Mattie Miracle 8th Annual Walk & Family Festival was an $88,000 Success!!!

Mattie Miracle Cancer Foundation Promotional Video

Thank you for keeping Mattie's memory alive!

Dear Mattie Blog Readers,

It means a great deal to us that you take the time to write to us and to share your thoughts, feelings, and reflections on Mattie's battle and death. Your messages are very meaningful to us and help support us through very challenging times. To you we are forever grateful. As my readers know, I promised to write the blog for a year after Mattie's death, which would mean that I could technically stop writing on September 9, 2010. However, at the moment, I feel like our journey with grief still needs to be processed and fortunately I have a willing support network still committed to reading. Therefore, the blog continues on. If I should find the need to stop writing, I assure you I will give you advanced notice. In the mean time, thank you for reading, thank you for having the courage to share this journey with us, and most importantly thank you for keeping Mattie's memory alive.


As Mattie would say, Ooga Booga (meaning, I LOVE YOU)! Vicki and Peter



The Mattie Miracle Cancer Foundation celebrates its 7th anniversary!

The Mattie Miracle Cancer Foundation was created in the honor of Mattie.

We are a 501(c)(3) Public Charity. We are dedicated to increasing childhood cancer awareness, education, advocacy, research and psychosocial support services to children, their families and medical personnel. Children and their families will be supported throughout the cancer treatment journey, to ensure access to quality psychosocial and mental health care, and to enable children to cope with cancer so they can lead happy and productive lives. Please visit the website at: www.mattiemiracle.com and take some time to explore the site.

We have only gotten this far because of people like yourself, who have supported us through thick and thin. So thank you for your continued support and caring, and remember:

.... Let's Make the Miracle Happen and Stomp Out Childhood Cancer!

A Remembrance Video of Mattie

Random Shots of Mattie, Family and Friends

February 4, 2017

Saturday, February 4, 2017

Saturday, February 4, 2017

Tonight's picture was taken in February of 2009. We were home between hospital treatments and Mattie received this very generous Lego Victorian House kit from his friend. For HOURS and HOURS, Peter and Mattie built this creation together. As you can see Mattie was proud of this accomplishment. Believe it or not, this Lego structure remains in our living room today. 



Quote of the day: If you don’t know where you are going, any road will get you there. ~ Lewis Carroll



I somehow relate to Lewis Carroll's quote tonight. Though I am not lost per se, I do feel like my roads all lead to the same place...... they lead to work and more work. Which may sound great, but some times it is tiring, tedious, and frustrating. I would like to take a break, but if I stop working things don't get done. Mind you, I can't always get things that are my check list done either. Which brings about further stress and frustration. 

I could have worked the whole day away, but Peter insisted we go out and naturally Sunny wanted walks. So I had a diversion, but as soon as I got home, I was pulled right back into working. We are leaving in two weeks for a conference in Orlando, Florida. We are presenting and hosting a 90 minute town hall at the American Psychosocial Oncology Society. Mattie Miracle is funding several speakers to present with us on the standards and the implementation process. So tonight's efforts involved coordinating with speakers, working on power points, and let's not forget tasks toward our May 21st Walk & Family Festival. Managing the Foundation successfully means constant juggling, and not juggling of simple and light things. So I am signing off for tonight, as tomorrow, the process starts all over again. 

February 3, 2017

Friday, February 3, 2017

Friday, February 3, 2017

Tonight's picture was taken in February of 2009. On Valentine's Day to be specific. My last Valentine's Day with Mattie. It was an unforgettable day. Mattie worked on several creations for me with his art therapists. I was literally thrown out of the child life playroom so Mattie could surprise me. When I came back in, I was greeted with a box filled with cards, cutouts and this magnificent heart crown. I put it on my head and Mattie decided to touch noses. This was a typical Mattie move with me.... touching noses and staring into each other's eyes. I am very grateful that Mattie's art therapist, Jenny, captured this precious and priceless photo. A photo that turns out to be one of my favorites. 


