Stage 4

“When you meet the one who changes the way your heart beats, dance with them to that rhythm for as long as the song lasts.”  Kirk Diedrich

Let me tell you the story of an amazing woman, couple, family that I know.  My family will be participating in a 5K run/walk that they have organized. The woman is Dr. Amy Reed, an anesthesiologist, a mother of six, a wife, daughter, sister, friend.  Her husband is Dr. Hooman Noorchashm, a cardio-thoracic transplant surgeon.  Hooman grew up in the suburbs of Philadelphia with my husband, and they spent their childhood years and teens as best friends.  Many of their weekends entailed going to each other’s homes, walking to the local Wa-Wa convenience store to buy magazines and snacks, and sharing hours discussing future dreams.

I first met Hooman around 1996, within the first year that my husband and I were dating.  He greeted me with open arms, a welcoming embrace, the warmest eyes and widest smile.  He was so excited to meet his childhood friend’s girlfriend, knowing that whoever I was, his friend had fallen hard for a girl, just like he recently had.

Amy and Hooman had started dating around the same time that we had, and got married a couple of years after us.  We had our first-borns, boys for both families, within a couple of months of each other in 2001.  From 2001 to 2006, my husband and I had a total of 3 kids, 2 boys and a girl, completing our family.  From 2001 to 2012, Amy and Hooman had 6 kids, 4 boys and 2 girls, all while both completing M.D./Ph. D.’s and residencies and fellowships.  Our family moved to Los Angeles and continued on its happy journey, while Amy and Hooman’s family moved to Boston before their journey took a drastic turn.

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Amy and Hooman at their wedding in 2001

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The 4 of us / 2 happy couples at Amy and Hooman’s Wedding

In October of 2013, Amy underwent surgery to have what were thought to be benign uterine fibroids removed.  Eight days later, she received a call that the pathology had come back as cancer, a leiomyosarcoma.  The tool that was used to help remove her uterus, called a morcellator, had actually caused the cancer to spread throughout her body during her procedure, advancing her cancer from a stage 1 to a stage 4 cancer.  85% of women with stage 4 leiomyosarcoma die within 5 years of diagnosis.

Over the last two years, Amy and Hooman have tirelessly waged a battle to try to get the FDA to ban the use of the morcellator in Minimally Invasive Robot Assisted Hysterectomy, all while raising their 6 kids and working.  Since they started bringing awareness to Amy’s story, other women whose cancer was spread and upstaged by the morcellator have also come forward.  At the end of this post, there are multiple links to their petition and their story.  Amy’s cancer has currently spread to her spine, and no one knows how much more time she has with her 6 beautiful kids and her extended family.  While she is living every day that she has with her kids to the fullest, she is still taking the time to ensure that other women will not be at risk of having their cancers potentially spread due to use of a morcellator.

The Second Annual Slay Sarcoma 5K Run/Walk, organized by Amy’s family, will be on Saturday October 17th, 2015 in Pennsylvania, but my family will be doing it as a virtual walk/run from where we live.  All proceeds are donated to funding research specifically on fighting leiomyosarcoma.  My family will donate and sponsor your run, if you just read and bring awareness to Amy’s story and cause.  You walk/run by yourself or preferably with your kids from anywhere in the U. S., and we will donate the money for all of you.  You have ten family members who want to run or walk, we will gladly donate the registration fee for all of them.   I have created a team called the Hassouri/DadvandFamily team with password slaysarcoma.  You can join our team from anywhere that you are.

If you would like to join us, then you can either go on the contact me link in my blog home page, or send me a private message through my Facebook messenger, and I will get the information I need to register you and your family and have your race shirts and bibs sent to you.   I promise to not send your private information to anyone.  If you register yourself, I don’t have a way of covering your cost.  I hope you will join us in spreading awareness to this cause.

Please visit the following links to read a little bit more about the Slay Sarcoma 5K, and more about Amy’s story and what she and her family have managed to accomplish to help prevent further unnecessary death.

If you’d like to learn more about the morcellator and Amy’s fight, you can directly click on any of the links below:

Prevention:  How Many People Have to Die to Show a New Surgical Technique Isn’t Worth It?

An MSNBC segment on FBI Investigating the Morcellator , a video clip that features Amy Reed.

Slay Sarcoma 5K Run/Walk

Change.org , the link to Amy and Hooman’s petition to ban the morcellator.  This site also includes many more news links than what I am including on my blog for those interested in learning more.

