Saturday, October 26, 2019

Saturday, October 26, 2019

Tonight's picture was taken on Halloween of 2002. It was Mattie's first Halloween and though he had no idea what was going on, I decided to snap a photo of him next to our pumpkin. Frankly I think the pumpkin weighed more than Mattie!


Quote of the day: A wonderful gift may not be wrapped as you expect.
~ Jonathan Lockwood Huie


As I know Halloween is fast approaching, I am trying to address all sorts of big Foundation issues ahead of time, because once candy starts coming in, I am inundated for two weeks. Do not ask me how I can sit at the computer for hours and create logos for our Walk t-shirt, a new design for the 2020 Walk, not to mention write some sort of greeting to deliver at the upcoming Fall Event that "Friends of Mattie Miracle" are hosting for the Foundation. In some ways, it feels like the lost day. But I have many of these kind of days, because we have no staff. Anything that gets done for Mattie Miracle typically comes from me. Which can be wonderful but it is also daunting. 

The highlight of the day however, is a phone call Peter received from a mutual friend this morning. We have been friends sine 2007, as his daughter is Charlotte, and Charlotte was Mattie's "girlfriend." In any case, Peter was invited to attend the World Series game tonight. Totally a remarkable invitation, since we know that standing room tickets are going for $1,000 a ticket. In any case, I am happy Peter can get out with a good friend and see something he loves.... baseball. Of course, I can't help but wonder what would have happened to Mattie and Charlotte's relationship if he remained alive. As they both were convinced they would go to college together, be roommates, and even marry. It was a special friendship that I won't ever forget. As they gravitated to each other on the FIRST day of kindergarten and Charlotte remained a faithful friend throughout Mattie's cancer journey. Which is no easy feat, since visiting a child with cancer in the hospital is not for the meek. But Charlotte not only visited Mattie, she did it with love, patience, and deep understanding. So I remind myself that Peter and Charlotte's dad became and stay connected because of the beautiful friendship our children shared. 

Friday, October 25, 2019

Friday, October 25, 2019

Tonight's picture was taken on October 27, 2007. Mattie was invited to a Halloween party hosted by a preschool family. By that time, Mattie and his friends were in kindergarten and attending different schools. Yet this wasn't just an ordinary preschool. It was a community that bonded children and their families with one another. In this particular picture you will see Mattie and his friends trying to turn me into a mummy. That was me covered with toilet paper on the floor. They were part of a contest, as there was another mom on the floor also being wrapped. 


Quote of the day: Disappointment is a sort of bankruptcy - the bankruptcy of a soul that expends too much in hope and expectation. ~ Eric Hoffer


I think cancer is the type of disease that when you look at it in whole, you can feel dejected and think..... what on earth can I do about it? How can I help or make an impact on those affected by the disease? Because in all reality, one organization can't meet all the demands in our society! A rather sad commentary, since that means there are too many children and adults diagnosed each day. 

There are days when I feel Mattie Miracle is doing a great job, and days where I think..... it's like trying to hold back the ocean. Yet, I continue on realizing that what we do does have ripple effects within our community. Which is why we have been committed to developing evidence based Standards of Care as well as finding ways to implement these Standards at the 200 cancer treatment centers in the USA that focus on children. 

Within the last two weeks, we have awarded $15,000 in continuation grants. These are follow up grants to the researchers we began supporting in 2018. The reason we are passionate about supporting their work is because one researcher is generating an evidence based tool to help reduce stress in parents and caregivers of children with cancer. The other researcher is designing a blueprint to screen, assess, and provide psychosocial care to siblings of children with cancer. You would be surprised by the lack of attention and support siblings are provided at our health care centers. There are many reasons for this oversight: 1) a sibling is not the intended patient in a hospital setting, 2) siblings are not always present in the hospital and therefore aren't available to receive support, and 3) how does a hospital get reimbursed for providing care to a sibling? These are vital questions that need to be answered and we are honored to be able to support research that has direct clinical practice. 

Thursday, October 24, 2019

Thursday, October 24, 2019

Tonight's picture was taken on October 20, 2007. Mattie spent the day at this school's Fall Festival and came home with his face painted, hands with kid tattoos and all smiles. I will never forget snapping this photo or the memories we made on the school field with his new found friends. It seemed like just the beginning for us. Never realizing that childhood cancer was going to be introduced to our lives 9 months later.








