Thursday, April 7, 2011

It's all fun and games until someone loses their life.

I know that more often than not, I take a very light-hearted approach to writing on this blog. The fact is that it's a release from my personal day-to-day stress, but also, one of the ways that I find we can LIVESTRONG. I try and find humor and fun in the dreariest of situations. (It's a sick trait that I have. I'm like Chandler Bing in that regard.) It's no coincidence that one of Lance's nicknames is Juan Pelota. It's not just because it's a funny pseudonym he likes to use when he wants to pretend that he can be anonymous. It's Tex-Mex, essentially, for the nickname that Robin Williams coined with reference to Lance's survival of testicular cancer, "The Uniballer."

But, along with that sometimes light-hearted spin on cancer, is the grim reality that it's not funny. It's just not. I mean, the jokes can help relieve the tension, as I'm told my Tweeting blonde jokes helped my friend, Lindsay, as she was fighting cancer out in Yechepitzville, Canada (aka Saskatchewan). But never, never mistake that light-hearted spirit for ignoring the fact that we're doing this for a devastating disease, and, the bottom line, that it's not a laughing matter.

Therefore, I'm going to share a story about why it's so important to support causes like LIVESTRONG. Sadly, this darling was introduced to me after she had already passed away. I wish I'd had the chance to meet her before she lost her fight.

Earlier this year, many of you saw me pleading to help me raise funds for Zoe Anyan's family - to help pay for funeral costs and the handling of her remains. Then, I shared snippets of her story. Here it is in full.


On November 3, 2003, this world was blessed with the loving presence of a beautiful girl, Zoe Elizabeth Anyan.  On February 16, 2011, she lost her ten (10) month battle with cancer. Though her time with us here on Earth was short lived, she did anything but live a short life.  Zoe was a fighter and wanted to be a survivor. She loved life everyday, Zoe loved to run, dance, bake, bowling, watch Sound Tiger hockey games, going to the movies, fish, playing with friends, drawing beautiful pictures and just enjoying what each day brought her. 

On Sunday, April 25, 2010, Zoe was diagnosed with Diffuse Intrinsic Pontine Glioma, a malignant brain stem tumor.  For the month leading up to her diagnosis, she complained about double vision, on and off.  Her mother, Melissa, affectionately known as, “Missy,” was going to take her to the eye doctor, however Zoe did not like the eye doctor, so every time the appointment was to be made, she would tell Missy that she felt better.  On April 25th, she was running a very high fever with the double vision, her mother took her immediately to Yale New Haven Hospital.  The family arrived at  5:55 p.m. In the beginning they were told it could be many different things causing this fever and the double vision: the flu, Lyme’s disease, bladder infection, UTI, a possible fall, but never cancer.  After all of the tests had come back negative, the doctors called on an ophthalmologist, who suggested an MRI.  After performing the test, the doctor came into speak with her mother, as Missy vividly remembers, at 11:55 p.m..  The doctor took Missy into an empty room, where she sat her down to explain the brain stem tumor.  The partsof the conversation that stands out the most is that this was terminal and that no child has ever survived this type of tumor.  Despite these harsh words, Melissa and Zoe were determined to fight! So their journey together began.

The family remained at the hospital until Friday, April 30th, during which time, little Zoe under went several tests.  While at Yale, the family contacted St. Jude’s Children’s Research Hospital in Memphis, TN, and were told to come immediately to begin and explore trial treatments.  With her parents, Missy and Scott, by her side, Zoe traveled to Memphis on Sunday, May 2, 2010.  After meeting with the doctors at St. Jude’s, the family decided to go with a trial that began on May 11, 2010 and would finish in September 2010.  The trial consisted of six weeks (05/11/10-06/23/10) of radiation followed with chemotherapy, Capecitabine.  The family stayed in Memphis for the duration of the radiation treatment, during which time Zoe and her parents stayed at the Ronald McDonald House.

While there she met a special friend, Connor, who made her time in Memphis enjoyable and kept her focused on being a six year old girl.  One of her favorite places in Memphis soon became Graceland! She also enjoyed the zoo, horse & buggy rides, trolley rides, baseball games and many other things, too.  Even though, the tumor was trying to control her life, little Zoe refused to allow it. Though she could no longer go on roller coasters, it did not stop her from going to the amusement park.

This is exactly how she faced each day, the tumor and her treatments were her roller coaster, but the amusement park was her life.  Zoe looked at all of the other fun the amusement park “life” offered and that’s what she wanted to focus on. 

Once the family returned home on June 25, 2010, life was never going to be as it was before they left for Memphis.  The fight had just begun, with the radiation phase behind them, they needed to focus now on all of the other drugs and medical treatments.  Each day, Zoe had to take her chemotherapy, steroids, antibiotics, antacid and have continuous doctor visits.  Her primary pediatricians, Richard Edwards, CPA & Dr. Roberta Lockhart at Milford Pediatrics, became her second family.  Each week Zoe had to have her blood work drawn and continue with follow up testing.

