Tuesday, February 6, 2018

Tuesday, February 6, 2018 --- Mattie died 438 weeks ago today.

Tonight's picture was taken in February of 2009. Mattie was home in between treatments. As you can see Mattie was the ultimate multi-tasker. He was sitting on the floor doing water play. In one hand he was playing with his car and in the other was eating a rainbow sprinkled vanilla frosted donut. Mattie LOVED donuts, especially while on treatment. Since Mattie showed little interest in eating, we made sure he always had access to whatever he wished to eat. Regardless of what it was. This scene on the floor of our dining room was a typical occurrence! Cancer or pre-cancer, Mattie loved to do crafts, and water and clay play on the floor of our dining room. 


Quote of the day: It is good to love many things, for therein lies the true strength, and whosoever loves much performs much, and can accomplish much, and what is done in love is well done. ~ Vincent van Gogh

I forgot to post this photo of Sunny on the blog yesterday! This is classic Sunny! When you are not paying attention to him, he can sulk and look depressed. In those moments he takes to the couch or a bed. Truly he is one emotional beast, which I am sure was TOO much for his previous owner.

But there are aspects of Sunny that remind me of Mattie. Naturally I know one was human and the other is dog, nonetheless. I was talking with a friend today who lost a close friend to cancer. She was saying that in the Buddhist culture it is believed that the spirit of someone who died, remains on earth for a month or so, to help comfort those left behind. A rather touching notion, no? 

I know there really is no answer to the question... is there life after death? Certainly philosophers and religious scholars may debate this question and have different answers! But in the end we are left with the choice to come to our own beliefs and conclusions. Prior to losing Mattie, this whole discussion would have been the furthest from my mind. But I do think there are some losses that leave your world turned upside down and looking for north (a compass reference, to help you know where you are). 

My friend today is not Buddhist but she loved the visualization that her friend's spirit maybe around her. It's an interesting notion. I know after Mattie died, things happened that I can't physically explain. Nonetheless, I am not delusional and know what I saw and heard. Both episodes happened in my car. One day, I entered my car and I found the front passenger seat all the way down. Which is what I used to do with the seat to accommodate Mattie when he was in my car after surgery. Putting the front seat down allowed Mattie to stretch out his casted leg from the back into the front. However, I only arranged the seat like that when Mattie was alive and recovering from limb salvaging surgery! So the question is how did the seat get put into this position when myself and Peter never touched it!!!????? To this day, I am still stunned. It isn't like someone could have controlled the seat from outside the car. It had to be manually moved from inside and NO ONE had my keys or drove the car that day. 

I took the playing of my car seat as a sign from Mattie. In fact it was down right eerie! That was the first episode. The second episode happened while I was driving. I had the radio off. NO noise in the car. Yet while I was driving the radio turned on all by itself and what was it playing??? Try Dancing Queen, the ABBA song that Mattie always did his physical therapy to! In fact everyone at the hospital knew Mattie was coming down the hallway. They heard him first before seeing him. People would come out of their offices to find out where the music was coming from. When they saw it was from Mattie and his physical therapy entourage, people usually cheered him on! 

I can't logically explain the seat movement or the radio turning on by itself. Perhaps there is a scientific reason for both incidents. But I am sticking with the notion that Mattie was with me and trying to send me a message. Early on when Mattie died, I had great fear that in death he was still suffering and would be lost without me. Of course none of that makes sense, but grief isn't always logical. I needed those two signs and took them seriously. Which is why when my friend told how she felt today, I told her anything is possible. As long as you are open to experiencing the signs from our loved ones.  

Another cold gray day today! But my friends the Canadian Geese were out by the water front. They maybe a messy bird, but they are loyal and travel in packs. They are the highlight of the winter for me. It is wonderful to see them despite the temperatures. Of course, Sunny is very intrigued by them and would like to chase each one into the water! By the way...... the boot to protect Sunny's foot that was injured over a week ago, hasn't slowed him down at all. He is walking at a full clip again!!! 

