Saturday, January 25, 2020

Saturday, January 25, 2020

Tonight's picture was taken 16 years ago today. Mattie was 18 months old and as you can see he was busy playing with boxes. Which always made me laugh, as Mattie had all sorts of toys, but if boxes were around, he naturally gravitated to them. They served as the perfect building material for him!


Quote of the day: Dreaming permits each and every one of us to be quietly and safely insane every night of our lives. ~ William Dement

Why am I showing you a photo of the Vatican? Well I woke up this morning from a very disturbing dream. In fact my alarm went off to wake me up and because I was too tired, I reset it. Ironically when I fell back asleep, I picked up where I left off in my dream. My dream took place in Italy, visiting a big cathedral. Not unlike the Vatican. 

However, in my dream, I was traveling with Peter and Mattie. I could see that Mattie was healthy and wasn't dealing with cancer. Keep in mind that in real life, Mattie never visited Italy. So this is not a memory that I was building upon. 

The dream had various scenes. Almost like watching a play in a way. In the first scene, all three of us were touring a big church in Italy. We were learning about the church's history and all the different parts that comprised the religious complex. Along the tour, the guide pointed out the "funeral area." An area where they stage a body before a service is performed for the bereaved family. My brain totally made this up because I have NEVER seen such a funeral area in a church. Any case that was scene one. 

In scene two, Peter and I are walking around the church, but Mattie isn't with us. Instead, church personnel approach our tour group and tell us that many of the children we came with on tour are now dead. That they are in the "funeral area" and they advised us to go back to our hotels and get a change of clothing for our children, because these will be the clothes they will be buried in. The church implored all of us to come visit our child's body immediately in the funeral area.

In scene three, I am feeling confused because in my mind Mattie is safe and couldn't have possibly died. So I disregard the church personnel. I neither get clothes for Mattie nor visit the funeral area. At this point, I don't remember what happens. I have no memory of how we got from Italy back home to the USA. I also have no idea if I realized Mattie wasn't with us!

However, scene four, I am home. We are sitting on our couch and apparently watching a documentary on the cathedral we visited in Italy. We are both fascinated by the show because we were recounting how we just visited that space months before. The problem is in the documentary, they began talking about the "funeral area." To illustrate what the area looked like and how it is used, they show us bodies in the area waiting to be processed. When I see the bodies on TV, I realize that one of the bodies happens to be MATTIE. Unlike all the other bodies which were clearly dead, Mattie was sitting in the funeral area and he was moving around and talking. He was NOT dead, and the documentary was able to prove this to me.  

It is within scene five, that I realize I should have listened to the church personnel. I should have checked the funeral area and if I had Mattie would still be alive today. Because I did not check, the church buried Mattie. I have no idea, buried alive or whether Mattie was killed. My brain did not provide more details than this, which I suppose is fortunate, given the disturbing nature of this dream. 

I am sure someone could have a field day with this dream. I do not think it is coincidental that I should have this dream now given that I testified this week before the National Academies of Sciences on the impairments Mattie had from cancer treatment, or the submission on palliative care that I wrote yesterday. To speak and write about these topics causes me to reflect back on very difficult times, and as such these emotions are reflected in my dreams. Loss of control and the inability to prevent Mattie's death are at the top of the list. 

Meanwhile on Wednesday morning, I woke up with a sprained ankle. It has swelled to the size of a golf ball. I have no recollection how I rolled my ankle to cause this issue. Yet here I am affected. I fortunately can weight bear and walk, but I am limiting the extent of what I do. 

This afternoon, we took Sunny for a walk on Roosevelt Island. Sunny was the one who spotted two white tailed deer. 

The deer are acclimated to visitors on the Island. For the most part, they don't move, but instead watch you as you watch them. 

Can you see two deer? One is popping up her head on the right (near the log) and the other one is in the left foreground, quite visible. 

Friday, January 24, 2020

Friday, January 24, 2020

Tonight's picture was taken in January of 2006. Mattie was three years old and was sitting on this cute wooden rocking duck. It turns out this duck was Peter's childhood toy. Mattie liked the notion that he was playing with something that once belonged to his dad. So he was smiling with pride! 


