Saturday, October 28, 2017

Saturday, October 28, 2017

Tonight's picture was taken in October of 2007. Mattie was five years old and by that point LOVED going to Fall Festivals. Our DC area has many of them. In fact, Peter and I were just talking about this today, as we were driving out to Frederick, Maryland for the day. This car trip reminded us of the countless times we took Mattie to Butler's Orchard. Which does an incredible Fall Festival and also a wonderful Bunnyland, at Easter time. 

This photo was taken at Leesburg's animal park. Back then, the festival did not have a fancy name. Now it is called Pumpkin Village. Initially when we took Mattie to these types of Fall Festivals, he did not want to go down the hay slides. But you can see by age five he conquered that fear big time!


Quote of the day: Every new friend is a new adventure… the start of more memories. ~ Patrick Lindsay

Peter and I drove to Frederick, Maryland today. It is about 50 miles away from Washington, DC. We went there to visit with one of Peter's colleagues and his wife. I had never met either before, so it was the opportunity to make new friends. Something I really do not have the opportunity to do anymore. 

We met at this spectacular 19th century brownstone mansion, which housed a restaurant called Volt. 

This is what the interior of the restaurant looks like and we had a table right by that picture window. So on this beautiful fall day, I could watch people passing by and kids dressed in Halloween costumes. Apparently downtown Frederick was celebrating Halloween today. 


The food was amazing! In fact, it was better than most restaurants in DC! The food was beautifully presented and truly not ordinary. But paired so well and left a memorable impression on the diner. Then of course it was also matched by chatting with new friends. I think what fascinates me about making new friends is you see yourself through their eyes. These are people who really don't know us personally, they never met Mattie, and they don't know our story. Yet as we talked and shared with them our mission and work, we got their feedback. Naturally I was not looking for feedback, just simply sharing how I spend our days. What amazed me is through their lens, I was left to pause and acknowledge...... wow, look at what we are doing, in such a short period of time, on a limited budget, and living each day with great grief. Not sure why it takes strangers for me to hear this reality, but it registered today. 

Friday, October 27, 2017

Friday, October 27, 2017

Tonight's picture was taken on Halloween 2008. Mattie and I were headed to the Hospital's Halloween party and Mattie insisted I also wear some sort of costume. So I was a cat! Halloween at the Hospital was an interesting experience. Kids traveled in groups and we went from office to office all over the Hospital collecting candy. Then there was a party in the clinic which included face painting, crafts and food. I wish I could say this was a positive day for us. But Mattie found the whole experience overwhelming and when groups of kids got together this bothered him. He did not like hearing noise or feeling trapped in a crowd. 


Quote of the day: Would you rather stand up for a damaged meal or a damaged child? ~ Burger King


Have you seen the new Burger King public service announcement? It is only three minutes long but a fascinating social experiment. Or I should say, a sad commentary on human nature. The PSA is focused on bullying, and it starts off with a fact......30% of students worldwide are bullied each year. To address this issue, Burger King decided to conduct an experiment in one of their restaurants. 

In the PSA we observe actual costumers reacting to a bullied hamburger (meaning that it was cooked, but punched and thereby smashed when served) versus actual customers reacting to observing a high school student being bullied by friends. Do keep in mind that the students were acting out a bullying scenario. So it wasn't truly happening, but customers did not know this fact. 

Burger King wanted to see customers reactions to both forms of bullying (to a person versus to a burger) and also to assess the percentage of customer complaints. Unfortunately the PSA revealed that while 95% of customers reported the "bullied" burger, only 12% stood up for the high school student being bullied. Naturally this video is supposed to evoke a feeling, to make you want to speak up and say something the next time you see someone bullied. 

I get it! I do find it interesting that people feel more comfortable advocating for a bullied burger. This shouldn't be all that surprising, given that we are talking about a thing. A thing that is visually impacted by an action taken by the cook. In addition, this is an object customers wanted and paid for. Intervening when a person is being bullied has vast implications now. First and foremost, I think as a by-stander these days you do need to give some thought to your own personal safety before intervening. As an unstable situation, can lead to an escalation of behavior and violence. So I am not sure I would jump to the conclusion as this PSA implies that customers feel more compelled to speak up and act to rectify a bullied burger versus a person. There maybe many explanations for this discrepancy. However, at the end of the day, it does make you pause. 