Quote of the day: Disappointments are to the soul what a thunderstorm is to the air. ~ Friedrich Schiller


Today I went to Mattie's hospital to push one of our Snack and Item Carts around the pediatric units. Since Mattie died, his medical home has undergone all sorts of changes. Starting with a change in leadership! If you think one person can't affect a whole system, you are wrong. I have witnessed this first hand, with the leadership of the pediatric oncology program changing at the hospital, there has been a mass exodus of talent and patients. So much so that it doesn't seem or feel like the same place we lived for 14 months. I view this as another addition to our LOSS column, as the institutional knowledge of who knew Mattie is practically all gone. 

Certainly the families I met today are very grateful for the Cart. One mom, who has been in-patient with her child for a long period of time told me she has wanted to meet me, to thank me personally for the cart. The cart makes her happy. I know when parents look at me now, they view me as an outsider who can't possibly understand what life is like for them. But of course I get it all too well and I know how receiving food, snacks, and items while living in a hospital setting is like winning the lottery. 

Switching gears, someone sent me the article below from the Washington Post Health Section. I think it should give you pause when reading it, as it is hard enough having to be a patient, but imagine if you are hospitalized and your doctor or nurse is burned out from the work? I would go a step further and say this article applies to everyone working in a hospital setting, as I remember administrative staff, radiology staff and countless others we met when Mattie was hospitalized who truly forgot WHY they entered the helping profession to begin with. The problem with this is patients are vulnerable and we rely on our providers to be fully on, fully engaged, and fully with it when making decisions about our care. I have no answers for medical burnout, but I do know that no one should enter a hospital system, regardless of age, without a family or friend advocate. If you doubt what I am saying, read the article below! 


Health-care system causing rampant burnout among doctors, nurses. by  William Wan

Imagine a health-care system in which doctors and nurses are so exhausted and beaten down that many of them work like zombies - error-prone, apathetic toward patients and at times trying to blunt their own pain with alcohol or even suicide attempts.

That is what America's broken health care system is doing to its health workers, according to a 312-page report released Tuesday by the National Academy of Medicine, one of the country's most prestigious medical institutions. The report found that as many as half of the country's doctors and nurses experience substantial symptoms of burnout, resulting in increased risks to patients, malpractice claims, worker absenteeism and turnover, as well as billions of dollars in losses to the medical industry each year.

"It's a moral issue, a patient-care issue and a financial issue," said Christine K. Cassel, professor of medicine at University of California at San Francisco, who co-chaired the committee of experts that wrote the report. It is alarming and tragic, she and other committee members noted, that the system is hurting the very people we have put in charge of healing us as a society.

In recent years, as the medical community has grown increasingly alarmed over the problems of burnout, the proposed solutions have focused on increasing the resilience of individual doctors and nurses. "What this report is saying is that this is a systemic problem that requires systemic solutions," said Cassel, a former president of the American Board of Internal Medicine. "You can't just teach doctors meditation, yoga and self-care. We need big, fundamental changes."

The committee's experts - which included doctors, nurses, health executives and leaders in bioethics, neurology and pharmacy - spent 18 months wading through mountains of research on clinician burnout. They found that between 35 and 54 percent of nurses and doctors experience burnout. Among medical students and residents, the percentage is as high as 60 percent.

Symptoms, they said, include emotional exhaustion, cynicism, loss of enthusiasm and joy in their work and increasing detachment from their patients and the patients' ailments. The problem has been linked to higher rates of depression, substance abuse and suicide. The suicide rate among physicians, for example, is twice that of the general population and one of the highest among all professions.
Health-care workers are especially prone to burnout, the report found, because of the workload, pressure and chaos that they deal with each day. As the country's health-care system has become increasingly dysfunctional, the bulk of that dysfunction has landed on them - resulting in long hours, mounting paperwork and bureaucratic hurdles, fear of malpractice lawsuits and insufficient resources.

The problem often starts with a well-intentioned, perfectly reasonable law, explained co-author Vindell Washington, chief medical officer at Blue Cross and Blue Shield of Louisiana. That is turned into a regulation, which is interpreted and made into a policy, often taking the most conservative path possible for legal protection. "At every step, the original intent gets a little misinterpreted or picks up an unexpected effect," Washington said.

A law about patient privacy, for example, becomes a quirk on a doctor's terminal that ends their sessions every few minutes, requiring them to repeatedly log in throughout the day - adding frustration and burden to their days. Complex regulations on hospital reimbursement gives rise to a long list doctors must tic through in physical exams, even as they try to figure out what's ailing a patient, so hospitals can charge more or less based on the exam's complexity. "The problem is we're not workers in a factory making widgets," Washington said.

