Saturday, March 24, 2012

Saturday, March 24, 2012

Tonight's picture was taken in March of 2003. This was Mattie's first trip to the Los Angeles Zoo. At the Zoo they have a wonderful kid's section, which includes a petting zoo. Mattie and Peter went into the petting zoo, and as you can see while riding on Peter's back, Mattie was trying to understand where he was, what he was doing, and why a big animal was so close to him. Mattie went back several times to the Zoo on various different trips, and since he loved animals, this was a great adventure for him.


Quote of the day: The functions of intellect are insufficient without courage, love, friendship, compassion, and empathy. ~ Dean Koontz

It was a damp and rainy day in DC, and it did not motivate me at all to leave our home. So we decided to take the time and transfer our plants and trees that we take inside for the winter, outside today. What a chore that was and also a mess. We have quite a job ahead of us to get ready for the spring. Over the winter we fed the birds using many feeders on both our balcony and deck. Though that was a special treat to see our feathered friends throughout the winter, they have left me a ton to clean up and dig out of. I need a warm and non-rainy weekend to contend with all of this.

I was able to upload all the photos our photographer took from the Symposium. I will begin sharing them with you tonight and this will continue over the next several days. I know many of our supporters couldn't attend this event, so it is my hope that you get a feeling for it through the pictures.

On the morning of the event it was overcast and pouring. In fact, we were thankful we brought all the Symposium folders and most of the paper products to the Capitol the day before the event. Otherwise, everything would have gotten soaked! This picture captured the grey morning of the Symposium which was also the first day of spring.

However, after the Symposium was over and we walked outside, this was the glorious sight we saw. Sunshine and beautiful tulips and cherry trees surrounding the Capitol. Seems symbolic of the historic event that had just taken place.

A week before the Symposium occurred, I went to the Capitol Hill Visitor Center to visit with our on-site event coordinator. While meeting with her, I asked her whether I could create directional signs and post them throughout the center for our attendees to follow. The Capitol Hill Visitor Center is enormous and it is easy to get confused inside the building. So as you can see, Sheryl, our photographer, started our event by snapping pictures of some of our directional signs!

In front of our registration area, I displayed this sign. The Capitol Hill Visitor Center has many rules and regulations that need to be followed in order to host an event there. The first rule is there can be NO logos of any kind on display. So our Mattie Miracle sun logo was scrubbed from everything.



Behind the registration desk was two rows of orange gift bags on display. These were gifts we provided to all our professional and parent speakers.







To run this event successfully we needed five capable volunteers (Heidi isn't pictured here). In this picture with Peter and I are Tina, Dave, Erin, and Isabel. Erin and Isabel are girl scouts. From the same girl scout troop who raised money to build 100 Build-a-Bears and then went with me to Georgetown University Hospital in February to deliver them to children who were in-patient.

Registration ran very smoothly. You can see my friend, Heidi (in pink), overseeing the girls and the process. At registration, attendees picked up a folder (containing a detailed program, a pad of paper, a pen, and an event evaluation form) and a name tag. Also at registration, staffers could sign in and participants who needed continuing education credits received a certificate at the end of the day.

My friend Tina was overseeing the registration table all day! In this picture, she was interacting with a congressional staffer who was signing in and spending part of the morning with us. It is thanks to Tina, Isabel, and Erin, that lunch actually took place on time. Despite the fact that on the catering contract and with our catering manager lunch was agreed upon to be served at noon, there was a screw up and lunch wasn't actually going to be set up until 1pm. Fortunately the volunteers caught this error and Tina got the catering staff hopping and ready at noon. Naturally I did not know any of this was going on outside the room. THANKFULLY!

This is what the actual room looked like empty.

I was very cognizant of the room capacity, which was 80. The Visitor Center is very serious about room caps for fire code reasons. So at some point I had to close registration and though I had wanted a different room set up, classroom style did work and accommodated all of our attendees. Our volunteer, Dave, was in the room with us at all times, and he helped attendees find seating throughout the event and he also held up time cards for each speaker in order to keep them on schedule. Dave was a lifesaver, because despite a VERY full agenda, we kept to time and things flowed throughout the day.