Monday, February 5, 2018

Monday, February 5, 2018

Tonight's picture was taken in May of 2009. I remember this photo very well. I had gone home the night before to sleep. Typically I always stayed in the hospital at night with Mattie and Peter. But I was absolutely worn out and needed to sleep. I came back the following day, and Mattie was thrilled to see me. If you notice, I was wearing a HOPE necklace. I will explain more about this necklace below!


Quote of the day: Hope is the thing with feathers 
That perches in the soul 
And sings the tune without the words 
And never stops at all. ~ Emily Dickinson

I can't believe I NEVER explained the story of the HOPE necklace on the blog! EVER!!! I wore this necklace around the clock for over 14 months. This necklace meant a lot to me, which is why I am stunned I never wrote about how I got the necklace and its significance to me. I went back through the entire blog, using a search feature, and found nothing as it relates to this necklace! 

I chalk it up to being overwhelmed back in August of 2008 (a month into Mattie's treatment). I wasn't thinking clearly, and therefore missed sharing about this important gift. 

So I am taking you back in time, using my memory to recall how I got this necklace. This moment in time is SO real to me, so even though the story may not be in print, it is forever etched in my mind. 

I don't know the exact date, but I do know that by August 22, 2008, I was already wearing the above HOPE pendant. But why? This was NOT my necklace, so how did I get it? 

As Mattie was diagnosed and our world was falling apart, two friends decided to take on the role of co-leader of Team Mattie. Team Mattie became an incredible network of people (from our work, home, schools, etc) who delivered us meals daily, brought Mattie toys, treats, and gifts weekly, and truly if we needed something it was done. One of our co-leaders was Alison. 

One day Alison came to visit Mattie and I in his hospital room. Room visits were always challenging because the space was small and emotions were always high. I distinctly remember sitting down talking to Alison (who has a great sense of humor and played with Mattie very well) and while talking to her, I noticed and commented on the beautiful HOPE necklace she was wearing. The details are sketchy in my mind, because we may have even been talking about the need for hope given the crisis we were living. In any case, Alison told me that her middle name is Hope and that someone gave her this necklace knowing that Hope was part of her name. The next thing I knew, Alison took the necklace off of herself and put it on me. It was so symbolic, because not only was she literally giving me hope, but she wanted me to know that I wasn't alone while going through this with Mattie. That was a major gift to receive, as cancer can be very isolating. Alison suggested I wear the necklace daily as a reminder. 

Which I did! The necklace remained on me until Mattie died. After Mattie died, I told Alison that I thought she should have her necklace back. Her response was no! She actually wanted me to pass along the tradition of giving the necklace to someone else who needed hope while battling cancer. To this day, this necklace sits in my jewelry box, and I frankly can't part with it. To me it is a symbol, much greater than the word written upon it. The necklace is a constant reminder of the amazing network of people who surrounded us for over a year. It was through their support, I had HOPE. 

In fact, since Mattie died, I have found that several of my friends are coping with their own cancer diagnosis. Given my own experience with a HOPE item, I have tried to always give my friends an item with the word HOPE on it. But moving forward I may change what the item is!

So now fast forward to today. Here I am pictured with my friend Margy and her husband Ken. Margy was diagnosed with stage iv ovarian cancer on January 24. 

One of the things I passed along to Margy was a HOPE necklace of her own. I told her the story of my necklace and what it means to me, and I had a feeling the whole notion would resonate with Margy. Because prior to getting cancer, Margy ran a childhood cancer non-profit for twenty years called Growing Hope.  

A hopeful smile after getting a HOPE necklace. One day, I will reconnect with Alison and share with her that the tradition is alive and well!!!

Sunday, February 4, 2018

Sunday, February 4, 2018

Tonight's picture was taken in May of 2002. Mattie was one month old. But look at his expression! Mattie was very alert, tracking me with his eyes, and absolutely curious. To me this photo is priceless. That week I took hundreds of photos of Mattie, because I was looking for the right photo to put on the front of his birth announcement. I did not select this one, but it was a photo that was as equally intriguing!



