Saturday, March 17, 2018

Saturday, March 17, 2018


Tonight's picture was taken on St. Patrick's Day of 2009. Several of Mattie's friends gave him green gear to wear. Mattie was always big on decorations and wore this get up to the oncology clinic that day. I still have the shamrock headband and sunglasses. The headband is actually on display in Mattie's bedroom. Certainly the gifts did not change the nature of Mattie's cancer or treatment, but what they did was actually priceless. When Mattie would get upset or down, which happened multiple times in a given day, I would pull out a gift. Thankfully we had many to choose from because of our care community. Turning to a gift to open and to play with was an outstanding distraction for Mattie, and at the same time helped Peter and me feel the support of our community behind us. 


Quote of the day: In the end, though, maybe we must all give up trying to pay back the people in this world who sustain our lives. In the end, maybe it's wiser to surrender before the miraculous scope of human generosity and to just keep saying thank you, forever and sincerely, for as long as we have voices. ~ Elizabeth Gilbert

Mattie Miracle is up to a record number of corporate sponsors for the Walk & Family Festival this year..... 19!!!

To me this is a major accomplishment as we struggled the first couple of years with only one or two sponsors. But each year as we grow, so does our list!

Our new additions this year are:
Anthem, Georgetown Pilates, Robert & Tyler, and After-Mouse.Com. 

Landing corporate sponsorships isn't easy. In fact, with just about every sponsorship there was a personal connection that made this possible. The only sponsorship that was rather a cold call, was Robert & Tyler, who are stellar realtors at Washington Fine Properties. They found Mattie Miracle from advertisements for our November Candy Drive. They participated in the Drive, sent photos of their candy collection and even delivered the candy to us! Given their extensive participation, I reached out to them about our Walk and they were eager to participate. Wonderful, no?

With regard to our other new sponsors this year, each one of them has a story behind it. For example with Georgetown Pilates, this is where Peter goes for pilates lessons. He has been going for seven months now and his instructor is Marisa. Marisa is a friend of ours, runs our Walk bake sales, and when she was in high school helped us with Mattie when he was home between hospital visits. It was Marisa's idea to reach out to the owner of the pilates company, and once Peter had that connection, the rest is history. 

Our connection with After-Mouse.Com, is a bit different. Someone reached out to Peter on linked in. Originally he thought Amanda wanted to set up a meeting to talk about what he does by day.... mobile health solutions. It turns out though, when they actually met it wasn't about his day job, but about Mattie Miracle. After-Mouse designs touch table entertainment systems and they were interested in getting connected to medical facilities (since they have touch tables at hotels and cruise ships, but not in hospitals). We really helped to make this happen for After-Mouse, so much so that now they are running a research study on the effectiveness of these electronic play tables in hospital settings with a researcher at the NIH who works closely with us. Given our work with After-Mouse, asking them to be a sponsor of our Walk seemed like a good fit. 

Given that sponsorships are about networking and personal connections, it takes time to develop these relationships. However, what I am most pleased about is that our sponsors are loyal. They commit to us year after year. TeraThink has been supporting us since 2011, and they are one of our very first sponsors. We are truly grateful to them, because once you have a legitimate sponsor, it is a lot easier to ask others to take a leap of faith and join our Mattie Miracle family. 

Friday, March 16, 2018

Friday, March 16, 2018

Tonight's picture was taken in March of 2003. Mattie was 11 months old and we took him to California because I had a conference to attend in Anaheim. That was Mattie's first plane trip and not a short one going across the country. Mattie was for the most part a good traveler. However, the challenging part was entertaining him for a five hour long flight because Mattie was NOT a napper. This photo was taken at the LA Zoo. It features Mattie's favorite form of transport.... in a backpack on Peter's back! 


Quote of the day: I am only one, but I am one. I cannot do everything, but I can do something. And I will not let what I cannot do interfere with what I can do. ~ Edward Everett Hale


Out of the blue today, I received an email from a social worker in Pennsylvania. We do not know each other, but apparently she read one of the chapters we wrote in a text book entitled, Pediatric Psychosocial Oncology: Textbook for Multidisciplinary Care, and it compelled her to write to us. She said..................

It’s the end of my second week of work here at Penn State Children’s Hospital in a newly created position, charged first with the development of a parent to parent mentoring program.

In my first two weeks, I’ve taken in a lot of information and absorbed numerous faces, names and roles. As the work week is ending and I am organizing my experience, I opened a copy of ‘Pediatric Psychosocial Oncology: Textbook for Multidisciplinary Care.’ Scanning the table of contents, I was drawn to the chapter that you co-wrote.