"It's incredibly inefficient, and the workload is unsustainable," said Liselotte Dyrbye, a doctor and researcher at the Mayo Clinic. "The system is built for billing and not taking care of patients."
Burnout is also expensive. One study cited by Wednesday's report, for example found it costs the medical system $4.6 billion a year. Some of that cost comes from doctors reducing their hours, quitting their jobs or leaving medicine altogether. With each doctor affected by burnout, the estimated average cost to the medical industry in America is roughly $7,600. Those numbers did not include the costs of increased medical errors, malpractice lawsuits and other doctors' having to pick up their burned-out colleagues' work.

That financial incentive is imperative, because alleviating burnout will require significant buy-in from federal regulators, insurance companies, medical schools and the country's health-care systems.
Wednesday's report outlined a hefty list of needed changes:

• Health-care organizations should create executive-level chief wellness officers to monitor and protect clinicians' well-being and develop IT programs to reduce repetitive and redundant paperwork.
• Medical and nursing schools should train students to deal with burnout. Federal and state regulators should identify and eliminate overlapping regulations.
• Medical licensure agencies should find ways for doctors to seek help without having it used against them, such as in malpractice litigation.
• Federal officials should develop a coordinated research agenda to understand the problem and how to alleviate it.

Wednesday, October 23, 2019

Wednesday, October 23, 2019

Tonight's picture was taken on October 6, 2007. Mattie was five years old. By that point, Mattie had been attending Fall Festivals since he was one and a half years old. It was a turning point year, because Mattie wanted to go down the slides by himself. In prior years Mattie either refused to go near the slide, or went down sitting on Peter's lap. Back then this seemed like such a milestone, such an accomplishment of courage. Little did we know that the real testament of courage was in store for us 9 months later. 






Quote of the day: Let me tell you this: if you meet a loner, no matter what they tell you, it’s not because they enjoy solitude. It’s because they have tried to blend into the world before, and people continue to disappoint them. ~ Jodi Picoult


I love Jodi Picoult's quote. It is so applicable to my feelings today. Not to mention that I love most of her fiction books, for the depth of research on topical areas and her wonderful character development. So what has gotten me so disappointed today? After all, how could I be disappointed when we were just interviewed by a camera crew on Monday for a documentary? All excellent questions, but I would say the pure honest answer is CHILDHOOD CANCER. Mattie maybe gone, but the psychosocial ramifications are alive and well within me. 

A few weeks ago, a local high school reached out to me and asked if we would speak at their Faces of Cancer Day. A new concept the school was launching this year to bring real world cancer issues to their students. In fact, the school wants to inspire students to pursue a career in the sciences and felt that students would respond better to those of us engaged in care. Basically to put a human spin on science. Certainly a noble proposition if well planned. However, I was hesitant to participate because I did not feel the school had truly devoted the appropriate time to host such an important event. 

With that said, I agreed to participate, because I have some crazy notion that I will get through to high school students, so much so that they will want to get involved in Mattie Miracle activities! However, on some level I do know better. The coordinator of this event, invited us to listen to the keynote speaker of the day. He is a well known medical doctor at a major cancer institution in our region. Certainly aspects of his 45 minute presentation were fine, but overall, I felt that he should have stuck to the medicine and NOT given us his skewed perspective on our health care system. Or better yet not giving students the full picture of how he is compensated (a questions asked of him), as he made it sound like he was directly paid by each patient he treated. Which I know is NOT the reality! So the keynote speaker set me off, and then I went into our break out session in this state. 

But it got better. The coordinator told me that the whole high school was going to be participating in this event. Not exactly! Try just the 11th grade. Then she told me to prepare for TWO-20 minute sessions! When I got there, I found out from a student (not the coordinator) that there was going to be only ONE-45 minute session. This may not sound like a big deal, but to me, as a professional educator, I think it is common courtesy to tell your speakers the correct information. Mind you, speakers were NOT allowed to bring in computers, videos, or powerpoint! A major problem when trying to educate children of the technology age!

The keynote speaker talked about ADULT cancers only. In fact, on his bar graph of various cancers, cancers in children weren't even mentioned! They were no where to be found..... maybe they don't exist!????? Peter and I managed through our 45 minute session, but all I can say is wow. There were 6 break out sessions today, in which we were one of them. Students were assigned to sessions, they did not get to select a session based on the topical area of interest. That is problem number 1! How do you engage a teenager who doesn't want to be there to begin with?!