Quote of the day: Some people mistakenly believe that palliative care is only for patients who are incurably ill. The goal of palliative care is to provide relief from symptoms, and stress of a serious illness-whatever the diagnosis. ~ Raymond Young


About two weeks ago, a psychologist from Children's National Medical Center (Washington, DC) reached out to me. I happen to know her as she is one of the authors of the Psychosocial Standards of Care. I can't tell you how many wonderful professionals we have met over the years, as the Standards were being developed. This particular psychologist is competent, lovely and compassionate. It turns out she has been asked to write a palliative care chapter for a pediatric cancer textbook. She was hoping to include our story within her chapter and she asked me to write a 500 word submission that  highlights Mattie's diagnosis, his experiences, and whether we had access to palliative care. In addition, I was asked to make a statement about what I believe quality palliative care looks like, who is a palliative care provider and whether this care should be offered to both children and families. 

This was actually a difficult assignment for me because of the word count. It is hard to write about Mattie and our experiences and be succinct. Not my strong suit! That said, you maybe asking yourself, what is palliative care?  

Palliative care is focused on providing relief from the symptoms and stress of a serious illness. The goal is to improve quality of life for both the patient and the family. Palliative care is provided by a specially-trained team of doctors, nurses and other specialists who work together with a patient’s other doctors to provide an extra layer of support. It is appropriate at any age and at any stage in a serious illness, and it can be provided along with curative treatment.

In a nutshell, Mattie wasn't offered palliative care. I truly believe many hospitals and families still equate palliative care with end of life care. Therefore because the word is threatening, it isn't used at all. Which is unfortunate, because anyone with an illness should have access to palliative care right from the beginning of treatment. Palliative care helps manage pain, other symptoms and provides services to enhance quality of life. Certainly all patients want this type of support regardless of their medical prognosis. 

I found this slide to show you the difference between palliative and end of life care. Mattie's treatment was intense and produced many physical and psychosocial impairments. I think if we had a palliative care team assigned to us during the beginning of our journey, it is possible that Mattie's pain, social isolation, and fear would have been better managed. 

Here is what palliative care can do! When writing my 500 word submission, I spoke about the importance of including palliative care in comprehensive cancer care. I specifically discussed the role of psychosocial providers and how they are a crucial part of the care team. Since childhood cancer is a family disease, I elaborated on the fact that the treatment team is responsible for the well-being of both the child and the family.


Here are the benefits of palliative care according to the International Children's Palliative Care Network: 

1. A child's quality of life is vastly improved when the symptoms of their illness are well managed. This may require opioids. 

2. Children's palliative care is specifically tailored to the unique physical, psychosocial, cognitive, and spiritual development of each child. 

3. Age appropriate, sensitive but honest communication with children is a cornerstone of children's palliative care. 

4. Palliative care is best when provided by a coordinated and multi-professional team, working together for the best interests of the child and family. 

Thursday, January 23, 2020

Thursday, January 23, 2020

Tonight's picture was taken in January of 2006. That day I brought two gingerbread houses to Mattie's preschool. I baked and assembled them myself. I also brought in royal icing and lots of different candies for the children to decorate the houses. It was such a fun activity that literally all four classrooms at the school got a chance to rotate in and decorate the houses. At the end of the day, Mattie got to take both houses home. You can see Mattie posing with the finished products! Mind you prior to this activity, I had NEVER baked a gingerbread house before. Mattie introduced me to many FIRSTS.



Quote of the day: A man who carries a cat by the tail learns something he can learn in no other way. ~ Mark Twain


Tonight's quote makes me laugh! I laugh and yet there is SO MUCH truth to Twain's quote. Anyone who has a cat as a pet, realizes what will happen to you if you pick your cat up by the tail. If you don't know this, then after trying it, I bet you will never forget the outcome! By analogy, I would say after experiencing Mattie's cancer first hand, I have learned lessons that others may not intuitively know. This brings me to yesterday's conference that we attended. 

We had the opportunity to hear a presentation by Dr. Kristina Hardy at  Children's National Medical Center (Washington, DC). The presentation was entitled, "Neuropsychological sequelae following diagnosis and treatment of pediatric cancer." It is pretty much understood in the cancer world, that treatments that involve radiation to the brain will produce cognitive impairments (such as lower attention span, short and long term memory issues, and executive functioning problems - organizational skills, time management, and planning). 

However, what we learned yesterday is that researchers are realizing that ALL children with cancer maybe facing these same cognitive impairments, even if their central nervous system wasn't exposed to radiation. Why? Because chemotherapy in general causes neuroinflammation and cardiopulmonary issues, which can prevent oxygen and other nutrients effectively getting to a child's developing brain. 

