Saturday, February 1, 2020

Saturday, February 1, 2020

Tonight's picture was taken on February 5, 2009. Mattie was in the child life playroom and sitting next to him was Sally. Sally was "the story lady!" Mattie loved Sally and no matter how sick he felt, he never turned down a visit from her. When Mattie wasn't well enough to go to the playroom, she came into his room. With her stories and props she could transform any environment. Mattie would eagerly play along and she truly brought moments of happiness to both of us. 


Quote of the day: Baking may be regarded as a science, but it's the chemistry between the ingredients and the cook that gives desserts life. Baking is done out of love, to share with family and friends, to see them smile. ~ Anna Olson

We took Sunny for a walk on Roosevelt Island today. Something we did practically every weekend with Mattie. Mattie loved it and so does Sunny. The beautiful part about the Island is that it is just minutes from us and though it is surrounded by city, it is a wonderful wooded space that makes you feel more serene. 

There were deer out and about! Can you see the one in the middle of my photo? Sunny loves spotting deer and I am sure if he was off leash, he'd be chasing them. 

See what I mean? They were everywhere! These deer are clearly used to the presence of people, and for the most part they watch us and we watch them. 

This was a baby deer. She caught my attention. Apparently next to her was her mother. I did not see the mother, but Peter did. This would have been a total Mattie moment, as he loved seeing animal moms with their babies. Whenever he saw such a pairing, he would say to me.... that's us!

Meanwhile, we have been invited to a Super Bowl party tomorrow. Which is hysterical because I despise football and truly am not a sports person. It doesn't interest me in the least. But my friend says the game will be playing in her basement area and those who don't want to watch the game will be in the family room. 

We were asked to bring cookies. I debated about whether to buy them at a bakery or bake them myself. Certainly buying them would have been easier, but to me there is something special about making them yourself. After looking at the prices of cookies in our local bakeries, I decided.... I am definitely baking! Today we made two dozen macaroons and three dozen chocolate chip cookies. 

I am still stunned by what I learned. If I wanted to purchase two dozen macaroons and three dozen chocolate chip cookies (from a bakery, not a grocery store), I would have paid over $100. Clearly I have missed my calling, as I should set up shop and bake cookies all day! 

Friday, January 31, 2020

Friday, January 31, 2020

Tonight's picture was taken on January 31, 2009. Hard to believe 11 years ago today, when it seems like yesterday. We took Mattie out to lunch with my parents. Ironically prior to getting cancer, Mattie never wanted to sit still at a table and eat. However, given the disease and how it limited his physical abilities, Mattie had to learn to do sedentary things. He may have been sedentary, but that did not mean his brain and personality were inactive. On the contrary, Mattie was always on and engaging!


Quote of the day: Moving doesn't change who you are. It only changes the view outside your window. ~ Rachel Hollis


Though tonight's quote maybe true, I do think we are influenced by where we live and what surrounds us. As we move from one place to another, we are exposed to different thoughts, people, and experiences (good and bad) and they influence who we are and who we can become. For example, I will never forget moving from New York to California when I was entering 10th grade of high school, I was 14 years old. Funny how a grown adult can remember the experience of a move, but I do, as I never fit into life in California and as such, there were challenges that I had to overcome. In fact, I learned first hand how difficult it was to enter a school in which most of the kids knew each other since kindergarten, gave me insights into how to treat people. I never like to see someone ostracized or sitting alone, if they want to be part of a group. I learned that act of inclusion the hard way, when such kindness was not shown to me. 

After high school, I moved back to New York. Upstate NY, to be more precise, to attend college. The view outside my dorm window was quite different from California. As upstate NY was cold and we even experienced snow in October. I will never forget seeing this first snowfall in my freshman year of college. However, to me moving is much more complex than your visual surroundings. It was within college that I joined choir and through that activity I met Peter. My point being that when the view outside your window changes, chances are the view inside your room does too. 

I could go on and on with my experiences on moving, but I guess the bottom line is our surroundings are much more than just our view. Our surroundings define us because within those surroundings are our friends, colleagues, and neighbors. It is people and our experiences with them that influence our feelings, attitudes, and thoughts. 