Quote of the day: There was a young man walking down a deserted beach just before dawn. In the distance he saw a frail old man. As he approached the old man, he saw him picking up stranded starfish and throwing them back into the sea. The young man gazed in wonder as the old man again and again threw the small starfish from the sand to the water. He asked, “Old man, why do you spend so much energy doing what seems to be a waste of time.” The old man explained that the stranded starfish would die if left in the morning sun. “But there must be thousands of beaches and millions of starfish!” exclaimed the young man. “How can you make any difference?” The old man looked at the small starfish in his hand and as he threw it to the safety of the sea, he said, “It makes a difference to this one!” ~ Author unknown


I had the opportunity to talk to the Coalition in Virginia that helps to craft the State Cancer Plan. We spoke for about an hour and I actually got frustrated! I have to decide whether to sign Mattie Miracle up for this task. At the moment, there is NO mention to childhood cancer in the plan and there seems to be a mind set that only certain things can be added to the plan. Translation.... there isn't room for psychosocial care and support. For various reasons, which I won't go into here. However, I don't take no for an answer and said I was going to comb through every State plan in our union to see how or if psychosocial care was addressed. Thankfully I was referred to this incredible website that interestingly enough is run by the George Washington University (my alma mater). The website is called the Goal Bank, and literally I can put in all the keywords I want to search and up pops the information for EVERY state. I can't tell you how much time that saved me!!! What would have taken me hours, took me minutes. 

GWU's Cancer Goal Bank:
http://smhs.gwu.edu/cancercontroltap/goalbank?title=&field_when_value2%5Bvalue%5D%5Bdate%5D=&field_patient_population_value%5B%5D=children&=Search

To look up the actual cancer plans by State:
https://www.cdc.gov/cancer/ncccp/ccc_plans.htm


So what did I learn!? I learned that ONLY, I mean ONLY FIVE states in our Country have cancer plans that address childhood cancer. In the other states there is NO mention, as if children don't get cancer. When I did a search using the Goal Bank and plugged in the keyword, "children," I found 12 states covering children's issues. But these are broad health issues like the exposure to secondary smoke, the importance of sunscreen for UV protection, and nutrition and exercise concerns. Here are the five states below that make mention in their goals to anything childhood cancer related. 

DC: 

  1. Improve the policy and regulatory environment affecting access to pediatric and adult palliative care services in the District

NC: 

  1. Enhance the early diagnosis, treatment, and quality of life for those individuals diagnosed with childhood cancer and their families 

NJ: 

  1. To enhance the quality of life of the child, adolescent, and/or young adult patient with cancer from diagnosis through treatment to survivorship across the life span
  2. To foster the psychosocial health of the child with cancer and the family
  3. To improve care for adolescents and young adults diagnosed with cancer through encouraging participation in clinical trials
  4. To promote awareness of palliative care strategies for the child with cancer among healthcare professionals, patients, and families. Pain management can be used as an example of how these strategies can be implemented successfully
  5. To reduce/eliminate suffering and death due to childhood/adolescent cancers and to provide survivors and families the services needed to live meaningful and productive lives


TN: 

  1. To reduce/eliminate suffering and death due to childhood/adolescent cancers and to provide survivors and families the services needed to live meaningful and productive lives

WY: 

  1. Foster the psychosocial and physical health of the child with cancer and the family
  2. Facilitate and monitor pediatric cancer needs in Wyoming
  3. Increase education related to appropriate end-of-life care for childhood cancer patients


I am truly enthralled with New Jersey's Cancer Plan. In fact, they have a dedicated chapter to childhood cancer and a whole section to psychosocial care and quality of life. If one state can put psychosocial care in its plan, then the rest need to evolve with the 21st century! NJ to me stands as an excellent model and it should be easier to sell this to another state when someone else has already invented the wheel (in this case the wheel is in NJ). I wrote to the NJ coalition tonight because I noticed in their state cancer plan there were goals to create evidence based psychosocial standards of care. What they want to do at the state level, we have done on the national level. Therefore, I wrote the note below and sent it tonight!
----------------------------------------------

Dear................

I am contacting you as a childhood cancer advocate and the President of the Mattie Miracle Cancer Foundation to commend you and the Coalition for the comprehensive State Plan that you created. I am beyond thrilled to see that Childhood Cancer has its own chapter, and for the inclusion of screening, and psychosocial care for the entire family system. I have been searching through many State plan goals by using the George Washington University's Goal Bank and I am stunned that only five states in our union even mention childhood cancer in their plans. I think NJ's plan is a beautiful model for other states to emulate. 

I am writing to you because I noticed on p.112 of the plan it says......

CC-4.2.1 Conduct a literature review to investigate psychosocial standards of care.
CC-4.2.2 Collaborate on a consensus statement for psychosocial standards of care with key stakeholders.