But what bothered me was I know this age group responds to media. Especially on the topic of childhood cancer. Not being able to actively show them visuals of what we were talking about and what we do, really limited us. At the end of the day, what I found fascinating was that no one in the room even said to us..... we are sorry to hear of your son's death. That to me isn't an age specific response, but a human response. So as Jodi Picoult points out about loners.....It’s because they have tried to blend into the world before, and people continue to disappoint them. Totally get it, as after today's experience, I don't want to be around anyone!

Tuesday, October 22, 2019

Tuesday, October 22, 2019 -- Mattie died 525 weeks ago today. 

Tonight's picture was taken on September 30, 2007. Mattie was five years old and had just completed his first month of kindergarten. I would have to say that by 5, everything started coming together for Mattie. By that point his sensory integration issues were well managed, his speech issues had resolved themselves and he was happy at school and making friends. Unfortunately this was short lived, because by that summer, Mattie was diagnosed with cancer. 


Quote of the day: Time is a free resource. ~ Sunday Adelaja



Last night, I was contacted by the president of a larger childhood cancer non-profit. She alerted me that her organization was going to host a webinar today about the vincristine shortage that I reported about in last Thursday's blog. Keep in mind that vincristine is part of the standard of medical treatment for lymphoma, leukemia, and brain tumors. As you can imagine, with parents reading in the NY Times that this chemo drug is in short supply, panic, fear, and medical trauma has ensued. Rightfully so! I would say the fear goes beyond just the vincristine shortage, as parents begin to connect the dots.... if this can happen with one drug what prevents it from happening with another? A valid question.

In any case, the president of this organization reached out to Mattie Miracle, because she views us as the authority on psychosocial issues. I did not pay much attention to that notion last night, as I really was focused on answering her question. But wow, no? Look at how far we have come in ten years! In essence people wrote in questions to hear that they wanted answered today on the webinar. She floated the psychosocial question by me and wanted me to write a response and also provide resources. 

The question posed was....This situation (the vincristine shortage) is very stressful for me and my family.  Are there psychosocial resources that might help us to cope? My response:

I think parents and caregivers should consult the child's health care team about this issue. The team is the appropriate first place to start. As it is vital that the team hear all family concerns and observations about the child. No one knows the child better than the family and medical personnel rely on this knowledge to help direct care. Since you are looking for specific resources to help children and families cope, I want to introduce you to the Center for Pediatric Traumatic Stress (CPTS). The Center for Pediatric Traumatic Stress (CPTS) was founded in 2002 to address medical trauma in the lives of children and families. CPTS is located at two of the premier children’s hospitals in the country: The Children’s Hospital of Philadelphia and Nemours A.I. du Pont Hospital for Children. Your community already knows one of the founders of this Center, Dr. Anne Kazak (who sits on the Mattie Miracle Scientific Advisory Group). CPTS offers an excellent evidence based website that provides outstanding psychosocial materials and resources for the entire healthcare team, including families. 

I shared multiple website links that I thought would be of value! I heard back today that these links will be circulated to everyone on the call and perhaps will also go into an on-line repository. I was pleased to hear that we could help. If interested, the links are below. CPTS is an excellent resource and Mattie Miracle is honored to serve on the family advisory committee of CPTS. 

Website for CPTS: https://www.chop.edu/centers-programs/center-pediatric-traumatic-stress
Coping with Stress Reactions: https://www.healthcaretoolbox.org/for-parents-and-children.html
Managing worries and fears: https://www.healthcaretoolbox.org/for-parents-and-children.html
Helping your child cope, what parents can do: https://www.healthcaretoolbox.org/images/pdf/AttheHospitalHelpingMyChildCope.pdf
Rate your child's reactions (though the word "injury" is used on this rating form, this form is applicable  to identifying traumatic stress in a child with cancer): https://www.aftertheinjury.org/quick-quiz

Monday, October 21, 2019

Monday, October 21, 2019

Tonight's picture was taken on October 6, 2007. We took Mattie to Butler's Orchard, to go on a hayride. The hayride took us to the pumpkin patch, where Mattie could pick his own pumpkins off the vine. As you can see from the wagon ride back, Mattie was very successful pumpkin picking. 


Quote of the day: No legacy is so rich as honesty. ~ William Shakespeare


A few months ago, we were contacted by a member of the childhood cancer advocacy community. She had connected with a film producer in New York and has been raising money (NOT FROM THE CANCER COMMUNITY) in order to create a 7 part docuseries on childhood cancer. The target audience for this video series is people unaffected by childhood cancer. 

