Mattie Miracle 10th Anniversary Walk was an $119,000 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

December 4, 2010

Saturday, December 4, 2010

Saturday, December 4, 2010

Tonight's picture was taken in December of 2004, Mattie was two and a half years old. In front of him were three of his favorite vehicles, his fire engine, a front loader, and a school bus. These three wheeled objects got around, even in the sandbox and the bath tub. Mattie learned the hard way that vehicles with batteries do not LIKE sand or water! I still recall the sound of the school bus after it had been drenched in water. Nonetheless, the warped sound of the bus made Mattie and I laugh. This picture reminds me of the way our living room and dining room space was transformed by his toys. Toys were everywhere, despite my level of organization. At that time it took some adjustment to the chaos of having a toddler around full time, but looking back we wouldn't have traded these minutes, hours, and days with Mattie.


Quote of the day: No light that was born in love can ever be extinguished. ~ Darcie D. Sims


Yesterday, I was in our laundry room of our complex and bumped into my upstairs neighbor. The lady who lives directly above us. She happened to mention to me that she thought it was cute that when she looks out her window she can see other children playing in Mattie's sandbox. I guess I wasn't expecting that comment, which would most likely explain why I snapped at her when she shared this with me. I basically said that the sandbox was Mattie's, it doesn't belong to the complex, or the other children. I also told her that when I first saw children in the sandbox it greatly upset me. It upset me because I did not want Mattie's things touched, and certainly not touched without asking me. I remember several months ago, when I was upset about the whole sandbox, Peter went out to talk to the parents congregated outside our gate, socializing, while their children were playing. He explained that the sandbox belonged to our son, who was no longer alive. Peter did this in front of the adults only. To my dismay, Peter told me that the adults did not say they were sorry, they showed no empathy for our loss, and kept right along doing what they were doing. Fortunately I wasn't outside, because I would have probably lost it. I can be very professional looking, but if you set me off, I can also be very aggressive and volatile. There were times, after that parent encounter, where I wanted to go outside and drag the sandbox right back onto our deck (however, we don't have much space on the deck thanks to Speedy Red - Mattie's ride on car that takes up 1/3 of the space). But I haven't done that. I haven't done that for one reason. The reason is the children. Living in our complex, in the city, there is NO place for the children to meet and play. If they are happy to play in the sandbox, then I have a feeling on some level Mattie would approve. So I do it for the children, and MOST definitely not for the insensitive parents. I thought I let those feelings go, until my neighbor innocently brought up the topic yesterday.

It is frigid today in Washington, DC, and the weather greatly affects my motivation to do things. Peter literally got me up this morning and suggested we go to our exercise room in the complex and walk on the treadmill. After 2.57 miles later, I felt a bit more energetic, came back and made us a late breakfast, and then we sat besides each other for the rest of the day working on Foundation things. We also have our first Foundation strategy session with Brett Thompson (the co-founder of the Pork Barrel BBQ restaurant) on Monday, so we are trying to get our thoughts together for that. Nonetheless, we are so grateful to Brett for sharing his knowledge and expertise with us!

Fortunately Peter and I had dinner plans with our friends Christine and James tonight. Because it got us out and among other people. I made dinner reservations over two weeks ago, however, when we arrived tonight, they couldn't find my name on the list. Luckily, Peter and I had dined at this restaurant about three weeks ago and they could see I do have a pattern of making reservations. Thankfully they found a table for us and we had a delightful dinner. We chatted in pairs and as a foursome as well, and exchanged stories, ideas, and feelings. In fact, James was telling me a story about someone he knows, and as I was sitting listening to his story, I provided my own two cents on what I was hearing. The funny part is James thanked me for my insights and clarification on this person's behavior, and he said that was why I was the mental health professional in the group. I was flattered, but I also think having a fresh lens on the person he was describing helped a great deal!

It was a memorable dinner, with food that was tasty and presented in a lovely manner. It made for a special evening for all of us, and I always appreciate how Christine lets me know how Mattie's life and death has given her perspective on how she lives her life. Each time we meet she shares something with me, and I think it is through this sharing, that our friendship continues to grow and in a way heal. We are healing as friends, since we are no longer united through our boys.


I would like to end tonight's posting with two pictures! Peter snapped some pictures of the Christmas lights he put up this year in Mattie's honor. They certainly are NOT like the winter wonderland or mechanical light shows he used to create with Mattie in years past, but I do think these lights are symbolic of our days with Mattie. He was our light, our energy, and our joy.






When Peter showed me this picture, my first comment, was this is.... Christmas in Washington. The picture was taken from inside our living room, looking out onto the Potomac River. Peter strung lights on our balcony and somehow between our lights and the lights of DC buildings in the background, it seemed like he captured a very serene scene.

December 3, 2010

Friday, December 3, 2010

Friday, December 3, 2010

Tonight's picture was taken in May of 2002, when Mattie was one month old. He was sitting on my lap and we were both getting fresh air on our deck. As you can see from this picture, Mattie was a cutie, with his chubby cheeks and his eyes wide open. Mattie was born alert and curious, and never liked napping. It was if he was going to miss out on something if he closed his eyes. Of course looking back at his baby years, I can't help but feel that he knew on some level that he had to take everything in, absorb life, because a long life isn't always a given. 

Quote of the day (or perhaps I should say Peter's fortune for the day): Life is a tragedy for those who feel and life is a comedy for those who think.