I wanted to alert you that the Mattie Miracle Cancer Foundation had the vision in 2012 to create evidence based psychosocial standards of care for children with cancer and their families. We funded a three year long project that pulled in over 80 health care providers around the Country, Canada and the Netherlands to methodically develop standards. I want you to know that these standards were published in Pediatric Blood & Cancer in December of 2015. We are now in the process of working on implementing the standards at treatment sites around the Country. The reason why I am alerting you to this is because these exact goals were mentioned in your State plan, and I am so happy to see your group felt they were needed. What the plan is recommending on the State level, we have accomplished on the National level and I wanted to make sure you and your team had access to these historic standards. We paid for open access to the Standards indefinitely. They can be found at www.mattiemiracle.com/standards.


My husband and I created the Foundation in 2009, two months after we lost our only child, Mattie, to bone cancer. We learned through Mattie's battle that childhood cancer is not just about the medicine, which is why the focus of our foundation is to enhance awareness of the psychosocial issues and needs of children with cancer and their families and to increase access to psychosocial care services. We set out to develop evidence based Standards so that children and their families would be ensured optimal psychosocial care throughout the cancer trajectory. Thank you so much for your time and all your incredible efforts on the State Plan. Vicki

February 2, 2017

Thursday, February 2, 2017

Thursday, February 2, 2017

Tonight's picture was taken in February of 2009. I was sent out of the child life playroom for quite some time, so that Mattie could surprise me with valentine's when I returned. Mattie worked on this project with his art therapists. Mattie cut out hearts, wrote messages, and designed a box and heart crown for me. Jenny, one of Mattie's art therapists snapped photos of us that day. In fact my favorite photo of Mattie and I in the hospital, was captured by Jenny. I will post it perhaps tomorrow. In any case, I still have this box of valentine's Mattie made for me. 



Quote of the day: The world is so empty if one thinks only of mountains, rivers & cities; but to know someone who thinks & feels with us, & who, though distant, is close to us in spirit, this makes the earth for us an inhabited garden.  ~ Johann Wolfgang von Goethe


I had the opportunity to go out to dinner tonight with my friend in cancer. I met this friend in 2013, when she lost her only child. That of course was the first commonality that we shared. Since the first day we met, through to today, we text message each other everyday. No matter where we are or go. Initially I wrote to her daily because I knew how hard it was to survive the first year without your child. But typically after year one, the contacts and support ends. Which is why I did not stop writing after year one. Of course as the years continued we began to mutually support each other. I can try to describe how I feel or what I am thinking to other friends, but that isn't quite the same as someone living this journey of losing an only child. 

Tonight we also shared the highs and lows of running a Foundation, another commonality we share. In any case, Peter is on travel for work this week, so I appreciated the opportunity to get out, talk, and eat. We did not solve the world's problems or even our own for that matter. But there is something reaffirming to know you aren't alone in thoughts and feelings. 

February 1, 2017

Wednesday, February 1, 2017

Wednesday, February 1, 2017

Tonight's picture was taken in March of 2009. You maybe wondering what was going on in this photo? What was going on was a physical therapy session! Mattie had an entourage with him including Mary (a child life volunteer), Meg (a child life intern), a physical therapy intern on my left and the fellow in front is Brandon (Mattie's best buddy and fellow cancer patient). Brandon and Meg were moving their hands because they were dancing to ABBA's Dancing Queen! It wasn't unusual for ABBA to be blaring down the hallway to inspire Mattie to move his body!  Which is why every Foundation walk is started with the playing of Dancing Queen! This afternoon, I went back to the hospital to push our Mattie Miracle Snack cart. I do this once a month and what people do not understand is that I have walked these hallways many a time, I have lived endlessly in the rooms, and I though years may have gone by, I remember the torture quite well. 


Quote of the day: You may not have saved a lot of money in your life, but if you have saved a lot of heartaches for other folks, you are a pretty rich man. ~ Seth Parker


It was a super busy day, don't ask me why. In between doing so many things, I naturally have Sunny to walk. Who reminds me when it is break time. At some point today I went to the Hospital to push our snack cart around the units. I do this every month. I met all sorts of families today. Two of which couldn't say enough about the cart. The ironic thing though is they think the cart is provided by Georgetown. Which it is NOT! But they feel Georgetown is special because of this caring and thoughtful service. Rather a riot no?! I don't like correcting parents and families because they have enough on their minds and plates and the point of the cart is to meet their needs, not to highlight where items are coming from! I also know that when I was in their situation, it neither mattered who provided the service, how it was funded, or what organization was behind it. That may sound harsh, but it is true. When dealing with life and death situations, that is the priority and the other stuff is nonsense. 

