Believe Minty

The trailer:

http://www.imdb.com/title/tt1931470/

A review:

http://movies.nytimes.com/2012/01/27/movies/declaration-of-war-directed-by-valerie-donzelli.html?nl=todaysheadlines&emc=tha210

We petition the Obama administration to:

KEEP KIDS ALIVE. Allocate more funds towards CHILDHOOD CANCER RESEARCH.

Children’s cancer is the #1 cause of death in children, yet the funding approved by Congress for Childhood Cancer is supremely low when compared to Breast Cancer Research which is the 6th leading cause of death in women. It is not okay that our children are dying because government funding is lacking. Cancer is the leading cause of death in children over all other childhood diseases combined! Children’s Cancer Research needs to be at the forefront of funding. These children are our future and need to be taken care, stood up for, and protected, and this includes making them a priority in government funding for cancer prevention research. CHILDREN ARE DYING EVERY SINGLE DAY DUE TO CANCER. IT IS TIME FOR THE GOVERNMENT TO STEP UP AND PROVIDE SUBSTANTIAL FUNDING FOR CHILDREN’S CANCER.

Click on the link below, or cut and paste the link, to add your name to the petition.

https://wwws.whitehouse.gov/petitions#!/petition/keep-kids-alive-allocate-more-funds-towards-childhood-cancer-research/8ZnnxNgw?mid=4

September was Childhood Cancer Awareness Month. I would like to share a speech with you that I gave at a fundraiser for the Pablove Foundation on September 15th 2011. Please check them out and support in any way you can. Thank you, ML xxo

Hello, my name is Mei Lai, and I would like to thank everyone here for being such avid supporters of The Pablove Foundation and Pediatric Cancer, a world I was blissfully unaware of two short years ago.

On September 11th 2009, my eight week old daughter, Minty, was released from PICU in Columbia after eleven head surgeries in two weeks. The first craniotomy removed a brain tumor, which turned out to be a very malignant anaplastic ependymoma.

We spent the next seven months putting our baby – literally our baby – through the rigors of a six round high dose chemotherapy protocol called Headstart III, with the final round relying on an autologus stem cell rescue of destroyed bone marrow. Currently in it’s third generation, one of the creators of the protocol was Minty’s actual doctor, Dr.Gardner, who co-wrote Headstart with Dr.Finlay, of Childrens Hospital LA. The aim of the protocol was great – to avoid radiation in children under the age of ten years old. It was the general understanding that a two month old baby was just too young for radiotherapy, so this was our only option.

Minty sailed through chemo with flying colors, never giving any indication of being sick or in pain, always so full of energy and joy, and I think sometimes she was on a chemo-high.

So when we completed the 5th round, we triumphantly steeled ourselves for the final round in reverse isolation, where Minty’s destroyed immune system would be carefully rescued with her own stem cells. This could take months, and I’d already had the phone line and cable TV turned off at home, ready for the extra long stay in-patient. However, a baseline MRI showed new tumors that had grown on high dose chemotherapy, and Minty was immediately pulled off the protocol in March of 2010.

Four months later, the day after her First Birthday, she died.

What I know now, is that no children have survived Minty’s diagnosis without radiation, though many have also died with it. This past July alone, five children with Minty’s diagnosis died within twenty-three days of each other. I emailed Dr.Gardner this terrible news, and here is what she wrote back:

Hi Mei Lai,

Dr. G

While overall childhood cancer survival rates are now almost 80%, ependymoma remains incurable in up to 40% of patients. The tumor is found in 150 to 200 U.S. children annually, making it the third most common pediatric brain tumor. Treatment has changed little in the past forty years and is limited to surgery and radiation.

It is my hope too, that drugs will be found that can cure this type of rare brain cancer in children too young for radiation. The current therapies are simply not targeted enough, and come with too many damaging, long-term side-effects. These drugs require a huge amount of money to be researched and developed. We discovered first-hand how inexact a science science is, and I implore everyone here to please continue to help with your research dollars, as well as your time and (pab)LOVE.

THANK YOU!