I attached a link to the PSA below, so you can come to your own conclusions. I think bullying can come in many forms. It doesn't necessarily have to be in a group setting. Can't bullying happen between two people with no witnesses?

The other day, Sunny and I were walking by the water front. Along our journey, I saw a young woman walking. She was in front of us so I could see what was transpiring. Out of no where came a man who appeared to be arguing with her. I wasn't sure what they were arguing about or where he popped up from all of a sudden. To make a long story short, Sunny and I landed up walking passed her and this man. I wasn't going to intervene, but I also wasn't moving that far away in case she needed help. After their argument ended, she continued walking toward me and was about to pass us. But I stopped her. I asked her if she was okay and whether she needed help because I could see this man was still lurking and not moving along. She did explain to me that this was her boyfriend, and he wanted her to get something out of her car for him, but she couldn't because she was already late for work. I listened to her story and we walked together until she got to her workplace. 

At the end of the day, I would deem their relationship as a form of bullying and though I did not intervene with their interaction, I did not walk away either. So given the complexity of our world today, we may need to re-evaluate what intervening actually looks like. Because whether it is in the moment or after the moment, the point of the matter is that support is offered. That to me is what ultimately counts. 


Burger King PSA on Bullying:

https://www.youtube.com/watch?v=mnKPEsbTo9s&feature=youtu.be

Thursday, October 26, 2017

Thursday, October 26, 2017

Tonight's picture was taken on Halloween 2008. This was Mattie's last Halloween with us. Mattie went trick or treating at both the hospital and in his friend's neighborhood in the evening. Mattie was very concerned about his costume because he wanted to find something that covered his bald head and also hid the fact that his right arm was in a cast from limb salvaging surgery. Mattie picked this costume out himself and I think he did a great job. 

In fact, a nonprofit provided costumes to children at the Hospital. Mattie's art therapists understood that he was very self conscious and protective about his arm, so they allowed Mattie into the clinic before the other children to examine and try on costumes. This was a very thoughtful and sensitive gesture that truly made a difference for Mattie. Because I think if other children were around, Mattie would never have picked a costume out since he was concerned other kids bumping into his arm and crowding his space. 


Quote of the day: Beauty is how you feel inside, and it reflects in your eyes. It is not something physical. ~ Sophia Loren


This week I had a conference call with an undergraduate studying interior design. She contacted me because she is interested in doing her design thesis on the importance of design and space in the treatment of children with cancer. Her brother is a cancer survivor, which is why she knows first hand the importance of aesthetics in healing. In fact, various studies have linked the physical environment of hospitals to health outcomes. 

I had a very productive conversation with this young woman and commended her on her subject choice. Because I think more attention needs to be paid to the overall layout and design of pediatric care units. Though Sophia Loren's quote points out that beauty is what you feel inside, I know she did not have childhood cancer in mind or saw Mattie's hospital unit when she expressed this thought!

As I told this design student, I remember very vividly the first time (August 2008) we saw the pediatric units at the hospital. We were admitted to the hospital for Mattie's first round of chemotherapy and walked from the admission's department to the elevator. When the elevator door opened up on the pediatric floor, I was hit by BLUE. Not just any blue, but chlorinated pool water blue! I literally was so taken aback by the BLUE, that I wanted to jump back into the elevator and escape! Of course I couldn't! 

Needless to say I felt like the blue captured my feelings...... drowning in a large pool and unable to save myself or Mattie. I am posting a few photos of the blue hallways here so you can literally see what I am talking about. 

I know someone gave this color great thought and I suppose it is better than  white washed walls. Or is it? All I know is I despise this color and you won't see me wearing this color or capturing this color in anything I do! 

Now don't get me started on the LARGE underwater themed mural in the pediatrics unit. If you separated the mural from its context (being in a hospital), I most likely could appreciate it more. But given that the entire floor is pool blue, seeing this mural only exacerbates the drowning feeling. Feeling out of control, helpless, and depressed. You feel this way already, but why should the aesthetics of the environment add to this horror?

I shared my feelings with this student but that isn't where our conversation ended. She wanted to connect with me about our Psychosocial Standards of Care that Mattie Miracle funded. She wanted to learn more about them, more about the emotional impact of childhood cancer on children, their parents and siblings, and wanted my input on how designing a more effective space for treatment could help alleviate some of the stresses families feel throughout their journey. 