Tonight, Peter and I went to Mattie's preschool annual auction. This is the third straight year we have gone since Mattie died. Peter and I both feel strongly about supporting this school for various reasons. The first of which is Mattie had two of his happiest years at this school, second, Mattie met his first closest friend there and learned how to be a good friend, and third, during Mattie's cancer battle the school united to help us in extraordinary ways. In fact, I still keep in close contact with almost every mom in Mattie's first preschool class, and several of them are instrumental in our annual Foundation Walk. So in Mattie's memory, I am compelled to go back and financially support such a special place. I reconnected with Mattie's teachers tonight, Mattie's preschool director, and several families we know whose children still attend the preschool. However, I also have developed a reputation at these auctions, because I typically have a strategy for winning. Tonight, I went to the auction, after studying the catalog ahead of time, with the goal of winning ten items that I was going to use to help fill some of our great Mattie Miracle raffle baskets in May. These auction items however were dispersed all around a very big room, so I had my work cut out for me during the silent auction. I had literally 10 different things to scan for and monitor, but there is a method to my madness, and I am happy to say I was very successful, or more importantly the Mattie Miracle Walk raffle ultimately benefitted from these efforts.  

Friday, March 23, 2012

Friday, March 23, 2012

Tonight's picture was taken in March of 2003. Mattie was 11 months old and took his first plane trip to Los Angeles to visit my parents. That day we took Mattie to Huntington Gardens and I snapped a picture of Peter and Mattie, without them knowing it. Both of them were staring at different things, and I love how Mattie was intrigued by the bamboo and therefore reached out to touch it! Mattie was our little scientist and engineer, and was always fascinated by objects, how they worked, went together, and functioned. To me, Mattie was reaching out to analyze this bamboo and to make his own determinations.

Quote of the day: I've learned from experience that the greater part of our happiness or misery depends on our dispositions and not on our circumstances. ~ Martha Washington


My dad sent me tonight's quote, and I must admit I am not quite sure I totally agree with our Country's first lady. I certainly think that our attitudes and outlooks impact and directly affect our happiness, but I have also learned that some circumstances (which are out of our control) are hard to face, process, and accept. It would be very easy to hate the world, those around me, and want to check out on life. Yet I have not and don't. Maybe that is because of what Mrs. Washington refers to as one's disposition.

I have always been disposed to trying to please and make other people happy, in fact in grade school, those who knew me probably are not surprised that I became a mental health professional. While growing up, kids sought me out to talk about all kinds of things. Whether I knew it or not, I have been listening to people's problems, concerns, fears, and feelings all my life. So now that I have what I perceive as a life long crisis of my own, I find I revert back to my old ways of coping. Or my disposition. I may not be able to help myself, but I certainly can help others, and in so doing, it is therapeutic. Or at least it makes me feel needed and necessary. After losing Mattie, I find that I constantly struggle with my own identity and my need to nurture someone. After all I did this for seven years quite intensely. It is hard to go from that to nothing.

For the next week or so, I will be spending most evenings with Ann's mom, Mary. Tonight I went to Mary's care facility and I found her with her eyes wide open and waiting for a visitor. She was happy to see me and I brought her lotions and other goodies to perk up her room. Though Mary for the most part is almost completely mute, I have no trouble talking (one way) about various things with her. In our down times, I also read to her from the book I keep in her nightstand. It is my hope that this week, we can actually finish this short story. Mary is intrigued by the story because the main character shares her name. While I was reading to Mary, her roommate, was also paying attention. So in a way this is great stimulation for both of them. When their health aide walked in to check on them, the aide wanted to know if I was related to Mary because she was fascinated by my willingness to read and chat with both patients who suffer from various forms of dementia. I explained to the aide that I was only a friend, and that made her even more perplexed by my actions.

