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www.caringbridge.org/visit/ylaria
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Here is her background story from
her Caring Bridge page ...

Ylaria had a very happy first 2 years of life.
She has 2 sisters, Belen and Yoly,
6 and 6 mos., at the time. She had just turned
2 in May of '07 when sporadic, low-grade fevers
were noticed. Previous trips to the doctor
found no signs of infection. Fevers became
constant. She became pale and felt very weak.
On the morning of May 18, 2007, Dr. Elsa Lavadia
did an abdomen exam. She felt a firmness on
her left side and sent her to emergency for scans.
After many hours, doctors informed us they
had found a "very large mass" on her left kidney.
Dad and I felt like we couldn't breathe.
From the get-go, doctors discussed Wilms Tumor.
Ylaria was sent by ambulance from
Bakersfield to LA. She spent one night at
Cedars Sinai but they "didn't have an oncologist
to see her over the weekend." She was
transferred to UCLA. After a gazillion shots,
blood tests, and scans, and procedures,
surgery day came. By now, Ylaria was
extremely weak and didn't even have
the energy to smile. It was heart-wrenching.
Our biggest concern at that time was getting
the tumor out of her body! Ylaria underwent a "major surgery." She had a chest tube, a port-a-cath, an epidural, & hundreds of tubes and wires
coming out of her body. After 8 long hours,
word came that the tumor was completely
out! Dad and I felt relief for the
first time in days. Ylaria's two
sisters were spending their days and
nights with others. We waited 3 days for
post-surgery results. A team of doctors
told us they had resected all of the "Wilms Tumor" but that cancer cells were still found in
several lymph nodes. We were again
devastated. Our good friend Anne
Bouldoukian helped us understand
why a 2nd opinion was more than mandatory. We were questioned, challenged, and made to
feel that awaiting a 2nd opinion
could risk her life. We stuck it thru for
a few days, but the 2nd opinion was
taking longer than expected. We proceeded
with chemotherapy. She was also
scheduled for radiation. The morning of the radiation, there was a mysterious blackout.
All appointments were cancelled.
That day, the 2nd opinion came in -
it was NOT Wilms Tumor! For a 3rd time,
devastation ripped through our hearts -
we knew that Wilms was the only "curable"
cancer and were frightened to learn of
what else it could be. We were
discharged for a week so that doctors could do more work with the tumor samples. Meanwhile,
we worked 'round the clock to find
hospitals having expertise with the other cancers
mentioned. After a few desperate
phone calls, Ylaria was admitted to CHLA.
Within 1 week, they confirmed that
she had neuroblastoma but that her
surgery may have gotten "all of it."
We were again numbed to hear thatan MIBG scan showed it had
spread to her left knee and right ankle.
Ylaria had Stage IV Neuroblastoma,
high risk, unfavorable histology.
The prognosis is 50/50.
Ylaria's induction chemo began at CHLA.
She bypassed the transplant part of the
protocol and transferred to Sloan
Kettering in New York for the 3f8 monoclonal antibody treatment. Ylaria had 4 rounds of 3f8,
radiation to the original site of the tumor
and right ankle and had begun oral
accutane treatment when her knee spot, that had disappeared after induction chemo,
returned. She is considered relapsed.
She completed 7 days (2X daily) of
radiation to the knee and 3 rounds
of irinotecan/temador. This was
followed by an infection whereby
her port-a-cath was removed and replaced.
She received 5 more rounds of
irinotecan/temador. She began 3f8
monoclonal antibodies for a second time.
Ylaria received 2 rounds of 3f8 and became
HAMA positive. She finished 6 rounds of
oral accutane and we found out on
March 6, 2009 that she had relapsed in
her left knee/leg again. Ylaria underwent
high dose chemo followed by more
radiation to the left leg. Recent scans
have shown no changes. On July 6th, Ylaria
became the very first neuroblastoma patient
EVER to begin a phase one clinical trial
whereby she was infused with mom's natural
killer cells followed by 3f8 antibody.
After NK cell trial, Ylaria relapsed three
months later. She tried MIBG therapy
but didn't respond to it. She tried
ICE chemo with stem cell rescue and
scans remained stable. She went on
the perifosine trial and remained
stable for two months. As of Monday,
April, 6, 2010, we were told that
Ylaria's scans showed rapid progression
and that we may have less than eight
weeks left with her. We are numbed
beyond numb.
We were given the option to try one more
round of chemo to see if it makes
any difference in a desperate
attempt to save her life. Ylaria
tried TPI-287 in Vermont and is
currently on Dr. Sholler's
Nifurtimox trial.
On December 6, 2010, Ylaria's scans
showed two new spots, which ended
the nifurtimox trial.
She began DFMO on 12/7/10.

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A funeral Mass has been scheduled for
10:30 a.m. Saturday at St. Francis
Church. Visitation and
luncheon arrangements are pending.
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