92 donors raised $5,446 for Minty’s 2nd Birthday Wish, benefiting The Pablove Foundation – fighting childhood cancer with love.

This is $1,446 over the goal of $4,000, and certainly helps offset the 4.75% processing fee Causes’ donation processor, Network for Good, needs to charge to cover credit card fees. I believe it still leaves Pablove with $5,187 to continue the incredible work they do, in honor of their little boy Pablo, and children everywhere battling cancer.

Thank you everyone for counting down the days with me, and for keeping Minty in your hearts and minds.

With love,

Mei Lai
Minty’s Mummy.
xxxooo

1. THANK YOU! Truly. Madly. Deeply.

2. Please follow me on twitter @missmeilai to help e-blast this birthday fundraiser for Araminta, who would have been 2 this Sunday.

ML xxoo

July 11th mark’s 1 year since Minty was taken by cancer, the day after her 1st Birthday. June 27th marked 2 years since Pablo was also taken by cancer, 6 days after his 6th Birthday.

Please consider donating money to the charity set up by Pablo’s parents, The Pablove Foundation, to help families cope when a child has cancer, and to help get more research dollars into finding a cure, by clicking on this link, or copying and pasting this link:

http://wishes.causes.com/wishes/317401.

Let’s try to raise $2,000 for Minty’s 2nd Birthday on July 10th, and $2,000 in honor of Pablo.

Thank you Christy and Melissa and Red Dye #48 for posting the speech I gave about Minty’s oncologist.

http://reddye48.blogspot.com/2011/06/my-oncologist-poet.html

Wednesday, June 15, 2011

My Oncologist, the Poet

On May 5th, 2011, I was given the chance to say a few words about my daughter’s oncologist at a fundraiser hosted by Gregory & Jeannie Trunz, in memory of their daughter, Allison. This year the dinner happened to be honoring my baby’s doctor. The 14th Annual All-Is-OnE Dinner raised over $100K for an incredible organization based out of New York City called Making Headway. Making Headway personally helped Minty and I in countless ways, big and small, expected and unexpected. I was drowning in help when my daughter had cancer, and it wasn’t always good help. This is why Making Headway really stands out with what they do, from commissioning studies, to providing support groups for siblings, to providing a reiki masseuse in the hospital, and everything in between.

Wandering Heart Valentine, feat. Minty

This incredible blogpost by Melissa Riederer says everything I wanted to say about today, but could not find the words to.

The Last Day of 2010

2010. You’ve been a hard, hard year.

There are people in the world suffering under political regimes I cannot grasp, homeless, destitute, in slavery, in the depths of the human condition, starving for things I take for granted like food, shelter, warmth, love, kindness. I acknowledge that, I know I have a life of advantage and have and will receive a bounty of blessings.

I can recognize that and still call you hard 2010, because this year, this year I was witness to suffering that should not happen, suffering that has set up camp in my heart and refuses to leave, suffering that is not my own.

For too many families 2010 is a year that will be seared not only into their memories, but into their souls. It is the year their child died from cancer.  I know two of these moms, personally.  They aren’t some caring page I follow from afar, they are women I know. Women I’ve hugged. Women whose children’s voices I can still remember, whose smiles linger in my memory and refuse to diminish. I can see them like it was yesterday, because in 2010 I did.

In 2010 I stood in quiet attendance as their coffins were buried.  It’s been 4 months since August, since their battles ended and they found relief from their tremendous physical suffering.  Tomorrow will mark month five for one of those families.  That date is what brings me here.

I sat thinking before Christmas, that in so many ways I am ready to leave 2010 and it’s hardships behind, to move on to a fresh new year.  I am sure many of you have the same feelings, or at the least are excited to start a new year and see what surprises it holds.  Are those two women?  Because I can’t shake this one simple thought in my brain.

January 1, 2011 will be the first day of a calendar year they live without their child.

As awful and horrendous as 2010 has been to them, this day December 31, 2010, they can still say, “this year, 2010, I held my child. I hugged and kissed my child and told my child they were loved beyond measure. This year 2010, my family was whole. In 2010 my child was here.” A simple tick of the clock, a ball dropping in a busy city, it takes that away from them.  From here on out they live in years without their child.  Years where their child is memory.  Their child will have been here last year.