Given our experiences with Mattie's horrific treatment, I wouldn't be surprised if he faced these cognitive issues post-treatment. Of course we will never know, and in Mattie's case, his level of trauma and anxiety would also need to be taken into account, because to me trauma would have a direct impact on his ability to focus and his working memory. 


What also intrigued me is the younger a child is at diagnosis the more significant cognitive impairment may occur if the child received cranial radiation. Compare a child who is 12 versus 5 at diagnosis. By age 12, several skills have already been learned. The child had a longer time in school and has experienced social interactions. For children who have had cranial radiation, research indicates a 10 point decline in IQ for a child who is 5 years old at diagnosis, compared to a 12 year old (this figure illustrates what I am talking about). We also learned that there is NO known treatment to improve declines in IQ scores. So clearly the younger a child is diagnosed, the more significant the consequences. 

I took photos of Dr. Hardy's slides. This slide illustrates that children with central nervous system tumors and Acute Lymphoblastic Leukemia (ALL) typically have cognitive impacts.  

This slide caught our attention, because it mentions that cognitive impairment may occur in people with solid tumors (in other words, treatment that does not involve cranial radiation). 

This slide lists other forms of childhood cancer. Cancers that do not require cranial radiation. Yet in these cases the treatment impacts hearing and the heart which can also produce cognitive deficits. With the heart, nutrients aren't getting to the brain, and with hearing.... if you have trouble hearing what is being said to you, this will directly lead to cognitive challenges and difficulties. 

Look at this graph. The top arrow points to the expected cognitive development of a child. The bottom arrow applies to the same child, except it shows the decline in cognitive development after being diagnosed with cancer. I think this whole notion is frightening, because it shows the long term ramifications of cancer on a child. In essence the treatment permanently alters a child's potential in life. This has huge consequences for the entire family. Which is why there really is NO cure for childhood cancer. How can there be, when children are left with such devastating consequences. They may have no evidence of disease as the medicine beat back cancer, but it comes at a high price to one's overall long term quality of life. 

Wednesday, January 22, 2020

Wednesday, January 22, 2020

Tonight's picture was taken in January of 2005. Mattie was two and half years old and was invited to a birthday party. As you can see his trusty sippy cup was in tow. We never went any where without a sippy cup. Mainly because Mattie wasn't interested in water or juice, but milk. My joke was he was going to have the strongest bones around. I would never crossed my mind that Mattie could be diagnosed with bone cancer. Also note that this photo shows that Mattie ate some of the cake. Another rarity as Mattie wasn't into sweets. Yet if this had been a chocolate cake, the entire slice of cake would have been remaining on his plate. 




Quote of the day: The world as we have created it is a process of our thinking. It cannot be changed without changing our thinking. ~ Albert Einstein

In 2010, Mattie Miracle received a case of Pork Barrel BBQ sauce. Frankly when we received this big box, I wasn't sure what to do with it. I knew it was donated to us so I decided to feature it at the Foundation's raffle which was held at our FIRST WALK in May of 2010. After the event was over, I wrote a thank you note to the donor of the BBQ sauce. 

The donor was Brett Thompson, who was the co-founder of the company (https://www.dailysignal.com/2015/06/21/sick-of-political-pork-two-former-hill-staffers-launched-10-million-bbq-business/). Brett wrote back to me and suggested that we meet. I figured that he had an idea for a BBQ fundraiser. It never dawned on me that he was a lobbyist and wanted to work with us pro-bono. 

Brett learned about Mattie's story and the Foundation through a local business listserv. By the time we met with him, he was very familiar with this blog and our message resonated with him. So much so that he worked closely with us for several years. It is Brett who inspired me to branch out and host the FIRST ever psychosocial symposium for childhood cancer on Capitol Hill in 2012. Believe it or not, back then the discussion of psychosocial care and cancer were NOVEL! Most advocates were solely focused on the medicine and drug development. We had a new message, and as you know NEW and different aren't always celebrated. 

From this Symposium, we tasked the researchers in attendance to create an evidence based Psychosocial Standard of Care. The rest is history. However, I am not sure we would have gotten to where we are a decade later, if we never held this Symposium. Which is why I feel Brett is a good coach for me. 

A few years ago, we asked Brett to serve on the Mattie Miracle board. Today we went to visit him at his office because he wanted a strategy session with us. For a while now, board members have encouraged me to think bigger. That the potential of Mattie Miracle is even larger and part of me doesn't want to hear it. I don't want to hear it because at times I can't handle more work and if we grow larger, my fear is that the focus moves away from Mattie. Today, Brett was able to reframe what growing larger could mean and we talked about ways to begin working toward this goal. Of course Peter's mind is already up to speed with what Brett is proposing and I on the other hand, need to absorb the information and take it step by step. 