Tonight's quote is not necessarily a quote, though it reads like one! It is instead a fortune, that came right out of fortune cookie tonight at dinner. My fortune was silly, but Peter's fortune caught my attention. When I read it at first, I had to think about it. But it did not take me long to agree with its sentiments. I consider myself a deeply feeling person, and when you are a person who observes, absorbs, and processes your own feelings and that of others around you, it is very easy to view life as a tragedy. There is a great deal of pain, evil, and confusion in our lives and in our world. At times I admire those who don't feel as much, or don't care to feel. Life in a way is much easier if you live in a numb or indifferent state. However, what I do believe is that experiencing deep feelings also allows one to see the beauty of things and people on a level that would be impossible to reach if closed off to emotions. So feelings are in essence a double edged sword.

Today was Mary's (Ann's mom) birthday! I had the opportunity to join Mary and Ann for lunch to celebrate the day. We had lunch at Mattie's favorite restaurant and we actually sat in Mattie's favorite room. A room filled with boats and sailing related things! When we arrived at the restaurant, we were greeted by Mike. Mike is the daytime host at the restaurant, and a man very familiar with Mattie! Mike got to know Mattie very well when my parents and I would bring him to this restaurant on occasion after preschool. Mike watched Mattie grow over a two year period from a preschooler to an elementary school student. Mike also watched Mattie come into the restaurant ravaged by chemo and in a wheelchair. In fact, I distinctly remember the first time Mike saw Mattie after his surgeries, coming in by wheelchair, he cried and was speechless. That vision and reaction remains with me today. It was hard to see a vital, healthy, and energetic boy transformed into a boy who looked sullen, very ill, and immobile. When Mike saw me today, he came over to give me a hug. He never says anything when he hugs me, but he doesn't have to. I understand through the hug that he too can't believe the tragedy I am living and what happened to a beautiful little boy. Not unlike the previous times I came to this restaurant, Mike seated us today in the room with the boats. That was not by accident.

Mary looked particularly lovely today, as she was wearing her new birthday outfit, and was truly excited to be going out to lunch to celebrate her birthday. I told Mary that it is hard to believe that I met her two years ago on her birthday. Somehow it seems like we have known each other for a longer period of time. However, I have to think the intensity of time we have spent together over the past two years, and the common bond we share (the death of a son through cancer) has enabled us to connect on a very meaningful level.

After lunch, I went back with Mary to her assisted living facility, and we sat and chatted, and read her home town newspaper together. In the process of doing that, I helped Mary hang up all the birthday cards she received and plugged in the Christmas tree fragrance diffuser I bought her. Mary is like me, in the sense that she likes fragrances, and I couldn't think of a cleaner and more holiday oriented fragrance than that of a pine tree.

Later this evening, Peter and I went out to dinner. I told him about Mary's birthday and I heard all about his day. While at our local restaurant, which some of you know I have nicknamed as our "Cheers," we bumped into JJ's (our resident Jack Russell Terrier) dad, JP. Many of my faithful readers know how close Mattie was to JJ, and for months JJ pined for Mattie on our front doorstep after he died. Peter and I sat for a while, and when I first sit down my mind is going in 12 different directions, but over the course of dinner, it was nice to be able to converse and connect. After the loss of a child, it certainly would be easier NOT to connect, and not to share thoughts and feelings with each other. However, Peter and I have never taken the easy way out of things, and this is no exception.

I received a beautiful email from Mattie's social worker, Denise. Her message was so touching, I asked her whether I could share it with you. Denise is a grief counselor by training, and I find she and I connect quite well on the loss of Mattie. She aptly hones in on why I am feeling particularly more vulnerable during the holidays, and yet despite my feelings, I appreciate her acknowledging the fact that I try to think of others in the process. Needless to say, her message came to me at the right time.

Denise wrote, "For the past few months I have been thinking about Mattie quite a bit. It all started with Halloween, because Mattie loved holidays so much and I reflected on all of the decorations he made for his room. The Halloween party here in the hospital and a cake in the shape of a haunted house reminded me of Mattie's precious haunted house. As I watched the leaves on the trees turned from green to gold, orange, and red that brought further remembrances because Mattie's favorite color was red and his second favorite color was orange. I look up from my desk and I see a picture of a smiling boy in a pumpkin patch and it doesn't seem quite real that he is no longer with us. I know that this must be an extremely difficult time of the year for you as we approach all of these big, family oriented holidays. In part because of the sharing, togetherness and emphasis on family and in part because they were such a treasured part of your life and Mattie's. I can't even begin to imagine the pain and sorrow that you might feel of not having Mattie here to share them with you. Today, I found myself walking the halls of the hospital and I saw Mattie's poster about what a hospital should be... and my mind kept thinking, he was just a boy, he was just a boy. It just does not seem natural for a child to die so young. I read your blog and found your sentiments to reflect much of what I have been thinking. I continue to marvel at the strength that you show even when you don't know that you are doing it. It takes great courage and strength to be as open and honest as you are about what you are going through and what you are feeling. At the same time you are constantly giving to others. Even though Peter defers the writing to you Vicki, the blogs that he wrote while you were in California brought tears to my eyes. Despite your sorrow, you both are filled with compassion for others. I just wanted you to know that I have not forgotten you. Mattie and the two of you are in my thoughts all of the time. Your pain, your suffering and most of all, you still matter to me. Just wanted you to know that."

December 2, 2010

Thursday, December 2, 2010

Thursday, December 2, 2010

Tonight's picture was taken in July of 2002. Mattie was three months old. In fact, this picture was taken in my sister-in-law's living room, the day after Mattie's baptism. At that time, Peter's brother and family were living in DC, and Mattie had the wonderful opportunity to spend time on a regular basis with his cousins. A connection which he very much enjoyed. I recall the baptism, the excitement we had around that event, and the feeling that this was a beginning for our family.