I believe that visiting Mary this week, ties in to what I was trying to express above. Mary is helpless and needs a caregiver, and I am a person who at times is directionless and needs someone to care for. So we are a perfect pair for each other. A pair of moms who both lost a son to cancer, and like my friend Toni (Brandon's mom) says all the time, cancer has a way of uniting and establishing friendships. This is most definitely true in the case of Mary.

Thursday, March 22, 2012

Thursday, March 22, 2012

Tonight's picture was taken in April of 2003. Mattie was a year old and desperate to walk independently. I snapped this picture because he was trying to balance himself while standing upright. Typically this was not something he would try on his own without help. Though Mattie was curious and intrigued by things around him, he was also cautious. I did baby proof some things in our home, but in all reality, I really did not need to, because Mattie seemed to understand that some things were just unsafe and off limits to him.




Quote of the day: One of the most tragic things I know about human nature is that all of us tend to put off living. We are all dreaming of some magical rose garden over the horizon-instead of enjoying the roses blooming outside our windows today. ~ Dale Carnegie  


Peter and I began our day back on Capitol Hill visiting with Senator Kay Bailey Hutchison (R-TX). The Senator is the original co-sponsor of S. 1613, a bill in which Mattie Miracle added psychosocial language to in September of 2011. Senator Hutchinson is the fifth congressional member we acknowledged with an outstanding legislation award this week.


For the remainder of the day, I was home and actually off the computer. I needed a break from working, staring at a computer screen, and just needed down time. Though it was a glorious weather day, that did not motivate me enough to go outside. Mattie Miracle has two events next week as well (an Easter Egg hunt at the Hospital coordinated with Mattie Miracle and the Girl Scouts as well as a fundraiser), and we are beginning to ramp up for our annual Walk. So more is to come and it seems like in total it has been an extremely productive year for us so far! 

Wednesday, March 21, 2012

Wednesday, March 21, 2012


Tonight's picture was taken in June of 2003. I LOVE this picture! We took Mattie to Great Falls that weekend and he was being transported by his favorite method. On Peter's back! You can see Mattie's happiness with being outside, in the fresh air, and being high up from the ground, and yet be able to look directly at me at eye level! What a fantastic smile!!!


Quote of the day: True success is overcoming the fear of being unsuccessful. ~ Paul Sweeney


Many people have asked me how I was able to accomplish the Symposium. After all, the Foundation does not have a staff. For the most part the direction and day to day labor is performed by me and Peter. That is not to say we don't have unbelievable volunteers, we do, and we know we are blessed. But the Symposium in many ways became my baby that I have been intensely cultivating and nurturing for months. It is hard to plan a conference in general, but the Symposium was designed to cater to multiple groups, not just mental health professionals, and with that the challenge magnified because I knew I needed to provide different things to stimulate and engage everyone. When I was a graduate assistant at the George Washington University, one of my many responsibilities was planning and hosting events for our department. Some were small, but some were actually huge. So I credit my graduate school work (work that paid for my doctoral degree!) and then my professional association work as beautiful groundwork for me to develop the Symposium. Mainly because designing and running a conference was NOT new to me. With that said, the content of this Symposium was FAR MORE personal and emotional for me than any other conference I had to plan, so naturally that came with its own feelings and challenges.

The Symposium had 85 attendees and Georgetown University Hospital was WELL represented from administrators, nurses, social workers, art therapy and Child Life. It is interesting I think how our hospital family continues to support us even when our main focus of attention, Mattie, is no longer with us. Frankly I think the conclusion which was drawn by the end of the 8 hour Symposium by attendees was that EMPATHY is a factor many families battling childhood cancer need expressed to them from ALL hospital staff. But this empathy is not only needed in treatment, it is needed through survivorship or grief. I am very fond of Carl Rogers' term, empathy, from a clinical standpoint, and what I appreciate about our Georgetown family is that they provide this to Peter and I without even knowing it. Sitting next to me throughout the day of the Symposium was Tricia (our Johnson and Johnson outstanding nurse finalist!), and in true Tricia style, she made sure I ate and checked in with me. Not unlike what she did with me in the Hospital.