In July, the family traveled back to St. Jude’s for a follow up MRI, at which time they were told that the tumor had showed signs of shrinkage.  However they could not yet determine for sure, what the final outcome would be, as Zoe still had some of the radiation in her system.  The family would have to wait until the next follow up MRI before they would know for sure how the tumor was reacting to the treatment.

During the next few weeks, her double vision became increasingly worse, and she began to suffer face paralysis on her left side.  Zoe began to have difficulty walking and climbing up stairs.  Regardless of these effects from the tumor, she was determined to continue on as normal as possible. With this as her outlook, she attended the YMCA camp throughout the summer months.  She was also determined to continue on with school.

School became her outlet and haven.  With the help of the fabulous staff at Live Oaks School, especially Rose Lacobelle,  Nicole Campanaro, Marie DeVitto and, of course, her friends, she thrived at school and with pride, she was able to return to school and enter as a second grader in September. 

In September, Zoe was granted her Make-a-Wish vacation at Walt Disney World in Orlando, Florida.  With a smile from ear to ear, she traveled, with her family (Missy, Scott, sister Jasmine, brother Kenney, and Aunt Patty) next to her, to make one of her final wishes come true.  Zoe dreamed big, sometimes huge, so this would not be her final wish!  Immediately upon her return from Florida, she had to fly back to Memphis for follow up testing.

On September 20, 2010, Zoe, yet again, under went an MRI.  The results brought a smile to everyone’s face: The tumor had shrunk by 70%!  With this news, St. Jude’s made a decision to stop any additional treatments and sent the family home.  Unfortunately, their trial was over and now a miracle was needed.

Zoe’s parents were not about to give up on medical treatments, though. They were determined to find a cure for their little girl.  After being home for a few weeks, Zoe’s double vision and paralysis became difficult to manage.  Missy decided to take Zoe to Hartford’s Children’s Hospital to see if they had alternative options.  While there, the doctors did yet another MRI, which clearly showed tumor growth.  The family’s fears were starting to come to fruition.  With the original diagnosis, they were told to look for certain symptoms that the tumor was growing:  paralysis, headaches, difficulty speaking, difficulty breathing, difficulty swallowing, and loss of daily functions one needs to live.   Hartford Children’s Hospital was unable to assist the family in a search for a cure.  St. Jude’s finally called Missy back and scheduled her to travel back in November, however prior to travel, as per Zoe’s request, the family stayed to celebrate her 7th birthday.

On November 3, 2010, Zoe celebrated her 7th birthday, first at school surrounded by her loving school family and friends she enjoyed her cupcakes and special presents.  Later on that evening, she with friends and family went to Friendly’s, one of her many favorites restaurants, where she loved their chicken noodle soup!  On November 5, 2010, the City of Milford, with the assistance of Mayor Richetelli, declared the day forever Zoe Anyan Day.  The Mayor came to Live Oaks School to present her with a beautiful plaque with the declaration.

On Sunday, November 7, 2010, Zoe once again celebrated her birthday with friends and family at Milford AMF Bowling.  Prior to becoming ill, Zoe was an avid bowler, and while she continued to bowl during her illness, she was unable to have the same energy level. Now, almost completely paralyzed on her left side, making bowling increasingly difficult.  Later the same evening, her church, St. Gabriel’s, held a pasta dinner and raffle benefit in her honor.  After all of the partying was finished, it was once again time to travel back to Memphis for another MRI.

During this visit, the family was informed that the tumor was in fact growing.  They were told that the end of her life was eminent and she would be lucky to survive until Christmas. Well anyone who know Zoe, knew that there was no way she was missing Christmas! While her Christmas list was extensive, she had two items that were imperative:  a puppy dog and a house (the apartment that the family was residing in was not conducive to her needs, as she needed to walk up four flights of exterior stairs to enter in).  A generous family friend helped the family in obtaining her puppy, Penney, her new best friend, while another friend worked on finding the family a house, which eventually was found for the family on December 1, 2010.

With these two wishes granted, there was one big one Missy was determined to grant: The gift of life.  Her mother had granted this wish once before seven years ago and was adamant to do it again.  She called every doctor and every hospital that had ever explored this type of cancer.  Due to the lack of a cure for this tumor, the family called St. Jude’s repeatedly to ask for help. St. Jude’s had placed Zoe on a new chemotherapy, which unfortunately did not help, instead the tumor became more aggressive and began taking over. 

By the time Christmas came, Zoe’s difficulty walking and speaking was becoming unbearable, but that wasn’t going to stop Christmas.  Zoe was able to spend her final Christmas with family in their new house, with her new puppy and all of her new gifts.  She desperately wanted a Barbie Cadillac, which she received from the Milford, who has followed her story from the beginning.  She also received gifts from several other donors, including the Orange Rotary Club, with the assistance of Michael Richetelli & Colonial Properties, an anonymous donor gave the family a flat screen television, and others gave time and money from various fund raisers.  Missy had previously called Boston Children’s Hospital back in November who suggested a new steroid, as the current steroid had made Zoe gain over 30 pounds, which was almost double her weight.  So after Christmas, the journey continued to Boston, where they started the new steroid, which seemed to help, especially with Zoe’s weight and excess body hair. 