Quote of the day: Because of you, I love a little more. Because of you, I take time to give an extra kiss good-bye. Because of you, I have a new favorite song. Because of you, there may be dust on the window sill, and I don't care. Because of you, I live today, before I worry about tomorrow. Because of you, I don't give up quite as fast. Because of you, I still believe in rainbows. Because of you, now I can help or listen more. Because of you, today, I am me. ~ Eileen Wernsman


As this quote so aptly expresses, because of Mattie and my experiences with him, "I am me!" I am NOT the same me some of you knew two years ago (precancer). Cancer and death have permanently changed me, and I am not sure if it is for the better or the worse. I do know that what interested me in the past, no longer does. I prioritize aspects of my life differently and in many ways my ability to absorb comments and put them in the appropriate context is skewed. Instead, I now can get easily hurt, misinterpret what is said to me, and feel mortally wounded all at the same time. Within the past couple of weeks, I received at least four comments about our Foundation's annual spring walk. The comments and who said them are not important, but what is important was how I reacted to them internally. As people move on with their lives, which is only natural, our Walk becomes less and less vital or a priority to them. It is certainly understandable and I knew it was bound to happen. But I suppose I wasn't really ready to accept an additionally painful reality right now. For Peter and I, the Foundation Walk is a vital and effective way of increasing pediatric cancer awareness, for building and strengthening our support base, and for ultimately remembering Mattie. Mattie's fight will always remain in our hearts and minds, and this memory ignites a passion to help other children and their families. Of course, I realize not everyone can share this passion with me, or sustain it long term. I accept that on some level, and at the same time simply feel hurt, because I would hope that others, would value the Walk, if for nothing else, because it means so much to me.

I had the wonderful opportunity to meet the "bead lady" at her studio in Virginia. Deborah, who I call the "bead lady," is an artist who also volunteers her time weekly at The Georgetown University Hospital. In fact, the bracelet Mattie made me, which I wear each day, was a creation he made with Deborah. Mattie and I made several jewelry pieces with Deborah over the course of his treatment. Deborah has thousands of beads, and seeing her transport these bins to the hospital each week was not only a sight, but a very welcome diversion. In fact, after my very first session with Deborah at the Hospital, I began to look forward to her visits. Her projects kept my hands busy and my mind engaged. Engaged in colors, searching through bins of beads, and it also got Mattie and I talking. We had fun sitting side by side doing these creations, and I remember these moments fondly.

I told Deborah today that her visits with us in the Hospital were therapeutic and in fact, it has become very obvious to me that as I try to cope with Mattie's death creativity is imperative to me. Deborah was kind enough to make the time to see me today and give me some basic tips on how to start creating jewelry. I would love to be able to use my creativity to design pieces for the Foundation and raise money for pediatric cancer at the same time. Deborah is a very special individual, who is well aware of the world of cancer, since she was her father's caregiver. Her father had a terminal case of lymphoma and she provided 24 hour, seven day a week care for him in her own home. After losing her dad to cancer, she began to use her skills to help others. Her beading program in the hospital helps countless adults and children each year, and I admire her convictions to help those struggling with cancer. She remembers Mattie quite well, and she is also a blog reader. She in fact asked me today the significance of the moon and its connection to Mattie.

As some of you know, when Mattie entered preschool, he was given a symbol. A symbol that would represent him in the classroom and a symbol which started with the same first letter of his name, M. Most preschool children can't read, but they can all identify symbols. So a symbol is a fabulous identifier, and also helps children get to know their letters, by linking letters to symbols. So during Mattie's first year in preschool, his symbol was the MOON! Many of Mattie's classmates nicknamed him, Mattie Moon. It was a title that stayed with him throughout preschool, and certainly it was a nickname we all adopted at home. Though Mattie is no longer with us, his moon shines brightly, and Peter and I look to this celestial body for comfort!

I learned a lot from Deborah today, and what I deduced quickly about making jewelry was that it is an art form. I asked Deborah where she gets her ideas for the creations she produces. Keep in mind that her jewelry is quite beautiful and her use of color is stunning. Deborah pulled out a color wheel (an abstract illustrative organization of color hues around a circle, that shows relationships between primary colors, secondary colors, complementary colors, etc.) which she painted on canvas. From her color wheel she showed me how she determines what color beads will complement and accentuate each other. It was fascinating and to see examples of the jewelry pieces she created from understanding the art of color. I enjoyed my time with Deborah and I appreciate her willingness to help me and her support for my new artistic endeavor.

As I was driving home today, on the radio I heard Alabama's song, Angels Among Us. This song is played quite often during the holiday season, and I can't help but think of Mattie when I hear it. He was definitely placed on this earth for a purpose, and I am determined to understand the true meaning of that purpose. I attached a link to the song below, in case you would like to hear it.
http://www.youtube.com/watch?v=Ey0HrEvh44c

I saw Ann briefly today and dropped off the candy trees to her house. My lifetime friend Karen, loved the tree picture I posted last night and she sees all sorts of potential with them, and this morning I received an email from my friend, Tamra, who described the trees as whimsical and chic! Music to my ears!

I took myself out to lunch today. Something I would never have done prior to cancer. To me lunch was always a social thing, and typically I do prefer eating and socializing, however, post-cancer, I find spending quiet time with myself and a book are simply fine. It is peaceful, I operate on my own time frame, and I can feel however I want to feel. As I continue to plug away at the book Saving Henry, I found myself crying at times at lunch. Certainly I could read this book at a quicker pace, but I find based on the content I just can't. I have to read this book in digestible pieces. Mainly because it is a story of a family whose son has a life threatening illness and the intense and heroic battle they undertake to save his life. I know Henry dies at the end, so I already relate to this plot. For me reading is NOT about breezing through facts and getting content. It is instead about absorbing and feeling what I am reading. This is reading on a deeper level from my perspective and such investment takes time. Any case, I sat today, went through two pots of hot tea, lunch, several crying fits, and also made some headway on this book.