I would like to share a few photos with you tonight. This picture was taken after Peter and I gave Rep. Mike McCaul (R-TX) an outstanding legislation award for his support and introduction of our legislation: HR 262 (http://www.govtrack.us/congress/ bill.xpd?bill=hr112-262)
and HR 3015 (http://www.govtrack.us/congress/ bill.xpd?bill=h112-3015). The woman featured in this picture is the Representative's wife.

Peter and I also gave Rep. Chris Van Hollen (D-MD) and outstanding legislation award. Rep. Van Hollen's office developed a relationship with us in 2010, and it has been cultivated ever since. We are grateful for Rep. Van Hollen introducing HR 262 and being a co-sponsor of HR 3015.

Peter and I also gave an outstanding legislation award to Senator Jack Reed (D-RI). Senator Reed introduced S. 1613

(http://www.govtrack.us/congress/bill.xpd?bill=s112-1613), legislation in which Mattie Miracle added psychosocial language.  

Our last outstanding legislation award during the Symposium was given to Rep. Jackie Speier (D-CA). I have had the opportunity to hear Rep. Speier speak before about childhood cancer, and the only thing I can say about her is she is captivating. She is an excellent public speaker who seems to have a true understanding for the issues children face when battling this horrific disease. Rep. Speier co-introduced HR 3015 in the House, which included Mattie Miracle's psychosocial language.

I would like to end tonight's posting with six messages I received today. The first message is from our friend, who is also an administrator at Georgetown University Hospital. Tim wrote, "My Dear Friends, There really are not words to express how extraordinary today was for me and, I am sure, for all those who attended. As I said to both of you...who would have made this remarkable initiative happen...if not you? Who could have gotten the collective intellect, concern, focus and dedicated voices in the same room - working toward the same goals...if not you? Who would have had the ambition to take on all of the work to make this symposium happen - to take on this challenge...if not you? I am in awe of your passion, your vision, your commitment, your courage and, as always, your love for Mattie. As I sat there today...sometimes with tears in my eyes...thinking of all that you did to make today happen, I am reminded what Margaret Mead once wrote, "Never doubt that a small group of thoughtful committed citizens can change the world. Indeed, it is the only thing that ever has." Through your work and dedication to pediatric patients and their families who are on this terrifying journey, you will "change the world" that they experience - and you will change if for the better. Not just by providing high quality and useful psychosocial programs and initiatives...but by helping to establish a universal psychosocial standard of care for all patients and families. It is a lofty goal...but anyone who thinks it is not attainable, clearly hasn't met you. My thoughts and best wishes are with you both this evening. I hope you get some rest and sleep well (in spite of all that you are dealing with) knowing that you have and will continue to make a difference in the lives of so many. It is a privilege to know you and to call you my friends."

The second message is from one of our presenters. Lori is a psycho-oncologist who we have gotten to know, respect, and love as a person. Lori wrote, "I sure hope that you and Peter were able to get a great night sleep last night and feel really, really proud of what you have accomplished. The respect that was clearly shown from your peers to members of congress for all your hard work speaks volumes. There wasn't a detail that you did not think of. I felt honored to be a part of the day."

The third message is from my friend and colleague in Iowa. Susan wrote, "Wow, Vicki! I really don't know what to say, other than that I am SO proud to know such a strong and courageous woman, a person who will, no matter her own hurts and pains, will make SURE that the world will perhaps finally begin to start acknowledging and understanding the psychological aspects that accompany the horrible disease of cancer. I Just read your symposium greeting and it actually brought me to tears. Please know that you can count me in as part of your "physically distant" support group. Congrats to you and Peter for a job well done."

The fourth message is from my friend and Brandon's mom. Toni served on the parent panel during the Symposium. Toni wrote, "Today I went to Capitol Hill with the Mattie Miracle Cancer Foundation I sat on the parents panel. I am truly honored and humbled to call Vicki and Peter Brown a friend. This is a true labor of love for them and it shows. It's funny how something so devastating such as Childhood Cancer can bond you with someone. I'm truly honored to call them friends. Please check out this wonderful foundation or read the blog at mattiebear.blogspot.com."

