Saturday, January 26, 2019

Saturday, January 26, 2019

Tonight's picture was taken in February of 2009. Mattie was posing with his art work that I had taped to the front of his hospital door. I am not sure why I did this! But I suspect it was for two reasons. First, of course to highlight Mattie's work, so he could see it, but second, I wanted to remind hospital personnel who would barge in through the door at all hours of the day and night that a child was living behind this door. I am not sure my visual message ever made an impact on those who freely walked in, but when confined in a place and lacking control, it was amazing what I resorted to. 




Quote of the day: Scratch a dog and you’ll find a permanent job. ~ Franklin P. Jones 

I would say tonight's quote is quite accurate! Look at this sad face in this photo! What was Sunny moping around for? Simply because I wasn't dressed yet to take him out for his second walk of the day! Doesn't he look like he lost his best friend?

This photo may not mean much to you, but basically Sunny's back end was sitting on one step and his front paws were on another. He wasn't sure who to pay attention to.... me upstairs getting dressed or Peter who was standing in front of him putting on his sneakers. Sunny is all about being outside and walking, and truly doesn't care who is taking him. But in this case, he wasn't sure who was going to meet his needs, which is why he was sitting on the steps. Equidistant from both Peter and me. 

Meanwhile this was what I saw when I looked downstairs! Someone looking up at me. Mind you while I was taking a shower, he moved right outside my bathroom door. When I opened the door, he was literally laying right outside like a carpet! The beauty of Sunny!

Friday, January 25, 2019

Friday, January 25, 2019


Tonight's picture was taken in February of 2008. If you look closely, Mattie was holding a big stick in his right hand. We visited Roosevelt Island that day and in typical Mattie fashion, he always picked up a piece of nature along the way and then brought it home. I can't tell you how many branches, leaves, and acorns we had piled up in our commons area. Now, every time we pass these big rocks on Roosevelt Island we think of Mattie. 






Quote of the day: The Ultimate Measure Of A Man Is Not Where He Stands In Moments Of Comfort And Convenience, But Where He Stands At Times Of Challenge And Controversy. ~ Martin Luther King, Jr.



We came across this article today entitled, Health‐related quality of life, psychosocial functioning, and unmet health needs in patients with sarcoma: a systematic review. These types of articles always catch our attention because they focus on sarcoma, of which Mattie had a type of sarcoma... osteosarcoma. 

Based on our cancer experience with Mattie, we felt the treatment for osteosarcoma borders on barbaric. Any time bones need to be removed from one's body as part of the treatment process, a red flag should go off! Maybe saying.... WARNING, this will have psychosocial consequences!

Such a warning bell shouldn't be coming from the parents and family. As we are too traumatized dealing with the diagnosis of childhood cancer. But what about the medical professionals..... shouldn't it dawn on them for example, that if Mattie had to have two arm bones and one leg bone removed that this was going to be problematic for him psychologically and socially? In our case, NO ONE flagged this as a problem and even when Mattie was exhibiting full blown medical traumatic stress symptoms, again no one recognized it. Other than us!!! It was Peter and I who demanded psychiatric assistance to help Mattie, but what if we did not have the energy to advocate, or even knew that we had the right to do so with our medical providers? All I know is without help, I am quite sure Mattie would never have been able to continue in treatment. As it had gotten so bad at one point, that NONE of his medical providers could approach Mattie and forget about touching him. 

Though Mattie did not survive, I always felt there would have been real psychological challenges we all would have had to face if he lived. Mainly because Mattie had enormous scars from surgery all over his body and his range of motion with his arms was very limited. So limited that he couldn't get dressed without assistance. In addition, Mattie was unable to walk and it would have taken intense physical therapy to relearn the walking process. Therefore, I hypothesized that osteosarcoma survivors are faced with very unique challenges and stresses that would make them feel and look different. Or in essence depressed and isolated. I have voiced my theory to other researchers, who have told me.... no, these children aren't very different from other childhood cancer survivors. 

So moving forward, reading the following conclusion from this study verifies my thinking...................

Compared to healthy individuals, patients with sarcoma frequently scored lower in physical and psychological quality of life domains and experienced higher rates of self‐image issues, depression, and suicide.


Now this makes intuitive sense to me, but what is being done about it? With regards to the medical treatment, I would say NOTHING. It hasn't changed much for children like Mattie, as they are still being given drugs from the 1950s and 1960s, and limb surgeries are still being done. Truly there is no humane way to treat osteosarcoma, which is why from our perspective what we can have control over and alter is the psychosocial care provided to children in treatment, survivors, and families. 