Ironically I happen to know an interior designer who has done work at Mattie's hospital. How do I know her? Well she has a son Mattie's age, and her son and Mattie were in kindergarten together. I am very happy that I could connect this student to this interior designer who has specific experience with designing hospital units and is also familiar with how to get such a redesign financed. Overall it was a positive call, and I look forward to reading her research proposal. All I know is Mattie's cancer experience guides me in all aspects of my life, and frankly I would not have guessed that it would have led me to talking to an interior design student. Nonetheless, I am very happy to see a student focused on making a difference in the lives of children with cancer and their families.  

Wednesday, October 25, 2017

Wednesday, October 25, 2017

Tonight's picture was taken on Halloween of 2007 (Mattie was five years old). This was Mattie's last Halloween before he was diagnosed with cancer. That year Mattie wanted to be an air force pilot. We looked high and low for such a costume but the best I could find was a navy pilot's costume. When I told my former student and friend who is a retired lieutenant colonel in the air force, she rectified the problem immediately. My friend sent me all sorts of air force patches to sew into Mattie's costume. So the costume looked more authentic! Mattie was thrilled and proud of his costume that year.  



Quote of the day: Candy is natures way of making up for Mondays. ~ Rebecca Gober

I can't believe that Halloween is fast approaching. What this means is soon I will be inundated with candy! All sorts of candy coming to us from DC, Maryland, and Virginia. I even have people sending me checks for our candy drive from other parts of the Country! I honestly never knew there was such a calling for candy! 
This will be Mattie Miracle's 7th annual candy drive this year. I must admit that if Mattie did not have cancer, it probably would never have dawned on me that families in the hospital need candy, particularly chocolate. I think the natural tendency when we think of the hospital is to want to provide patients and families healthy foods. Maybe in theory, the reality is quite different. 

As a parent, you are tired, stressed out, and working around the clock to provide care and support for your child in the hospital. This intensity burns up calories and I found when friends brought me chocolate, it made me happier (very relative of course) and it boosted my energy so I could take on the next task, fight the next battle, advocate for Mattie with the next person who walked in our room, and the list went on. I was lucky however that I had a support community who brought me such daily treats for over a year. Other families are not so lucky, which is why the snack and item carts at two local hospitals are vital and greeted with enthusiasm. My point is I learned first hand what needed to go on these carts and I feel strongly about carrying on this special tradition that Mattie's support community started for us in 2008. 

This morning we got a Google alert about our own Candy Drive. Rather hysterical. NBC4 did a segment about what to do with all your Halloween Candy, and apparently #2 on this list is to donate it to us! Mattie Miracle had no contact with NBC4, but clearly they found out about our candy drive through social media. Check out the link below, especially second 58. It would have been great if NBC4 flashed our website or logo in this news piece, but it's okay! We NEVER have a problem receiving candy donations, in fact it is hard to imagine SO MUCH candy is out there in our community. 


NBC 4 Video (check out second 58):
https://www.nbcwashington.com/news/local/4-Ways-to-Avoid-Halloween-Candy-Overload_Washington-DC-452709323.html

Tuesday, October 24, 2017

Tuesday, October 24, 2017 -- Mattie died 423 weeks ago today.

Tonight's picture was taken on Halloween of 2006. That year Mattie got to wear his calico cat costume that we made together the year before. He was unable to wear this costume in 2005, because Mattie spent Halloween in the hospital with sepsis. Fortunately the costume still fit Mattie the following year and he wanted to still wear it and look like our cat, Patches. The year before, I had not perfected the cat ears. But in 2006, I figured it out and I think Mattie made the cutest cat ever. 


Quote of the day: Remember not only to say the right thing in the right place, but far more difficult still, to leave unsaid the wrong thing at the tempting moment. ~ Benjamin Franklin


This afternoon I went to the hospital to push the Mattie Miracle Snack and Item Cart. I do this once a month for many reasons. Why? Well I suppose I could just let the hospital staff do this, but I believe it is important to make my own assessments of the cart's effectiveness and usefulness. The cart has all sorts of things on it besides candy. It has toiletries (shampoo, conditioner, lotion, lip balm, body wash, toothpaste, toothbrushes, mouth wash, deodorant, etc), k-cups for coffee, cocoa, popcorn, chips, graham crackers, cookies, granola bars crackers, and all sorts of drinks (water, soda, and Gatorade). I push the cart around with our philanthropy contact at the hospital. Jane and I were super busy today. Toiletry items were truly sought after today and the teen patients truly enjoyed coming to pick items off the cart. I sensed their excitement and also the appreciation of families to be offered something for FREE. As one teen said to me, 'usually nothing is for FREE.' I told him in this case, it was!