The fifth message is from my friend and fellow parent advisory board member at the Hospital. Terri served on the parent panel during the Symposium. Terri wrote, "Today was a special day, not only the first day of spring, but that I was invited as one of the six parent panelists in the Mattie Miracle Cancer Foundation Symposium encompassing leading psycho-oncology researchers and clinicians and members of Congress regarding the state of psychosocial care for childhood cancer patients and their families.  It was simply a powerful day, and I am truly honored that the founding members of the Mattie Miracle Foundation, Vicki and Peter Brown, extended the invitation for me to be a part of the first Childhood Cancer Psychosocial Symposium and Congressional Briefing on Capitol Hill."

The sixth message is from my friend, who also happens to be Karen's mom. This is a woman who has seen me grow up over the years, since she has known me since I was 12. Naomi wrote, "I told Karen I thought you did an amazing job-- putting together all those people from 12 different states in a program that was meaningful to all kinds of disciplines from legislators, doctors, researchers, clinicians and nurses to patients and their families. I said that it would take all 40 people in my office to do such a job -- and it took just you and Peter and a couple of extra hands. And it's very important stuff you are presenting. I am not easily impressed. But this undertaking is and was very impressive. So, Karen said, "E-mail Vicki and tell her yourself." So here I am. I've called you Wonder woman before, but now it's really apparent-- you actually are! And now, my dear girl, now you should take care of yourself. Now, it's your turn. Please."

Tuesday, March 20, 2012

Tuesday, March 20, 2012 -- Mattie died 132 weeks ago today.

Tonight's picture was taken in June of 2003. Mattie was 14 months old and though he wasn't walking independently at that age, he had his own unique way of moving around. I recall this blue whale outfit very well, and the beauty of Mattie was he could wear any color and it looked great on him.

Quote of the day: Never give up on something that you can't go a day without thinking about. ~ Author Unknown

I think it may have been symbolic that our Foundation's Symposium was on a Tuesday. A day which marks Mattie's 132nd week from our lives. The Symposium today was quite a success and one that has left us beyond exhausted. We had 83 attendees today, and on the evaluation forms and also in person we received the feedback that people wanted to know if this was going to be a yearly event! All I can say is wow! Here is what the day's agenda looked like:

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Breakfast                                                                                                               

Congressional Summit Briefing Panel   (8:45am-10:00am)  

    Victoria Sardi-Brown & Peter Brown, Mattie Miracle Co-Founders 

    Jon Agin (Alexis, Diffuse Intrinsic Pontine Glioma Angel) 

    Anne Kazak, Ph.D., ABPP; Children's Hospital of Philadelphia                          

    Andrea Farkas Patenaude, Ph.D.; Dana-Farber Cancer Institute

    Kenneth Tercyak, Ph.D.; Lombardi Comprehensive Cancer Center

    Lori Wiener, Ph.D.; National Institutes of Health

    Robert Noll, Ph.D.; Children's Hospital of Pittsburgh

    Question & Answer

 
Welcome Remarks from Rep. Mike McCaul & Rep. Chris Van Hollen     (10:00am-10:15am)

Break    (10:15am -10:30am)                                                                                                                 

Research Symposium – Session 1   (10:30am-12:00am)                                                                 
"Hot Topics in Psychosocial Care in Childhood Cancer"

    Anne Kazak, Ph.D., ABPP; Children's Hospital of Philadelphia                                          

    Lori Wiener, Ph.D.; National Institutes of Health                           

            Discussant: Jimmie Holland, MD; Founder of Psycho-oncology

 

Lunch   (12:00 –1:00pm)

Remarks from Rep. Jackie Speier (D-CA) and Senator Jack Reed (D-RI) 

Moderated Panel of Parents   (1:00 – 2:30pm)

