Our journey battling leukemia and the road to recovery.....

To say that my life has been an emotional roller-coaster this past year, would be an understatement.  I actually wish that I could somehow hit reset, and this year would start anew.  Another part of me just wants this year to be over, and for 2009 to begin.  Can I just forget that 2008 ever existed?

On December 14, 2007, my Mother received the grim diagnosis that she had Leukemia.  Just typing THAT word makes my skin crawl.  I heard the word L-E-U-K-E-M-I-A, and I immediately thought this was sure death sentence.  Then I heard the words chemotherapy and bone marrow biopsy, and I just about collapsed.  Could this really be happening to our family?  Could someone please get me out of this nightmare?

Mom was immediately admitted to Stanford Hospital, Unit F1 and induction chemo began the next day.  They told us that she was battling AML Leukemia and would need to "get her into remission" before anything else could be done (meaning, that she could walk out of the hospital and not die within a few days).  AML Leukemia (subtype M0) is a tough form of cancer to survive.  Many people just don't make it....   My heart sank.

Sixty days of PURE HELL followed.  Would Mom ever get into remission?  Would I be losing my Mother at such a young age?  Would my daughter's lose Grandma?  Would my family simply fall apart?  Would I fall apart?

My panic attacks started.....

I somehow avoided taking medication, and on the surface held it together for my children and Mom. The doctors wanted me to take antidepressants, but I refused.  To this day, I am not really sure why I rejected their offer; maybe I just wanted to allow my body to feel sad.  Maybe I am too darn stubborn or lazy or just wanted to live in denial... But I was an emotional wreck.  My family was crumbling, and all I could was visit Mom each and every day at Stanford Hospital (Thank God I live two miles away from Stanford!).  I kept a fake smile on my face.  I would walk the halls with Mom, while toxic chemotherapy battled the leukemic cells.  Then I would leave for the afternoon and fall apart.  Other families who were battling the same diagnosis with their loved ones were there to support me.  The nurses (oh, the fabulous nurses of Unit F1, who must have been Saints in their prior lives) were also there to help us hold it together. Even just a hug or a pat on the back reminded me that I was not so alone.   

I still remember the smell and feel of Unit F1.  I would park my car at the hospital lot, walk past the beautiful flowers, pass the cafeteria, walk down a flight of stairs into an atrium, and then stroll through a corridor that took me to my moms private room. At the time, there was a very large and beautiful Christmas Tree that would take up the entire section of the room. I would put on a mask, slab purell on my hands, and put on that cheerleader smile.  "Mom, you are going to make it.  Mom, you will be ok.  You are a fighter.  Be patient, remission will happen.  It just takes time...." I don't know if I really believed my words, but there was nothing else I could.  I couldn't make the situation better.  I couldn't cure the leukemic blasts. After my daily cheer, I would march around and find any doctor who would speak to me.  (I think they all decided to run far away when they saw me come through the corridor - ah, Jill is back to pester us!) I didn't want them to sugar coat this situation.  I was tired of the bullshit.  I wanted to someone to tell me what we (SHE) had to do to get into remission.  The conversations were always the same.  They just didn't know.... she needed time for the meds and chemo to work (or not).  The odds were not in her favor, but there was hope. I felt deflated, but never showed Mom my fear.

I watched Mom lose her hair from the chemotherapy.  I told her she was still beautiful.  Her hair would grow back.  I watched her become very weak and tired from the chemo.  I watched her fall apart and cry and pray that she would survive.  The New Year came, and we all tried to put on a smile, but we were all hurting and scared.  Friends rallied around us (yes, you need friends during a time of crisis) and delivered meals to our home.  We hoped that dinner could be the one time of the day to be "normal".  But what is normal, when your family is battling leukemia? Would we ever know "normal" again?

Somehow, a miracle happened.  After almost sixty days of hospitalization, we got the news.... mom had a clean marrow.  There were no leukemic blasts in her body. Her marrow was clear.  The induction chemotherapy was working, it just took time....

We were all in shock.  Up until that day, the news was always inconclusive and vague.  We saw other families lose their loved ones while waiting.  We saw other patients leave the hosptital in remission. Our hope was really, really low....But on this February 2008 day, the news was uplifting and hopeful.  We cried and cheered and hugged and celebrated.  Could this be the potential road to recovery?

In March, Mom returned to Stanford and went through a few weeks of Consolidation Chemotherapy. 

Then began the search for an unrelated marrow donor.  Unfortunately, my Uncle was not a match....I know, when you hear the word, BONE MARROW, you probably squirm.  I certainly did.... but we were told that the only hope for a LONG TERM CURE (OMG, they said the word CURE!!!), was to have a marrow transplant.  But first, a match needed to be found.  The Stanford University Transplant Team told us that finding a match was tough, but because of her genetic background, the odds were in her favor.  (Finally, something in HER FAVOR!)