Reading it and the clear distillation of your experience of parents was a gift. In fact, I can imagine reading it as a touchstone reminder throughout the coming months in my new role.  So this email is just a short note of my appreciation.

Perhaps one day our paths will cross.

------------------------------------------

I was very honored to receive this email. When one authors a chapter of a textbook, you really have no idea whether your chapter will be of interest to others or even read. However, when I went onto Springer's (the publisher) page today, I noticed that our chapter has been downloaded 664 times. 

But more importantly this chapter is helping clinicians understand a parent's perspective and why psychosocial care is vital throughout the entire cancer journey. Not just at diagnosis. I remember working on this chapter a year or so ago, and it wasn't the hardest one I have written so far, but it had its own challenges. I really wanted to convey Mattie's battle and the lessons we learned from him, and how we are trying to use this information to help others. Given today's email I feel confident we impacted at least one person! 

Below is an excerpt from our chapter entitled, Parents’ Perspective on the Role of Psychosocial Care in Pediatric Oncology............................


Hope, as we knew it, died the day we learned Mattie’s cancer metastasized, when all treatment options were exhausted, and the conversation turned to "making him comfortable." Mattie's physicians never used the word death or dying with us. It was Mattie's nurses who were very direct and told us that Mattie was dying. Once this reality was disclosed, his physicians began talking to us about Do Not Resuscitate orders and other directives. Perhaps the medical team was so invested in saving Mattie's life, facing his death and accepting the limits of medicine were exceptionally challenging to address with us directly. When Mattie died we not only lost our son, our only child, but all that came with our roles as a parent such as the prospect of a wonderful life watching Mattie grow and flourish, holidays and making our own traditions and memories, and the new adventures and rewarding experiences that come with raising a child and being a parent. Although subtle at first, new types of losses continued after Mattie's death. The house became more quiet than a place of worship, summer vacations were no longer child friendly, there were no graduations to look forward to, or weekend children's birthday parties, and holidays did not seem as festive anymore. With the death of our only child, we lost our purpose and direction in life, we lost our social circle, as this was largely comprised of parents of Mattie's friends, we had no more parental milestones or "firsts" to look forward to, and no more chances to see the world through our child's eyes.

We came to the hospital as three and on the day Mattie died, we left as two. That was a profound loss, which was compounded by the fact that we also had to say goodbye to our daily support network at the hospital, a network who had been with us through a 14-month cancer journey. Leaving the hospital and trying to re-integrate back into the world was and continues to be hard for both of us, especially for Mattie’s mom, who has not returned to her previous professional role. In the first month after Mattie's death, friends told her she needed counseling, they wanted her "fixed" so she could go back to being the person she was. So Vicki went to talk with Mattie's social worker. The advice she received remains with her always and has carried her forward. The advice was, "who is the counseling for, you or for your friends?" Though well intentioned, friends and even some family members are not always sure how to help grieving parents and in the process can make one feel like they are not grieving and coping the "right" way. Psychosocial providers need to remind parents there is no right way to grieve. There is no timeline, there are no quick fixes, and importantly, parents need to be prepared with this information before being discharged from the care of the psychosocial team.

For some parents, advocacy can be an antidote to overwhelming helplessness or grief. Yet, for the grieving parent, there can also be loneliness with that experience. When Mattie died we also discovered that we no longer fit into the cancer world, since we did not have a child fighting for a cure or one who was in survivorship mode. This has left us in a very precarious position, as we are still trying to figure out our place in the world. We may look childless to most people now, but the fact of the matter is in our hearts we will always be parents and we were also parents to a child who had cancer. As providers of psychosocial care, you must remember the importance of the role you play and the support you deliver as this will help parents in their new reality of living a life without their child. 

Abstract of the chapter can be found at:
https://link.springer.com/chapter/10.1007%2F978-3-319-21374-3_22

Thursday, March 15, 2018

Thursday, March 15, 2018

Tonight's picture was taken in March of 2005. I entitle this photo.... The Eclectic Look! I just love how Mattie was wearing his Easter sunglasses all around the living room and putting stickers on himself. This was a boy on a mission, who knew how to have fun and how to get all of us to laugh. 



Quote of the day: I spend half my time comforting the afflicted, and the other half afflicting the comfortable. ~ Wess Stafford


When I came across this quote tonight, I knew it had to go on the blog. Today is the Ides of March, which is typically an ominous day, synonymous with bad omens. It was that kind of day today for me, with one thing after the other happening. 

