July 2010

This August will be the 10^th year that I have ridden the PMC. It is a hard decade to think about. Ten years ago, on August 4, 2001, Molly got up at 5am to braid my hair so that it would lay flat under my helmet. My hair was long then because Molly, after loosing her hair again and again and again, had asked me to grow my hair long,  for her, long hair by proxy.

It was my first year riding. My ‘training’ was a few rides here and there, nothing that really prepared me for that one-day ride, an 80-mile trip. But, as the hardships of the ride could not possibly compare to the hardships that Molly endured, I rode. I didn’t have bike clothes or shoes or gear, I wasn’t terribly fit, and I had no idea what I was getting into.

Molly died the following February.

From then on, the ride simply became a thing that I did. By a couple of years in, I was riding the 2-day, from Wellesley to Provincetown. Sometime after that, I joined the Friends for Life team to raise funds specifically for neuroblastoma research.

By then, I was working at the Broad Institute and Dana Farber in genomic research. In 2007, with funding from Friends for Life (www.myfriendsforlife.com) and Alex’s Lemonade Stand (www.alexslemonade.org), I worked on a project looking for mutations in DNA from neuroblastoma tumors. I found a cluster of mutations in a gene called ALK. Importantly, in testing, neuroblastoma cell-lines with these mutations were responsive to recently developed drugs. The following year, these findings were published in Nature concurrently with 2 other groups doing similar research. This offered the first promise of a targeted therapy for neuroblastoma.

Recently, Anna, a young woman who, like Molly, was one of the rare older children diagnosed with neuroblastoma, was at the end of her treatment options with extensive disease. Her oncologist, Dr. Sam Volchenboum (one of Molly’s doctors) tested her DNA for these mutations. She had the mutation and, because she was 21 and therefore eligible for an adult trial - was put on this new drug. Stunningly, this drug has not only halted the progression of this intractable disease, but has beaten it back some. Please read Anna’s story here: http://www.annabanana.org/. She is a brave and beautiful young woman.

We do not know how this story will end. We only know that we have evidence of the first targeted therapy for neuroblastoma working. In the neuroblastoma world, this is a miracle.

This is a direct result of your contributions, and it could not have happened without you. We thank you for your generous contributions over the last 10 years - and we ask you to give again.

Thanks so much, Megan

Here is a recent story about work that I have been doing at Dana Farber and the Broad Institute;

http://www.dana-farber.org/Newsroom/Publications/Honoring-her-daughter.aspx

or click the link on this page.

Megan's Letter '05 and Molly's Speech '99

8 June 2005

Dear Friends,

When Molly died of neuroblastoma in the 27th of February 2002, she was waiting on her college acceptance letters. In between and during treatments and transfusions, she had managed to apply to college. Her guidance counselor, in what he percieved as a kindness, called all the colleges after she died and cancelled the applications. For that, I was profoundly disappointed. I had looked forward to those letters coming in, disembodied so to speak, and I imagined that I could, in that rolling of the college dice, divine some inkling of where she might have gone, what she might have become.

Not that I really could have. If we learn nothing else in raising children, it is that they each have to find their own path in the world. Molly's path was altogether too short and too full of suffering. After Molly died, I took a chemistry class, a basic one, just to try to understand some of the fundamentals of cancer that I had struggled with while she was sick. One class led to the next and the following year I was accepted into a Masters program.

Last month, the very month that Molly herself should have gotten her degree and stepped out into the world, I stood to receive my diploma. The moment was so complex that even now I struggle to make sense of it; both a cruel and terrible irony, and also a fine bittersweet moment, one that in some small and precise way, honored her. I now work on a project that sequences the DNA of tumor samples in search of mutations. And as a direct result of some Pan Mass funding, we will soon be sequencing neuroblastoma samples.

Neuroblastoma is still as rare and still as devastating. It is still exclusively a cancer of children. While incredible discoveries and advances have been made in all fields of cancer research, moving these into the clinical setting is still an arduous and expensive task.

I thank you all for your incredible generosity and I ask you to give again. Last year the PMC raised $20 million for Dana Farber. Your contributions have amounted to some $57,000 since my first ride, not a small amount. This money can make a difference today. This year the money I raise will be directed to neuroblastoma research. Please send checks made out to Pan Mass Challenge to me at the address above. To give online, go to www.pmc.org, click on eGifts, and enter my rider ID number, mh0114.

Four years ago, Molly got up at 5am to see me off. She is not here now. I ride for her.

Thank you so much for your continued support,

Megan Hanna

Molly's Speech

Molly Hanna (at 15 years old) was the keynote speaker for the Neil Bogart fundraising event for the LA Childrens Hospital on October 28, 1999. 

She was diagnosed with Neuroblastoma (stage 4), November 1, 1998 at the age of 14. At the time of this speech, she had completed 10 rounds of chemo (2 high dose), had 2 abdominal surgeries, cranial and abdominal radiation, and 3 rounds of antibodies.

Her home base for care was Dana Farber and Children's Hospital. She did Monoclonal Antibodies in New York, MIBG in Philadelphia, and a stem cell transplant in Los Angeles. After 3 and a half years of treatment, she died on February 27, 2002 one month after her 18th birthday.