Health‐related quality of life, psychosocial functioning, and unmet health needs in patients with sarcoma: a systematic review.
https://onlinelibrary.wiley.com/doi/abs/10.1002/pon.5007

Thursday, January 24, 2019

Thursday, January 24, 2019

Tonight's picture was taken in September of 2007, on Mattie's first day of kindergarten. It was a big and exciting day, as Mattie was starting a new school. I am not sure who was more nervous, me or him! Prior to kindergarten, Mattie only went to a three hour a day preschool. I wasn't sure how he was going to manage a full day of school, surrounded by people he did not know. But Mattie was a survivor and he thrived on new experiences. He was much better at adapting to those kinds of changes compared to me. In any case, I remember on that morning thinking that I would take a photo of Mattie on the first day of all his school years. Unfortunately that never happened, as 2007 was the first and last year Mattie ever went to school. 


Quote of the day: Isn’t it a bit unnerving that doctors call what they do practice? ~ George Carlin



On November 8th (yes I can remember the exact day vividly because it was the evening of the Foundation's Bourbon and Bites Bash), I called my urologist at midnight. I called her because I self diagnosed that I was experiencing an urinary tract infection. Therefore, I needed help! I have come to the conclusion that empathy and compassion have got to be taught OUT of students in medical school. I say that because when you find a doctor who listens, seems to care, and is understanding, it is noteworthy. This isn't the norm, but the extraordinary!

When I called my doctor at midnight on November 8th, I spoke to her after hours service. Who kindly took a message for me and said they would page the doctor. The first time I called, I waited 50 minutes for the doctor to call back. However, she never did. So I called the answering service back again, who at that point called the doctor themselves and woke her up. They then patched the doctor through to me. Needless to say, the doctor wasn't thrilled I called and woke her up. In addition, she told me she had to get up early for surgery the next day. Ironically, I empathized with her, but she couldn't with me. Which actually made me angry, especially as I was in terrible pain.  

Two days after that phone call, I tried talking to my doctor's colleague about her behavior. But he is either frightened of my doctor or clueless. As he wouldn't answer my questions about his own office's after hour policies. So when I saw my doctor today, for my four month follow up appointment, I came with many questions for her. Not to mention disappointment! As I don't expected to be treated this way after working with her for ten years. Ten years of seeing someone every 3-4 months mind you!

She acknowledged how I felt today, apologized, and decided to give me an emergency supply of meds, so when I feel an infection coming on, I can address it immediately. Would any of this have been accomplished if I did not speak up? If I wasn't aggressive and knew how to advocate for myself? The answer would be a resounding NO! But one of many things I learned when caring for Mattie in the hospital and that is the loudest and most persistent voice gets the best care. A sad commentary, but it is the reality. I find whenever I give feedback to a doctor, I am immediately transported back to the days we lived in the hospital caring for Mattie. I am not sure I ever will be able to separate medical care of any kind from Mattie's cancer battle. I am aware of this, but my medical providers never make the connection. I am quite certain that if they did, they would have more compassion. Or at least that is my hope. 

Wednesday, January 23, 2019

Wednesday, January 23, 2019

Tonight's picture was taken in October of 2008. Mattie was in kindergarten and his class received a pumpkin gift from a parent. Look how large that pumpkin was? Mattie was clearly intrigued as he was sitting right behind it, most likely checking it out!


Quote of the day: We're all unique, just never in the ways we imagine. ~ Kate Morton



I have been reflecting on yesterday's colloquium at Mattie's school! Lots of thoughts come to mind. One of which is unlike the other 34 presenters, our issue was very personal for us. Our work isn't just a job or an area that we chose to focus on. Rather our mission arose out of the loss of a child. This subtly certainly was lost on the age group we presented to, but it certainly was very apparent to me. Starting with the educator who was the key note speaker. Though I can respect that she is a history professor and has done extensive research and publishing, she hasn't had to create something from the ground up. Like Mattie Miracle! This difference may not be important for the nature of the colloquium, but it definitely needs to be taken into account. 

But I guess my overall question is can you teach teens the importance and relevance of volunteerism and community service? I certainly know high schools and colleges work hard to do this, as they build this into the curriculum and require students to obtain many hours of service within the community in order to graduate. Yet I think we are confusing kids because instead of this being something fun, something that makes us feel good about ourselves, it instead has become a chore. Something to check off one's list, in order to meet an educational objective. So in essence making service mandatory, in my opinion, hasn't accomplished what it set out to do. 

Do I think the kids who had to attend the colloquium yesterday were happy about it? Did they appreciate that members of the community would be coming in to chat with them, and in turn they would have a different experience at school that day? I would say the answer to both questions was no. Or at least no for the majority of students. 