Let's start off at my urologist's office. Last Tuesday, I had an appointment scheduled with the doctor. I always see her at her DC location. However, last Tuesday, when I showed up at the doctor's office, I was told she was in her McLean, VA office. Therefore my appointment was in McLean but I was in DC. I have never seen my doctor in Virginia, so I was perplexed with how I got assigned to that office. Needless to say, I chalked it up to a computer error and came back to the office today.

When I arrived today, I signed in and paid my co-pay. I then went to sit in the waiting area. While sitting I learn from other patients that the doctor was running behind. I don't mean by 15 minutes, try 90 minutes! Some ladies were sitting in this waiting area for over an hour already! Meanwhile, I noticed a small office adjacent to the waiting area. When I say small office, it was more like a small cubical space with its own sliding door. In that small space was a woman who was talking VERY loudly as she was helping patients. Patients who needed procedures and surgeries scheduled. Literally I could see the patient's face and hear exactly what was needed regarding their medical care. It was blatantly a HIPAA violation as everyone in the waiting room could hear and therefore access other patients' personal health care information. Observing this for several minutes absolutely infuriated me. Especially since I could tell there were many anxious people in the waiting room worried about their own health. 

At that point, I marched up to the office receptionist. She remembered me from last week. Which helped. I told her I wanted to make a formal compliant about the HIPAA violation I was watching unfold. I told her I wanted to speak to the office manager. Guess what? The person in the small office divulging personal health information to the rest of us WAS THE OFFICE MANAGER. So I then asked to speak to her boss. While I was waiting his arrival, I put my observation and complaint in writing.    

I then asked the receptionist how delayed the doctor actually was. When she told me I probably wouldn't be seen until 1pm (I came at 11:30am), I told her I wanted to reschedule my appointment. She wanted to try to accommodate me but because the computer system is antiquated there was NO WAY to reimburse me for my co-pay. So I had to suck it up and wait to be seen. However, by that time, I had all the office staff hopping. I also spoke with the office manager's boss and gave him a mouthful about computer glitches making erroneous appointments, overbooking of the doctor, and the most egregious...... sharing of personal health information in an open forum. 

I finally did get to see the doctor and I shared with her the dysfunction she may not be aware of outside of the exam room. If I hadn't been seeing this doctor for 8 years, I would NEVER return after today's experience. Fortunately the doctor knows me and took what I said seriously. However, when I left the exam room, and went back out into the waiting area, the same patients were still waiting to be seen. I chatted with several of them and they explained to me that they are leary to complain because they felt no one would care and they feared this would impact the type of care received. At one time I may have been more timid in a health care setting as these ladies. But here's the thing..... what I learned from Mattie's cancer battle was that the most assertive and persistent patient/family member, gets access to the most effective care. A sad commentary, but it is true. 

I could have gone through this appointment today and only looked after myself. It would have been easier that way, but because I live with the constant lens of the patient/family, I felt I couldn't keep quiet. That changes in the system needed to be made to make the experience more patient friendly. The boss of the office manager told me that space is a commodity on that floor. In essence he was trying to give me an excuse for why the office manager is relegated to that small office space and divulging information. He also tried to tell me that the reason the doctor was running so behind was because she talks to her patients and sends a lot of time with them. I accepted NEITHER excuse and pushed back on him. First of all, space maybe a commodity, but it is his responsibility that the office is HIPAA compliant. So put someone else in that space! In addition, I view it as an administrative/managerial error that patients are overbooked. So I said.... don't blame it on the doctor for doing her job. This was only part of my day, but you get the picture!

Wednesday, March 14, 2018

Wednesday, March 14, 2018

Tonight's picture was taken in March of 2004. Mattie was almost two years old and as you can see he and Peter were having a major play session. Cars and other toys were all over and naturally why not also incorporate a large umbrella into the scene. Peter's umbrella had a way to peek out between the layers, which intrigued Mattie. To me this made for a whimsical photo. 


Quote of the day: Caring can be learned by all human beings, can be worked into the design of every life, meeting an individual need as well as a pervasive need in society. ~ Mary Catherine Bateson


I went this afternoon to push the Mattie Miracle snack and item cart at the hospital. As I went from room to room in three units, I had the opportunity to witness both the caring and insensitivities of hospital personnel. You would think that being back in the physical space of the hospital would set me off, or how about passing all the rooms Mattie received treatment? Certainly I acknowledge those feelings in some way, but what triggered me at today's visit was observing the hospital food service delivering dinner. Why? Because this person was coming into the units to deliver dinner at 4:20pm! It was a ridiculous time to deliver trays of food. 

