I am a
mother to a smart, funny, creative, beautiful, silly girl who is always full of
smiles, laughter and happiness. She is phenomenal. She can brighten anyone's
day with her infectious grin and those pretty gray eyes. She loves to play
outside and drive her jeep around the yard. She loves to paint and color;
anything crafty. She loves to be 'videoed' (so she calls it) and photographed.
She loves playing chase. Playing chase has probably always been one of her most
favorite things to do. She just giggles and runs until, eventually, she's told
to take a break. She’s constantly ‘on the go.’ She loves Chick-Fil-A (nuggets
AND ice cream), McDonald’s Happy Meals and pizza- but only if it’s delivered. She
loves to read stories and have imaginary stories told to her. She loves to play
dolls, kitchen and play pretend. Her name is Lexi Chase Lee. She is my pride
and joy and my greatest accomplishment. She is MY HERO!
Lexi was born on June 28, 2010 at 7 lbs 11 oz and
20 inches long with a head FULL of dark blonde hair with a cowlick in the
front. We called it her ‘swirl.’ I always wanted a baby with a head full of
hair. And that’s what I got. It was love at first sight. Lexi’s Dad and I were
so in love and so thankful that Lexi was healthy. She was a healthy baby who
grew to be a very fat baby. I always wanted a fat baby with chunky rolls and
that’s exactly what Lexi was. Lexi’s monthly check-ups with her Pediatrician
were always great. Her doctor was always very pleased with Lexi’s growth, intelligence
and overall health. But, that changed all too soon on September 23, 2013.
Actually, things were already changing in Lexi’s
body, but no one knew it yet. Lexi started developing odd bruising. The bruises
were prominently on the fronts of her legs, but they covered her entire body. We
watched her to make sure she wasn’t falling down or running into things or
anything else a typical 3 year old may do to cause a bruise. While ‘watching’
her bruising, I began to notice that none of the bruising had gone away, nor
were they showing any signs of healing. Instead, the bruises were multiplying. Within
approximately 1 ½ to 2 weeks, Lexi had 20 to 30 unexplainable, some darker in
color, some lighter in color, thumb print size bruises all over her body. After
noticing the excessive amount of bruising, with no explanation and no signs of
going away, an appointment with her local Pediatrician was scheduled. I knew
that bruising had something to do with blood and platelets, but that was
literally all I knew. I didn’t even Google anything because I ‘just knew’ Lexi
was fine.
So, the next Monday morning I took Lexi to her
doctor’s appointment. After explaining my concern about Lexi’s bruising and the
doctor examining her, she looked at Lexi and said, “She is a country girl,
always playing outside and running around, so let’s just hope that’s the case, but
I want to send her for blood work just to be safe.” That’s really all I
remember of the appointment, other than the usual “she’s so cute and so smart.”
So, we left the Pediatrician’s office and went to the local hospital and had
blood work done.
Afterwards, we went home and Lexi played outside
all afternoon with her cousin Ryder. I remember watching them playing and
thinking to myself, ‘There’s no way there’s anything wrong with her. She’s
running, climbing and playing like a normal 3 year old.’ Then, about four hours
later while Lexi was playing outside on the swing set, the phone rang. Lexi’s
blood work came back abnormal and we were told to take her to Huntsville
Hospital as a ‘direct admit.’ Fear and confusion set in. I had a really bad
feeling in the gut of my stomach, but I still did not want to let myself believe
there may be something negative happening with Lexi’s health.
Just a few hours after having been playing
outside with her ‘best friend Ry,’ she was inpatient at Huntsville Hospital
being poked for more blood work. Later that evening we got news that Lexi may
possibly have a blood disorder or Leukemia. Actually, the Oncologist, Dr. Cox
said, “If I was a betting woman, I’d put all my money on Leukemia.” She then
said that they were waiting on another Hematologist to look at Lexi’s blood to
rule out or confirm Leukemia. That particular doctor would not be there until
the next day, so, we were left with that news to try and digest. To this day, I
don’t know if that was the doctors’ way of preparing us for the truth instead
of throwing it at us all at once or if another Hematologist actually did have
to examine the blood as well.
Even just
hearing the fact that Lexi ‘might’ have Leukemia was very hard to accept. It
was the last thing we thought we would be told. She had always been so healthy,
so we tried to stay positive, even though I think we all knew the truth deep
down inside. But, of course, no one wanted to admit it. We faithfully prayed
and put all of our trust in God. We all had a hard time being left with the
knowledge that my baby might have Leukemia. All I wanted was an answer. I did
not want to wait for an answer. I didn’t have to wait very long.
On the afternoon of September 24, 2013, the Oncologist
came into Lexi’s room and told us the confirmed unfortunate news. Our beautiful
daughter who we had bragged on since birth for being so healthy and never
getting sick had the c word. She has cancer. She has Acute Lymphoblastic
Leukemia, commonly known as ALL, or just simply, Leukemia. That was the day our
lives changed forever. We did not know what to do other than pray. We were
taken into a family counseling room where the doctors at Huntsville Hospital gave
us some information on the diagnosis and gave us options as to where to receive
treatment for Lexi. When St. Jude Children's Research Hospital was mentioned,
we knew that was where we wanted Lexi to be. I have no specific reason for
choosing St. Jude other than having seen their commercials and knowing that
they are responsible for doing the research and finding the medicines that
work. I knew St. Jude was working to find the cure. We knew there was no better
place for Lexi to receive treatment. No family ever pays for anything at St.