December 1, 2010

Wednesday, December 1, 2010

Wednesday, December 1, 2010

Tonight's picture was taken in November of 2002. Mattie was seven months old. As you can see, I have Mattie on the floor, propped up with pillows. To keep him on the floor, a place he DISLIKED to be, I had to surround him with interesting things to do. With Mattie, I always traveled around with THINGS. He was a fellow that needed a bag of tricks. What I love about this picture though, was despite all the things I had around him, guess who he was focused upon? His eyes give it away...... he was watching me!


Quote of the day: Listen to the heart that is crying.... because you can't see the tears. ~ Mabelle Pillman

Tonight's quote is simple, yet very revealing. I know it most definitely captures how I am feeling today. If you listen to me, or most likely any parent who lost a child, you will hear the inner turmoil and the tears. Tears which may not be visible to the eye, but I assure you they are there.

I had the opportunity to meet my friend, Ellen today. Ellen, as my faithful readers know, is Charlotte's mom. Mattie and Charlotte were close friends, and one of my favorite stories and memories will always be Mattie proposing to Charlotte in my car, using a ring he won at the dentist's office. In many ways, their relationship was a bit more meaningful than what you would expect from a typical 6 or 7 year old. Mattie took his commitment to Charlotte seriously and in fact I recall one day in the Hospital when Mattie was quite ill and in bed, he asked me if it was possible or okay to love more than one person. What he was asking me was whether it was okay to be friends with Ann's daughter, Abigail, and still love Charlotte? Needless to say, it wasn't a question I was expecting, but we talked about love and how I felt like his heart was big enough to handle these two special friends in his life. He seemed to appreciate that response, because I believe a part of him was confused and he actually felt guilty. As if he wasn't being loyal and a good friend. What I find remarkable about all of this was despite how Mattie was feeling and what he was battling, thinking of others and their feelings were top priorities. Which is most likely why we related to each other quite well.

It was a rainy and cold day, and after meeting Ellen, I ran a couple of chores and then spent the rest of the day at home. Some of you may recall that last year I put together a holiday centerpiece for Ann's dining room table. Well a couple of the candy trees I made last December fell apart when they were stored. So I had the opportunity to fix two of them today and then I decided to create two additional trees. Another candy cane tree and a bi-colored starlight mint tree. I will bring all these trees to Ann tomorrow, whether she wants them or not!




I received an email today from Kristen, Mattie's oncologist and my friend. She asked me whether I would consider posting her message below on the blog tonight. After reading through her links and watching this VERY touching video about Adam, who received a bone marrow transplant a year and a half ago, I felt very compelled to share this story with you. If you want to hear a story about hope, about the goodness in people, and how a donation one can made over ten years old, can change a life, then click on Adam's story link below! Gary, Adam's bone marrow donor, truly inspires me!

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This Sunday, December 5th the family of a former patient of mine will hold a Bone Marrow Drive at the Jane Lawton Community Center: 4301 Willow Lane Chevy Chase, MD from 2-4pm.


Inspired by their own "perfect match" who registered to be a bone marrow donor nearly 10 years ago for another patient, Adam's family is hoping help others in need of marrow transplant by holding a marrow drive.

For Adam's story, please see Adam's Be The Match foundation webpage http://www.bethematchfoundation.org/goto/Adam or see the CBS morning news segment on Adam meeting his match http://www.cbsnews.com/stories/2010/10/10/sunday/main6944423.shtml
Thanks so much!!
Kristen Snyder, MD
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Adam's story about the incredible gift!
http://www.cbsnews.com/video/watch/?id=6944753n&tag=related;photovideo

Tuesday, November 30, 2010

Tuesday, November 30, 2010 -- Mattie died 64 weeks ago today.

Tonight's picture was taken in December of 2002. Mattie was 8 months old, and that was his first Christmas. I can't think of a cuter elf, and as you can see from Peter's expression, it seemed like a very happy and exciting time. As Christmas is approaching eight years later, a whole different feeling lingers in our home. A feeling I would never have thought could exist or happen to us.

As we acknowledge the fact that Mattie has been gone from our lives for 64 weeks, I felt the following poem was appropriate for tonight.

We Remember Them ~ Gates of Prayer

At the rising of the sun and its going down, we remember them.
At the blowing of the wind and in the chill of winter, we remember them.
At the opening of the buds and in the rebirth of spring, we remember them.
At the rustling of the leaves and in the beauty of autumn, we remember them.
At the beginning of the year and when it ends, we remember them.
As long as we live, they too will live.
They are part of us, we remember them.

I did not sleep well last night, though that isn't anything new since I haven't slept well in the past couple of weeks. My sleep goes in cycles! However this morning as Peter awoke for work at 5:45am (the hour he gets up each day!), I got up with him. I wanted to get myself ready so that I could get to the Food and Drug Administration meeting on time. Kristen, Mattie's oncologist and my friend, invited me to attend the Pediatric Oncology Subcommittee of the Oncologic Drugs Advisory Committee meeting.

Just so we are all on the same page, the FDA is responsible for the following (pulled right from their website):
(1) The FDA is responsible for protecting the public health by assuring the safety, efficacy and security of human and veterinary drugs, biological products, medical devices, our nation’s food supply, cosmetics, and products that emit radiation.

(2) The FDA is also responsible for advancing the public health by helping to speed innovations that make medicines more effective, safer, and more affordable and by helping the public get the accurate, science-based information they need to use medicines and foods to maintain and improve their health. FDA also has responsibility for regulating the manufacturing, marketing and distribution of tobacco products to protect the public health and to reduce tobacco use by minors.