We waited a few weeks on pins and needles. (Please God, find a match.  Let there be someone walking around this earth, who has signed up in the National Marrow Registry.  Please let this person be found.  Please let this person be willing to become a marrow donor, and save my mothers life.  Please let this person exist).

In early April, we received the news.  There were MANY potential matches. 222 to be exact.  We were told that this could be an all time record!  GO MOM!!! A few weeks later, a PERFECT match was confirmed.  WE cried, and cheered, and felt a moment of relief.  This was really going to happen.  Mom was going to have a transplant. 

We knew the risks.  Some people die during the transplant.  Many get graft vs. host disease.  Many are so sick and weak, that they just want to die.  But even with the scary stats and stories, Mom wanted to move forward.  She wanted the chance to have her life back.  She wanted to resume work some day, take her granddaughters to ballet, watch her son marry and have a family of his own, spend time with her family and friends, remodel her new (OLD) home.... and just LIVE.

In May 2008, my stepfather and I watched as the donor cells entered her body through an I.V. It is hard for me to put down in words this experience because it was so surreal. Due to all the immuno-suppressants, Mom was pretty weak.  But over the course of an hour, the hope for a new life and the road to recovery began.  Slowly, the healthy cells entered her body, and we now needed to wait....

The next hundred days were tough.  Mom was completely weak and her desire to eat diminished.  We were happy when she would take a few bites of chocolate soy ice cream.  We would cheer when she had a sip of soup.  There were moments when I looked at mom, and thought that death would be better than this.  But the fighting never stopped..... there was too much to lose.  Life was still a possibility.

To keep some privacy about these 100 days, I will skip the gory details.  Let's just say, it was pretty darn tough.

120 days post transplant, I am here to say that Mom is doing VERY WELL.  Her strength, taste, and ambition to live has come back. In a few weeks, she will be opening back her private practice.  She can now go shopping and walk outside without wearing a Darth Vadar mask.  She can eat anything she wants.  She takes my daughters to ballet and has us over for dinner A LOT! (Thanks Mom!!) She IS living.... and living without signs of leukemia, host vs. graft disease, or the fear that she won't be around for a VERY LONG time.

The doctor's have dangled around the word, "Cure".  I don't know why I am afraid to say that word.  Maybe I am scared that I will jinx this outcome.  So instead, I say... I am optimistically hopeful. 

Why do I share such a personal story?  Because next week, my family will be walking in HONOR (NOT IN MEMORY) of my mother at a Light The Night Walk at Stanford.  I hate to ask for money (seriously, I hate doing this...)... but if our story has touched you, I would love to ask for a donation that would go towards our family and blog team.  The money raised will go the Leukemia and Lymphoma Society.  Just to make this crystal clear, my mother would not be here today if it was not for the research done because of this organization.

Won't you join our team... or make a donation?

I would also like to make another plea. (since you have read this far, what is a little more?)  If you ever hear about a Marrow Drive in your area, PLEASE consider signing up to be a potential donor.  And if you are person of color or mixed ethnic race, you should REALLY, REALLY, REALLY consider being a donor.  My mother is Caucasian of Eastern European descent.  This group has a large pool... almost every other group is in dire need of donors, especially African American, Latino, Asian, South Pacific Islander, American Indian and Indian.  It is so simple to become part of the registry - they simply take a swab of saliva.

We were told that one year after transplant, we will be able to meet "our" donor.  We have named him "Jack".  All we know is that "Jack" is twenty five years old and lives somewhere in the United States.  We hope to meet "Jack" in May 2009... and thank and hug him for saving Moms life.  "Jack" is our hero.....

Here is a link to our team page:  http://register.lightthenight.org/LTNRegistration/app?page=TeamView&service=page&urlKey=SVMomsGroup

Again, thank you for reading this very long post....

The Light The Night Walk is The Leukemia & Lymphoma Society's nationwide walk to raise awareness and funds to cure leukemia, lymphoma and myeloma, and improve the quality of life of patients and their families.

We're participating in the walk in honor of all individuals who are battling blood cancer. These people are the real heroes, and we need your support to help accelerate cures and give hope to patients and their families. Although research is responsible for increasing survival rates for these diseases, the battle is far from over. Did you know that:

• Every five minutes, someone in this country is diagnosed with blood cancer: Every ten minutes, someone loses the fight.
• Leukemia causes more deaths than any other cancer among children.
• Lymphomas are the most common blood cancers.
• The myeloma survival rate is only 32 percent.

Jill Asher is the Co-Founder of Silicon Valley Moms Blog.