Quote of the day: No one cares how much you know, until they know how much you care. ~ Theodore Roosevelt


On Wednesday's blog I posted an article entitled, "Does Medicine Overemphasis IQ." That evening I happened to also post the article to my Facebook page. I have been intrigued by several of the comments people gave me in reaction to my posting. 

Frankly, it never dawned on me that writing this blog and sharing my story about Mattie has actually inspired other people to advocate for their own medical care, or the care they are providing to an adult loved one. When I posted the article to Facebook, I got two noteworthy comments. Comments that have remained with me. 

I have copied the comments below. I figured both authors wouldn't mind me sharing their writings here, since they submitted them to me in a very public forum (Facebook). I am reading a book now, that has absolutely NOTHING to do with this certain topic. The only reason I bring it up, is the main character in the book is reading a stranger's blog on the internet. The blog author poses a question to the internet ether....... is anyone out there? Which really means..... is anyone reading her words and understanding her thoughts?

Any case as soon as I read, 'is anyone out there," it immediately resonated with me. This of course is the limitation with writing a blog! You don't know if anyone is out there, is anyone reading, and most importantly is what you are writing making an impact?   

Then of course, along came these two messages. Messages not posted on the blog, but to my Facebook page. The messages were written by women I have never personally met, yet both are Foundation donors. They do not even live in my region! However, they credit reading the blog for giving them the courage to advocate when competent and compassionate care isn't be provided. In one comment below you can see that the author specifically says that she "thanks a boy named Mattie." 

Part of Mattie's legacy is to help others learn from what he endured. In turn I try to use that knowledge to guide the Foundation's mission so that comprehensive cancer care includes psychosocial care. Yet in all my blogging and advocating, I did not make the conscious connection that what I have been discussing on this blog over the last 9 years is applicable to everyone. Anyone seeking medical treatment will run into many of the same hospital issues...... gruff staff members, miscommunication, insensitivity, mismanaged pain control, and no coordination of care among different specialists. 

I can't thank Dianna and Cheryl enough for sharing their thoughts with me and for letting me know THERE IS SOMEONE OUT THERE and people are listening! Listening and learning from Mattie's story, which to me is important because there has to be a purpose for all the suffering Mattie endured.  

Message from Dianna:

This message is from one of our loyal Foundation supporters. I never met Dianna. She lives in Louisiana and she got connected to us through Mattie's blog............................................................... 

Oh Vicki! I wish that I could give you a hug. My mom is in the hospital, and she had an awful day. In a word, she has been treated cruelly. In the past, we would have just been silently furious when the highest ranking staff member we could talk to did not call us back and ignored multiple calls. 

I thought about this post and Mattie and your mission, and it empowered me to research to find the email addresses for the Hospital CEO, Chief Financial Officer, Chief Nursing Supervisor, and Administrator. I sent them a very detailed email directly this evening. Within 20 minutes, the Nursing Supervisor who replaced the one who ignored me, called me and was very compassionate. He assured me that our frustration was justified and said the hospital was completely in the wrong. He also said that one of the head people I sent the email to would call me in the morning. 

When I called my dad, who was treated very poorly by staff all day, and knows nothing happens on Saturdays in the hospital, he was shocked and beyond relieved at the response we received. I told him, “You can thank a boy named Mattie for that.” 

I know that your primary goal with Mattie’s Foundation is to serve kids battling cancer. But, I hope you know that this legacy you are creating for him branches out and touches folks even not facing childhood cancer in a deep and profound way. From the bottom of my heart, thank you. I will pm you the letter. It’s pretty long, with a lot of medical stuff, so please don’t feel obligated to read it all. I just wanted to show you, in writing, just what Mattie is accomplishing. Gigantic Hugs!