I ran into Mattie's favorite HEM/ONC nurse and I observed her talking to the woman from food service who was pushing the dinner cart. She explained why delivering food to children at 4:20pm wasn't appropriate and that she should consider delivering food to the adult units first. After all, if you feed a child at 4:20pm, it is a LONG night without food until the morning. I have to remember that most families aren't as lucky as I was to have food delivered to us daily. Most parents can't leave their child's beside looking for food, and this is a problem because nights are LONG in a hospital. There is not peace! With vital checks every 4 hours, noise constantly in the hallways and bright lights. It is amazing that people go to a hospital because they are sick, because in reality the environment is toxic to healing.

Despite trying to rationalize with this food service person, she kept on rolling in her cart and began delivering food to families. It is observing this highly selfish and insensitive behavior that stayed with me tonight. In the midst of all the kindness we received when Mattie was ill, we also received a lot of what I observed today. This "I don't care" demeanor!! In fact, what I fear the most if getting sick and having to enter a hospital is contending with people like this! 

There are a great deal of people who work in a hospital setting, who truly shouldn't be there. They have no regard for fear, human frailty, and forget about compassion. I have a feeling if some of these people had to live in a hospital for a week, it would be SUCH OUTSTANDING sensitivity training, that observing what I did this afternoon would be a rarity. This food service person was on her own time and with her own agenda, totally disengaged from the environment she was working in and to the suffering around her. The families made no impression on her and this left me terribly sad because I know what it is like to be at the mercy of these clueless and heartless individuals. 

Tuesday, March 13, 2018

Tuesday, March 13, 2018 -- Mattie died 443 weeks ago today.

Tonight's picture was taken in March of 2004. Mattie was almost two years old. Peter captured this moment with a photo. I would call it..... tender moments with Mattie. For the most part, Mattie was constantly on the go and busy. He was not big into cuddly and hugging time. Yet, there were moments, in which he would spontaneously want your attention. This was one of those moments. 


Quote of the day: Great things are done by a series of small things brought together.  ~ Vincent Van Gogh

I feel like I have to be part Van Gogh when our Foundation Walk t-shirts get designed. Since the Foundation's inception (November 2009), we have worked with the same graphic artist. She helped us conceptualize our Foundation sun logo, our Walk and Family Festival logo, as well as all the designs on the front of our event t-shirts. Last year's creation was a word cloud, to resemble a sun. Each of the sun's rays captured meaningful words to Mattie Miracle. 

However, this year, we learned that Kristen could no longer work with us. She is balancing too much in her job, that she felt she couldn't devote the time to our projects. I can't tell you what a loss this has been for me. Why? Because Kristen wasn't just like any graphic artist. She was an artist that understood what our mission was about and was able to translate my thoughts into art. She was so good, that all I had to do was give her some input and my ideas and she would run with it, and create visual masterpieces. 

Naturally I had to find another graphic artist this year. Thankfully we work with a company who supplies our t-shirts and does some of our other printing jobs. So I wrote to them to see if they would be willing to do our graphic design. They agreed! However, with any transition, comes a period of adjustment. Thankfully I have started this t-shirt logo design project NOW, because I told them I wanted the t-shirt designed by the end of March, so we can go into actual printing in April. This enables us not to scramble with 400+ t-shirts a week before the Walk. Since it takes time to sort, fold, and stage shirts for the event. 

Any case, I am happy to report that the front design for the t-shirt is now done, and we are working on the back of the shirt. We literally have 17 corporate sponsors so far this year, and we would like to feature all of them on the shirt this year. So this is a work in progress!

Now onto an interaction I had today. I went out to lunch today with a friend. While eating, a woman came up to our table, because she recognized my friend and wanted to say hello. Both women (fellow moms whose children go to the same high school) instantly went into college talk..... how is yours doing, where is he/she going to go to college? While bantering, they spoke about a website called grown and flown. Basically an on line resource for parents whose children are growing up and are going to fly the coup and head to college. Mainly I imagine the site is to help parents with this adjustment. 

Naturally I listened to this and had all sorts of emotions internally. But then the woman standing next to me asked me about my children! If I weren't with my friend, I most likely would have told her off because she seemed like a clueless wonder who needed a reality check STAT! Instead, my friend stepped in and told her I am the co-founder of Mattie Miracle. Not sure that meant anything to this woman, because her response was..... how nice! How nice indeed!!! 