Thursday, January 30, 2020

Thursday, January 30, 2020

Tonight's picture was taken on January 14, 2009. Mattie was in NYC to receive his first dosage of experimental treatment. Before treatment began, we asked Mattie what he wanted to see in the City. We gave him options and he chose to go up the elevator of the Empire States Building. Mattie grew up in Washington, DC where there is a height cap on the buildings! So to Mattie, NYC was fascinating with skyscrapers everywhere! We went to both observation floors of the building and Peter snapped this photo of us at the 102 floor!


Quote of the day: Improvements in cancer treatment have led to increases in the childhood cancer survivor population. Many survivors are at risk for serious late effects from their cancer treatment, including second cancers, cardiovascular disease, and respiratory problems. ~ Jennifer Ford


I received an article today entitled, Barriers and Facilitators of Risk-Based Health Care for Adult Survivors of Childhood Cancer: A Report From the Childhood Cancer Survivor Study. I think our society has a real misconception 
about surviving cancer. In that, the thinking is if you survived treatment, you are cured, and life goes on. Unfortunately that couldn't be further from the truth. High dose chemotherapy, like what Mattie endured, has both physical and mental health consequences. What intrigued me about this research article, was the study investigated the reasons why childhood cancer survivors do not receive follow up care (survivorship care). After all with all the secondary issues that arise from treatment, these individuals will truly need to be monitored all their lives. 

The main barriers for seeking healthcare in the non-cancer populations are lack of health insurance and transportation issues. These are not the same barriers for cancer survivors (I am not saying this, the research is). One of the main issues for adult survivors of childhood cancer is they become disconnected from the hospital they received their care from when they were a child and finding another facility for cancer-related care may present a problem. It is of concern that survivors do not have the necessary information to facilitate follow-up care in that fewer than 20% reported having a cancer treatment summary. Imagine being diagnosed with cancer as a child, surviving it, and then as an adult being asked about the medical treatment you received as a child. Chances are adult survivors of childhood cancer won't know and without having access to a treatment summary, it makes it very hard to be proactive in survivorship care.  

This research study discussed the benefits of educational interventions for patients and improving awareness of a patient's treatment history. Both of these suggestions are accurate, but I would take it one step further and say that the educational interventions also need to be supplied to primary care physicians. Many of whom are not well versed in the long term effects of childhood cancer and they do not understand the relationship between cancer in childhood and the affects on health and well-being in adult survivors. In any medical relationship, there has to be a collaboration between the patient and the physician for care to be effective. The responsibility for follow up cancer care doesn't only belong to the patient, but it belongs to any physician caring for an adult survivor of childhood cancer. 


To read the article, click on this link:
https://acsjournals.onlinelibrary.wiley.com/doi/epdf/10.1002/cncr.32568?referrer_access_token=IzUd2bp71caT5NQmXLGRgE4keas67K9QMdWULTWMo8P5bzzagg-gaNlhOk_NpiuJ_FYe0ZbkaUmI-UQGrUKQ2i4TDHEBk8fL22hMtPvZn9kfAY4wqula3cHfoHd9FRYeygNfyoeS5OB74TVOQ2palQ%3D%3D

Wednesday, January 29, 2020

Wednesday, January 29, 2020

Tonight's picture was taken in January of 2009. Mattie was home between treatments and got a visit from our resident Jack Russell terrier, JJ. Mattie grew up with JJ and I think it was JJ who inspired Mattie to want a dog of his own. You will notice that Mattie was sitting on the floor. This was where Mattie was most comfortable, given that he really was unable to walk, sitting on the floor gave him the ability to scoot around without having to take steps. 


Quote of the day: What we do for ourselves dies with us. What we do for others and the world remains is immortal. ~  Albert Pine


Today we had a 30 minute call scheduled with a person who knows Mattie Miracle's work on the periphery. Our goal was to inform him about Mattie Miracle, to discuss what we have accomplished to date, and to share our vision regarding psychosocial care and the implementation of Psychosocial Standards at treatment sites around the country. 

Mattie Miracle focuses on all things Psychosocial and I think it is noteworthy that we are the only national non-profit dedicated to psychosocial awareness, advocacy, research and support of childhood cancer. Of course when Mattie first died, we did not know how we personally were going to function from day to day, much less have a vision and goals for the Foundation. Yet in our first decade we have raised $700,000 to support our programs and supported 30,000 children with cancer. In addition, I made talking points for myself today which highlight all our activities and accomplishments and as such why individuals and other non-profits naturally turn to us for psychosocial inquiries and information. 

