Finding Her Voice - My Daughter's Cancer Journey

October 6, 2015 will be a day that will always be remembered in the Gaines' household. On this day, my daughter's (Olivia Gaines) life path drastically changed.  Though she wasn't diagnosed with Acute Myeloid Leukemia (A.M.L) on this day, she was rushed to the hospital via an ambulance from an urgent care facility that was less than 800 yards from the emergency room door. She was immediately given multiple transfusions of Red Blood Cells & Platelets and would not leave her hospital bedroom until December 6. Olivia is now home, but sometime next week she will be admitted to the City of Hope for additional Chemotherapy treatment (Salvage Therapy) or be chosen for a Phase 3 Clinical Trial. PRAYERS, ATTITUDE & HOPE!

On December 11, 2015 I shared the following message via e-mail.

If you're receiving this e-mail from me it means you're on my primary e-mail list. I've decided to share my daughter's diagnosis of Acute Myeloid Leukemia (A.M.L.) because Olivia publicly announced it on her Facebook site on Wednesday. Olivia penned two messages in announcing her Leukemia:

Facebook Post:

Let’s cut to the chase- I have cancer, and it’s not something you wake up ready to share...especially in the facebook realm of rants, selfies, and cat videos.

But there, I said it. I’m dying---to tell you that it’s ok because today I’m awake and have a plan. You can learn more about it at www.livfor.life and allow me to continue the music, words, and videos that are like medicine for the mind and gifts to the spirit right here at Olivialive!

When I woke up with a sore neck near a mountain in August, I never would have guessed my climb would also include potentially surviving a life-threatening disease. And so far, I’ve caught glimpses of the view, but I have a ways to go if I am to see the zenith expression of a life well lived.

When I first arrived at Urgent Care, the doctors said I shouldn't be breathing. And so from October 6th to December 6th, I lived in a hospital and blew a kiss to every security camera I could find. I only wonder where my body’s security department went when my white blood cells started going WILD.

Because it’s leukemia.

I’ve learned a lot can happen in 48 hours, the most profound can show up in seconds, and if you’re not paying attention the joy and tragedy of it all...years.

So this is the creed and motivation to hit publish: “The purpose of life is not to be happy. It is to be useful, to be honorable, to be compassionate, to have it make some difference that you have lived and lived well.” -Ralph Waldo Emerson

Because even when cancer calls, life must go on. The only difference is in how you choose to live it.

Enjoy the next cat video for me. I'll be seeing you in your newsfeed soon.

-Liv

Click to Link to Blog Post - "And Then They Told Me I Had Cancer" 

An excerpt from Olivia's blog post - 

Everyone wakes up with pain. By this truth everyone should also wake up inspired to restore love back into his or her life and their community – perhaps even the world.

At the heart of the matter, this is about choices to create a pulse your life can breathe to. These days my choices run blood deep as I wouldn’t be here without the gift of donors, those who volunteer their own blood to save a somebody – a stranger like me.

Turns out the power of saving a life, saves lives. All I can think about is how to pass the gift forward. And ultimately, this site and my life is a response. I want the chain of gratitude to continue and unite so that the confidence of human kindness courses through, removing any clots that prevent love from restoring order to our lives.

As a testament, the livfor.life community has set up three opportunities for you to act on a gift of your choosing just in time for the holiday season.

There’s more to come and more to be…

And so, with a breath and a kiss- welcome to my gratitude, my story, and hope for humanity.

-Liv

Trailer - Cancer: The Emperor of All Maladies

I recently watched (can be watched on Netflix, Youtube, & PBS' site) Ken Burn's 3-part Documentary, "The Emperor of All Maladies" - 

"Cancer is a worldwide scourge. The fastest growing disease on earth. By 2030 there will be as many as 22 million cases worldwide. Cancer afflicts 1.7 million Americans each year and kills 600,000 of them. More will die from cancer over the next 2 years than died in combat in all the wars the United States has ever fought - combined. 1 in 2 American men and 1 in 3 American women will be diagnosed with cancer in their lifetimes and nearly everyone will be close to someone who suffers from it."

The above passage from "The Emperor of All Maladies" doesn't need an introduction - it speaks for itself. 

Many people have asked what they can do to support Olivia:

#1 - Pray - "Believe in the power of prayer. If not for yourself, believe in it for others. The world is weak, prayer is powerful, and God can do anything."

#2 - Give Blood - It's something I've done all of my adult life, but I've usually done it at my convenience. If we're eligible to give blood, we can do it every two months. "Did you know that only about 3% of the people who are eligible to donate blood in Southern California actually do it? But at some time in life, nearly half of us will need a blood transfusion. In fact, someone needs blood every 2 seconds. Each blood donation can save up to two lives: Not a bad return for an investment of one hour of your time! Blood is a unique gift that cannot be manufactured and lasts for only 35 days." The preceding passage was from a letter I received from Huntington Hospital in Pasadena, CA after I gave blood in October. Olivia was in the hospital for 60 + days and needed multiple transfusions of RBC's (Red Blood Cells) or Platelets to give her a chance to survive her blood cancer. One can give blood at the American Red Cross or a local hospital.