(3) Finally, the FDA plays a significant role in the Nation’s counterterrorism capability. FDA fulfills this responsibility by ensuring the security of the food supply and by fostering development of medical products to respond to deliberate and naturally emerging public health threats.


At the meeting four drugs [(1) Crizotinib, manufactured by Pfizer, Inc.; (2) Pralatrexate, manufactured by Allos Therapeutics, Inc.; (3) Denosumab, manufactured by Amgen, Inc.; and (4) Eribulin, manufactured by Eisai Inc.] were reviewed and discussed, however, I must admit prior to attending this meeting, I really did not understand the process of how a pediatric cancer drug gets developed, brought to a clinical trial, and thereby allowing children access to new and potentially effective treatments. Keep in mind that the FDA has NOT approved a new pediatric cancer drug in over a decade, and in the words of one parent who testified this morning...... THIS IS UNACCEPTABLE!

The meeting began at 8am and ended probably around 5pm. By 3pm, I had as much as I could absorb and left. However, it was my understanding that this was the very first meeting of this subcommittee which was opened to the public. The conference room I was in today, on the FDA campus, was built specifically for these public forums. So in a way, I observed a very ground breaking meeting!

The format of the meeting consisted of the following: 1) an introduction to the drug company, 2) a presentation by the company of the drug in question, 3) clarifying questions posed by the FDA subcommittee to the drug company, 4) an open public hearing, where parents of children who may have used the drug in question, through a pediatric trial, could voice their support or concerns for the drug, and 5) questions and discussion among the FDA subcommittee regarding the drug.

This subcommittee was comprised of over 20 professionals. Many of whom are pediatric oncologists from either well known national hospitals or they are affiliated with the National Cancer Institute (part of NIH). It took me about an hour to understand the format, to get on board with the lingo, and to understand the dynamics of the members of the subcommittee. It was clear that some of the members are veterans to the world of pediatric oncology and at first, I found the scientific banter upsetting. Upsetting because pediatric cancer was discussed in a rather cold and calculated way. However, as I began to absorb what was being said, I realized that many of the oncologists are very compassionate about their patients and their families, and when a drug was being considered, doctors were truly thinking about its feasibility, effectiveness, toxicity, and the ethical nature of putting a family through certain drug regimens.

There were several breaks during the day, including time for lunch. During those times, I got to connect with Kristen. It is ironic that Kristen was Mattie's doctor, we fought an amazing battle together to save Mattie's life, and yet despite those memories we have become friends. However, what I suspect all along, is that Kristen and I have a lot in common, and now that we do not have this patient-doctor relationship, we are free to get to know each other. Kristen is used to my questions, and one of the things I appreciated about her as Mattie's doctor was that she was open to all kinds of medical questions and when she did not know something she admitted it and researched it. That was a very refreshing change compared to the first oncologist we worked with. I fired many questions at Kristen today as I was desperately trying to figure out the procedure for how a pediatric drug gets tested on patients.

Keep in mind that the drugs given to children to combat cancer, are the result of extensive testing on adults. However, also keep in mind that ADULT cancers and CHILDHOOD cancers are DIFFERENT! Typically adult cancers arise from behavioral and environmental factors, whereas childhood cancers are the result of genetics. Therefore the constant theme presented at the meeting today was CAUTION. These pediatric oncologists cautioned the drug companies, because drugs designed to treat adult cancers, most likely won't work in the same fashion or use the same pathways in children.

You have to ask, what was the purpose of today's meeting? After all, the majority of pediatric oncology trials are regulated through the Children's Oncology Group (a worldwide clinical trial cooperative group supported by the National Cancer Institute (NCI) and fashioned with the mission of studying childhood cancers). So what role does the FDA play in all of this? Well I am learning! In fact, I chatted with a fellow mom today who lost her son to brain cancer. I have met her at other pediatric cancer events, and she told me she has been engaged in the cancer world for 10 years, and she is still trying to figure out the complexity of pediatric drug development. That made me feel better, because there doesn't seem to be a layman's playbook to follow.

To me the FDA serves two roles. First it was very clear that this subcommittee is comprised of a diverse and very knowledgeable group of pediatric oncologists, who literally listened to research proposals from the drug companies, and then for the next 90 minutes gave them feedback, brainstormed research design, its feasibility, and specifically addressed whether it was even worthwhile to pursue pediatric studies with these adult drugs. At the end of the day, they want to assure that children enrolled in a study will have access to effective treatment with low toxicity and side effects. This may appear to be an academic exercise (making a presentation, answering questions, and getting feedback), but it is actually much more than that, because the committee is shedding clinical insights on the proposed drug. The other role the FDA is serving, is it is providing an incentive to drug companies to test and design cancer drugs targeted to children. The FDA implemented the Pediatric Exclusivity Provision (which if you are interested you can find out some information about this below), which in essence provides marketing incentives to manufacturers who conduct studies of drugs in children. This law provides six months exclusivity in return for conducting pediatric studies. Meaning that a drug company is given the exclusive rights to market and sell the drug for its particular purpose, without the competition of generic versions for example. This clearly is a way to generate income for these drug companies, which is naturally an incentive.
It is unfortunate that such incentives are needed in the world of pediatric cancer. But in comparison to the adult population, there appears to be fewer numbers of children developing cancer, and even so, there are so many different forms of pediatric cancer, which all require different treatments. So the task is daunting, especially when the sample size to test drugs on is so small. Though I think it depends on your outlook. Since to me, 46 children diagnosed in this Country with cancer each day is A LOT!