Awareness

1. Annual walk (we are hosting our 11th annual Walk on May 17th)
2. Newsletters
3. Contribute to book chapters and articles
4. Present at conferences and schools

Advocacy

1. House Resolution 262 in 2011 – a document which highlights the importance of education, awareness, and research of psychosocial care for children with cancer (McCaul, Van Hollen, Speier).
2. Held the First ever Symposium on psychosocial care (Capitol Hill, 2012). Had over 80 attendees from 12 different states. 
3. Roundtable on Capitol Hill (2017).
4. Added psychosocial language to STAR act (passed into law 2018).

Research

1. Four-year long research project (involving over 80 healthcare providers) to develop evidence based psychosocial standards of care. Largest evidence based psychosocial standard research project in history, reviewing over  13,000 articles. 
2. Paid for publication and open access to these published standards in Pediatric Blood & Cancer.
3. Funded $60,000 worth of implementation research in 2019.

Support

1. Funded four child life professionals. Our child life specialist assist 3,500 patients a year. 
2. To date, we have helped 30,000 children with cancer and their families.
3. Operate two free snack and item carts to support families caring for children in the hospital. Carts serve 2,500 families a year. 
4. Run community item drives to support our carts. 

Tuesday, January 28, 2020

Tuesday, January 28, 2020 -- Mattie died 539 weeks ago today.

Tonight's picture was taken on January 23, 2009. It was about two months after Mattie's second major limb salvaging surgery. A surgery that transformed Mattie's life, because in that moment he became not only a child with cancer but one who also had a physical disability. Next to Mattie was Anna, Mattie's physical therapist. Anna worked very hard at trying to get Mattie up and walking. That particular day Mattie took a few steps with this posterior walker. As you can see Anna was thrilled! However, after all of Mattie's surgeries, he never walked independently again.  


Quote of the day: With research and case examples, the continuing bonds theory fundamentally changed the way we conceptualize grief (and when I say ‘we’, I mean ‘grief professionals’.  I suspect this has been intuitive to grievers for thousands of years!) ~ What's your grief


My friend Denise sent me an article entitled, Continuing Bonds: Shifting the Grief Paradigm (https://whatsyourgrief.com/continuing-bonds-shifting-the-grief-paradigm/). The title alone is catchy isn't it!? So naturally I continued reading the article. The article itself is short but it does a wonderful job at introducing its reader to a whole new way of thinking about grief. I love tonight's quote from the article, because it highlights the chasm between researchers/clinicians and those of us who are grieving. Researchers/clinicians have espoused for years the importance of accepting the loss or finding a new way of living. Whereas those of us who walk with grief each day want to know WHAT IS THERE TO ACCEPT? Being asked to accept the impossible is hard to swallow, so instead intuitively over time we find ways to move forward but at the same time maintain a bond with the one who died. 

Apparently continued bonds are at the core of grief counseling today. The grief book, Continuing Bonds: New Understandings of Grief (Death Education, Aging and Health Care), was published in 1996. The authors, Klass, Silverman, and Nickman, question the traditional models of grief. The book suggests that these linear models, which end in a detachment from the person we have lost, were denying a reality of how people grieve. Instead, these authors suggested a new paradigm, in which healthy grief did not resolve by detaching from a loved one, but rather in creating a new relationship with the deceased. For me, this blog and my work with the Mattie Miracle Cancer Foundation are my continued bonds!

Here is the 30 second summary about continued bonds: under this model, when your loved one dies grief isn’t about working through a linear process that ends with ‘acceptance’ or a ‘new life,’ where you have moved on or compartmentalized your loved one’s memory.  Rather, when a loved one dies you slowly find ways to adjust and redefine your relationship with that person, allowing for a continued bond with that person that will endure, in different ways and to varying degrees, throughout your life. This relationship is not unhealthy, nor does it mean you are not grieving in a normal way.  Instead, the continuing bonds theory suggests that this is not only normal and healthy, but that an important part of grief is continuing ties to loved ones in this way. Rather than assuming detachment as a normal grief response, continuing bonds considers natural human attachment even in death.

The bold text above I think is particularly poignant. Especially since it is COMPLETELY counter to the way society thinks about grief. All I know is that society's philosophy on grief did not resonate with me, and I hated when people expected me to return to NORMAL after the first year after Mattie's death. Unfortunately it doesn't work that way...... there are NO NEAT fixes, and expecting this to happen only sets up a bereaved person for failure. 