#3 - Join the National Bone Marrow Registry through Be The Match.  Click the links provided to find out more about joining the National Bone Marrow Registry. Though it says one has to be between the ages of 18-44 to join the registry, I joined three years ago in my mid 50's. If you're over 44, don't be deterred. Call & insist they send you the materials to register.  They will take you off the registry after you turn 60. http://livfor.life/bone-marrow-registry/

I'm linking an article from BlackBoneMarrow.Com, "Why Race Matters, or better yet ethnicity matters when it comes to finding a matching donor.  Searching patients are most likely to find the best match within their own race or ethnicity.  By increasing the diversity of the Be The Match Registry(SM) we can have a positive impact on these figures so that more patients are able to find matching donors."

Black Americans of African Descent are under-represented in the National Bone Marrow Registry - http://blackbonemarrow.com/why-race-matters/

If you want to know what it's like to donate bone marrow, read Kristine Sydney's account.

#4 - Buy a SLAP cap. Olivia loves her SLAPS (Satin - Lined Caps)  - For every two purchased, one is shelved for a person living in a struggle of uncertainty.  LIV | Buy SLAPS. LIVe to GIVe.

				LIV | Buy SLAPS. LIVe to GIVe. For the ones who leave the barber and beauty shop with no protection…but want to (break)dance in the rain.
				View on livfor.life	Preview by Yahoo

Grace Eleyae, owner of SLAPS, wrote a wonderful blog about Olivia - Liv-ing Above Leukemia

#5 - Donate to the charity of your choice on behalf of a loved one who has been afflicted with Cancer. I know you know somebody.

Olivia's Current Status: Olivia was released from the hospital on December 6, 2015 after a 60+ day stay. She's in partial remission, meaning the cancer partly responded to treatment, but still did not go away.  Olivia will either resume Salvage chemotherapy therapy next week (week of 1/3/16) at a more specialized cancer hospital, The City of Hope, Duarte, California or be chosen to be part of a Phase 3 Clinical Trial. She will eventually need a bone marrow transplant. Hopefully, her brother, Garrett, can Be The Match!

2/11/16 UPDATE - Olivia was chosen for the Clinical trial. The trial is going well - She took the medication throughout the month of January. After her last bone marrow biopsy the results showed no leukemia in the marrow, which is a positive sign/trend, but her cancer is not in remission.  In February they decided to double the dosage of the clinical trial drug to help get her system ready to receive the bone marrow transplant that is scheduled for late March or early April. Garrett, her brother, was not a match. There is one bone marrow donor candidate who was found through the National Registry who is almost a perfect match {9/10 on HLA Scale}. Hopefully, this donor will "Be The Match" for Olivia & he will consent to donating his bone marrow. If this donor candidate does not work out, I will be the donor. As her father, I'm a 50% match.

You might find the article (Is it Possible to Control Cancer without Killing It) {Click on the highlighted link} interesting - It's a 2014 article from The New Yorker that highlights a drug that is/was the focus of a clinical trial. The article does a good job of highlighting Olivia's type of blood cancer, acute myelogenous leukemia (A.M.L.).

Prayers, Attitude & Hope,

Clarence Gaines

I heard from many people after I sent the above e-mail. Some wanted to know if we had any preferred charities. Olivia & I created the following list.

(1) Zen Hospice Project - Olivia became aware of the Zen Hospice Project after watching BJ Miller's powerful Ted Talks - What Really Matters at the End of Life

(2)  Kenya - Living Room Ministries International- This charity has very little to do with solving Cancer but has everything to do with providing a space in Kenya for people afflicted with HIV/Aids to die/be healed with dignity.  The church I attend in Los Angeles sponsors this organization and I've had the pleasure for several years of listening to Juli McGowan Boit talk about her ministry. Olivia heard Juli talk two years ago and was obviously impacted by what Juli is doing with her life.  Juli is a trained nurse and attended Azusa Pacific University in California. A lot of Olivia's nurses at Huntington Hospital attended Azusa Pacific. If you click on the link you'll be able to watch/listen to Juli's Thanksgiving message,  "Doorstep of Praise."

(3) LIVESTRONG Foundation - Olivia has selected this charitable organization because they help women who are in need with fertility issues that are a by-product of Cancer treatment. Olivia has already seen a fertility doctor - Click the highlighted link to find out more about LIVESTRONG Fertility for Women 

(4) The Leukemia & Lymphoma society is the charity that is focused on Olivia's type of cancer. 

(5) "Be The Match" - This is the Bone Marrow registry organization that I mentioned in my letter. My intent was to get people to join the National Registry to become a donor if a patient needs a bone marrow transplant, which Olivia will need. One can also give financially. Click on the link to their giving site and learn how financial gifts help - Be The Match.

(6) City of Hope - Olivia's next Hospital visit will be to the "City of Hope," which is a Comprehensive Cancer Hospital in California - City of Hope's most important contribution in medicine was developing "synthetic human insulin" which has impacted millions of people over the years who suffer from diabetes.