Message from Cheryl: 

This message is from Cheryl. Cheryl is our cousin, on Peter's side of the family. We never met one another as she lives in Missouri, but we have many things in common. Our sons have the same birth date and her dog is also named, 
Sunny!..............................................................

I finally had a chance to sit and read this article. I completely agree with it. I loved how Dianna stated that you and Peter are creating a legacy far beyond pediatric cancer patients' psycho-social needs. You are creating a legacy for all of us with our own doctor/patient interactions. Mattie is such a bright sunshine spot for all of us! One of my best friends was just diagnosed with breast cancer this past week. She is currently interviewing surgeons. I am encouraging her not to just look at their credentials, but to see how they interact with her one-on-one. I'm praying she finds the right doctor who will treat her as a whole person and not just a disease.

Saturday, February 3, 2018

Saturday, February 3, 2018

Tonight's picture was taken in May of 2005. Mattie was three years old and as you can see he decided to stand on his tractor stool in the middle of the living room. In fact, that weekend, Mattie and Peter built this stool by hand and painted it. Mattie needed a step stool in the bathroom, and instead of buying one already made, Peter encouraged Mattie to work with him and design one together. Mattie loved the whole process and was very proud of their accomplishment. Peter and Mattie both signed their initials to the stool. The stool is priceless to me, and it remains in my clothes closet. I use it whenever I need to reach things on my top shelves. Naturally seeing this stool takes me back to this moment in time. 



Quote of the day: As people think and work together, a fabric of shared meaning comes into being. ~ Harrison Owen

Peter and I hosted a strategy session at his office in Arlington, VA today with three researchers and one clinician. The purpose of the three hour session was two fold. The first was to hear from a clinician, Greg Baiocchi, at Penn State Children's Hospital, about the ways the Psychosocial Standards (which were Mattie Miracle's vision) are being utilized to evaluate their pediatric psychosocial program. Second, we were honored to have both Dr. Julia Rowland and Dr. Lynne Padgett in the meeting, as they designed an implementation tool (like a survey) in the adult cancer world. The tool serves as both a checklist of how to objectively meet a standard as well as helps a program rate how well it is meeting the standard. Sound confusing? Let me try to simply what I am trying to describe. 

Basically the Psychosocial Standards project is like a cookbook. Picture the 15 Psychosocial Standards as the 15 top recipes in a cookbook. However, no cookbook would ever be bought if all it featured was a title of a recipe. The cookbook needs to provide more details, like a list of ingredients and instructions on how to cook the dish. Using this analogy, our meeting today, focused on the ingredients and instructions necessary to produce the dish. The dish being a psychosocial standard. Creating evidence based Standards was a great starting point (and it took three years to do), but now we have to give clinicians the necessary tools to implement these Standards. So this is how we spent three hours today! When I tell you it flew by, I am not kidding. 

In addition, Dr. Lori Wiener, who has been working closely with us since 2012, was in the meeting. I really feel after today that we have a much clearer picture of how to develop guidelines and an assessment tool so programs can rate their capacity to meet a Standard. The Standards are proving to be useful for many reasons. As we are constantly hearing from clinicians that the Standards help to provide validity to their jobs with their hospital administration. In addition, the Standards help to guide the quality of care, as it gives programs a way of assessing the kinds and frequencies of support services offered.  


In addition to it being an educational day about the Standards, I also feel I got a better understanding and glimpse into how America works today. 

Peter's company moved office space in Arlington. They are now located in a the Artisphere, which in essence is where the old Newseum (a broadcasting museum) used to be located. This whole office concept though is new to me, because several companies share the same space. This is clearly the trend businesses are moving to, to help cut down on overhead, as now multiple companies are sharing these expenses. In any case, this is one of the common work spaces I saw today! To me it looks more like a library or home. It is bright, airy, comfortable, and I am sure when people are in this space..... LOUD! This is how work is being done. No longer are people in offices or cubicles. In fact that is considered passe for corporations. To me it was a fascinating sociological study in the making. 