While roaming the units with the cart, I noticed a young physician who looked very familiar to me. I literally stopped her in her tracks and said..... "do I know you!?" At which point she said, we knew each other. Seven years ago, she was a medical resident and cared for Mattie. Now she is a chief attending physician. How times change! But I remember Sarah very well. She has a great disposition, was wonderful with Mattie, and she even dressed up as Harry Potter for Halloween. The fact that she dressed up caught Mattie's attention. I must admit I truly disliked most of the residents we had to deal with, for MANY reasons. But there were two I liked and Sarah was one of them. Sarah says that she always remembers Mattie and that he had a profound impact on her career. I unfortunately did not get to ask her why but hopefully I will run into her again. 

The other highlights of the day came by email. A national nursing organization wants to partner with us to financially support evidence based research that would specifically assess how the standards are being implemented in clinical practice. It is an outstanding opportunity that we are looking into because we know we need evidence based interventions that clinicians can use to meet the requirements of each psychosocial standard. We have worked with this nursing organization before and in 2016, they presented us with a national award. 

The second piece of information that caught me off guard today is that Mattie Miracle has been invited to serve with the Cancer Coalition of VA to develop the five year cancer plan for Virginia. Each State has its own cancer plan and a plan guides cancer care in one's region. This is a huge invitational ask! Naturally I decided to read through Virginia's cancer plan (go to this link: 
http://cancercoalitionofvirginia.org/PDFs/About/ActionPlan.pdf), and what I QUICKLY assessed is childhood cancer is NOT even mentioned as a cancer impacting the residents of Virginia. Clearly not the reality! If that wasn't bad enough there is NO mention of the need for psychosocial care and support. So I wrote back the representative who contacted me and asked whether the intention is to include childhood cancer and psychosocial care in this upcoming plan. The answer is yes and this is where Mattie Miracle can help them. Music to our ears, so hopefully we will connect by phone soon. 

---------------------------------------------------------------------------------
For more information about Cancer Plans, I refer you to this article written by the American Childhood Cancer Organization:
http://www.acco.org/wp-content/uploads/2015/04/Is-Childhood-Cancer-Included-in-YOUR-States-Cancer-Plan.pdf

Specifics from the article worth highlighting......................

In 1998, the Centers for Disease Control and Prevention (CDC) funded the first comprehensive cancer control programs in five states – specifically Colorado, Massachusetts, Michigan, North Carolina and Texas. Since that time, the CDC through the establishment of the National Comprehensive Cancer Control Program (NCCCP) has provided grants to assist all 50 states, the District of Columbia, seven tribes and seven U.S. Associated Pacific Islands and Territories with the development and implementation of cancer control plans. These plans guide and coordinate efforts within the state to gather state specific cancer incidence and mortality data (cancer surveillance), as well as support coordinated efforts to increase access to quality care and treatment, promote prevention and early detection programs, develop education programs to promote healthy lifestyle choices to enhance the quality of life of survivors, and strategies to reduce health disparities.

Each state is charged with identifying and implementing goals and strategies specific to address their cancer burden and needs. The plans are often implemented over a four or five year period and include strategies such as the passing of legislative policies, and investments in early detection such as state sponsored free breast and cervical cancer screenings to low and uninsured women. Plans also include cancer prevention, education, and evidence based research initiatives to identify and evaluate state cancer priorities and outcomes of the plans as guidance for subsequent plans.

Sadly, childhood cancer for the most part has been a ‘forgotten child’ at this table. In spite of the fact that childhood cancer remains the leading cause of death by disease for our nation’s children under the age of 15 years, twenty-three states have NO mention of childhood cancer in their state’s cancer plans. Children are solely mentioned in context of education and awareness programs aimed at healthy children. These include education programs such as smoking prevention and cessation, healthy lifestyle choices such as exercise and healthy eating with the focus being placed on reducing the cancer burden as adults. 

January 31, 2017

Tuesday, January 31, 2017

Tuesday, January 31, 2017 -- Mattie died 385 weeks ago today. 