Moderators: Deborah Dokken, MPA & Kristen DeBoy Caminiti, MSW, LCSW-C, LICSW                                                  

Break   (2:30 – 2:45pm)                                                                                                                                                         
Research Symposium – Session 2   (2:45 – 4:00pm)
  "Hot Topics in Psychosocial Care in Childhood Cancer"

    Kenneth Tercyak, Ph.D.; Lombardi Comprehensive Cancer Center

    Andrea Farkas Patenaude, Ph.D.; Dana-Farber Cancer Institute

    Robert Noll, Ph.D.; Children's Hospital of Pittsburgh

Closing Remarks      4:00pm

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Today's symposium was a great undertaking because it meant designing a program for various audiences: congressional staffers, parents, psychosocial professionals, nurses, and childhood cancer advocates. This is a vastly different audience to appeal to, but one that I decided to take on. Originally when we thought about a briefing, it made no sense to me for the Foundation to financially sponsor the traveling and lodging expenses of our psycho-oncologists just for an hour long briefing on Capitol Hill. So over time, the symposium was created that incorporated an hour long briefing, followed by two research sessions and a moderated parent panel. My goal was to design something for everyone. This could have turned out to be a disaster, but for a first time event, it actually was very successful. There are always learning lessons, but considering all the speakers we were balancing today, it went off without a hitch.
Peter and I couldn't do this alone. We had several volunteers helping us today: Tina, Heidi, Dave, and two wonderful girl scouts (Isabel and Erin!). We needed every hand and eye to help the day run smoothly, because even the best laid plans don't always work out.

The audience had the wonderful opportunity to hear from four congressional members today as they received Mattie Miracle Outstanding Legislation Awards: Rep. McCaul, Rep. Van Hollen, Senator Reed, and Rep. Speier.

I will continue to share more about the Symposium, but I will end tonight with my greeting I delivered this morning, followed by a picture.

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Good Morning and welcome to the Mattie Miracle Childhood Cancer Psychosocial Symposium. My name is Victoria Sardi-Brown and I am the co-founder and president of the Mattie Miracle Cancer Foundation. Childhood cancer is a very familiar topic on Capitol Hill since many vital groups come here on a regular basis to advocate for the funding of medical research. However, today's  Symposium and goals are a bit different because it is the first event of its kind on the Hill to discuss the psychological, emotional, and social impacts of Childhood Cancer on the child and the entire family system. Impacts which you will be able to hear more about today from both leading psycho-oncology researchers and clinicians, as well as from families touched by the disease.

Based on our incredible registration numbers, with attendees representing 12 states throughout the country, I can only conclude that this is a topic that strongly resonates with all of you for personal or professional reasons.  For your attendance, support, and for the work many of you do each day to help children with cancer and their families, we thank you!

We want to thank congressional staffers for attending throughout the day and a special thank you to Andy Taylor in Rep. Mike McCaul's office and Erika Appel in Rep. Van Hollen's office for their continued support of our mission.

Some of you here may be asking yourself..... how did the Mattie Miracle Cancer Foundation get its name? In other words who is Mattie?

(Powerpoint display of Mattie) This was Mattie Brown! Mattie was my only child, who was born in 2002, as a healthy and happy child. Mattie was a force, he had incredible spirit, intelligence, and creativity. Mattie had a special way about him, he was intriguing and he could instantly capture your attention and heart, and engage you just by talking and involving you in his play schemes.  By age 2, I realized I had a live wire on my hands, when he would help himself to our screwdrivers  in order to disassemble AND THEN re-assemble his toys.