Check out this space! I can't imagine sitting at one of these desks with others all around me, typing, talking, and spreading out their papers and items. 

The managers of the Artisphere were very generous as they allowed us to use their conference room free of charge today. Which was very generous. For three hours we were camped out here. 

We took Starbuck's orders this morning, and each person had their drink awaiting their arrival. We also provided a catered lunch, as food is vital to keeping the brain and body working. 

What you see below (Appendix A) is a portion of the tool designed in the adult cancer world to help assess how a program is meeting a clinical standard. We spent a lot of time going through this and I am happy to report that we applied a similar model to four out of the 15 Psychosocial Standards of Care for children. I think we got the hang of it with the first four, so now we can do the work on the others. Where is the content for this tool we are creating coming from? Directly from the Standards that were published in 2015. The publication is over 200 pages, which is unwieldy. Therefore, these evidence based interventions must be arranged in a simple and user friendly document. Which was the whole purpose for meeting today, to brainstorm HOW TO DO THIS. When I initially looked at the diagram below (which is the adult model) I did not get it. But the more time we spent talking about it and interfacing with its creators today, the more sense it made. With the help of Julia and Lynne, we started to adapt the model below to our Standards. 

Friday, February 2, 2018

Friday, February 2, 2018

Tonight's picture was taken in August of 2002. Mattie was four months old and beginning to eat solid foods, such as rice cereal! Mattie LOVED it! This photo was taken prior to Mattie getting a high chair. So literally we would feed him on a lap or in his car seat! Turns out Mattie wasn't a high chair fan, so literally we fed him for as long as possible in his car seat. Until he outgrew it!


Quote of the day: Fundraising success consists of going from failure to failure without loss of enthusiasm. ~ Winston Churchill


Tonight's quote is simply brilliant! Churchill was correct, when trying to fundraise, you deal with a lot of rejection and failure. The key is how do you remain enthusiastic about what you do? I think the answer is you have to really be committed to what you are doing, believe in it, and be passionate about it. If you have this recipe in the mix, then there is a rational way through the failure. 

For example, I am working hard at finding additional corporate sponsors this year for our annual event. I have been working on connecting with people since the Fall. People who appeared to be interested in supporting us with a sponsorship. But when confronting the issue, they appear to be unwilling to commit. I could get down about that, or even wonder how someone could have doubts about supporting our mission and goals. But instead, I truly don't dwell on it and instead focus on finding the businesses who are better matches for us. I am happy to report that almost all of our corporate sponsors from last year's Walk have recommitted for this year. That to me is something to celebrate. 

As we are now into February, I turned my attention today to our Walk raffle. I wrote 17 requests to local businesses for gifts in kind, and have more to do on Sunday. Half the battle is getting started and organized. 

Meanwhile, tomorrow, Mattie Miracle is hosting a three hour strategic planning session with four psychosocial professionals to discuss ideas for developing a checklist and guidelines to help implement the psychosocial standards at treatment centers around the country. Implementation is a large undertaking, but we are committed to this because we do not want the Standards to just sit on a shelf, we want them to be usable to assist families as well as the providers. 

As for Sunny, his paw has been bandaged now for two weeks. Getting dressing changes every other day at his vet's office. Today was the last visit! Sunny has his bandage off, but we now have to apply a medical powder twice a day to his nail and he must continue to wear his protective boot outside. It is my hope that the nail begins to grow back, but for now without the bandage, I can see that Sunny is uncomfortable. 

Thursday, February 1, 2018

Thursday, February 1, 2018

Tonight's picture was taken of Mattie in May of 2002. Mattie was literally only a month old. Yet was very alert and did not want to nap! What was he looking at here? A baby bunny stuffed animal! A priceless photo! 






Quote of the day: Don’t say you don’t have enough time. You have exactly the same number of hours per day that were given to Helen Keller, Pasteur, Michaelangelo, Mother Teresa, Leonardo da Vinci, Thomas Jefferson, and Albert Einstein. ~ H. Jackson Brown Jr.