January was a month of increased negative symptoms of the tumor. As the month went on she was unable to swallow and eat as she once had, her liquids had to be thickened and Zoe was afraid to eat.  She feared chocking on her food or her liquids, it was heart wrenching to watch as this little girl, who once loved chicken noodle soup, ham, pineapple, olive loaf, salami, cotton candy, cupcakes, and brownies, unable to eat or drink any of them.

Zoe had also been fighting colds and respiratory infections throughout the month.  The only positive for little Zoe was the love of her family, friends and of course school, she wanted to go everyday, even though some days it was not possible.  As a last resort another chemotherapy was tried and seemed to work for her, but, unfortunately it was too late for Zoe. Her body had already succumbed to this horrific tumor.  While the next few weeks flew by for the family, with constant travels to and from Yale and Boston, as Zoe was having difficulty breathing and swallowing, Zoe continued to smile when she could.  When she couldn’t speak any longer she would write her mom notes, of which were things like, “Walks to the hospital cafĂ©,” “take me home,” “bring my puppy Penney to the hospital,” etc. 

On February 16, 2011 at 7:57 p.m. in the loving arms of her mother, our angel, Zoe Elizabeth Anyan received her angel wings.  She never gave up the fight against this tumor, but her body gave up the unbearable fight.  She never stopped living, her body simply stopped breathing. She lived everyday with a smile and perseverance.  Even with her last breaths she fought her body to say, “I love you,” one more time.  Little Zoe took an additional breath to sit up, open her eyes, and smile an “I love you” to her mother. 

While we long for a cure for this cancer, we can all learn a little about love and life from this little girl.  She battled this horrific disease with honor and dignity and never gave up.

In her honor her parents, Scott and Melissa, donated her brain and brain stem to cancer research, hoping to save another child, as Zoe would have wanted.   As she received most of her wishes, there is one that we as her family would like to carry out: That no other child has to go through this and lose their life.  

Zoe's mother will be with us on Sunday, April 10 to tell Zoe's story. Through help from the community, including from references via LIVESTRONG, we were able to bring Zoe home to her parents from the funeral home. Zoe's ashes are now in a ladybug urn with her family.

Zoe knew how to LIVE STRONG. You can see it in her face when you look at the scores of photos taken during her treatment.

Help us continue in her spirit on Sunday. Meet Missy and her family. Hug them. Show them love and strength. They need it. Hug them for Zoe.

If you don't know anyone to ride, run or walk for on Sunday, I'd like to introduce you to Zoe. Do it for her. With the same contagious smile she shared.

Wednesday, April 6, 2011

4 more days until we ROCK the RIDE & RUN for a second year in a row!

Want to find me Sunday morning at, oh, 7am?
I'll be the one looking like this.
Are you getting butterflies yet? I know I am. I sent an email to the folks who will be volunteering and manning tables on Sunday apologizing. You see, I know how I get in the hours preceding a big event that I'm running. So, I apologized in advance for the fact that I may speak in broken sentences, with a faster cadence than Lance used to win his 7 Tours de France, and, well like a chicken with my head cut off.

I'm not quite there yet, but as you can see to the right, I've found my pre-event outfit.

Anyway, the support and generosity we've received in the past few days is ridiculous! Registrations are still flowing in, sponsors are coming up with great swag items, deals and raffle prizes. I'm getting volunteers this year so I won't have to worry. (Of course, I need to get on my bike this week so I don't look like I'm riding like a chicken with my head cut off and make a fool of myself.)

So, do you want me to list some of the prizes to be raffled off? How does a 4-person tent from REI sound? Gift cards from RoadID? Handmade jewelry from COURSE? Lance Armstrong & Team RadioShack memorabilia? A book signed by a Real Housewife? A Mary Kay gift basket...

And speaking of which, in our little LIVESTRONG Village, after the ride and run, participants and passersby alike can get their "before" shots taken by me and other Mary Kay Consultants so they can enter the Mary Kay Makeover Contest, in which the winner gets to give $2,500 of Mary Kay's money to the charity of your choice (LIVESTRONG, LIVESTRONG, LIVESTRONG, LIVESTRONG... how's that for subtlety?)! (Oh, and you can win $2,500 for a vacation for yourself, too.)

Did I mention that it's not supposed to rain? It's not going to be too cold? That there will be an antiques market and farmers market within walking distance? That local businesses are participating by giving special offers to those registered and their friends & families?

Oh, right. And we have three, count 'em, three bands performing!

Shoot. I feel like I'm forgetting something. I've darn near given you the shirt off my back... oh, RIGHT! You get a free t-shirt if you register for the 5k run/walk or 30-mile ride. (Or, you could always order one for yourself, but $25 a shirt vs. $36 registration fee? Your call.)

So, if you aren't registered yet (and you can register to participate virtually if you can't make it in person - just email me after you've registered online and let me know that's what you're doing so I can mail you your swag bag!), GET ON THAT INTERWEB THING AND REGISTER NOW!


Let's ROCK the RIDE & RUN to benefit LIVESTRONG, PEOPLE! Cancer needs a swift kick in the boo-tay. Let's do it LIVESTRONG style!