Along my journey pushing the cart, I had a conversation with several parents. I typically enjoy interacting with parents, not to promote Mattie Miracle, but just to say hi, help them out and let them know they are supported. In most cases, I am sure parents think I work for the hospital and the cart is a hospital based service. Frankly that is fine. I am not there for the kudos. However, one parent today set me off. Like Benjamin Franklin's quote tonight points out.... it is difficult if not impossible to leave unsaid the wrong thing. But I did! I did because under duress parents can say all sorts of things. 

This particular parent was super talkative and after listening to her experiences in the hospital, she then asked me if the hospital gives me money to run the cart. I kindly corrected her and told her no, that I run a non-profit that provides this service to the hospital. I left it at that, but she didn't. So then I further explained why I supply the cart. I told her when Mattie was in the hospital friends brought us these sorts of items DAILY for over a year. I knew these items were necessary, which is why I wanted to offer this service to families on a larger scale. In my conversation, I mentioned that Mattie died and in essence this is one of my ways of giving back. She did not acknowledge what I said, which is also fine, but then told me about her parents died from cancer. 

Typically when working with someone who I deem I am there to help, I have clear boundaries. Fortunately I do because if we weren't in the hospital setting and she did not have a child recovering from surgery, I may have reacted differently. My point to all of this is even 8 years later people can say things that can bother and upset me. It isn't always people who have health and normally developing children who are the culprits. In fact, those who have personal experiences with childhood cancer can also set me off! Especially when I interact with someone who feels the need to compete with me about their child's diagnosis, treatment, or worse their feelings about the process. I do not react well to such challenges and competition. I have received a great deal of this unhealthy competition over the years, which is why I refuse to attend a support group and for the most part won't go on-line seeking the feelings, thoughts and opinions of parents who have or had a child with cancer. Rather ironic and funny in a way, since I am trained to be a mental health professional. But in this case, I know what I need and don't need, and clearly what I don't need is more negativity and to become further angered, upset, and derailed in my own survival process. 

Yes when it is all said and done, I put this mom into context today, and can appreciate what she shared with me. At the end of the day, I rationalize the whole interchange as she being surprised to be offered items for free and was trying to understand this in the context of also supporting her son through his surgery. Certainly I know when I was in the hospital supporting Mattie, I must have said all sorts of things to strangers passing by or through our room. It is the result of sleep deprivation, stress, and sheer irritation over the uncertainty of a health crisis. 

Monday, October 23, 2017

Monday, October 23, 2017

Tonight's picture was taken in October of 2005. That year Mattie wanted to be a calico cat, just like our cat, Patches. Mattie wasn't into typical store bought costumes because they were itchy against his skin, so I decided to make this calico cat costume. Mattie and I went to the craft store and bought felt together and we picked out a black sweat suit at Target. The rest was cutting, gluing, and assembly. I made his cat tail with my black stockings, and his cat ears using a black headband of mine! 

Unfortunately that year Mattie never got to wear his costume on Halloween. Instead, Mattie had an un-diagnosed ear infection (thanks to his doctor), that turned into sepsis. Mattie landed up in the hospital for several days in 2005, and one of those days in the hospital happened to be Halloween. However, this was a hospital that did not have a pediatric unit or a child life specialist. So Halloween was not celebrated in any way. Fortunately the costume was very loose on Mattie, so he officially got to wear it for Halloween 2006.


Quote of the day: We cannot live only for ourselves. A thousand fibers connect us with our fellow men; and among those fibers, as sympathetic threads, our actions run as causes, and they come back to us as effects. ~ Herman Melville


Peter and I get Google alerts on the latest psychosocial studies that relate to medicine. It helps us keep up to speed with what is being produced and circulated around in the health care industry. Today's link that came to us had me chuckling. Chuckling because I would have hoped that the medical community had an intuitive sense (rather than needing data to uncover this reality) for the importance of treating patients as human beings rather than as a medical subject. Clearly however, research on this subject matter was conducted in an in-patient setting to understand what impact the patient-doctor relationship has on the patient's perceptions of care and satisfaction. 