In the summer of 2008, Mattie was 6 years old and enrolled in a tennis camp. Throughout that week of camp he complained of arm pain. A pain he NEVER had before. After two weeks of pain that did not seem to get any better, but actually worse, I took him to see his pediatrician. Fortunately his pediatrician took our concerns seriously and ordered an x-ray of his arm. It was that day, July 23, 2008, that our lives changed forever, because Mattie was diagnosed with Osteosarcoma, a form of bone cancer. Mattie battled cancer for 14 intense months, in which he had 9 months of the most toxic forms of chemotherapy, two limb salvaging surgeries which basically left him confined to a wheelchair for his remaining days, 7 months of experimental immunotherapy, a sternotomy to remove nine lung tumors, and finally radiation.  However, despite his courage and strength, only six weeks off of chemotherapy, Mattie's cancer took over his body and he died on September 8th of 2009.

Mattie is the reason that myself and my husband, Peter, commit ourselves to the work of the Foundation. Mattie was only 7, but he was my life's greatest teacher. I observed not only the physical impact of cancer on his body, but more importantly I witnessed the deep and heart wrenching psychological changes on such a young mind. Mattie's cancer also impacted my husband and I enormously. I had to quit my job, Peter struggled to balance working full time and living in the hospital, we had to adjust to living in a small hospital room for weeks on end in which there was NO privacy, sounds and lights on 24 hours a day, we had to share showers with other families, sleep in chairs, survive from one scan to the next as we awaited test results to see if treatment was working, and overall we had to worry about whether we were making the best medical care decisions for Mattie. Mattie was unable to go to school and therefore became socially isolated, depressed, anxious, and developed medical post traumatic stress disorder from his intense treatments.  

As a society we are familiar with the standard childhood cancer facts such as .......

1.      Childhood cancer is the #1 killer of children by disease, more than asthma, diabetes, cystic fibrosis, congenital anomalies, and pediatric AIDS combined

2.      One out of every 330 children under the age of 20 will develop cancer

3.      Each year, over 16,000 children are diagnosed with cancer in the U.S.

4.      Each school day, 46 children are diagnosed with cancer

5.      Approximately 1,400 children with cancer die each year (that’s almost 4 children a day)

It is interesting that when we hear these facts they are not followed by a discussion of the profound emotional reaction a parent has to hearing that his or her child has cancer, or even worse that the cancer has spread and the child is going to die. No instead, these facts tend to be used to advocate for the need for more medical research and the development of better and more effective drugs in order to achieve a cure. However, do keep in mind that most drugs for childhood cancer treatments are over 20 years old and only one new drug (Clofarabine) has been FDA approved in the last decade! Money must be raised for new and effective treatments, but these treatments are truly a long time coming based on the field's history. In the mean time, little to no funding and attention is given to the day to day suffering of children with cancer and their families, suffering which in many cases produce very real mental health issues that can impact cancer treatment and outcomes. Whether a cure for childhood cancer is found today or not, there will ALWAYS be psychological ramifications to being diagnosed with cancer, and undervaluing the need for quality and standardized psychosocial care leaves children and families feeling isolated, disadvantaged, and hopeless.

Childhood cancer is as much a psychological disease as it is a physical one, and it impacts the entire family. In many ways, hearing your child has cancer is the ultimate blow a parent can receive and on many levels watching your child undergo cancer treatment almost feels as if it is happening to you.  It is beyond painful to hear your child say he feels he is ugly, that no one wants to be his friend, that no one wants to play with him, or that he thinks he is dying. These are only 1/16th of the psychosocial issues that can arise from childhood cancer, and the answers to these problems are not resolved through chemotherapy, radiation, or surgery.  They can only be tackled with effective psychosocial support and treatment.

Thank you for being with us today, your presence illustrates the importance of supporting psychosocial care for childhood cancer, and together we can take a stand, though I admit it is sometimes a hard and unpopular stance, for advocating for the development of a psychological standard of care to ensure that children and families get the help, support, and hope they need to battle childhood cancer from diagnosis through survivorship or end of life care.

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My camera did not like this room space. But we did hire a photographer and will be sharing her pictures shortly. This is a photo (thanks to Terri!) of the parent panel members with Peter, myself, and Ann (Mattie Miracle Board member). The panel delivered an absolutely wonderful presentation and our moderators did a fantastic job! There is nothing as powerful as hearing about the psychological impact of childhood cancer directly from a parent.