When I went to school, community service was not mandatory. However, in high school my mom suggested that I volunteer at a hospital, which I did for several years. I did it because I liked it, not because I got anything tangible from it. The main difference is I was introduced to service by a suggestion from my mom. After which, the decision to continue was purely driven by internal motivators. I truly believe internal motivators are always more meaningful and stronger than external ones, and I hope in time, schools take this into account. 

Switching topics, the students yesterday were truly shocked to learn that childhood cancer is random, rather than it being caused by genetics or the environment. Given this misconception, I thought it would be helpful to post on the blog the current thinking on how children develop cancer.....

All cancers, including those in adults, occur when the DNA in a cell mutates or changes. The body typically kills this new cell before it can cause any damage.
However, in the case of cancer, the mutated cell keeps growing and splitting into more cells. Cancer cells grow and divide much faster than healthy cells. They can spread throughout the body, sometimes causing tumors.

What causes this mutated cell? In children, it’s unclear.

But most childhood cancers are not caused by inherited DNA changes. They are the result of DNA changes that happen early in the child’s life, sometimes even before birth. Every time a cell divides into 2 new cells, it must copy its DNA. This process isn’t perfect, and errors sometimes occur, especially when the cells are growing quickly. This kind of gene mutation can happen at any time in life and is called an acquired mutation. Acquired mutations start in one cell. That cell then passes the mutation on to all the cells that come from it. 

Tuesday, January 22, 2019

Tuesday, January 22, 2019 -- Mattie died 488 weeks ago today.

Tonight's picture was taken in November of 2008. Mattie was in the hospital recovering from his second major limb salvaging surgery. A surgery that lasted ten hours! That is correct, 10! It was honestly amazing that Mattie could smile at all days after such a surgery. What this photo doesn't show was the nightmare we were living through trying to manage Mattie's pain, fear, and constant crises of hospital life. I could try to describe it, but it truly wouldn't do it justice.  


Quote of the day: Kids don’t remember what you try to teach them. They remember what you are. ~ Jim Henson

Jim Henson's quote intrigues me. Perhaps I am intrigued because Peter and I spent about four hours today at Mattie's school... attending and participating in their common good colloquium. Mattie's school invited us to speak. I typically do not go to high schools to speak on a regular basis because it is a hard age group to appeal to regarding childhood cancer. But given we were invited, I felt compelled to go. 

I think Henson's quote has direct applicability to teenagers, as I truly believe they do not remember what you have teach them. But I do believe they will remember the people who speak with them rather than at them, as I have always believed it is important to give students a voice, freedom, and respect within the classroom. Through all these intangibles, is where true learning happens. 

This was the abstract I wrote for our presentation today. The School had asked us to come and talk with the students about Mattie Miracle and the making of our national non-profit. 

Here is what our cover power point slide looked like. Peter and I were joined by Ann, our friend and fellow board member. 

Today's agenda. We spoke for close to two and a half hours. Not straight, but instead, three back to back 45 minute sessions (with about 15 minute breaks in between). It is challenging to give the same session, three different times. Frankly, if I wasn't an educator with training, this whole colloquium would have been daunting. Because what I had to do was design curriculum! I purposefully made this session engaging and lively. It involved role plays, group exercises, a team challenge, and finally ending the session with a corn hole tournament and candy for everyone (since we have a corn hole tournament at our annual Walk, we figured having them play in class may inspire them to attend our May 19th Walk on their campus). 

I am not showing you all our slides, but just a few for you to get the gist. The role play involved Cozy the Cat, which is a stuffed animal that is used for medical play in the hospital. I explained the nature of medical play to the students and the fact that they would be seeing two different skits. 

I developed these skits myself and then Peter and I met up with Ann yesterday, and we rehearsed them together, so that we could perform them naturally without looking at paper. 

This is what the Cozy the Cat set up looked like in the classroom. Cozy had a broviac catheter coming out of his chest, like Mattie, and was surrounded by some medical equipment. Not unlike what would happen to a child in a hospital. 

After the students hear the two role plays, we then asked them what they heard. I would say we did a pretty good job, because in each of our sessions students were able to identify many of the items on my list. Ultimately they understood that childhood cancer IS NOT JUST ABOUT THE MEDICINE. 

In groups they played a matching game. I handed them a piece of paper with 15 statements. Each statement had a fill in the blank space. On this same paper was a column that listed words they had to use to fill in the blanks. Interestingly enough this was a very hard task for the students. 

To make it fun, each fill in that guessed correctly, they earned a bean bag to play corn hole at the end of the session. 

More childhood cancer facts! I figured this would be a fun way to learn facts, rather than just talking them!

I think the matching game enabled us to talk about facts, while also providing more context to the disease.  

We showed the students our 10th anniversary video. I really think the students appreciated the video because it highlights what we are about and what we have accomplished over the last ten years. 

