Two weeks ago I lost my best friend, my mentor, my
confidant, my inspiration…I lost my Mommy.
Around Christmas, Mom started to not feel well. We discovered she had some kind of blood
disorder but the doctors couldn’t figure out what. Dad took mom’s health into his own hands and
began calling specialists around the country.
My mom’s mother died of leukemia when my mom was 12, so this peaked NIH’s
interest in Maryland. Mom and Dad flew
to Maryland the week of Valentine’s day
to meet with the renowned hematologist, Dr. Young. Dr. Young concluded mom had an incredibly
rare cross-over disease, which is two different blood and bone marrow diseases,
but would need more tests to determine specifically what they were. We then got in touch with the amazing Dr.
O’Connell here at USC Norris Cancer Center.
I can’t even begin to tell you how smart and kind Dr. O was…she was
available via email/text/phone, night and day.
She was great. After three months
of tests and platelet transfusions, we discovered what Mom’s rare cross-over
disease was…she was diagnosed on March 9th with Myelodysplatic
Syndrome (MDS-an incredibly rare kind of blood cancer affecting 0.003% of the
country) and Myeloprolific Syndrome (MPS-a form of bone marrow cancer). Despite the incredible rarity of each disease,
let alone the combo, Dr. O had seen this before and had treated it. We developed a plan…Mom would start a kind of
chemo, called Dacogen, for the next 4-6 months (daily treatments for one week
each month), followed by a bone marrow transplant. It was going to be a tough, nail-biting road,
but we were going to get through this.
Because of MDS, Mom’s blood platelets had been dangerously low,
something we discovered in February at NIH.
Mom started weekly platelet transfusions, and after a few, we had to go
to twice-weekly because the platelets were unusually not sticking. Turns out mom had strong antibodies and her
body started rejecting the transfusions sooner than usual (usually one can have
20 or so transfusions before the body rejects…Mom had 6).
On March 10, the day after her official diagnosis, Mom
wasn’t feeling well and Dad took her to the hospital for another
transfusion. She was admitted to be
safe. Dad stayed the night with her and
on Sunday my husband, my brother and I came and spent all day with her. We talked, we laughed, we watched the Lakers
game, we talked a little about our Europe 2013 trip. Mom was going to kick this thing’s ass…she
was determined, and if you know Mom, you know how strong she was. Dad stayed with her again Sunday night, and I
came first thing Monday. My aunt and
cousin came by to say hi and again we laughed and had a good time. I told Dad I’d stay with Mom Monday night
because he needed sleep desperately. So
Dad left late afternoon to get some rest.
Despite her very low platelets, Mom had her first Dacogen treatment
Monday night and that went well. My bro
left around 11pm and I stayed with mom.
Around midnight, she woke up and her headache wasn’t going away. After her pain meds weren’t helping, I
ordered a CT. At 2am we got the CT
results, I called Dad and Sam (my younger bro) who came, and we moved Mom to
ICU. She was stable, totally coherent,
but in pain from her headache. We
finally managed the pain, and she was able to sleep. By 8am, the whole extended family was in the
waiting room. My big brother was
supposed to fly out from his home in TN that evening, but we immediately got
him on the next flight out. He was due
to arrive around 4pm, which we thought would be plenty of time for him to see
Mom if things worsened. Around noon, her
breathing slowed along with her heart rate.
Dad, my younger bro and I, held her hands, and told her how much we
loved her. Not that this was unusual for
us…we always told each other how much we loved one another every single day,
and that is so important. In that
moment, Mom became our Angel.
I can’t even begin to explain how I’m feeling. I’m devastated and heartbroken; I’m angry
that my mom, the most selfless, giving, warm-hearted, loving woman, was taken
at such a young age; I’m beyond sad, and just when I think I’m all dried up and
can’t cry anymore, more tears come. I’m
numb and in shock. I’m also grateful
that she got to see her three children grow up and graduate from school, two
get married, one have grandchildren, and yet there was so much more for her to
be a part of. I am beyond blessed she
was there every step of my way planning my dream wedding with me…that was a
very important moment for both of us (her because she never had that with her
own mom). I ask mom every day for
strength, mostly strength for my Dad. My
mom and dad would have celebrated 40 years together this spring…they are
56…they met when they were 16 years old and that was it for them. Every day is a roller coaster, and every day
will be different. But one thing is for
sure, there is a void in my heart that will never go away. My mom was my best friend. Not a day went by that I didn’t talk to her
or see her. Life is going to be very
different.
I can’t even begin to thank all our family, friends, the
community, for all your love and support you’ve shown me and my family during
this dark and difficult time.
Mom, I love you forever and always. You were the best mom a daughter could ask for <3
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| Me and Mom at my bridal shower September 2011 |