I never feel like I have enough time in any given day. Contrary to tonight's quote. I literally can't keep up with requests for help, planning the Foundation's Walk and keeping up on the admin for the Foundation. Each things are a full time job. 

A friend sent me this photo of the cover of a Lands End catalog! It caught her attention because it reminded her of Sunny.  

Do you see the resemblance to Sunny? This was Sunny last Christmas!!!

Sunny in the spring time! I can't tell you how many times people stop me to tell me Sunny looks like Lassie! I have had people yell across the street.... "there is Lassie." I even had an woman stop me on the street today to ask me if I knew who Lassie was. OF COURSE I said. Her response was..... "you have Lassie!" 

Wednesday, January 31, 2018

Wednesday, January 31, 2018

Tonight's picture was taken in September of 2002. Mattie was five months old and doing what he hated the most.... being on his tummy. Back when Mattie was a baby, the rage was tummy time. Every pediatrician talked about the benefits of tummy time on a baby's physical development. Mattie did not care so much for that recommendation and therefore rarely will you see photos of Mattie on his tummy! However, when I see this photo I always chuckle because Peter entitled it, Matt on Mat!!! 


Quote of the day: Do the smartest students, as measured by science grades and standardized test results, truly make the best physicians? ~ Ezekiel J. Emanuel


A long time friend of mine from graduate school sent me the article entitled, Does Medicine Overemphasis IQ (link to the article is below)? This article was published in the Journal of the American Medical Association (JAMA). The title alone captured my attention, so I immediately read the article. In my opinion it is a must read, but what I find particularly stunning is it wasn't written by a social worker or psychologist. NO! It was written by a medical doctor about medical doctors. 

The article begins with the quote above.... Do the smartest students, as measured by science grades and standardized test results, truly make the best physicians? I can tell you from personal experience that the answer is a resounding NO NO NO!!! But now medicine is confirming what Mattie Miracle has been saying all along..... IT'S NOT JUST ABOUT THE MEDICINE. 

Specifically, as the article points out scoring well on metrics (grades and MCAT scores) reveals nothing about other types of intelligences, especially emotional intelligence, that are critical to being an excellent physician. The example given is knowing how to calculate the speed of a ball rolling down an inclined plane is totally irrelevant to being an astute diagnostician, much less an oncologist sensitively discussing end-of-life care with a patient who has developed metastatic cancer. I couldn't have said it better. While Mattie was undergoing treatment we met some of the "best minds" in the field. However, I can't tell you how out of touch some of the physicians were, starting with the brilliant surgeon in NYC. I will never forget him. We waited hours for him to grace us with his presence. When he did, he told us he could only spend five minutes with us. Mind you the first minute he spent shaking his head and telling us how serious this was right in front of Mattie. A totally clueless wonder that shouldn't be working with anything that has a pulse. Yet he got through medical school and is considered a guru in his field. 

So what is Emotional Intelligence (EQ)? EQ is the ability to manage emotions and interact effectively with others. People with high EQs are sensitive to the moods and temperaments of others, display empathy, and appreciate multiple perspectives when approaching situations. But here is the key. Having emotional intelligence doesn't mean that you are without a brain and are just a touchy feely person. On the contrary, a high IQ may help a physician diagnose congestive heart failure and select the right medications and interventions, but it is no guarantee that the physician can lead a multidisciplinary team or effectively help patients change their behaviors in ways that tangibly improve their health outcomes. Accomplishing all of this requires a special skill set that isn't captured in data, through a scan, or even a blood test. It can only be found by LISTENING to the patient and understanding how that person feels. 

I am absolutely thrilled to hear that medical school admissions should incorporate explicit evaluations of EQ. Apparently the MCAT (the standardized test to be admitted to medical school), now includes a section on the psychological, social, and biological foundations of behavior. Amazing no? 