Jude. No family ever gets a bill. St. Jude offers housing for long-term stay, a
meal card, a Kroger gift card, they pay mileage. St. Jude not only works to
find cures, but they take special care of the patients and families that come
in and out of their doors. Without St. Jude and its research, my daughter may
not be here today. Because of St. Jude and its research, my daughter, as well
as many other children, is getting a second chance at life. For that, I am so
very thankful.
So, that night Lexi was loaded into an ambulance
and sent to St. Jude Children’s Research Hospital in Memphis, TN. I was allowed
to ride with her up front but I could not see her (because of the way the
ambulance is arranged). Lexi’s Dad and grandparents followed behind. Lexi was
very good for the ride to Memphis. She watched movies with a couple nurses in
the back of the ambulance.
At that moment I began to get very angry and very
confused. I don’t know why the anger set in all of a sudden at that point…
Maybe the ambulance ride is what confirmed that everything was real. No bad
dreams, but really, really, bad reality.
I want my blog to be as honest as it can be so I
want to honestly say that I don’t remember much from the minute we got to St.
Jude until approximately two weeks after. I wanted to numb myself from what I
was feeling. And that is what I did. I did not pay attention when doctors or
nurses would come into Lexi’s room because it made it all too real. What a
crappy excuse, right? I know… I am so embarrassed and regretful. I wanted to
take the diagnosis away from Lexi and put it on myself. Mommies are supposed to
be able to fix anything and everything and I had a very hard time accepting
that this is something I am not in control of and that I cannot fix. I kept
praying for a phone call… someone to tell me that Lexi was fine… that her blood
work was read incorrectly, the doctors were wrong and Lexi was healthy and okay
and we could go back home to normal life. But, obviously, I never got that
call. And realistically speaking, I knew that call would never come. After
speaking with our social worker, he helped me realize that I could not take
care of Lexi if I do not take care of myself. Things changed after that. It was
eye opening and embarrassing all at the same time. I have no excuse for the way
I handled things… the things I did, the things I said, the way I spoke to and
treated others….even my family who only wants to love, support and be there for
me. I’m so thankful that they were able to overlook my outbursts and still love
and support me anyway. I am not excusing my actions, but I will say that you don’t
know what you will do or how you will handle things until you are put in my
situation. My child has a 3% chance of not beating this disease. Even though
the survival rate is 97% --there is still that 3%. That scares me. It gives me
panic attacks. It makes me mad with rage and it makes me question God – why my baby?? – Sometimes it
even makes me angry with God. I ask forgiveness for my anger toward Him and try
to focus my anger on the fact that He has a plan. Even though I may not
understand it, He does. God has a plan for Lexi and her life and I trust that
His will be done. His plan for her is far more than I can ever imagine.
There is no way that I will ever be able to say “thank
you” enough to St. Jude and it’s researchers and staff for taking care of my
daughter. I know she is in the best hands. God’s hands and St. Jude hands.
There is a painting at St. Jude that was created by a patient and it says, “St.
Jude is Protected by God’s Amazing Grace.” Every time I see that painting, I
feel a tingling in my heart and a weight lifting off my shoulders. I feel an
extreme assurance that Lexi is going to beat this.
I have wanted to start ‘blogging’ since September
(2013), but I did not feel ‘ready’ until now. I had no idea where to start or
what to write. However, now I am ready. I am ready to write and share Lexi’s story.
Depression is a battle I deal with within myself everyday and I think my love
for writing (and newfound love for blogging….I’m still learning so don’t judge.
;) will be the perfect outlet for my emotions as well as for chronicling and
sharing Lexi’s journey. I think blogging will be a great way for me to express
my feelings, share Lexi’s milestones and accomplishments, along with her not so
good days too. I regret not starting a journal or a blog on the day of Lexi’s
diagnosis, but there was so much information being thrown at me, and to be
completely honest, my mind was not there. Literally. A friend from Facebook
inspired me to start writing now because it’s never too late. Thank you, Ariel.
Now that things have become more normal (not ‘normal’ but ‘normal’ for us) and
we are on a routine and have had time to digest and accept and learn about the
diagnosis and prognosis, I am now ready to write and I am ready to share Lexi’s
story…and my story too…..the story and the life and the struggle. I don’t like
to admit the struggle… but it is true. I struggle every day… emotionally,
physically, mentally. I am not asking for pity or trying to make this about
myself… I am simply stating the truth.
Please forgive me if my blog posts are jumbled or
if one post is about today and the next about months ago… I am going to write
and blog as my thoughts are triggered. I want to share all of Lexi’s story so
that means there will be some ‘going back and forth.’
Ultimately, my goal in publishing my blog, ‘Life
With Leukemia’ is to share my daughter’s special story, to share the good days
and the bad (even though, I PROMISE there are WAY MORE good days than bad days-
thank GOD!), to inspire others, to raise awareness for childhood cancer and to
raise awareness for the need of funding for childhood cancer research. My
prayer is that Lexi’s story and her journey will change lives. I also pray that
Lexi grows old one day and I am able to pass this blog to her so that she can
read and understand exactly what she went through at such a young age. My worry
is that she is beginning to form memories and I do not want her childhood
memories to be of hospitals, ‘sleepy rooms,’ medicine, chemo…. And everything
else that my baby girl has to endure in order to beat this monster. Please add
Lexi to your prayers as we still have a long 2 ½ years of treatment ahead of us
and it’s not over after those 2 ½ years… there will be worry for the rest of
Lexi’s life.
Below is a photo of Lexi in October 2013 (on the left) shortly after diagnosis and another is several weeks later once she lost her hair. Still so gorgeous!
I will add more before and after photos at a later date.
<3