_________________________________________________________
Implementation of the Pediatric Exclusivity Provisions
http://www.fda.gov/NewsEvents/Testimony/ucm115220.htm


Children suffer from both child specific diseases and diseases that also occur in adult populations. In both cases, children, by necessity, are often treated with the same drugs as those used to treat adults. Even today, only a small fraction of all drugs marketed and used as therapies for children in the United States (U.S.) has been studied in pediatric patients, and a majority of marketed drugs are not labeled, or are insufficiently labeled, for use in pediatric patients. Safety and effectiveness information for the youngest pediatric age groups is particularly difficult to find in product labeling. This is a particular concern as it is this youngest population that is undergoing marked physiologic and developmental changes which are affected by drug therapies. The absence of pediatric testing and labeling poses significant risks for children. Without appropriate testing and labeling, inadequate dosing is likely to occur. Inadequate dosing information exposes pediatric patients to the risk of adverse reactions that could be avoided if such information were provided in product labeling and may reduce the benefits that could be gained if the therapy were properly dosed. In addition, pediatric patients may be denied the ability to benefit from therapeutic advances because physicians choose to prescribe existing, less effective medications in the face of insufficient information about the use of a new medication in the pediatric population. The failure to produce drugs in dosage forms that can be used by young children (e.g., liquids or chewable tablets) also can deny them access to important medications.

The Pediatric Rule, proposed in 1997, finalized in 1998, and effective on April 1, 1999, requires that manufacturers of certain new and marketed drugs and biological products conduct studies to provide adequate labeling for the use of these products in children. Under this regulation, FDA can require pediatric studies of a new drug or biological product if the product is likely to be used in a "substantial number of pediatric patients" or would provide a "meaningful therapeutic benefit" to pediatric patients over existing treatments. FDA also can require pediatric studies of marketed drugs if either of these conditions applies and inadequate labeling could pose significant risks. The term "meaningful therapeutic benefit" is defined as a significant improvement in the treatment, diagnosis, or prevention of a disease, compared to marketed products adequately labeled for that use in the relevant pediatric population (Title 21, Code of Federal Regulations "314.55(c)(5)). FDA considers the term "substantial number of patients" to mean 50,000 pediatric patients in the U.S. with the disease or condition for which the drug or biological product is indicated (63 Federal Register 66636).

FDA IMPLEMENTATION OF THE PEDIATRIC EXCLUSIVITY PROVISION
The Agency has implemented the pediatric exclusivity provision according to the requirements of FDAMA by:
  • publishing a list of drugs for which pediatric information may be beneficial;
  • working with sponsors to develop and issue Written Requests for pediatric studies;
  • reviewing submitted studies;
  • making exclusivity determinations; and,
  • submitting a Status Report to Congress in January 2001.
___________________________________________________

During the meeting a discussion arose about Osteosarcoma. Since one of the drugs was suggested to be of value in treating this disease, though there was NO data to support this thinking. Nonetheless, one of the doctors on the FDA panel discussed multifocal osteosarcoma. He basically said that this is a terminal disease and was questioning what kind of role the drug in question would play. As I was listening to him, I felt that he understood my plight, and the challenges Peter and I had to face. What do you do as a parent, do you fight the terminal disease or refuse aggressive treatments and focus upon end of life care for your child? I do not think there is a right answer to this question, other than in our case, fighting was the stance we took. At the end of the seven hours I spent at the meeting, I felt inspired by what I heard. Not that I am under a delusion that pediatric cancer will be cured any time soon or ever, but I was impressed by the caliber people thinking through these issues and struggling with the desire to bring new drugs to children and yet not allowing this to happen without substantial data to back up drug effectiveness.

Peter and I went out to dinner tonight with Jerry and Nancy (Mattie's favorite musical duo at the Hospital). As always we had a lot to chat about, to catch up on, and to share. However, after a full day, I am exhausted, and will leave you with this message we received from Kristen tonight. Kristen wrote, "Although I was fortunate to spend some time with Vicki today I certainly missed seeing you Peter! I want you both to know I am thinking of you on this Tuesday and everyday. Much love."

November 29, 2010

Monday, November 29, 2010

Monday, November 29, 2010

Tonight's picture was taken in December of 2002. Mattie was 8 months old, and was fascinated by our first snow. When we opened our front door, he basically charged the door with his walker (or as we affectionately called it tot wheels) to get outside. As you can see from his look, before venturing out, he turned back around to check with us to see how we would react to his desire to go outside. Mattie, right from day one, was a boy on a mission. He was a logical thinker, he was persistent, and he also had a way of capturing your attention and getting you interested in whatever he was doing.   

Quote of the day: Every action of our lives touches a chord that vibrates in Eternity. ~ Edwin Hubbel Chapin


This morning, I woke up to a lovely e-mail from Laura. As some of my readers may recall, Laura was living in England and is studying to be a pilot. She is a daily blog reader, and as her message this morning let me know, she has recently moved to New Zealand to continue her flight training. In a way, I would love to know just how far geographically Mattie's blog is traveling. Laura wrote this today, "I took (what I'd hoped would be) a gorgeous picture of a Mattie moon last week with the intention of sending it to you. Unfortunately, I was PRETTY busy also trying to fly at the time so it smudged. Anyway, the thought was there." I am not sure about my readers, but when I look at this picture, I do not see any imperfections or smudged picture. I see a beautiful Mattie Moon over the skies of New Zealand!































I simply love this picture and I admire Laura's ability to fly a plane and take a picture of Mattie Moon all at the same time. The funny part about this is I try to put myself in Laura's position, and the whole idea makes me laugh. I am such a nervous wreck flying that the whole notion of snapping a picture at the same time as flying a plane would be impossible task for me. Nonetheless, I look at this picture and it seems so peaceful and very meaningful. Regardless of the continent, Mattie illuminates the night sky. He was and continues to be a powerful force in our lives, and somehow this picture was a beautiful way to wake up because it was a sign from nature (and Laura!) that reminded me Mattie is still out there.