In so many ways, I think Mattie's cancer journey helped us understand the profound problem medicine faces today. In addition, I also believe that identifying the importance of psychosocial care in comprehensive cancer care is what has made Mattie Miracle cutting edge. 


Does Medicine Overemphasize IQ:
https://jamanetwork.com/journals/jama/fullarticle/2671354

Tuesday, January 30, 2018

Tuesday, January 30, 2018 -- 437 weeks ago today.

Tonight's picture was taken in November of 2002. Mattie was seven months old and as you can see sitting with me on the couch. We started reading to Mattie at a young age and he certainly loved the pictures and hearing me tell a story. Mattie had some favorite books, one of which was Goodnight Moon. Peter and I read this SO often, we almost had it memorized!


Quote of the day: But, instead of what our imagination makes us suppose and which we worthless try to discover, life gives us something that we could hardly imagine. ~ Marcel Proust


It seems to me that life gives us a whole lot of "somethings that we could hardly imagine." In the past few days, or I should say weeks, I have heard one nightmare cancer story after the other. I do think this clouds your mind and spirit after a while. I find ironically that I can help other families whose child has cancer. But when it comes to cancer impacting people I personally know, well this truly is different. Helping others that I don't know, is a satisfying feeling, and I find being one step removed, protects me from actually living the journey with them. However, when it's someone I know, I can visualize everything from how the person will react, and truly the day to day management of the disease. In these moments, of course I think about Mattie and what he endured. Not to mention us. Yet I remind myself that Mattie's journey has to be for a reason, and the reason is that I can personally assist others in ways that others can't! When people are running away, I tend to be walking toward!

I end tonight's posting with The Blue Moon! I literally saw this moon tonight, after leaving my friend's home. A close friend who was just diagnosed with cancer. I view this as a Mattie sign!!!

Monday, January 29, 2018

Monday, January 29, 2018

Tonight's picture was taken in October of 2002. Mattie was six months old in this photo! I would imagine that I decided to snap this photo because Mattie was rarely in his crib. He really did not like it and preferred being with me. In fact, the first several months of his life, he slept at night on my shoulder. It was a very special moment, when Mattie graduated to his crib and finally slept. But it took a lot of training to get that point because sleep did not come easy to Mattie. Now that he is gone, I always think that Mattie decided he did not want to nap or sleep because he somehow knew he had to live life to the fullest, because he wasn't going to be with us long. 


Quote of the day: There is only one kind of shock worse than the totally unexpected: the expected for which one has refused to prepare. ~ Mary Renault

This evening, we learned that one of our core researchers for Mattie Miracle died after a battle with cancer. Andrea Patenaude held various titles, such as the Associate Professor of Psychiatry at Harvard Medical School and the Director of Psycho-Oncology Research in the Division of Pediatric Oncology at the Dana-Farber Cancer Institute. We had met Andrea in March of 2012, when she agreed to serve on a panel of experts at our day long Psychosocial Symposium on Capitol Hill. Since the Symposium, we have worked closely with Andrea for the last six years. 

We learned that Andrea's cancer relapsed in 2017, but like tonight's quote pointed out....... we are shocked because so many of us refused to prepare or even accept that such a bright mind, compassionate clinician, and pioneer in the psychosocial field could die at such a young age. Peter and I are stunned, but so is the rest of our core team. 

When someone has cancer, it is important to respect their decision about telling their story and sharing their journey. Not everyone wishes to be candid with others and would instead prefer to manage things with a very small and close support system. Certainly I can respect this, but I think because I wasn't aware of how grave the situation was, it makes learning about her death today beyond shocking. We had no time to prepare for this reality and worse, there was no time to say good-bye and thank her for her amazing service to the field and for her significant role in the development of the Psychosocial Standards of Care for Children with Cancer and Their Families. All I know is the world is a little less bright today. 


