|Diagnosed: February 19, 2005 Age:
Acute Lymphoblastic Leukemia - Pre B
Treatments were continuous until: May 12, 2007
Things you should know: Katie has lots of
physical challenges (see her story) but she
works hard every day to help others.
|One child lost is too many,
One child saved...
Can change the World.
When our daughter Katie Rose was 8 years old, she got very sick with
Pneumonia. For almost 2 months, we went back and forth to the doctor before
we got the diagnosis of Acute Lymphocytic Leukemia Pre B on February 19th,
2005. We were shocked with a cancer diagnoses.
We would of lost our daughter, Katie Rose, if I hadn’t insisted on blood work
being done that day. She ended up spending 12 days in critical care. Katie
Rose has had 6 surgeries and a lung washing since her diagnosis; she has
had a total of 20 transfusions and has spent 109 days inpatient including a
spinal surgery. She has had numerous clinic, OT and PT visits.
We have lived on a roller coaster ride, not knowing what to expect, and even
though we finished chemo treatment on May 12, 2007, our worry is not over.
We have had unclear bone marrow results showing possible early relapse. We
are being seen every 2 weeks to check for blood work, and will continue having
to be checked for the next 5 years before we can say we are cured!
Some things that have made treatment more difficult for Katie Rose is because
her spine is fused. They could not give her spinal taps or spinal chemo so they
had to put an Ommaya reservoir in her head (shunt) for spinal taps and chemo
treatments. She has had complications and ended up getting very sick, we
ended having surgery again to have the reservoir removed as it had kinked and
chemo had leaked in to her scalp and ate away the flesh. They put in a new
reservoir on the other side of her head and it is working properly but the
surgery to place it in, resulted in a small bleed and she had a mild stroke. She
since has recovered. We can no longer give her chemo through her Ommaya
reservoir for she has had some changes in her brain. So we have missed many
doses of Intrathical chemo. We still can use the Ommaya for spinal taps.
She also has a central line port (in her chest) for chemo IV’s and blood work.
The first port in her chest also had to be replaced because it stopped working.
The second port in her chest works perfect and makes it easier for blood draws
and chemo when we were on chemo.
A little history on Katie Rose. She is a sweet girl who always thinks of others.
When the cedar wildfires hit our communities in San Diego, Katie Rose had just
won a contest and won money. She spent every penny on crayons, coloring
books and paper and pens for the kids in Crest. She was able to give 25 boxes
of crayons and books. This past year we have been very active in the art
therapy program at the San Diego Zoo. It has been very therapeutic and Katie
Rose enjoys seeing her friends and drawling animals. She made bracelets to
sell for a fund raiser so the kids could continue in this Art program and raised
$60.00 on her own. She has made an additional $120.00 in 2007 and donated
Katie Rose wrote a book when she was 8 years old. She wrote the book about
her recent back surgery and hospital stay, that she wants to get published.
She wrote it so other children would not be afraid of having surgery. She
wants children facing surgery to be able to get a copy of this book for free.
Katie Rose is now having us document her Leukemia experience so she can
share with others so they won’t be afraid and so people can understand what
these kids go through. She is a smiling girl and is a fighter and she will win this
battle with cancer! Her motto is “Never Give Up” It is something we all need to
remember in life.
Additional medical info on Katie Rose. She was born with a split spinal cord
(Diplomyelia). She had to spend her first year of life wearing a camp brace
as she had no hip sockets. She had her first spinal surgery at 5 months old
and they did a biopsy on the tumors on her spinal cord and they were benign.
She wore many casts to help stretch her tendons in her feet. At 23 months,
she started to walk. She had tendon lengthening at age 2 and 3 years old.
She was fitted with leg braces and wore them on both legs. At 5 years, they
broke her right leg and put plates and screws in. At six years, they removed
them. And at 6½ she had a screw put in to stop growth on her right leg. At 7,
she had a tethered cord and had surgery to release the cord. At 7½ she had
the screw removed from her ankle. She currently is also suffering scoliosis
with a 50% curve, and it is possible she will have to have rods put in her
And still, Katie only wants to give to others. Do you see why she's our hero?
|Katie has a video!
Click here to see her.