This morning I received a phone call from Mattie's oncologist and my friend, Kristen. I am meeting Kristen tomorrow at a Food and Drug Administration meeting. This is a meeting of the Pediatric Oncology Subcommittee on Oncologic Drugs Advisory Committee. The subcommittee will hear about pediatric development plans for four products that were either recently approved by the FDA or are in late stage development for an adult oncology indication. Based on the information presented, the subcommittee will consider and discuss issues relating to the development of each product for pediatric use and provide guidance to facilitate the formulation of written requests for pediatric studies, if appropriate. The four products under consideration are: 1) crizotinib, manufactured by Pfizer, Inc., 2) pralatrexate, manufactured by Allos Therapeutics, 3) denosumub, manufactured by Amgen, Inc., and 4) eribulin, manufactured by Eisai, Inc. This meeting starts at 8am and runs until 5:30pm. I am not sure how long I will stay to listen to these proceedings, but I will give you an update tomorrow. The ironic part about all of this is these meetings are open to the public, but I most certainly wouldn't have known about this unless Kristen informed me. Members from the public are also allowed to speak, and I am curious to hear what will be presented tomorrow.

I spent a good portion of the day today with Ann. Mattie's school was still on Thanksgiving break so Ann's children were home as well. My ten year old friend, Katharina, was also visiting, and we spent time chatting this afternoon. When Tanja came to pick Katharina up after work, the three of us sat down and had hot tea together. I recall quite well the days when I was a mom, juggling work and Mattie. Some days I did not know if I was coming or going. Being a mom is a wonderful and important role, but it is also an all consuming role. Somehow when becoming a full time parent, it is easy to lose one's self in the process, and not take time for one's self. So when Tanja came in today, instead of her picking up Katharina and leaving, I asked her if she wanted to stay for tea. A forced break at times is very necessary for moms, and I was happy I could create such a break. It seems to me that life is truly about making time for these breaks and these connections. Our daily tasks and schedules are naturally vital for us to perform, but my hunch is NONE of us at the end of the day looks upon these tasks with fondness, as we do of our connections with others. We do tasks because we have to, whereas we take breaks and connect with our friends because we want to. It gives us purpose, meaning, and helps us regain our inner strength. Needless to say, I gained great perspective from this little "break," a gift which I wasn't expecting today. 

November 28, 2010

Sunday, November 28, 2010

Sunday, November 28, 2010

Tonight's picture was taken on the day Mattie was born, April 4, 2002. Mattie was born two days early and by c-section. As Peter and I were going through photos tonight, we laughed at some of the pictures from that time period. Mainly because it looked like I had survived an arduous battle, and Mattie looked absolutely great. Labor and delivery was very challenging for me, because I had a c-section and also had unexpected bladder surgery to remove a benign tumor that was the size of a grapefruit. I stayed in the hospital for five days after Mattie was born. Though some of the nurses felt that I should have remained in the hospital longer, between not feeling well and people jumping in and out of the room at all hours, I felt we all needed to go home. But recovery was painful and balancing that along with a newborn, made it a time in my life I will never forget. However, despite all the pain, when you look at that cute face, everything seemed like it was going to be alright. I have learned that looks can be deceiving.

Three Roses by Charlie Brown

Three roses in a vase
What do they mean to me?
Two parents and child
That's what was meant to be.
Together they're a symbol
Of love that was meant to last
It doesn't reflect our present,
But is symbolic of our past.
There is that simple story
About the bravery of a little soul,
How everything good was brought about
As his suffering took its toll.
I just can't accept that,
Although I want to believe,
That there is a reason,
That some parents have to grieve.
So I am left wondering
Where that leaves me?
In a house without a child,
And with grief for company.

I received the above poem today from my friend Charlie. She told me she was compelled to write the poem because of the vivid picture I painted through words in last night's blog. She captured the love from Peter's roses that he gave me and my internal battle with the story, The Brave Little Soul, quite eloquently.

As today marks the last day of our long weekend together, I told Peter last night that I wanted to see the Norman Rockwell exhibit at the Smithsonian American Art Museum. I had seen several ads for this exhibit and since Rockwell was someone I really never appreciated when I was younger, I felt that having survived cancer and now working through grief, that these life changes could possibly affect my viewpoint about his art. I know myself well, because I viewed Rockwell's art in a completely different manner today.

Norman Rockwell was born in New York City in 1894, and he always wanted to be an artist. At age 14, he enrolled in art classes at The New York School of Art. Two years later, in 1910, he left high school to study art at The National Academy of Design. Rockwell found success early. He painted his first commission of four Christmas cards before his sixteenth birthday. While still in his teens, he was hired as art director of Boys’ Life, the official publication of the Boy Scouts of America, and began a successful freelance career illustrating a variety of young people’s publications. In 1916, the 22-year-old Rockwell painted his first cover for The Saturday Evening Post, the magazine considered by Rockwell to be the “greatest show window in America.” Over the next 47 years, another 321 Rockwell covers would appear on the cover of the Post. In 2008, Rockwell was named the official state artist of the Commonwealth of Massachusetts.
 
Telling Stories is the first major exhibition to explore in-depth the connections between Norman Rockwell’s iconic images of American life and the movies. Two of America’s best-known modern filmmakers—George Lucas and Steven Spielberg—recognized a kindred spirit in Rockwell and formed significant collections of his work. Rockwell’s paintings and the films of Lucas and Spielberg evoke love of country, small town values, children growing up, unlikely heroes, acts of imagination and life’s ironies.


