Saturday, March 19, 2016

Saturday, March 19, 2016

Tonight's picture was taken on March 6, 2009. When Mattie first entered the hospital in July of 2008, there was NO child life playroom in the in-patient units. Literally if we wanted to get out of the hospital room and engage with others, we had to do it in the hallway. By the Fall of 2008, a child life playroom was built. It was such a welcomed change. We truly loved that space and the diversions it provided. The official ribbon cutting ceremony for the playroom was in March of 2009 and Mattie was given the opportunity to cut the ribbon and participate in the party! It was the highlight of our day!



Quote of the day: The worst type of crying wasn't the kind everyone could see--the wailing on street corners, the tearing at clothes. No, the worst kind happened when your soul wept and no matter what you did, there was no way to comfort it. A section withered and became a scar on the part of your soul that survived.  ~ Katie McGarry

Peter and I went to the Clyde's in Tyson's Corner, VA today to visit Becca Fischer. Becca is the executive chef at the restaurant and we are proud to call her a friend. 

We met Becca in 2010. We were introduced to her by the General Manager of the Clyde's at the Mark Center in Alexandria, VA. After Mattie died, Peter and I would have early dinners at Clyde's and surrounding us at our table was a laptop and pads of paper. We were trying to brainstorm ideas for the Foundation. One day, the general manager of the restaurant came over to us and literally asked us what we were doing. After all he saw us there every weekend, doing the exact same thing. It was like our weekend office. So we told him about Mattie (we mentioned that his restaurant was Mattie's favorite), the Foundation, and the fact that we were hosting a Walk fundraiser in Alexandria. He asked how he could help and offered food. It was at that point that he connected us with his executive chef, Becca. 

Becca began working at Mattie's favorite restaurant in 2007. So literally whether she knew it or not, she had cooked foods for Mattie for two years in a row. When Becca learned about our story and the purpose of our event, she decided she did not only want to donate food to our event but she wanted to attend it and cook it on site. Becca has been donating food and doing all the cooking for the Walk six years in a row! She is a deeply generous and compassionate person and this year has ALL NEW menu options. We received feedback from our supporters about what they want to see at the Walk, and WE LISTENED! Becca literally will have a food group for everyone this year. 

Peter and I had a lovely dinner at Clyde's and Becca joined us and talked with us for quite some time! She was the highlight of our weekend. I believe fate brought us together and she is another gift that Mattie has provided for us. 

Friday, March 18, 2016

Friday, March 18, 2016

Tonight's picture was taken in March of 2009. Mattie received a 3-D puzzle in the mail. That was a first for ALL of us. Mattie put the puzzle together, and it looked like a globe. On the globe were all sorts of sea creatures! Another Mattie favorite. This may not seem like it was hard to assemble, but it actually was quite challenging! If you look closely too, you can see the surgery scar on Mattie's right leg. Though it was healing, because Mattie had surgery on a leg and two arms, Mattie was never able to walk again. Why? Because when you rehab a leg and are learning to walk again, it only works when you have two arms that can support your weight. We learned this the hard way, no one prepared us for this loss. 


Quote of the day: Human bodies are designed for regular physical activity. The sedentary nature of much of modern life probably plays a significant role in the epidemic incidence of depression today. Many studies show that depressed patients who stick to a regimen of aerobic exercise improve as much as those treated with medication. ~ Andrew Weil

In December, I had an email exchange with a psychology professor at the University of Guelph, in Ontario, Canada. Meghan McMurtry sent out a message to members of the American Psychological Association's division 54 (Society of Pediatric Psychology), and our head researcher (who oversaw the Psychosocial Standards project) forwarded it to me. Basically Meghan asked for project ideas that her advanced undergraduate seminar class (which focuses on pediatric psychology) could work on to develop a usable product. As part of their course work, students are asked to work in groups to create a psychoeducational “Communication Product” which repackages information from the research literature so that it is interpretable to the public. This is the second year in a row that Meghan solicited project requests from researchers and clinicians in the community.

I had a 45 minute discussion with Meghan and our head researcher today. We are thrilled that Meghan understands the importance of the Standards and feels that her students can devote a whole semester to sifting through ALL 700 pages and consolidate it down to a usable document to share with treatment sites around the Country as well as with patient advocates. Having such a communication tool will be very valuable and I love the fact that Meghan wants to Skype us into her classroom so her students can interact with us and get to know our insights on why the standards were created and what role they will serve for children with cancer and their families. I love professors who integrate real world learning into the classroom. The students are not just working on a course assignment, but they are working on producing a product that goes beyond the borders of their classroom. In fact, a good communication product has the potential to help direct care around the Country. We look forward to working with Meghan and her students starting January 2017. 

