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11-month-old Willow is the first child born to Natalie and James Crowe of McDonough, GA. They were so excited to welcome a baby into their family and could not have felt more blessed. Nine months ago, Willow’s mom noticed several bumps pop up on her back and belly which their Pediatrician thought were hormone bumps or possibly a heat rash. Willow was prescribed steroid cream, but after no change, they returned back to the pediatrician’s office, only to be diagnosed with eczema. After trying a different steroid cream with no real results, their doctor gave them a referral to be seen by a pediatric dermatologist.
Willow was seen by two different dermatologists who both claimed her symptoms to be eczema related. To get a more accurate diagnosis, a biopsy was done of the main rash on Willow's back, but the results still pointed to eczema. Willow visited many different pediatric dermatologists and tried all their suggestions. After countless creams and lotions, bath washes, laundry detergent, steroid creams, EXTENSIVE diets for Natalie who was breastfeeding, and for Willow, there was still NO noticeable change.
Willow continued to suffer as the rash on her back had become
increasingly irritated and painful. She was put on two new medications
that finally offered some relief but did not clear up the rash. She
was also placed on an oral steroid that helped clear the rash on her
back, but the bright red bumps in her groin area did not improve. At
Willow’s next dermatologist appointment, her doctor asked for the
bumps on her groin to be biopsied.
The Crowes got the call with the results. It was Langerhans Cell Histiocytosis (LCH).
Langerhans Cell Histiocytosis (LCH) is a disorder in which the
body makes too many dendritic cells. These cells play a role in the
body’s immune system. Langerhans cells are a form of dendritic cell,
or histiocyte, which is mostly found in the skin, lungs, stomach and
intestines. In LCH, these cells build up in various tissues and cause
damage. LCH is not a cancer, but it shares similarities to some
cancers and often requires treatment with chemotherapy.
LCH most commonly affects the skin and bones, but it can involve any organ in the body including lymph nodes, lungs, liver, spleen, bone marrow or brain. The exact cause of LCH in children is unknown. After much research and many phone calls back and forth with the dermatologist, Natalie began to have a clearer understanding of what Willow’s diagnosis was, but had no clue of the magnitude of the journey ahead.
Their next steps included an entire body X-ray (included 26
different X-rays), and a very thorough Chest X-ray, as well as an
ultrasound of the abdomen. These tests were to make sure this disease
was only affecting her skin, which is the best case scenario. They
were referred to a pediatric oncologist who went through a thorough
physical examination and explained LCH in a little more depth. He also
claimed that the disease was only affecting her skin. He said there
was a VERY slim chance it could travel elsewhere affecting her bones
and major organs, but he personally had never seen that happen.
One average day post-diagnosis, Natalie noticed Willow pulling
at her ears, and made an appointment to get them checked out. The
pediatrician explained that they looked good, she just had some
drainage, but they found that her lymph nodes were swollen and she had
a raised knot on the back of her head. They immediately followed up
with the oncologist who ordered the same tests as before, as well as a
CT Scan to see if the lymph nodes and the knot on her head were, in
fact, the LCH.
Sadly, the results showed that the swollen lymph nodes were
LCH and that Willow had two bone lesions in the back of her head.
She also had blood work done to check the liver, which came back
fine, but they did find out her hemoglobin was low. The oncologist
explained that chemotherapy was the best option to treat Willow’s
LCH which again left her parents stunned. They were heartbroken.
As they prepped for Willow’s port placement surgery, they tried all kinds of home remedies to try to bring her hemoglobin levels up. They traveled the day before surgery to Atlanta for pre-op testing, but the anesthesiologist was not comfortable with Willow’s hemoglobin number so she received a blood transfusion. The next day, her port was placed, a bone marrow test was done, and Willow received her first chemo treatment.
This marked the beginning of a frightening journey the Crowes
never dreamed they would travel. Willow has now completed six weeks of
chemo and had a CT scan as well as a repeat bone marrow test. Neither
one came back clear, but her doctors have seen some progress. She is
currently repeating another six weeks of chemo followed by a course of
strong oral steroids. Then Willow's doctors will repeat the same tests
to see if there has been more progression. The Crowes have opted to go
into a study to better determine Willow’s treatment plan. They are
hoping for clear scans or marked improvement. If Willow’s scans are
clear she may not have to repeat another six weeks of chemo, but if
not, she may be switched to a stronger dose. Willow’s treatment will
be long, possibly upwards of two years of chemotherapy depending on
her scans, but it is the best chance her doctors have to put her LCH
into remission.
Natalie is currently staying at home to be with Willow as
treating her LCH is truly a full-time job. James works full time as an
operations manager, but over the past 11 months, he has had to miss
many days of work due to Willows doctor appointments. They do
have insurance, but the coverage is very slim until the high
deductible is met... in-network $6,000 and out-of-network
$7,350. They also have travel expenses from McDonough to
Atlanta as well as prescription co-pays and other medical bills not
covered. They are in the application process for a Katie Becket Waver
but it takes time to be approved.
Ride to Give understands how stressful this and is stepping up
to support the Crowes by raising funds for their 2019 deductible and
travel expenses to and from Atlanta. This financial peace of mind will
allow them to focus on Willow rather than worrying about how her
medical bills will be paid. Please make your tax-deductible donation
to Ride to Give in support of this sweet baby girl.
You may follow Willow's journey by liking Willow Strong on Facebook.
*Contributions are solicited with the understanding that the donee organization (Ride to Give, 501c3 tax ID 46-2952297) has complete discretion and control over the use of all donated funds. Questions about how your donation is used can be answered on our website at http://bit.ly/2g1vWSe.