ISABELLA, 8 (Anchorage, AK) | Acute Lymphoblastic Leukemia
written by her mother, Erika
photographed by Autumn Clarkson Photography
In the fall of 2013, Isabella was a new
Kindergarten student at Rilke Schule. She loved going to school every day, but
she kept getting sick and having to stay home. Her fevers first came every few
weeks and then progressed to every few days. Multiple trips to the hospital
gave no answers. I desperately wanted to know what was wrong and figure out how
I could help my daughter.
Test after test could not identify what
was causing Isabella’s fevers. All of the blood tests came back clean. I
finally elected to have a bone marrow test, which gave us an answer we
desperately needed, but every parent dreads hearing. Isabella was diagnosed
with pre-B cell acute lymphoblastic leukemia on February 21, 2014 and would
need to begin treatment right away.
Because English is not my first
language, I didn’t understand what this diagnosis meant at first. I didn’t know
it was cancer. I thought my daughter was going to die. When they explained it
was cancer, I was heartbroken. How do you tell your six-year-old that she has cancer?
The doctors told me that we needed to
tell her, because she was going to be the one going through all of the
procedures and treatments. And she would need to know why it was happening, and
why they were doing these things to her. I remember walking into her room to
speak with her about it. She was lying in her bed, curled up like a baby. She
asked me “am I going to die, mommy?”
I told her that she wouldn’t die, but
that she had a hard road of treatment ahead of her. And that she would probably
lose her hair.
Isabella is a little princess, and in
our culture, long hair is considered very beautiful. She had always had very
long hair, and I would only cut her bangs. She was “beautiful princess
Isabella, with the long hair and bangs”…everybody knew her that way. All of us
girls had long hair...myself, and her two little sisters. So the idea of losing
her hair was very heartbreaking.
We initially planned to travel to
Portland for Isabella’s treatment, thinking the best care would be found at a
larger hospital outside. But after much deliberation, we decided to have
Isabella’s treatment at Providence’s Cancer Center in Anchorage. We knew that
the love and support Isabella would receive from her family was a crucial part
of her treatment and she just couldn’t get that anywhere outside of Alaska.
Medicine does a lot, but family and friends are a sort of medicine too.
Isabella started her treatment right
away. She had a long journey ahead of her as chemotherapy for children with ALL is a
2.5-year process. A team of doctors, nurses, and child life specialists all
worked together to ensure Isabella was given the best family-centered care possible.
We were very happy that we chose to stay in Alaska for her treatment.
It was so hard to watch her go through
it all. The chemo made her so tired and weak. There were a few times that it
was so hard on her little body, she told me that she would rather die than to
continue going through the treatment. But she was so strong. She went to school
throughout it all. We had a plan in place with her teachers – if she got too
tired or worn out, I would just come pick her up. But she always wanted to give
150% percent. She would sometimes just take a little nap in a chair and then be
ready to get back to work…she rarely wanted to have me bring her home to rest.
She did lose her hair, and it was very
hard for her. All of her friends and family chipped in to try to buy her the
perfect wig. Finding a specific style of wig for a child can get very expensive
– it can be thousands of dollars. But she was a princess, and we wanted her to
have her beautiful hair back. We did finally get a wig for her, but she can’t
wear it all the time because her scalp is so sensitive. She loves the way it
makes her feel to see herself with hair again, but most of the time she wears a
soft beanie. Her hair is starting to grow back in patches, but it is growing!
Isabella responded to treatment very
well, and went into remission during the second month of chemotherapy. Her bone
marrow results in May of 2016 showed that she was cancer-free. Her IV port was
removed in June. She stills visits the Cancer Center once a month to receive
chemotherapy infusions that are very hard on her body, but her spirits are very
high. It’s amazing how children can bounce back. She would be crying and in
pain one minute, then an hour or two later would be up and smiling.
Isabella has told me that she is so
happy that this happened to her and not to her little sisters. Her love for
them and her strength amaze me. She truly is a little warrior. Going through
all of this with her has been so hard for our family, but I don’t think I would
change anything. You never want your child to be sick…I wouldn’t ever wish for
that. But through watching her fight and overcome everything she has at such a
young age, it has showed me the things that are truly important in life. I slow
down and appreciate the blessings in my life now…the things that really matter.
God was definitely by our side; divine beings were holding us up.
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