Thursday, March 17, 2016

Thursday, March 17, 2016


Tonight's picture was taken on March 17, 2009. To me Mattie was the ultimate shamrock! We never knew this would be our last St. Patrick's Day with Mattie. That day, Mattie was headed to the outpatient clinic. Before heading there, he donned on all his clover gear that his friends gave him to celebrate the day! I remember taking this photo like it were yesterday!









Quote of the day: We’ve been wrong about what our job is in medicine. We think our job is to ensure health and survival. But really it is larger than that. It is to enable well-being.  ~ Atul Gawande, Being Mortal: Illness, Medicine and What Matters in the End

A few weeks ago, Peter and I were approached by the American Society of Clinical Oncology (ASCO). ASCO is the voice of the world’s cancer physicians. ASCO’s patient information website (Cancer.Net) brings the expertise and resources of ASCO to people living with cancer and those who care for and care about them. ASCO wanted up to do a Podcast for their website! I honestly did not know what a podcast was, but I got up to speed quickly. It is an interview, without an actual interviewer or moderator. So in essence you have to moderate and dialogue by yourself. In our case, we had crafted how we wanted the 20 minute interview to go, and basically Peter served not only as a speaker but our moderator! 

We want to thank Cancer.Net for the opportunity to discuss the importance of psychosocial care as an integral part of comprehensive cancer care. Within the Podcast we share personal insights we gained from Mattie's cancer journey and why these experiences led to our vision to develop and implement evidence based Psychosocial Standards of Care. Hope you find the link below of value!

When Medicine isn't Everything:

http://www.cancer.net/blog/2016-03/when-medicine-isnt-everything

Wednesday, March 16, 2016

Wednesday, March 16, 2016

Tonight's picture was taken in March of 2005. We took Mattie to Bunnyland at Butler's Orchard in Maryland. Around Easter, this farm has a wonderful spring event, that includes an Easter Egg Hunt. Mattie loved to go and experience the hay rides, the tractors, and collect eggs. It wasn't so much what was in the eggs, since Mattie did not like candy, but it was the process of the hunt! 


Quote of the day: Cure sometimes, treat often, and comfort always. ~ Hippocrates


I received an email today from a fellow cancer advocate. What I have come to the conclusion after this exchange is that my fellow advocates (who have personally experienced childhood cancer) do not always understand or appreciate psychosocial issues or support. It is very disheartening for me to know that our Foundation stands behind psychosocial support and services yet many families do not value nor do they feel it is their responsibility to advocate for them. Why? Because we as a society have gotten used to the mantra that childhood cancer is about the medicine, finding cures (a WORD I despise) and developing new biomedical treatments. Naturally Mattie Miracle stands behind that position, but we believe that the medicine and psychosocial care are equally important. You can't do one effectively without having the other in place. They complement each other. 

My fellow advocate wrote to me because he did not agree with a psychosocial fact I stated....
"For children and families, treating the pain, symptoms, and stress of cancer enhances quality of life and is as important as treating the disease (Institute of Medicine 2015 - Comprehensive Care for Children with Cancer and Their Families)."

After reading my statement, it caused this advocate said, "Of course it is important to treat the pain and symptoms – but that is not psychosocial, it is part of treatment for the disease. Nothing is as important as treating the disease and certainly, the psychological issue of stress does not rise to that level. As far as treating the pain and symptoms of cancer, that goes beyond psychosocial." In addition, he let me know that he doesn't agree with me that psychosocial care is as important as the medicine. 

Clearly there was a lot about his statements that did not resonate with me, and this feeling has lingered all day. First of all, I do not back down from my position. Physical pain in childhood cancer is real and it can produce devastating psychosocial consequences if not managed properly. Physical pain is known to impact quality of life, but we also know that psychosocial care can help mitigate such symptoms. This isn't a Vicki and Peter fireside chat, this is documented in the research. I am not sure how you argue with facts. Also even if the literature wasn't confirming this, we know all too well that psychosocial issues can and DO arise during childhood cancer treatment and the issues can hit critical! Peter and I lived through several psychological crises with Mattie that resulted from the treatment, NOT the other way around. Once you see your 7 year old develop clinical depression, anxiety and symptoms that looked like PTSD, you NEVER forget it. Which is why we created the Foundation to address these issues, to create standards of care so children have access to psychosocial services before they become critical and this impacts medical treatment. To say that these issues aren't as important or worse that psychological issues do not rise to the level of importance as the medicine is a myth and a faulty assumption. 