It seems to me that people get edgy around those of us who have experienced a tragic loss. Yet it is my hope that the continued bond concept catches on, because then friends and family will know that the way they can truly help us is by keeping these continued bonds to our loved one alive and well. 

Monday, January 27, 2020

Monday, January 27, 2020


Tonight's picture was taken on January 12, 2009. Mattie was invited to his friend Abbie's birthday party. Honestly parties were difficult for us, as I was on hyper alert about Mattie's mood, how others would treat him, and of course given his physical limitations, I worried about his safety. Sometimes Mattie could keep it together while out in public, but then when we got home, Mattie would lash out at us. It was overwhelming and heartbreaking at the same time. 






Quote of the day: There is no greater sorrow than to recall in misery the time when we were happy. ~ Dante Alighieri


I think Dante's quote is quite poignant. Of course I would say that life before Mattie was diagnosed with cancer were happy times. Sure we may have had the typical ups and downs of everyday life, but nothing as traumatic as making 24/7 life and death decisions about your child. My life has two parts to it, pre-cancer and post-cancer. Mattie's diagnosis and death have transformed our lives, how we view the world, and our future. 

I was talking today to someone who has had multiple miscarriages. These multiple losses are not something this couple had factored into their future. As this young couple started out very much in love and with their life ahead of them. Yet with each loss they experienced, it transformed their relationship and how they felt about one another. So much so that the couple is now separating. 

Can I understand this? Absolutely! I think Peter and I could write a chapter on loss and how it impacts a relationship. In fact, Peter mentioned this exact topic at the Social Security workshop that we attended last week, and you could see people in the audience were uneasy and unsure of how to react to this raw but true information. 

The fact is our society views the natural progression of a relationship in a certain way, with no regard for the unexpected. Many assume that a woman and man in love will get married, have a house, have children and the family will grow and mature together. What happens when this doesn't happen? It isn't only sad but it can tear families apart and truly the world around us has absolutely no idea how to help. Some don't even want to, as you serve as a constant reminder of pain. After Mattie died, I remember many people I knew who would walk the other way if they saw me at a store fore example. They avoided me at all costs as I am sure they did not know how to deal with me, perhaps did not want me to feel worse, or frankly they didn't want to face the reality of my pain. As my reality could be ANYONE's really, especially when you think that 46 children a day are diagnosed with cancer in the USA. 

What interests me about today's conversation was that we had similar ways of thinking. We both see the world in terms of a trauma. Meaning, that when I see people talking about marriage and about eventually starting a family, I feel no joy in hearing this, nor do I feel happy for the couple. Because in my mind, the question that pops into my mind is..... what makes you think you will have healthy children? Of course the majority of the world has typically developing children, yet for those of us who have a child with an illness or disability, we know that life isn't always fair and the natural progression of things is NOT a given. Clearly not a conversation I can have with everyone, yet when I find someone who speaks my own "emotional" language, it makes me see that I am  not alone!

Sunday, January 26, 2020

Sunday, January 26, 2020

This photo was taken on January 13, 2009. We took Mattie on a boat tour around New York City. A kind passenger snapped this photo of us. Due note that we were on the Hudson River two days before the US Airways 
Flight 1549 crash (the plane after takeoff from New York City's LaGuardia Airport struck a flock of Canada geese and consequently lost all engine power). Two days after this photo was taken, many boats like the one we were on went to the crash site to pick up passengers in the water. 


Quote of the day: Many ideas grow better when transplanted into another mind than the one where they sprang up. ~ Oliver Wendell Holmes


I am still dealing with a swollen ankle, but as long as I can walk, I do! We took Sunny for a visit around Roosevelt Island today. That is two days in a row, and he loves it. He meets other dogs there, we talk to other owners, and he loves checking out the trees, bushes, and the boardwalk. Then Peter and I put our minds together and started working on some promotional material that our board member requested. Clearly Peter or I could have done this alone, but like Holmes' quote, I do think that when we dialogue and share ideas, what we generate is more meaningful and impactful. 

Meanwhile, check this out! This is Pastries by Randolph in Arlington, VA. My friend Carolyn gave me cupcakes from this bakery last year. I asked her where this place was located and today I had the opportunity to visit it for the first time. It is like walking into a candy store. So many wonderful products for the eyes to see. I haven't seen a bakery like the caliber of this one in our area in a long time. I was on a mission to buy cupcakes for a friend of mine and I was totally impressed with the professionalism and efficiency of the women working behind the counter. 

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.