Showing posts with label Organ Donation. Show all posts
Showing posts with label Organ Donation. Show all posts

Saturday, June 28, 2014

My 400th Blog Post: To The Donut-Loving Hapa Children of The World

Happy Saturday LilyOnTheLam.Com Readers!

I have been putting off writing, because I knew the next thing I posted would be my FOUR HUNDREDTH blog post.  I felt like I couldn't just write my typical travel, cocktails or "why sometimes my work is annoying" story for the 400th post!  I decided to wait to see if something "400-worthy" would happen in my life.

Even though I have fun stories of my recent trip to New York City (Actor John Lithgow was sitting next to me at Kenneth Branagh-Alex Kingston's version of "MacBeth"!  I was in the front row for "Hedwig and the Angry Inch" and Neil Patrick Harris kissed the guy sitting next to me!  I was in the front row for "Of Mice and Men" and I am pretty sure James Franco is now in love with me! [OK maybe not.]) ... and even though I want to compose a sonnet to the "Hot Sauce" cocktail I had last night at "The Avenue Eat/Drink" (Sriracha vodka + jalapeños = So Happy Lily) … were any of these events "400 worthy?"  I didn't really think so …

I had read a quote that a friend posted that said "There's no need to rush.  What's meant for you always arrives right on time."  I decided to wait a little longer.

Then this morning I woke up … regretting that I had worn 5 inch heels to a 4 hour concert the night before (but hey I could see over everyone's heads!  See video from the concert on my YouTube page.)  I puttered around like an old man with a bad attitude while I ate breakfast (brunch?) and watched a "Daily Show" episode I had on my DVR.  Finally I decided to get "productive" and pulled out my laptop to check Twitter and Facebook.  

(Side Note: For 11 months I have successfully and quite happily been off Facebook - due to wanting to avoid time wasting, negativity and overall haters.  However I recently returned in a limited capacity because (1) I need access for my social media volunteering and (2) three friends are having babies and I wanted to keep track of when they give birth.  Instead of my 270+ friend list, I have a much smaller contacts list - please try not to take offense if you're one of the 210+ who I used to have on my FB.  And hey if you are offended, you have a large number of people to form a support group with - so there's the silver lining!  Please send me royalties from the "I Hate Lily" t-shirt sales and save me a piece of the "Lily Is Annoying!" sheet cake.  Thanks and much appreciated!)

OK back to the story at hand - sore feet, not productive, turning to social media … My friends Mr. Hawaii and Mrs. Former Camp Director have two beautiful, young daughters who are 1/2 Asian and 1/2 Caucasian.  They posted a picture of the girls eating donuts.  They looked so cute, the picture could have been a donut ad.  (Get those girls a modeling agent STAT!)

(Side note: I am not just oohing and aaahing over these kids because one happens to be named LILY … a rose by any other name would still smell as sweet ;-)  But hey, chances are if you name your kids Lily, I will probably write in my blog about how smart, beautiful and wonderful they are … think it over.)  

Now as a woman, I've been asked if I am having children for basically the past 300 years.  In fact, some people I know think that I must hate children because I chose not to pop a half dozen from my uterus.  (Some people are stupid.)  

I don't hate kids.  I love them … in limited amounts, where I can buy them toys, cute outfits and sugar-laden snacks and then leave for a cocktail when they start to have a meltdown.    So when I saw this lovely picture of these two beautiful young children eating donuts on a Saturday morning, I did feel a strong stirring inside my soul …  

a strong, 

intense 

desire to … 

have a donut.

But since I don't live in a Dunkin' Donuts, I continued to scroll down my Facebook.  I saw a picture of a handsome young boy in a baseball uniform.  My friend Ms. Syracuse, who is soon to give birth to her first child (who should be named Lily regardless of gender), had shared the picture.  I thought it must be one of her friends' children, but then I read the text with the picture.  

The young boy is named Baylor Fredrickson and he is 1/2 Japanese and 1/2 German.  He is six years old and he has leukemia.  This is not a Facebook/internet hoax, but a real story.  (See the ABC news story here.)

Baylor needs a bone marrow transplant in less than three months.  However he needs a donor who is almost a perfect match, which would almost surely mean a "hapa" (mixed race) donor - in this case, 1/2 Caucasian, 1/2 Asian.  Evidently, only one out of every 70,000 Americans fits this profile.