Part of me of course is skeptical as to why such a study was performed in the first place! Hospitals are now being evaluated to see if they are assessing for distress in their patients, and not complying with such a task can impact hospital accreditation. For more information on the Commission on Cancers distress screening standard go to.............................. p.56; 
https://www.facs.org/~/media/files/quality%20programs/cancer/coc/2016%20coc%20standards%20manual_interactive%20pdf.ashx. 

Nonetheless, I would like to think (I'm being wishful!!!) that even without the incentive of hospital accreditation, medical personnel have the interest to provide better patient care! Of course providing better care and actually "TALKING" to the patient are sometimes deemed as SCARY and TAKING TOO MUCH TIME. Therefore, the majority of physicians are not eager to delve into the psychosocial world of their patients because they are afraid of the potential delays to their schedule and worse, that they will not know what to do or how to manage this information. 

I encourage you to check out the link below to the article entitled, Effects of a Brief Psychosocial Intervention on Inpatient Satisfaction: A Randomized Controlled Trial. Within this study, they wanted to assess whether administering a brief psychosocial survey to patients in the hospital, would improve the patient-doctor relationship and therefore cause the patient to feel he/she was receiving better care! The survey administered is the Background, Affect, Trouble, Handling, and Empathy (BATHE), and it is designed to address patients’ psychological distress and strengthen the physician-patient relationship. The survey invites the patient to talk about whatever is important to him or her, and prompts the physician to express empathy and elicit positive coping. Here are the questions on the BATHE.

I am not sure how you feel about this, but again I was chuckling over the fact that a survey has to be created to prompt doctors to offer empathetic statements to their patients! What on earth?! However, given the medical environment, it is clear to me as a recipient of A LOT of care, that empathy is TRAINED OUT of the budding physician. Whereas in psychological based programs, we learn the art and value of empathy, this is not a sought after skill in medicine. So as a result, I believe physicians do need this prompt! Or in essence the permission to be human. Being human doesn't mean that you lose objectively!  

In any case, patients who received this study's survey were not more likely to perceive that their physician spent adequate time with them, showed them respect, or communicated well about their care. Rather, they were more likely to report that their physician was friendly and showed a “genuine interest in me as a person.” The added value of the survey appears to have been to create a daily moment where the physician acknowledged the patient as a whole person rather than solely as a medical patient. It is this actual connection that caused the patient to feel more satisfied about care. Hopefully more studies such as this can be conducted on larger sample sizes, to enable medical personnel to see the value of the human connection and how it can directly affect treatment. I really believe at times, medical personnel forget how vulnerable patients and families are and also the reason why they entered the medical helping profession to begin with. Given Mattie Miracle's mission to bring awareness to the psychosocial issues and needs associated with childhood cancer care, we felt this study deserved to be mentioned. 

Effects of a Brief Psychosocial Intervention on Inpatient Satisfaction: A Randomized Controlled Trial:

http://www.stfm.org/FamilyMedicine/Vol49Issue9/Pace675

Sunday, October 22, 2017

Sunday, October 22, 2017

Tonight's picture was taken during Halloween of 2004. Mattie was two and half years old, but this was his third Halloween. For Friday and Saturday's blogs, I posted Halloween photos of Mattie from 2002  the and 2003. However by 2004, Mattie understood the notion of Halloween and it was his first year trick or treating. But like the previous year, Mattie did not want to wear a costume, mostly because he did not want anything heavy or itchy against his skin. So again, we returned to Target and together we picked this cute Winnie the Pooh sweatsuit. It may not be a full fledged costume, but I think Mattie made the cutest Pooh!


Quote of the day: I'm so glad I live in a world where there are Octobers. ~ L.M. Montgomery

It has been a glorious weather weekend in Washington, DC. When DC has its typical Fall or Spring weather it is very special. Today was in the 70's, with not a cloud in the sky. We took Sunny to Roosevelt Island and he had a great time sniffing and checking every tree out!

The resident Great Blue Heron was in the water, and all of us walking stopped in our tracks to take in this sight! 

After a two mile walk on the Island, Sunny literally sat in the parking lot for a water break!

After a water break, you can see that Sunny was revived!

This is what I get periodically at home! If Sunny wants my attention, he lies on his back, paws up and with his tail wagging back and forth. This is his attempt to get my attention to come on over and rub his tummy! The funny thing is this usually elicits a response from me. 

Life with Sunny is not boring and he always gets Peter and I moving, walking, and observing the world around us.