This is a very short bio that Andrea wrote about herself. It can be found on Harvard Cancer Center's website (http://www.dfhcc.harvard.edu/insider/member-detail/member/andrea-f-patenaude-phd/):

For over 25 years I have been interested in the psychological adjustment of children and adults undergoing treatment for cancer. I particularly studied the impact of bone marrow transplantation on pediatric and adult patients and their families. Increasing survival of cancer patients has led to my strong interest in survivorship, resilience, and quality of life. More recently, my work has taken on the added focus of exploring the psychological impact of advances in cancer genetics. I have studied the psychosocial outcomes of women and men undergoing cancer genetic testing for p53 and BRCA1/2 and the experience of women undergoing prophylactic mastectomy for increased hereditary cancer risk.

I have many photos with Andrea over the years. This was the first day we met her, in March of 2012, at our Psychosocial Symposium on Capitol Hill. 

This was Andrea speaking to the audience at Mattie Miracle's first think tank (2013) held at the American Psychosocial Oncology Society conference in Huntington Beach, CA. 

 I am standing next to Andrea during one of the key note addresses at the American Psychosocial Oncology Society conference in Tampa, 2014.

Andrea was next to Peter at our Strategic Planning session held in Washington, DC in July of 2016. 

Andrea was in the center, in blue. We presented on a panel together about the Psychosocial Standards of Care at the annual American Psychosocial Oncology Society conference in Orlando, FL (2017).

This photo was taken at Mattie Miracle's Roundtable on Capitol Hill in January of 2017. Andrea was in orange, fourth person from the left in the front row. 

Sunday, January 28, 2018

Sunday, January 28, 2018

Tonight's picture was taken in November of 2002. Mattie was seven months old. Peter snapped this photo of us in front on our balcony with our oak tree in the background. This is one of my favorite photos. This oak tree didn't only provide beauty but it provided leaves that would feed caterpillars in the spring! As Mattie loved collecting caterpillars, feeding them, and watching them transform into moths. However, as Mattie and I learned, his tent moth caterpillars only ate OAK LEAVES!!!


Quote of the day: Nothing is a waste of time if you use the experience wisely. ~ Rodin

So as a recap, Sunny lost a nail on Monday, the whole nail on his left back paw. We went to the animal hospital on Monday evening and the bandaging began. Since Monday, I have had to take Sunny to the vet every two days for a solution bath of his leg and a dressing change of his bandage. This has been quite a laborious process. I have been to the vet so far..... Monday, Wednesday, Friday, and Sunday this week. The visits continue next week as well! My joke is I am happy we got pet insurance for Sunny, because so far, it has been a lifesaver in just 2017 alone. Sunny is still on antibiotics and his stomach doesn't seem happy at all. In fact, he woke me up at 7am today making a horrible sound with his mouth. Apparently the vet was concerned by my report and she did a sonogram of his abdomen. She reported that there are no tumors. Frankly my mind wasn't going there, but too bad her's did!

This afternoon, I met up with two friends and had high tea at the Mandarin Oriental Hotel in downtown, DC. I am on the quest to find the best high tea in our area, and I am STILL looking.

This was the lobby of the hotel. Which is quite beautiful and the service at the hotel is beyond helpful. 

Here is a photo of the Empress Lounge, where tea is held. It is nice in theory, but is right off the lobby. Though part of the lobby, it isn't noisy or drafty. 

A view from my seat. I am sure it is beautiful in the spring, because the lounge has a lovely patio, surrounded by a garden. I hear the garden is lined with cherry trees, which must be quite a sight in the spring. 

Today's menu! They bring out a fixed tray of sandwiches, scones, and desserts. The only thing you pick is your tea. I had a Lychee Red tea which was lovely. 

Notice the cup and saucer. I am a china affectionato, so a plain white cup and saucer did not do it for me. They serve you a side of clotted cream, lemon curd, and raspberry jam for the scones. 

The tray that comes out! Basically there are enough items for two people on this tiered tray. You can sample one of each item. 

One of my friends ordered Green Flowering Tea. Literally the tea is brought to you with a tight flower bud. As it sits in the hot water, it opens up!!! I would say that was totally different!!!