Changing my thinking is no easy process or task. But like so many difficult conversations in my life, I can only hear such topics from certain people. People I deem trustworthy and having the best interest of the Foundation in mind. It took me ten years to get the Foundation up and operational, and to the place it is today. For ten years we have focused on DOING and as such, our reputation was built. It was built based on our accomplishments. Of course our next ten years will also be action oriented but at the same time it is important to bring more awareness of what we do and what we plan on doing. It is with these next strategic steps that Brett and his team will be helping us. 

Tuesday, January 21, 2020

Tuesday, January 21, 2020 -- Mattie died 538 weeks ago today. 

Tonight's picture was taken in June of 2009. This was what Mattie looked like after his third surgery, which was for a sternotomy. Mattie's chest had to be opened up so that 9 lung tumors could be removed. Whether I post this photo or not, this vision of Mattie after each surgery is permanently etched into my mind. Not to mention the sounds of pain, frustration, and hopelessness. You don't forget this as a parent, and I carry each and every experience we had with Mattie into my advocacy work.  





Quote of the day: Though 11 million American children have special health care needs, few meet Supplemental Security Income's (SSI, through the Social Security Administration) strict eligibility standards - either because their disabling conditions aren't severe enough or because their families' income and savings exceed the program's low limits. Indeed, just 1.7 percent of all children receive SSI benefits. To qualify for SSI, a child must have a very serious condition that is backed up by medical evidence. ~ Kathleen Romig (https://www.cbpp.org/research/social-security/ssi-a-lifeline-for-children-with-disabilities)

We spent the day with the Committee on Childhood Cancers and Disability at the National Academies of Sciences, testifying on the functional impairments of childhood cancer, and providing input to the Social Security Administration. We are helping to shape policy!

Peter and I attended the entire committee meeting today from 9:30am to 4:30pm. It was a great experience for us, as we got to hear speakers from Dana Farber, Children's National Medical Center, St. Jude, and Children's Hospital Los Angeles. 

The committee asked me to serve on a panel, to give voice to a child and family's experience with cancer. Particularly focusing on how childhood cancer produces impairments (physical and psychosocial) in children and how these impairments affect overall functioning and qualify of life. 

How did the committee find out about me? Well three authors of the Psychosocial Standards of Care serve on this committee. This is Barbara Jones. Barbara is the Associate Dean for Health Affairs at the University of Texas at Austin in the School of Social Work. We have known Barbara since 2013, when we held the first think tank on the Psychosocial Standards at a national conference. Barbara served as the panel moderator today. 

Me with Megan Elam (Director of School Services at Cincinnati Children's Medical Center) and Stacia Wagner (President of the Children's Brain Tumor Foundation). All three of us presented along with Dr. Greg Aune (who called into the meeting). Greg is a childhood cancer survivor and a pediatric oncologist. He has a very powerful story about the long term physical and psychosocial consequences of cancer. 

I will highlight some of the lessons learned from today's meeting in future blogs. As we found some of the cutting edge research presented quite impactful. 

Below are my slides. I was asked to talk 7 minutes total. So I had to be brief. In that time, I had to illustrate who Mattie was, his impairments, and the long term consequences on him and us. 

After we all presented, the committee of 16 people got to ask me and the panelists questions. I honestly did not think medical doctors (who comprised much of the group), would ask me questions. However, not only did they ask questions, their questions were substantive and very thought provoking. As I can see they grapple with how to tell families about psychosocial issues, about discussing long term disabilities, and other life altering conversations. Mind you, the system sets up these clinician for failure, because there isn't enough time allotted for them to spend with each patient. 

My first slide told them a little bit about Mattie and his experience. Highlighting that Mattie did not have these mental health issues prior to cancer and that after three months into treatment Mattie NEVER walked again. So as parents were were faced with childhood cancer and profound disabilities. 

This slide focused on the physical impairments and their impact. I specifically wanted to show photos to get my message across. 

But for Mattie, I would say that the psychosocial impairments almost outweighed the physical ones. They were also very intertwined because Mattie's physical disabilities impacted his mood and how he felt about himself. 

Briefly talked about the Foundation and the important role psychosocial providers play in assessing and treating functional impairments. 