Monday, March 19, 2012

Monday, March 19, 2012

Tonight's picture was taken in June of 2003. Mattie was a year old and visiting Great Falls with us. Mattie loved riding on Peter's back and it was one of his favorite forms of transportation!






Quote of the day: We make a living by what we get, but we make a life by what we give. ~ Winston Churchill


Today was my last final push for tomorrow's Symposium. Frankly, I am not sure I could have handled another week of preparation. I am working over 12 hour days and as such not eating or sleeping well. This afternoon, Peter and I visited the Capitol Hill Visitor Center to drop off eight bags of materials, so that we do not have to carry all these heavy things tomorrow. As it is, tomorrow we have another six bags to carry. But that is more reasonable than bringing everything in total at one time. Keep in mind that entering the building involves scanning every bag and going through metal detectors! Typically the Capitol Hill Visitor Center will not hold materials overnight. But I suppose I can make a compelling case and those working with me realize it is just easier to say yes, than to have me continue to harp about certain issues.

After our drop off, Peter and I literally walked over two miles home. I needed the walk and to have some time away from a computer or blackberry. This evening, we are meeting up with our researchers who have come in from out of town to present at the Symposium tomorrow. So I am signing off for today and ask you to think good thoughts for us tomorrow from 8am to 4pm. In essence what we are trying to do is not only novel and unique, but challenging. Because we are asking for people to think of cancer not only as a medical disease but a psychological one.

I end tonight's posting with a message from my mom. My mom wrote, "You've done a terrific job and have an impressive March newsletter to show for it. We wish you good luck with your symposium and think it is a true "Mattie Miracle" to have gotten such an illustrious assemblage of professionals, political people and families of pediatric cancer patients together to achieve illumination on the subject of psychosocial issues that has often been treated as if we lived in the dark ages! Brava!!"

Sunday, March 18, 2012

Sunday, March 18, 2012

Tonight's picture was taken in March of 2003. Mattie was 11 months old and this was his first plane trip to Los Angeles. On a five hour plane trip, we were lucky if he napped for 20 minutes in total. Mattie was always ON in an airplane, and could play and play, and then play some more. Peter picked tonight's picture, and as he told me he just LOVES it because it shows Mattie's engaging and active character. I asked Peter who took this picture of Mattie, because I couldn't really remember. With that Peter said.... "are you kidding, of course it was you!" Mattie was staring right at me and I figure wanted my attention and was going to reach out for me to make his presence known.


Quote of the day: I postpone death by living, by suffering, by error, by risking, by giving, and by losing. ~ Anaias Nin


Peter found tonight's quote actually and it struck a cord with him. For me, given my current brain dead state, it seemed too profound for me to really absorb it at first. However, after I broke it down, what jumped out at me is that the quote isn't really talking about death but life. For to live, means you will be faced with suffering, errors, risk, giving, and also all sorts of losses. We may try to insulate ourselves from some of these things, but none of us is immune.

Peter walked Roosevelt Island twice today. In the morning when he went alone, he was treated to all sorts of sights. He saw Pilated Woodpeckers and even a Red Bellied Woodpecker (which was a first for him on the Island!). This picture of a Pilated Woodpecker is quite stunning, because these are not easy birds to capture on camera. Nonetheless, this afternoon, when we walked the Island together, I could see Pilated Woodpeckers flying in the distance. Actually I always hear them before I see them, because when their beak hits a tree trunk it makes a "THUNK!"sound. Yet I was also treated to the bird calling of a Red Bellied Woodpecker.

To me the "kwirr" call of the Red Bellied Woodpecker is special, and I found a You Tube link of such a call, so you could hear it for yourself.

http://www.youtube.com/watch?v=OnEw1lGr_KE

 

Before leaving the Island, I snapped a picture of spring! Somehow the photo doesn't do this sight justice. I am beyond exhausted from an intense week and weekend of trying to put the finishing touches on the Symposium. Yet walking, getting fresh air and seeing nature was indeed necessary.