I am happy Mattie Miracle exists to be able to give voice to all the children and families who have been altered and impacted psychosocially by cancer. These voices need to be heard and we can't be intimidated or afraid to share this reality and to advocate for our needs.  

Specifically this is what I had to say this morning about the issue......

Beside the fact that the Institute of Medicine acknowledges my statement, pain and symptom management are crucial and are real psychosocial issues. I refer you to our psychosocial standards of care (#7 anticipatory guidance, and #13 palliative care). Psychosocial professionals understand the distress associated with treatment and its side effects (such as physical pain). If this distress isn't managed then this greatly impacts a child and family's ability to adhere to medical treatment. You can't talk about the medicine without talking about the psychosocial needs of the child and family. They go together and greatly influence one another. Therefore, in our Foundation's opinion and most likely the field of psycho-oncology...... it is definitely as important to address the psychosocial needs as well as the medical ones. It is impossible not to address psychosocial issues when a child is sick. They pop up on a daily and sometimes hourly basis!

Pain is NOT just about end of life issues. Some cancers, like Mattie's (osteosarcoma) for example provide EXCRUCIATING pain! Because pain wasn't managed well in his case (like many other children) it sets up a VERY bad psychosocial cycle of fear, anxiety, and depression. All of which compromised how doctors could interact with Mattie, his compliance to take scans (and you know if scans are delayed so is treatment), and when in pain there is NO quality of life (no playing, no interacting with others, not functioning independently, and less likely to comply with medical treatment because the child knows it produces more painful side effects). Addressing quality of life issues are vital for our children and let's not forget the Hippocratic oath which addresses CURE sometimes, CARE often, and COMFORT always. In medicine we CAN NOT keep compartmentalizing these issues especially when the data and our own personal experiences tell us otherwise.

In addition, the whole palliative care field is based on the notion of supporting children and families in pain (the actual symptoms!) to improve their quality of life. Many of the professionals within a palliative care team are psychosocial providers. Pain and symptoms trigger psychosocial issues. In addition, being a person who also deals with chronic pain, I know FULL well that when in pain (the pain itself) life looks pretty hopeless and it impacts what I physically and can mentally focus on. So I am definitely talking about both the pain and also the psychosocial impact of pain.

I wholeheartedly believe that medicine and psychosocial care are equally important. I have seen first hand in numerous children, that if psychosocial issues are not addressed, then the medicine is NOT as effective. If we do not address the pain and symptoms, then it will be impossible to focus on medical care. I do not like the word CURE. Since in cancer it doesn't exist. Mattie's oncologist told me a long time ago to change my lexicon because once you have cancer, it is part of your life. You may have no evidence of disease but that is as good as it gets (which is also a psychosocial issue to manage). So getting to your point, I believe managing psychosocial concerns are equally as important as treating the disease. You can't talk about one without addressing the other. It isn't an either or philosophy in order to achieve effective care. Again, I refer you to the palliative care standard which clearly shows the importance of comprehensive care that needs to be supplied across the disease trajectory. I believe every palliative care professional would stand behind what I am saying. Their whole philosophy according to the World Health Organization is that Palliative care is an approach that improves the quality of life of patients and their families facing the problem associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual.

Tuesday, March 15, 2016

Tuesday, March 15, 2016 --- Mattie died 339 weeks ago today.

This has to be one of my favorite photos that I took of Mattie and Peter. It was taken in March of 2003. We were visiting my parents in LA and we took Mattie to the LA Zoo. At the Zoo there was a bank of bamboo that Mattie found fascinating. I am not sure Peter knew what Mattie was doing behind him. Peter was looking for shade, but while Peter had that objective, Mattie had another!



