc.ca/news/health/childhood-cancer-survivor-mental-health-1.4547620