Molly's speech

It's funny to think that it's been a year since Halloween, from that night which would in some ways seem like my last night of freedom, and in others, my first.   It's not funny, I suppose; it's weird, bizarre, profound in a way that I can't pinpoint.  It's been a year which has been entirely unlike all others.  I can't say that I didn't know the things that I have learned over the past year. Of course I had no idea that I had cancer, no idea of the saga which would unfold before me, no idea of the lessons I would learn in human nature, in kindness, in fear, in insecurity, in untold heroism.  I had no idea of both the pain and the joy I was to feel, no concept that feelings

existed to such an extent.  I had been sad, happy, mad, but not with the ferocity and the passion I felt them when such an unknown thing was dumped into my lap by whoever it is that does these things.

And dumped it was.  The day after Halloween, I went mountain biking with my dad in the Fells, a land reservation in in Medford, Ma.  The leaves were bright, the air was crisp, and perhaps caught in the moment of such a perfect fall day, I hit a rock going down a hill and was thrown over the handle bars. I broke my collar bone in two places, and landed on my head.  Because I blacked out for a second, when I arrived in the emergency room, the doctors felt it would be best to do a CTscan.   Unsure of what they were finding, I was  kept I was kept at Boston Childrens Hospital for about a week.  Soon the words biopsy, tumor, cancer and oncology started popping up, and after another week or so, on Friday, the thirteenth of November, they made the final diagnosis.  I, the invincible, strong, healthy, high school sophomore, had stage four neuroblastoma.  I had cancer.

All of the sudden, I was facing the great unknown.  I was facing a stranger within myself.  Perhaps that was the scariest thing of all.  The fact that it was a part of me, the fact that I could have not known.  And maybe more than that,  the fact that they didn't know.  That the doctors didn't have answers, that they didn't have cures.  That they had maybes, and statistics and percentages; the fact that in this day and age of computers and high tech this and automatic that, I could die. I have to admit it was a notion that hadn't really occurred to me, my own mortality.  Death was something that happened to old people. And it happened to drunk drivers, to people doing drugs, to people so confused they would take their own lives.   And I knew, at least, that I wasn't old. 

I tried to figure out what it was that I had done to deserve such a punishment.  I was overcome with a sense of guilt.  Why me?  I traced my life back as far as I could remember trying to figure out why I was the one now so uncertain of my life.  For a while it seemed like I was stuck in a tunnel that I couldn't get to the end of.  I felt like I couldn't follow the light that was supposed to be there, because there wasn't one.  And so I cried. 

Every time I was alone, I would bury my head deep in soft down and sob until my pillow was sodden and damp, till it hurt to cry more.  All I knew was that my life was suddenly beyond my control.  That my next year wouldn't be my sophomore year in high school, that maybe graduation wouldn't come as fast as they say it does, that maybe my dreams of going to college, of a family, a husband, my wedding, that maybe those weren't going to happen.  I felt more alone than I ever imagined possible.  All my memories from that long month are dark and clouded, fuzzy.  It's funny how quickly we forget the things that are just too painful to remember.

But all through those first terrible months, people reached out to me.  It was like these flood gates had been opened, and this love poured in and surrounded me on all sides.  People I barely knew sent me cards, flowers, cooked my worried family dinner.   But I was blind to all that.  My eyes were bound shut by a piece of tattered hopelessness.  It took realizing that I was alive, realizing that that was the whole point.  It took taking the chance to open my eyes.  And when I did, what I saw astounded me.  I saw beauty in everything that crossed my path.  I smiled and laughed, and couldn't remember what it felt like to be angry.  I saw what an incredible thing life is.  I was living:  I was laughing and I was crying and I was talking and I was walking and I was smiling. I learned to embrace each moment, to treat it as my last.  I rode that wave of love and hope and faith.  Perhaps those were the greatest medicines of all. 

But none of those are a cure.  Though I'm sure I would not have made it through the past year without them, none of them were backed by a guarantee. 

None of them provided me with the sense of security I had built my entire life on.  I could fall back on them when the going got tough, but there were times when I was not sure they would be able to break my fall.  There were times when I felt as if I might fall through. 

To date, I've had two rounds of radiation and ten cycles of chemotherapy, two of them transplant level.  I've done my share of vomiting, of not eating for weeks; at one point, I was 30 pounds under my normal weight.  At times, I was too weak to walk, and had been in the hospital long enough to almost call it home.  I've seen the inside of the ICU twice.  I've been on catheters and I've been on ventilators.  I've had a central line in my chest since last November.  I've had two abdominal surgeries, and twelve days of apherisis.  I had a nasal gastro tube down my nose and into my stomach for two weeks.  I've been infused with more blood and platelets than I can even comprehend, met more doctors than I have room for in my head.  I've been on enough morphine to kill an elephant, and lost my hair twice. I've worn wigs, not worn wigs, felt the humiliation and unbearable insecurity that goes along with it.  I've learned to ignore stares, answer questions about my illness without tears welling up in my eyes.  Originally slated for a double stem cell transplant, I fell off that protocol after just four rounds of chemo.  I'm now on an experimental treatment, monoclonal antibodies.  My last scans came back clear, but cancer still remains in my marrow.  Monday, I go straight to New York City for my second round of monoclonal antibodies.

For the past year or so, I've had cancer. 

I stand here today amazed that another year has passed for me, thankful for the life I'm now living, hopeful for the years to come.  Thank you for caring, for giving so much, for building the foundations of a new kind of hope.