USA Today:  When a Hysterectomy Can Be a Death Sentence

 

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Last year, Amy and Hooman pictured in the center behind the check, were able to raise $30,000 to go towards sarcoma research with the help of friends and family

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Contact me through the blog or Facebook messenger to join us.

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About Paria

Runner, mother, pediatrician, blogger

22 comments on “Stage 4

  1. We’re in! Is there a direct way to register for the virtual 5K– just to save you the time? Its wonderful you’re doing this to raise awareness! Scott’s family just did the Pan Mass Challenge– 6 of them did a 2 day bike race to raise money and awareness and to honor his dad who died of glioblastoma, and his sister who just completed her breast cancer treatment. They raised $30,000 for Dana Farber cancer research.

    • You can go directly to http://www.slaysarcoma.com and either register as an individual or your own family team, or you can go under joining my team name which is Hassouri/Dadvand Family Team and password slaysarcoma, but if you do it yourself you will have to end up paying for the registration fees yourself. I’m happy to pay for your fees, so I will email you what info I need. Thank you for your support and for sharing.

    • Wendy!! Thanks for reading. Yes, you could walk a 5k, hopefully as a Boston Qualified marathoner!!! I will email you privately info I would need to register and pay for your run and you know let me know! Thanks.

  2. Thanks for spreading awareness—what a remarkable. The three able bodied Rissiers will participate; I will sign up directly.

  3. What a heartbreaking story this is. Thank you for shedding light on this dark shadow. It’s regular people who are always interesting heros to me.

    I would have participated in this virtually with a 5K walk, but that weekend is one of my all-day, all-weekend yoga teacher training sessions. I’ll make a monetary donation, as well as set my intention for that weekend for your friend and her family through my practice, my meditation, even chanting.

    Writing that just brought this to mind, not a chant, but a mantra, if you will – “dukha out, sukha in”

    “kha” means “space”. “du” means “bad”. “su” means “good”. So, dukha can be translated as “suffering”, “dis-ease”, and sukha can be translated as “ease”, “happiness”.

    • Christine…I love that mantra. And I love that you will be setting your intention for Amy and her family that weekend. It’s all about brining more awareness. So thank you!! xo.

  4. Thank you for supporting Amy and Hooman and their family. I am an eighteen year survivor of uterine leiomyosarcoma; I had a vaginal hysterectomy in which the gynecologist manually morcellated the tumors and sixteen week sized uterus into 37 pieces. I attempted to join your team and the system would not accommodate my registration. I live in Seattle; my late husband was an anesthesiologist who died at age 53 at work at the hospital. I successfully lobbied the State of Washington to upgrade the hospital safety construction regulations. Had the regulations been in effect in 2006, my husband might still be alive. Even though I am a lawyer, I cried at every hearing. So, I would be glad to join your team and support leiomyosarcoma research, but I have not been able to do so.

    • Thanks Deborah. I took down your email address and edited it out of the comment so that other readers wouldn’t have it and send you spam. Actually, when someone comments, I automatically get there email, so I will email you shortly with what I need to register you and sponsor your run. Since this issue is so close to your heart and you are also a lawyer, you can go to the links to slaysarcoma and the change.org petition if you haven’t already done so, and see all the up to date information on what Amy and Hooman have done.

  5. I had to take my hand away from my gaping mouth to start typing. Shock does not begin to explain what I feel after reading this post. Utter disbelief, maybe? I’m so sorry I missed this and I’m hoping I can donate to her cause.

    • Allie, I’ll email you separately privately. Obviously, I’m happy to register and sponsor for your family to do the virtual 5K where you are. People who can’t do the virtual run that day can also donate directly to the research fund. Thank you for reading, and I’ll be in touch.

  6. This is one of my favorites of your blog posts. You write so beautifully, clearly, and openly about why morcellation of fibroids should be banned and the personal devastating impact upon Amy and by extension Hooman and their family’s lives and then how, while battling aggressive cancer, they took this principle of First Do No Harm to heart to lead a national campaign to save others’ lives from morcellation (which is considered standard of care). This you write embedded in a tale of love and friendship that you have shared with them for years. Thank you for organizing virtual runs. I feel very lucky to be able to join the run that day as I do not live too far. I look forward to joining you on it.

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  8. Hello, My name is Faisal Akhtar. I met with Dr. Reed only briefly, when she was my teacher, a couple of years back. It is beyond shocking to hear what happened. I wanted to personally send my gratitude to her for being my teacher/hero during my time in Boston. You are an amazing person and its not hard to see how you have become a hero to so many more. Also, I would like to help in any which way I can!

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