I am not 1/2 Japanese and 1/2 German.  But I am 1/2 Caucasian and 1/2 Asian (Chinese and Polish).  I thought about my friends' lovely half Asian-half Caucasian daughters who are younger than little Baylor.  I thought about my sister who is 1/2 Chinese, 1/2 Irish.  What if they were in young Baylor's shoes?  Wouldn't I want to encourage every 1/2 Asian, 1/2 Caucasian in the world to register to see if they were a bone marrow donor match?  

Yes! I'd be wanting to pound on every door - ask everyone and anyone who could, to please help.  

If only one in every 70,000 Americans is 1/2 Asian, 1/2 Caucasian, then reduce that pool of hapa people to those who are medically eligible to donate bone marrow and then reduce that pool of people who would be a suitable match genetically to young Baylor … and then reduce that pool to people who have signed up on the bone marrow registry … the odds of finding Baylor a match in less than three months felt mind-blowing.  To counteract these low odds, they need to raise the number of 1/2 Asian, 1/2 Caucasian potential donors who are on the registry.  There are currently over 12,000 patients still searching for their match.

The post on Facebook urged everyone to share the post with anyone they knew who was 1/2 Caucasian and 1/2 Asian and ask them to go to the Asian American donor program to register for a free kit that will be mailed to your home, you take 4 cheek swabs and send them back.  (The link is only for those who live in the United States.  If you live outside of the U.S., you can go to this link.)  There are also frequently asked questions pages that give more information on the process. 

And even if you are 100% Asian, I would encourage you to register as a potential bone marrow donor as there is a lower number of ethnically Asian donors on the U.S. registry.  A classmate's sister's life was saved from a bone marrow transplant from an Asian-American donor.

I just stared at my laptop screen processing the story in my head.  I am "the one" in every 70,000 Americans who is 1/2 Caucasian and 1/2 Asian.  Four little cheek swabs could mean the difference between life and death for a fellow Asian-American - whether child, man or woman.  Knowing that the odds are so against finding the right genetic match under the current limited donor registry, how could I continue to scroll along my Facebook and ignore this opportunity to add one more person to the donor registry - one more potential match for someone who is fighting cancer?  

I Googled "bone marrow transplants" to see how invasive the procedure would be.  I reviewed the steps on how bone marrow is removed in a quick procedure.  For me personally, I found the procedure to be an acceptable task if I were found to be a match.

I had absolutely no excuses why I should NOT register with the Asian-American donor program.    

I went to http://www.aadp.org/homekit/  and reviewed the requirements to register.  I met the medical criteria and requested the cheek swab kit to be mailed to my home.  (I also gave a charitable donation, which is not required but I thought that keeping the registry going helps save lives.  I spend money on cocktails and concert tickets, shouldn't I try to also give some money to organizations that help cancer-stricken individuals in America too?)

My Registry Request Submission Acknowledgement from Be The Match

The Twitter account for the "Be The Match" Bone Marrow Registry is @BeTheMatch.  I was happy to see this Tweet was currently being retweeted: Know someone of Asian and Caucasian heritage? Ask for a cheek swab:

There are several registration drives in various cities as well, find out more about them here. 

I hope that six year old Baylor Fredrickson finds the match he needs, but hope alone is not going to make this happen.  I registered for the bone marrow donor registry because in cases like this, actions NOW mean more than well wishes or sympathy.  This is definitely not the time to put things off tomorrow that you should do today.  

I hope you will urge everyone you know (and yourself) who are medically eligible, to sign up for the bone marrow registry TODAY - and for the case of Baylor, especially reach out to your 1/2 Asian, 1/2 Caucasian friends, neighbors, acquaintances.

Thank you to all the LilyOnTheLam.Com readers, whether this is your first time reading or if you have read all FOUR HUNDRED of my posts.  I hope you will tell the story of the need for bone marrow registrants to every person you know and urge them to tell everyone they know.  For more information on requesting a home kit, please go to this link.

I cannot think of a better topic for my four hundredth blog post- it took me only a few minutes to request the home kit.  It won't take much time to take four cheek swabs at home and mail the kit back in.  But the return for my few minutes of time is so potentially great.  I couldn't turn my back on an opportunity to help.  I am glad I did it and I hope others will too.  

Saturday, April 19, 2014

Since You Are Here … Deepak Chopra, Hello Kitty, Organ Donation and Loving Everyone

Happy Saturday LilyOnTheLam.Com Readers!