Mr. Lucas and Mr. Spielberg trace their Rockwell love to their childhoods, when they pored over the covers of The Saturday Evening Post, a weekly magazine (and misnomer) that arrived in mailboxes on Thursdays. They started collecting his work before it was validated by the art world. According to his records Mr. Lucas bought his first Rockwell, a calendar illustration, on May 16, 1980. A year and a half later Mr. Spielberg bought his first Rockwell, a stirring painting that was commissioned in 1923 as an advertisement for Underwood typewriters. It shows a young writer hunched at his cluttered desk as Daniel Boone floats above on puffy clouds, a figure of glamorous virility who provides the boy with both a subject for his literary efforts and a painful reminder of his limitations. For an actual review of this exhibit, click on the The NY Times, July 1, 2010, article: http://www.nytimes.com/2010/07/04/arts/design/04rockwell.html?pagewanted=1&_r=2&sq=rockwell&st=cse&scp=1

Rockwell’s working process resembled that of a movie director. He “auditioned” his models, determined the pose and facial expressions of his characters, dressed them in authentic costumes or uniforms, and selected props that give important clues to the personalities and circumstances of each story. He even acted out the parts the models were to play so they would understand exactly what he expected of them. In the late 1930s, Rockwell began using photographs to develop his compositions. Instead of asking models to pose for long hours, he used photography to capture their positions and expressions quickly and to adjust props and lighting until he had achieved the desired effect. He often used elements from as many as one hundred photographs in his color sketches and pencil drawings before painting the final canvas.
Rockwell was a masterful storyteller who could distill a narrative into a single frame. His pictures tell stories about the adventure of growing up, of individuals rising up to face personal challenges, the glamour of Hollywood and the importance of tolerance in American life. He created his pictures with strategies similar to those used by filmmakers.

Rockwell MOST certainly has his critics. I admit to being guilty of sharing in these negative thoughts about his work for many years. The main critique others have about Rockwell centers around the sweet and contrived paintings he created, and the thinking that he posed and crafted these snapshots because this is what he wanted reality to be, and what he wanted others to believe. However, as I look at his art today, with a more mature and most definitely a more fragile lens, I can appreciate and respect his ideals, his moral values, and the importance of personal honor, the value of family, and the love of Country. In addition, isn't art about one's interpretation of things anyway? So the fact that he posed his subjects no longer bothers me, because I realize he was trying to make a statement, a statement with an artistic agenda which focused on community, responsibility, and patriotism.

Several of Rockwell's paintings and charcoal sketches spoke to me today. However, I am sharing five in particular with you tonight. I was UNABLE to take photographs in the gallery, but was able to find the pictures below through a google search. However, if you want to see the images of all the paintings I saw today, just click on this Smithsonian link: http://americanart.si.edu/exhibitions/online/tellingstories/
 
The photo does not do this painting justice. In person, the painting simply captures your heart.

Good Boy (little orphan at the train) - 1951
"Orphan Train" is a first-person narrative told by an old man who had been the youngest child on a foundling train. After the orphanage where he lived burned down, the nuns headed out by rail, hoping to find homes for eighty-seven children. Steven Spielberg, an adoptive parent himself, remarked on "the hesitancy of the adoptive mom, the delicacy of her body position, the distance between her and the child. That is the drama and the pathos and the passion of the story."


The Stuff of Which Memories are Made - 1922
In 1920 Rockwell received a commission from General Electric's Edison Mazda Lamp division to paint images for an advertising campaign. It demonstrates Rockwell's growing skill at using light to create an emotional tone. Over a seven-year period, Rockwell painted at least twenty ads for Edison Mazda that appeared in the Saturday Evening Post, Ladies' Home Journal, and Good Housekeeping magazines.


Though this was a painting commissioned by a lighting company, which was trying to link buying a GE lamp with solid family values, I saw so much more in this picture. First of all the title captures the imagination. But then as I look back on my days as a mom, and I recall what it felt like to get to the end of the day, and have a peaceful, quiet, and tender moment together..... I remembered this is indeed what memories are made of.

This is another stunning painting with a powerful moral message.

Peach Crop - 1935
Peach Crop illustrates a Depression-era story extolling the virtues of true love over wealth. An impoverished medical student is engaged to a beautiful, but selfish socialite. He falls instead for a pretty but poor young woman who is injured at work. When he learns she wants to go to nursing school to help people, he reconsiders his marriage plans.
 



Going and Coming - 1947
After World War II, Americans headed for the seashore, lakes, and mountains on vacations long deferred due to gasoline rationing. Magazines and newspapers recommended ideal vacation spots and offered advice on what to do with pets while families were away. Travel agencies also reported that people were taking longer vacations because some 35 million Americans received the relatively new benefit of paid vacation time.

What is so wonderful about this painting is we can ALL relate to it, even today. The top bar of the painting shows a family excited and energetic about their family vacation and adventure ahead. The bar below, shows the dreaded return home.

Window Washer - 1960


Rockwell painted many humorous pictures as well. This one caught my eye. This office assistant in green in taking dictation, and as she glances up, she can see that a window washer is staring at her and winking. It is whimsical and at the same time poignant because it illustrates the complexities women have in the workplace. The struggle between being taken seriously and viewed as competent versus judged as the fairer sex.


 
 

Peter and I enjoyed our time in the museum and chatting about the paintings. He was far more familiar with Rockwell's work than I was, and the ironic part was each Thanksgiving car trip we used to take to get to Peter's grandmother's house in Connecticut we passed Rockwell's studio in Stockbridge, MA. We passed it and NEVER stopped! I am happy we stopped today.

After our museum trip, we went out for an early dinner. While sitting at the restaurant, I showed Peter the photo Ann had sent me today. Ann wanted me to see what her son, Michael, and her brother-in-law, Larry, were wearing today! Mattie Miracle Cancer Foundation t-shirts, while rock climbing. Mattie definitely would have approved!