Naturally I couldn't end my talk without mentioning the Psychosocial Standards of Care. My hope is that the Standards are specifically addressed in this report to the Social Security Administration. 

Needless to say, as I sat on the panel, my initial though was..... what am I going to share with these professionals and researchers? After all my story isn't about the data, it is personal and on-going. Yet I found the committee was listening and truly interested in our lived experience. Any time, I can share Mattie's journey and potentially change the way care and support are provided, I view it as a good day. 

Monday, January 20, 2020

Monday, January 20, 2020

Tonight's picture was taken in January of 2005. Mattie was two and a half years old and as you can see I wanted him to pose for a photo of us by our Christmas tree. I have no idea where we received the Happy New Year's hats. I most likely saved them from an event we went to before Mattie was born. Despite my best attempts to get Mattie to take a New Year's photo, it never happened. I think Mattie's face says it all on how he felt about my photo request!







Quote of the day: Lucky is the spouse who dies first, who never has to know what survivors endure. ~ Sue Grafton

On January 20th, I always post a tribute to my maternal grandmother. She died on January 20, 1994, at the age of 86. My grandmother lost her husband to colon cancer (when she was in her 50's) before I was born. By the time I came along, my grandmother was already living with my parents. So to me a multi-generational household was normal. 

This photo was taken at my grandmother's surprise 80th birthday party. Pictured with her was my mom's friend Marian and Naomi, my lifetime friend's mom.

This photo was taken probably when I was around 10 years old. It had snowed and my grandmother and I went outside to shovel. In tow was our collie, Heidi. 

A photo of me shoveling with grandma. She had to be around 72 years old in this photo, but she was sturdy, believed in doing things herself, and loved all creatures big and small. 

Facts about my grandma:

1. She was born in 1907, in New York. 
2. Both of her parents were born in Italy. 
3. She was the oldest of five siblings.
4. She married at the age of 16. Her husband was born in Italy and was a contractor for commercial and residential properties. 
5. She had three children. Her middle child died. 
6. Though she did not work outside the home, she had numerous skills. Cooking being at the top of the list. 
7. She was a born caregiver and cared for everyone in her family. 
8. She sponsored many family members to come to America, and is in essence responsible for their successes and improved quality of life. 
9. She was a kind, gentle, caring, and loving person. With a very easy going personality. 
10. She had two grand-daughters, but we shared a very close bond. As I was known to call her "mom."
11. Her favorite color was green. 
12. She introduced me to Days of Our Lives at an early age. To this day, I still watch it. 
13. She played the piano by ear. 
14. She wasn't a fan of chocolate (not unlike Mattie).
15. She wasn't squeamish. She could handle everything from mice to seeing blood. 
16. She did not know how to drive. 
17. She loved to read and was well informed about all current events. 
18. She was a Bob Hope and Bing Crosby fan. As a result, I have seen all the Road to.... movies. 
19. She loved lily of the valley flowers. 
20. She suffered a massive stroke in 1990, which left her physically disabled. She died 4 years later.  

Sunday, January 19, 2020

Sunday, January 19, 2020

Tonight's picture was taken in February of 2008. Mattie was 5 years old and was walking with us on Roosevelt Island. It was not unusual for us to walk the Island almost every weekend, regardless of the weather. I also never went to the Island empty handed, as I knew Mattie loved to feed the duck. So there was always bread in tow. 


Quote of the day: Anything is good if it's made of chocolate. ~ Jo Brand

We have been invited to a friend's house  tonight. I typically don't like coming empty handed to someone's home, so I asked what I could bring. I gave a list of possible items and my friend picked the chocolate cake. After all who doesn't like chocolate, especially on a cold winter's day? Of course this is a rhetorical question really, as Mattie hated chocolate. He did not like its color and he especially disliked its smell and taste. 

I can't recall when I first made this chocolate cake recipe. What I love about it is that it is super simple and yet delicious without being sickly sweet. I have learned over the years that the quality of the cocoa you bake with makes a huge difference! As I could repeat this recipe with a different cocoa and it could taste completely different!

Not unlike weekends with Mattie, weekends with Sunny involve outdoor time and walks. Sunny loves Roosevelt Island, so this was his treat today. I can't tell you how many dogs were out and about with their owners. Sunny is super social and he wanted to meet and greet every pooch who passed our way. 

Check out what Sunny spotted on a tree.....................

A huge hawk! It was a funny feeling watching this bird, because I got the distinct feeling he was staring right back at us.