I hope you are having a terrific weekend!  If you are in the Tampa Bay area, today and tomorrow (4/19 & 20, 2014) the 39th annual Mainsail Art Festival is being held at Vinoy Park.  Definitely a fun event if you are an art lover … or an outdoor festival lover … or a "just want to hang out by the water" lover.  Basically all your bases are covered here!

Being a social media fiend, every day on Twitter I am bombarded by inspirational messages (and also some non-inspirational ones too.)  I saw this internet meme, laughed and knew I had to include it on LilyOnTheLam.



My readership is small but mighty!  They are composed of friends, family members, friends/family of friends, some of my Twitter followers, people who came across me on a Google search and liked what they saw, Spam robots in the US and various foreign countries who misappropriate my text to drive readership to their sites (HATE YOU- so many cease and desist letters- ARGH!), Lily fans in general, Lily stalkers and a very tiny minority are people who don't wish me well but yet want to know what I am doing at all times.  This teeny minority is the one I thought about when I saw the meme above.

Gratefully I have very few enemies in this life, but there are some people that for various reasons I no longer want to associate with … and I find that these are the ones who endlessly check my Twitter and LilyOnTheLam.  To this very small group, I have to say "Really?  You need to let go and move on.  There are no answers for you here."  

Life is too short to make yourself an emotional martyr, self-flagellating by reading this blog!     

But I doubt these words of "Lily (cough) wisdom" will deter them from continuing to haunt LilyOnTheLam.  So at least click on a few ads; so I can make some money, Haters!  

In the grand scheme of things, it is a public blog - so no matter who you are- read away and increase my pages viewed count!  And thank you for reading!

Meanwhile, I'll be spending time with open-minded people who give me gifts like this …

So Gorgeous and So Filled With Chocolate

And "Since You Are Here …" allow me to climb on my soap box and preach to you all.  I figure that for whatever reason you are here reading my blog today, I might as well throw in a global goodwill message!

I read a moving article about the young recipient of a heart transplant and the family of the woman who donated the heart.  I remember last year, a young woman drove to visit her older sister in college.  She swerved to avoid stopped traffic and hit a tree.  She died and her passenger lived.  Because I am an older sister, when I had heard about the accident I thought about how much anguish, guilt and sorrow I would have if my little sister died on the way to visit me.  Accidents happen and this one was no one's fault, but that does not alleviate a family's suffering.

I was happy to read in the article that the family had donated the young woman's heart and a teenager received the heart - and so far (knock on wood) has not had any organ rejection complications.

I am listed as an organ donor on my drivers' license.  With no offense intended to religions/cultures who are against desecrating a body in any way (including organ donation), I do believe that more people should be listed as organ donors.  

A high school friend's sister had a life saving bone marrow transplant from a live donor.  (More people are needed for the bone marrow registry, if you are interested - check here.)

I understand if people are hesitant to be live donors.  I feel like I live continually under Murphy's Law, so if I donated a kidney I know I would be afraid that my remaining kidney would fail.  I'm crazy and neurotic like that - luckily not everyone thinks like me when it comes to live donations.

But even for Crazy Me, I really have zero excuses about organ donation after death.  Whether there is an afterlife, whether there is reincarnation or whether the end of this life is the end all/be all - I am not going to be needing my organs after I leave this Earth.  (Or at least I hope I won't- I'm willing to take that chance!)

When I die (which hopefully is a long, long, long time from now) - carve me up and take every useable piece of me and save as many people as you can.  Then incinerate the rest of me - ashes to ashes, dust to dust.  

I read an interview with Deepak Chopra in the Tampa Tribune.  The interviewer asked him how he wanted to be remembered after he died.  Deepak Chopra answered: " … We're just a fragrance in the breeze.  What do you remember of your great-grandparents?  We're only good for a generation or two, then we fade into obscurity.  So embrace the moment."

The phrase "we're just a fragrance in the breeze" really stuck with me long after reading the interview.  Life, no matter how long you inhabit this Earth, is relatively short.  I cannot think of a more meaningful way to seize some semblance of immortality then by extending the life of another through organ donation.  

If you are not an organ donor, I would ask you to consider it.  Like the Butterfly effect (check out my post on it!), our words and actions can carry on a life of their own for decades or even longer.  

I don't know if at the end of my days I will have made any worthwhile contribution to humanity/society, but if even one of my organs could give a person more time on this Earth - that alone is a pretty amazing accomplishment.  (In my humble opinion.)

Think it over.

Be well.  Be happy.  Be at peace with your world.  This is what I strive for every day and I hope it is something you achieve with bountiful success.

Thanks again for reading!