Tonight's picture was taken in February of 2009. Mattie was in the outpatient clinic sitting by the art table, working on a clay pottery wheel. Sitting beside him were Jenny (his art therapist) and Whitney (a child life intern). Mattie made many beautiful clay pieces while battling cancer and I have each and everyone of them on display in our living room today. I am not sure that the art therapists realized this while Mattie was creating his masterpieces, but every item they did together, became important memory pieces for Peter and me. The beauty of the art table was you did not have to be physically mobile to participate and this worked out wonderfully for Mattie. I can't tell you how much insightful information we found out about Mattie and his feelings/fears about cancer while he was creating and playing at the art table. It was therapy in motion!


Quote of the day: Heroes didn't leap tall buildings or stop bullets with an outstretched hand; they didn't wear boots and capes. They bled, and they bruised, and their superpowers were as simple as listening, or loving. Heroes were ordinary people who knew that even if their own lives were impossibly knotted, they could untangle someone else's. And maybe that one act could lead someone to rescue you right back. ~ Jodi Picoult


Not to hold you in suspense after last night's blog..... but today's presentation to the University of Guelph in Ontario, Canada went well. I was on the phone for TWO hours. Literally when I finished I could hardly talk. The professor was able to fix technology on her end which enabled me to see the class and hear them. Though not well. Things were muffled and filled with echos whenever they spoke. Nonetheless I gave them a comprehensive presentation of Mattie, childhood cancer facts, the importance of psychosocial support, the Mattie Miracle Cancer Foundation, and the developmental process to create the Psychosocial Standards of Care. Fortunately I went into this presentation with NO or low expectations. Given my years teaching undergraduate and graduate students, I am very well aware of the developmental age differences between these two student groups, which directly translates into course investment and participation.  

After being on the phone for two hours, there wasn't one student comment or question. In all fairness, there were 46 students in the class and if they wanted to speak they would have to stand up and walk to the computer's microphone. Which certainly can be intimidating given the subject matter. So that didn't make free flowing communication natural to say the least. Later in the day the professor did email me and thanked me profusely. She said that the students were visibly moved and this also prevented them from talking. Nonetheless, apparently she was crying through my presentation and the students observed her! The professor has asked me to generate test questions based on my content for her course. So I am in the process of doing this as well. It was important to introduce the students to Mattie, childhood cancer in general and the standards, because their assignment is to sift the standards down into marketable handouts for professionals and for parents. It will be curious to see what that looks like over the course of the semester. 

Meanwhile, I am on a tirade within my complex. With the passing of the legalization of recreational use marijuana in DC all hell is breaking loose around me. People are smoking this foul substance in the buildings of my complex, even in public spaces (which isn't legal). So after verbally complaining for two weeks, I finally put my issues in writing to management. Before doing that, I had to stop what I was doing today to read the DC law and get educated about the issue. So my letter is below in case you are interested in reading it. From all my Internet searches today I realize I am not the only one who is complaining!

---------------------------------------------
MY LETTER---

I want to thank you both for listening to my concerns about my disheartening observations within our Complex since the passing of Initiative 71 (Legalization of Marijuana Law) in the District of Columbia. As you know I have lived here since 1994 and consider my unit to be my home. I appreciate the opportunity to put my complaints in writing with the hopes that you will share this letter with management. I imagine management is equally confused about how to proceed and to regulate residents given the passing of Initiative 71, however, I feel strongly that a stance must be made to preserve the peaceful and safe community I have come to know and appreciate over the decades.

Over the course of the last six months, I have observed the smell of marijuana in complex hallways, in the garage for residents, and I consistently see several young adults lighting up and smoking marijuana outside in the fire lane, which is a public space in DC (meaning that this is against the law and is a federal offense). I have been doing some research into the law and what is legal. I have included several links below that I feel are of value for management. In DC, two ounces or less of marijuana is legal to possess. Given the frequency and duration of smoking coming from Unit# (I removed this specific info for the blog), I suspect this resident is well beyond the legal limit. Regardless of the time of day or day of week, the entire hallway of the third floor of Building X (changed the name for the blog) is consistently inundated with the smell of marijuana. Though the resident  maybe smoking the substance in his private dwelling, the smoke is seeping into the hallway, a public space. This is infringing on the health and well-being of all of us who access and use the hallway. Mayor Bowser was interviewed by Fox 5 News on this very issue and was quoted as saying, "It is up to apartment buildings and condo buildings to regulate their smoking policies.” Specifically, because there is NO specification in the law about resident complaints and smoke seeping into shared spaces. Now is the time for management to start developing policies and procedures to handle this issue because the smoke of marijuana is not just unpleasant but also has health consequences on all of us.  