Quote of the day: You feel fine, and then, when your body can't keep fighting, you don't. ~ Nicholas Sparks


It has been a non-stop day! This morning Peter and I had a conference call with Dr. Peter Adamson. Dr. Adamson is the chair of the Children's Oncology Group (COG), a clinical trials group supported by the National Cancer Institute (NCI), and is the world's largest organization devoted exclusively to pediatric cancer research. Dr. Adamson was also recently appointed by President Obama to the National Cancer Advisory Board. So in essence he is considered a major leader in the field of pediatric oncology. We reach out to him today because we want COG's support of the Psychosocial Standards. It is important to have COG's support because they guide the majority of thinking and research in the field. Though we haven't received an official quote of support yet, I am happy to report that COG will support the standards that were developed and published in December. That is a huge achievement. 

Recently I went out with one of Peter's colleagues from Canada, who is a medical doctor. He told us that the Hippocratic oath is to cure sometimes, treat often and care always. So in essence, CURE, COMFORT, and CARE. Yet in our opinion medicine has forgotten about comfort and care. Instead, the focus is solely on the cure and when a cure isn't possible, well watch out. Chaos will erupt because the system isn't programmed to manage, cope, or support patients and families along the journey of a health crisis. I love the three C's and it has become my new mantra. A mantra that we have been stating all along.... comprehensive cancer care must include psychosocial care (the care and comfort). It this is a language doctors understand, then in my opinion we have to remind them of the oath they took when becoming a doctor.  

After the phone call, I then had a full day at Georgetown Hospital. After meetings there, I had the opportunity to visit with my niece and sister-in-law who were in town touring the University as a potential school for my niece. It is always interesting to see the campus through another generation's eyes! 

Monday, March 14, 2016

Monday, March 14, 2016


Tonight's picture was taken in March of 2005. Seeing it always makes me laugh. Primarily because of how Mattie was holding the bat. He had no care in the world as to whether he was holding it in the right direction, the correct way, or even how he should hit the ball! He liked batting it around on the floor! Yet he had his head up, was smiling, and was having a great old time in his dinosaur pajamas! 








Quote of the day: Service is the rent we pay for being. It is the very purpose of life, and not something that you do in your spare time. ~ Marion Wright Edelman

I am into my second week of physical therapy and today I learned the benefits of ultrasound massage. Last week an ultrasound was used on my neck and today on my back. The equipment looks just like an ultrasound wand one is used to for medical testing. However, there is no computer or anything hooked up to it to record data. Instead sound waves are used to break apart muscle knots. Ultrasound massage is supposed to relieve pain and aid in healing. It uses high frequency sound waves to penetrate deep into your body to relieve pain and soreness. The sound waves excite the bodies’ molecules providing a warm relaxing effect.

Sound waves move at different rates, producing different effects depending on type of tissue treated. Healing results are due to heat generation in injured tissue and its acoustic properties. I went in today with a horrible back pain, which I had all weekend, and after this treatment, the pain is much better. 

Of course one has to be cognizant not to sit in front of a computer for hours on end. I am come to the conclusion that sitting causes more damage for the back and neck than benefit. I always joke with Peter about the walking desks in his office, but the physical therapist tells me such a desk is better for one's spine.  

I went for a walk and it was clear that the sign of Spring is upon us. Despite it being gray and raw today!

The daffodils are blooming!

The magnolias are starting to bud!

..........and my all time favorite, the Red Bud Trees are telling us warmer weather is on its way!

Sunday, March 13, 2016

Sunday, March 13, 2016

Tonight's picture was taken in March of 2004. Mattie was outside on our deck and playing in one of his tents, that had tunnels attached to it. Mattie always gravitated to these little hideaways. He typically brought all his toys and things with him, and could play in there for hours! Of course as long as he had a play companion like Peter and me. For Mattie, play was about being social and he enjoyed bringing you along for the experience!

Quote of the day: The secret of the care of the patient is in caring for the patient. ~ Francis Peabody

Peter and I received another big item donation today. It came from Charlotte, Mattie's "girlfriend." 

These items support the Mattie Miracle April Item Drive, which we established five years ago to honor Mattie's April birthday. These items are used to stock the FREE snack/item cart that we offer to families caring for children at MedStar Georgetown University Hospital. When caring for a child, it is hard for family members to remember to pack items to meet their own basic needs.

Our supporters have asked us to put together a "WISH LIST" so that they can support this item drive anywhere in the Country. We want to thank you for considering to use Amazon to purchase these items. Mattie Miracle is part of Amazon's Smiles Program, so every dollar you spend, Amazon will give the Foundation 0.5% of the purchase price!!!

Mattie Miracle's Wish List:
http://smile.amazon.com/registry/wishlist/2UQOK4GY955ZL