I think of them both and wonder if their hearts want to linger here in 2010. If December 31st could last a few weeks or months until they are ready to face what happens at midnight. It’s not just another day, it’s a new beginning and one that is mixed with longing to linger here and hope for healing there.

A part of me wants to stay in 2010, because on December 31, 2010 all 200 of the kids who will be diagnosed with my son’s cancer have heard their diagnosis. In those brief waning hours of new years eve, no more children will be diagnosed with his cancer this year. I want to stay here in this moment, where membership is temporarily closed to new members. With 2011 the counter resets and 200 more families will join the ranks of the Wilms Warriors.

In 2011, over 13,000 more children will be diagnosed with cancer in the United States.  In 2011, almost every day of it, 47 children under the age of 15 will be diagnosed with cancer. Some of those days it will be less than 47, but too many days it will be more. 1,400 of those newly diagnosed children will die within this year.  Countless little warriors who have already been fighting the arduous fight for years already will die this year. All of those families will find themselves in this place with my friends come December 31, 2011.  Facing the dawn of a new year in which their child will not live.

All of this will pass and my wanting to stay here in 2010 won’t stop that from happening.

Tomorrow will be about hope, it has to be, it will be.

But for today, in these final hours of 2010 I want to hold on to the year 2010, because in 2010, Skye and Sam lived.

Posted by Melissa at 10:16 AM
Labels: awareness, coping, cuck fancer, post treatment stress disorder”

http://reddye48.blogspot.com/2010/12/last-day-of-2010.html

Thank you Melissa.

ML xx

My birthday is on October 5th and I want to to fund pediatric cancer research & advances in treatment, educate & empower cancer families, & improve the quality of life for kids living with cancer through hospital play, music & arts.

Why I Care About This Cause
I am being asked to explain why this cause is important to me. I think we all know that story at this point, and hope we can continue to keep Minty in our hearts and minds and keep advocating for more research in pediatric cancer, not just adult cancer, and also to help with the little things that make a big difference in how one goes through the rigors of oncology treatment for children. Thank you as always! ML xxoo

Click here to give to Mei Lai’s Birthday Wish. To learn more about the Pablove Foundation, visit them at http://pablove.org/.

We miss you lovely angel. From Videographer Keren Weinberg and Unplugged on a Rug. A big thank you to Mei Lai, Queens Mamas and all of Minty’s family and friends for making and extra special first birthday for Minty.

Roberta’s Oktoberfest
Sunday, September 19 · 1:00pm – 8:00pm
261 Moore St, Brooklyn, NY
This event is $free (created by Deth Killers 2000)

Drink beer. Eat sausage. Party like a bavarian. The backyard of Roberta’s is the perfect place to spend a lazy, Sunday afternoon. Ring in the death of summer’s sweltering heat.

7pm: Pass Kontrol
6pm: Lady Magma
5pm: Gunfight!
4pm: Post-Magic
3pm: Feral Foster

Punch machine all day!!! All punch machine money will go to Flashes of Hope, as a gift in memory of Araminta Sindeband – “Minty”

PRIZES!!!
Out-punch the Deth Killer of your choice, win a DETH KILLERS T-SHIRT!!!
Out-punch Greg Minnig, win an UNRELEASED DKMC BELT BUCKLE and BELT!!!
$1 BUYS TWO PUNCHES. PUNCH OVER 800 and you are automatically entered in the ULTIMATE KID PUNCH OFF @ 6PM!!!
WINNER ALSO WILL RECEIVE SAID UNRELEASED DK BELT!!!!!!!!

OK!!! THAT’S A LOT OF INFORMATION TO TAKE IN ALL AT ONCE!!!

http://www.facebook.com/?ref=home#!/event.php?eid=150759704958854&ref=mf

Wondering what a punch machine is? : “It’s like a robot that taunts you in a polish accent and plays the riff from eye of the tiger over and over” – Greg.

With the sound of celebration ringing in her ears, Minty left us on
Sunday morning. She was a year and a day old. Thank you for sharing this journey with us.