Here is what the American Lung Association has to say about marijuana smoke and also those of us exposed to secondary smoke (http://www.lung.org/stop-smoking/smoking-facts/marijuana-and-lung-health.html?referrer=https://www.google.com/):
Smoke is harmful to lung health. Whether from burning wood, tobacco or marijuana, toxins and carcinogens are released from the combustion of materials. Smoke from marijuana combustion has been shown to contain many of the same toxins, irritants, and carcinogens as tobacco smoke. Secondhand marijuana smoke contains many of the same toxins and carcinogens found in directly inhaled marijuana smoke, in similar amounts if not more.  No one should be exposed to secondhand marijuana smoke. Due to the risks it poses to lung health, the American Lung Association strongly cautions the public against smoking marijuana as well as tobacco products.

In addition to dealing with the noxious smell of this substance, there is also an issue of safety associated with the recreational use of marijuana. Though research and the FBI Uniform Crime Report shows no increase in crime with the use of medical marijuana, the verdict is still out about the use of recreational marijuana. It is quite possible and certainly a community concern that recreational use of marijuana can lead to the need to seek and possess illegal substances, to drug dealing activity in our complex, and potentially altered cognitive states and destructive behaviors within our buildings. It is my hope that the Complex's management put a policy in place because it is their responsibility to make sure that living conditions are favorable for their residents' lives, safety, and health. In addition, when a behavior is deemed offensive or a nuisance, there is more of a chance a behavior can be addressed and a situation can be reinforced when clear resident guidelines are established.

I look forward to hearing a response from management on this serious concern that impacts the lives of all of us living here, and I welcome you to contact me to further discuss my position and concerns.

In appreciation,
Victoria A. Sardi-Brown, Ph.D., LPC



Facts on DC Marijuana Laws:

Marijuana facts in DC:

Legalization of Possession of Minimal Amounts of Marijuana for Personal Use Initiative of 2014 (Initiative 71):

DC residents complain of pot smoke in condos and apartments: http://www.fox5dc.com/news/1625142-story

How to confront a pot smoking neighbor:

January 30, 2017

Monday, January 30, 2017

Monday, January 30, 2017

Tonight's picture was taken in February of 2009. Mattie was sitting in his wheelchair outside his hospital room door. You will notice that I taped Mattie's masterpieces on the door, so those who entered the room would have to see them. Mattie liked to see his artwork on display. But I did this for multiple reasons. First, I wanted Mattie to see his work and be proud of them, second, I wanted to remind those entering the room that a child was inside. One that was defined not just by his disease, and third, these paintings sometimes enabled people to initiate conversations with Mattie and to engage with him, when typically he wanted to shut out the world. 


Quote of the day: It’s so hard to communicate because there are so many moving parts. There’s presentation and there’s interpretation
and they’re so dependent on each other it makes things very difficult. ~ Garth Stein


Last week was the Roundtable and I can't say things have really lightened up for me since the completion of that event. Tomorrow, I will be having a two hour conference call with an undergraduate class at the University of Guelph in Canada. A psychology professor contacted me a year ago, and asked if Mattie Miracle would work with her class on a community service project. She read about the psychosocial standards of care and wanted to know if her students could get involved in the dissemination process. Basically the students are assigned to review the standards and to create a one page handout on each standard that gives an overview of it, its importance and how it will help direct care. These handouts will be geared to two separate groups of people.... professionals and parents/family caregivers. 

Unlike my experiences working with the George Washington University and Georgetown University, this university has issues with technology. Which isn't so much of a problem, unless you have a person like myself who is coming to class virtually. Because of issues on their end, they will be able to hear me and see my presentation but I won't be able to see or hear them. That may not sound challenging, but to me it is impossible. When I talk about Mattie, childhood cancer and the Foundation, it is imperative to me that I see non-verbals and can assess audience feedback. Based on my observations I can tweak the message and how the content is delivered. So literally I am scheduled to talk for two hours tomorrow, presenting like a soliloquy. 


I have developed a 70 slide presentation deck to assist in my session. I will be covering who is Mattie, facts about childhood cancer, the importance of psychosocial care, the Mattie Miracle Cancer Foundation and what we do, and finally the developmental process in the creation of the Standards of Care. 

This slide illustrates some of the psychosocial issues we faced with Mattie (exhaustion, Depression, Pain, Sadness, and Isolation).  In addition, I cite research that discusses issues that arise with childhood cancer and how psychosocial well being affects physical functioning and treatment outcomes.