I have to admit that it is quite normal to ask other women about their children, and I know it would never have dawned on me that children die from cancer every day. Unless I experienced it personally. I don't necessarily hold that against her. But what I do know, is this conversation once again reminded me that I am different. Mattie's cancer has affected how I view everything about the world, and unfortunately in the process it can make me judgmental. In the sense that I would like people to be more clued into child loss. That not everyone is lucky enough to say they have a FLOWN and GROWN child problem. I have to imagine that given the alternative, people would opt for a flown and grown problem, than my own. If I have to be sensitive, open, and understanding of someone's flown and grown problem, why can't someone provide me with the same courtesy? This is a rhetorical question, but one that often floats around in my head.  

Monday, March 12, 2018

Monday, March 12, 2018

Tonight's picture was taken in March of 2004. In a way it is a follow up to last night's photo. We took Mattie to the DC Children's Museum and Mattie spent some time visiting the room with the vehicles. No surprise to us, as Mattie was BIG into anything with wheels. As you can see Mattie blended right into the fire truck. A favorite Mattie vehicle!


Quote of the day: My mother said to me, “If you become a soldier, you’ll be a general, if you become a monk you’ll end up as the pope.” Instead, I became a painter and wound up as Picasso. ~ Pablo Picasso


I posted tonight's quote because reading it made me laugh! Given that I have taught kindergartners about Picasso for several years now, this statement seems so fitting for his personality. 

A couple of Mother's Days ago, I received a hyacinth. It is a beautiful flowering plant, that is derived from a bulb. After the flower died off Peter planted the bulb, in Mattie's memorial garden, in our commons area. Look what came out today to greet us? Mind you, it was grey and frigid outside!!! 

Why do I have Anthem's logo on the blog? Well because I am proud to say that Anthem has just agreed to be a Mattie Miracle Level sponsor of the upcoming Walk & Family Festival. We are very grateful for their $5,000 contribution. 

Peter and I have been working with Anthem for over a year now. Anthem is very interested in the Psychosocial Standards of Care, which were Mattie's vision. We look forward to working with Anthem on developing ways to implement the Standards within their health plans. The beauty of this is once we start working with one big private insurer, my hope is that others will also take notice and want to get involved with the implementation process. Personally it would be lovely if congress would mandate the Standards, but given the slow pace of progress within the government (regardless of who is in office), I know that the way to evoke change starts on a totally different level. Which is why reaching out to Anthem is key. 

Needless to say, I told Anthem that they made my day and perhaps my MONTH. The Mattie Miracle level of sponsorship, is our highest level of support. We have been fortunate to have TeraThink as our Mattie Miracle Level sponsor since 2011. They are committed to us and our mission and it is thanks to them that we have been able to accomplish so many Mattie Miracles. I am deeply honored to have two Mattie Miracle Level supporters for this year's Walk. I feel this achievement for the Foundation is a direct reflection on its track record and on our vision for the future of cancer healthcare. 

Sunday, March 11, 2018

Sunday, March 11, 2018

Tonight's picture was taken in March of 2004. Mattie was almost two years old. That weekend we took him to the Children's Museum in DC. In one of the rooms, they featured vehicles... modes of transportation. From an early age Mattie loved anything that moved and had wheels. He was mesmerized by cars, trains, planes, trucks, buses, you name it! Though Mattie was a bit timid in the museum, he definitely wanted to explore the motorcycle and the fire truck!


Quote of the day: Work is love made visible. ~ Khalil Gibran

Sunny is a great excuse for both of us to walk together on the weekends. It doesn't matter what the weather is like, as Sunny always needs to walk. 

We took Sunny to Roosevelt Island today. Something we would normally do on the weekends with Mattie. Sunny enjoys the adventure, almost as much as Mattie did! Along our walk today, we met MANY other dogs and their owners. We also met children who ran up to Sunny and wanted to pet him. A usual occurrence really. 

However, look who Sunny found. Do you see this deer camouflaged in the trees?





The rest of the day, we have been glued to the computer. Each of us is re-vamping a portion of the 2018 Mattie Miracle Walk website. I wish I could say this is an easy task, but it can take hours! We made headway, but it isn't done yet. Nonetheless, by the end of this month (or sooner), the site will go live. We switched providers of our Walk website about three years ago. It was an important change as this site has the capability of handling registration, raffle tickets, and keeping a leader board. The leader board inspires competition between Walk teams, as individuals can see how much each team is raising toward our $85,000 walk goal. This Walk website also enables us to showcase aspects of our event, explains why we are raising money, and details what the money supports. It would be hard to host our Walk event on our Foundation website, as the Foundation website doesn't have the capability to manage event registrations. So stay tuned more about the Walk is coming soon!