Given my experiences working with other childhood cancer organizations, I felt I had to do my due diligence with this request and truly get to understand the motives and intentions of those creating the film. Mainly because I have seen films created by other groups which I have found counter productive and also exploitative in nature.

Today we had the opportunity to meet the film producer, Kristi Gatto, and her team.... Brandon and Maria. 

From left to right: Brandon, Kristi, and Maria


About Kristi's company:
http://riskitproductions.com/thepromise

The Video Series is entitled, the Promise:
https://www.thepromisedoc.com/

The crew loved our home and felt that doing the photo shoot in front of the picture window would be perfect. I call this window.... "my window with a view."

Maria caught us smiling. But given the content we were talking about, there wasn't much smiling. We did this interview NOT knowing the questions ahead of time. Which can be nerve racking. Of course prior to meeting Kristi, I sent her photos of Mattie pre-cancer and with cancer. In addition, she asked for video clips of him while on treatment. So there was homework ahead of time, which I think was helpful to Kristi and her crew. 

The nature of our portion of the video series was to discuss the psychosocial issues that arise from a cancer diagnosis. Kristi particularly wanted my insight on this as she knew I am a licensed mental health counselor. I explained how Mattie's mental health issues were discovered by me and how I went about getting the help Mattie needed for his depression, anxiety and medical traumatic stress. Of course we linked all of this to Mattie Miracle and our vision for the Psychosocial Standards of Care (which is the publication Peter was holding in his hands).

Kristi asked us about 10 questions. I have to admit that some of the questions were challenging.... such as: 1) What do you want people unaffected by childhood cancer to know about the disease and our journey, and 2) What would I like to personally say to the friends in my life who walked away from us?

The second question required a lot of mental censorship on my part. Because the immediate response wouldn't have been nice or kind to hear. But overall, I spoke to the fact that walking away from a long term friendship because of childhood cancer, leaves a mom with two losses (the loss of having a child diagnosed with cancer and the loss of a friendship and feeling abandoned). In addition, I explained that our support community is vital to our existence because they help us keep Mattie's memory and legacy alive. I tried to put a positive spin on the fact that I lost friends I had for over 15 years. Which in reality is HARD to understand and justify. 

The crew was wonderful and very patient. As we live right near Route 66. So you can hear ambulances, traffic, and helicopters constantly. Each time one of these vehicles came by, we had to stop taping! Which was challenging for me, because sometimes I was in mid-sentence and would have to stop talking. 

Meanwhile the hit of the day was Sunny. He made friends with the entire crew.


Pictured here from left to right: Maria, Brandon, Vicki, Peter, and Kristi

Sunday, October 20, 2019

Sunday, October 20, 2019


Tonight's picture was taken 12 years ago today. Mattie was five years old and was attending a weekend Fall Festival. How do you like this gigantic slide? You can see Mattie and Peter going down it together. The funny part about all of this was Mattie at one time was very scared of all slides. Even the small ones in playgrounds. However, with a lot of coaxing and support, he eventually got use to them and then did a complete 180. He grew to LOVE them and he would want to slide down them multiple times! 




Quote of the day: Some people feel the rain. Others just get wet. ~ Bob Marley

For the past four days, Peter was in Boston visiting his parents. While he was away, I had full time animal duty. As you can see from this photo.... life is hard for Indie and Sunny. But who says cats and dogs don't get along? 

Sunny and Indie have a great relationship and have no problem sharing our living space. However, this photo shows Sunny resting up, until I was dressed and ready to take him on a long walk. He may look like he was sleeping, but he was listening to my every movement. 

When one of us goes away, Sunny becomes hyper anxious. In fact, any change in routine sets his delicate balance off completely. Yet while Sunny is a handful, Indie is a peach. She is so calm and loving. This was where she was last night..... right near my feet. 

Meanwhile, this is what I woke up to this morning. I literally turned around and found Sunny where Peter's pillows used to be. This is a very strategic move, because this way if I get up, he can keep his eyes on me and I won't forget to meet his needs. Not that I would, but his anxiousness takes over. 

It was a non-stop rainy day today. As a dog owner one learns to walk in all sorts of weather, but I have to admit I don't like the rain. When Peter got home today, we sat down and reviewed the week ahead, as we are busy with people interviewing us, presenting at a local high school, and meeting leaders of a big professional association.