This to me is a happier slide than the one above. It illustrates Mattie being a child, filled with activities and smiles when psychosocial care was provided. 

Naturally the research indicates that psychosocial care can manage pain, fatigue, and symptoms and it can improve quality of life. 
Childhood cancer facts.... typically these facts catch students by surprise. Mainly because childhood cancer isn't discussed often in society and therefore if it isn't discussed it is considered rare or non-existent. 







The reality... of which most people don't realize is that many families can go bankrupt caring for a child with cancer. Insurances don't always cover every aspect of care, or have lifetime caps of coverage. 
This slide is always a shocker, because for the most part children are treated with drugs from the 1950s and 1960s. Few new drugs have been developed to help children. 
The psychosocial issues
The psychosocial impact 
Clearly if you look at this slide, it appears that survival rates have increased significantly for all cancers over the last several decades. It looks good on the surface, but these are five year survival rates. Meaning that for example with Hodgkin Lymphoma (the yellow line) there maybe an 85% survival rate, which means out of 100 kids, 85 children are still alive five years after diagnosis. If you are a child who is in the 15% (the ones who die), I can assure you this 85% survival rate means nothing. The research also doesn't highlight how many of these 85% five-year survivors relapsed, developed secondary cancers, or even died after five years. So the five year rule is truly NOT the whole picture of childhood cancer. 

To me this is an interesting bar graph because it shows the amount of trauma children and parents experience in different hospital units/dealing with different medical issues. It is noteworthy that the yellow is cancer, which doesn't surprise me in the least. Childhood cancer is traumatic for both the child and the parents..... and we are living proof of this.  

January 29, 2017

Sunday, January 29, 2017

Sunday, January 29, 2017

Tonight's picture was taken in February of 2009. I remember taking this photo as if it were yesterday. Mattie was in the child life playroom with Sally, the story lady! Sally was an incredibly gifted volunteer who visited the hospital almost weekly. Since we lived in the hospital, I always welcomed a Sally day. Sally runs a drama company and literally would come into the hospital to put on productions and skits with the children. She got everyone to participate, parents included. Sometimes she had props, clothing, and musical instruments to reinforce her stories! Mattie LOVED Sally, and Sally appreciated Mattie. Mattie did not like many visitors, but if he heard Sally was outside his door, she was always welcomed in. Which meant that Sally was SPECIAL!  


Quote of the day: Such short little lives our pets have to spend with us, and they spend most of it waiting for us to come home each day. 
It is amazing how much love and laughter they bring into our lives and even how much closer we become with each other because of them. John Grogan


Sunny went to his third obedience class today, out of eight classes in total. The teacher is the same person who taught his Good Canine Citizen prep class in the fall. Many friends have told me that Sunny is very compliant and good natured and doesn't need this class. But my response is ALWAYS.... the class isn't just for Sunny. I haven't owned a dog as an adult before and therefore I feel as if I have a lot to learn in order to be an effective doggie parent. It is true Sunny knows many commands, but that is him! I don't know them, nor do I know how to administer them. In addition there are many non-verbal signs that mean sit, stay, come, down, etc. I am learning all of them..... which is why I enrolled us in the class. 

In the winter months, it is hard to get outside and be motivated. But this class every Sunday, gets me up and moving. It is a good routine, which without it, and most likely would be working instead. I also enjoy meeting the other dogs in class and watching them as they are learning. The dogs are not allowed to interact with each other because it is a training class, which for a social dog like Sunny, is an impossible task! I am learning the art of using certain commands with Sunny such as "leave it" and "no." All important commands, not just for managing dog interaction issues, but all kinds of issues a dog can get into trouble with at home and in our daily life. 

The teacher approached me prior to class starting and wanted to let me know how much improvement she sees in me as a handler. That meant a lot, and I do think Sunny and I are a good pair. Though compliant, he has a stubborn streak and also can get distracted at times by the need to socialize with other dogs. Just like managing a toddler, you also have to remain calm and assertive when working with a dog. Both toddlers and dogs really do look to you for guidance and to set limits and parameters on their activities and how they interact with the world. Having this insight raising Mattie, does in a way help me with Sunny. Mind you I am not equating a child to a dog, or Mattie to Sunny, but I am talking about the skill set one develops as a caregiver. Regardless of whom or what you are providing the care to, there are transferable skills.