Over the course of the 45 minutes, students heard about Mattie. Why Mattie Miracle focuses on psychosocial support, our activities, and finally what makes us a successful non-profit. I explained to the students that they should always be like the mouse in this photo.... wearing a helmet. Focused on the cheese (or their passion), but never forgetting to bring a helmet along for the journey. Because people around them have a way of trying to belittle ideas, but if they felt strongly about something, they would find the way to plow on through! Which in essence pertains to Mattie Miracle. I told the students that within the first year Mattie Miracle was created, other non-profits told Peter and I that we would never make it three years. Now ten years later, I laugh at this. Those negative comments actually spurred me on further, especially since others did not see a foundation surviving on just addressing psychosocial issues and needs alone! 

We ended the sessions with a corn hole tournament. The kids loved it and they loved receiving candy! As we told them, candy is important to the Foundation, as it helps to stock our candy and item carts at hospitals. 


Overall, if the students remember nothing else, I figured they would at least recall our inclusiveness of them in the sessions, playing corn hole, and leaving with candy!

Monday, January 21, 2019

Monday, January 21, 2019

Tonight's picture was taken in February of 2009. You may not know what you are looking at here! But this was a typical physical therapy session for Mattie! If we expected Mattie to do something, then we had to be willing to do it ourselves. So literally myself and Anna (Mattie's physical therapist) were on the floor playing the game twister. Mattie was calling out directions to us and he was holding us accountable! We learned early on that Mattie responded to competition! So if I reported that I did three of something, then Mattie would work hard to beat my physical achievement. In essence, I did whatever it took to keep Mattie motivated and focused on recovery. 


Quote of the day: Yours is the light by which my spirit's born: - you are my sun, my moon, and all my stars. ~ E. E. Cummings

It was frigid in Washington, DC last night, but that did not stop us from going out  to try to watch the lunar eclipse. Even Sunny was in on it!








To me this is a helpful diagram that explains the phenomenon we saw last night. Now a days we understand the science behind such a lunar event, but I can't imagine what people thought was happening centuries ago when they saw the moon disappear from the night sky! Or worse, turn red!

This photo was taken in our common's area. I would have to say the sky wasn't black, but a more grayish blue! Earth’s atmosphere is responsible for the Moon’s color change during the eclipse. As sunlight passes through it, the small molecules that make up our atmosphere scatter blue light, which is why the sky appears blue. This leaves behind mostly red light that bends, or refracts, into Earth’s shadow. We can see the red light during an eclipse as it falls onto the Moon in Earth’s shadow.

Peter captured this Super wolf blood Moon. According to the Old Farmer’s Almanac, the January full Moon was dubbed the “wolf” Moon by native Americans because it occurred at a time of year when wolves would be howling with hunger.

Here you can slowly see the shadow from the earth engulfing the glowing white moon. 

Almost fully in the shade!

Basically the earth's shadow has covered the moon! 

I have to admit, if it weren't for Peter, I wouldn't have seen this. Because it was frigid out. But his excitement got me up and out! Even Sunny and Indie wanted to know what was going on! As the moon is our special symbol for Mattie, I would have to say he put on quite a show for us!

Sunday, January 20, 2019

Sunday, January 20, 2019

Tonight's picture was taken in February of 2009. That day, Sally the Story Lady, was visiting the pediatric units. Sally was a gifted actress, who started her own performing arts company. She shared her talents generously with the kids, at least once a month.  She knew how to bring a story alive and how to get the kids interested in participating. In fact, regardless of Mattie's mood, he always wanted to see Sally and participate in her antics. I will always be grateful to the joy and happiness Sally brought to all of us. 


Quote of the day: Living in a way that reflects one's values is not just about what you do, it is also about how you do things. ~ Deborah Day

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 before I was born. By the time I came along, my grandmother was already living with my parents. So to me a multi-generational house was normal. 

This is a photo taken during a snow storm with my grandmother and Heidi, our collie. Heidi is the reason I LOVE collies. 

This photo was taken when I was in college. My mom and grandmother came across the country from Los Angeles to visit me in college, which was in upstate New York. 

This photo was taken by Peter on New Year's Eve. We celebrated it in New York, and Peter joined us. I am so happy Peter got to know my grandmother. 

This was taken in Rockefeller Center in New York. Typically during the winter, there is a skating rink where we were sitting. But in the spring and summer, it becomes a cafe. My mom and I were sitting with my grandmother and my cousin Clara. 

Most children reflect on how they have aspects of each of their parents within them. In my case, I don't only have my parents in me, but I was also heavily influenced by my grandmother. So I would say there is a part of her within me always..... as we both like to cook, eat, have a special dining experience, we like things to be clean and organized, and we care about people and can be very nurturing. It maybe 25 years ago that she died, but she is never forgotten.