Zoey-Stronger than Relapsed Neuroblastoma

“Your child has cancer." Those four little
words are among the most devastating
words a parent can hear. Words that will
change your life for ever.

For over a year I noticed things with
Zoey that did not seem “normal” to me,
such as unexplained fevers that at times
disappeared by the time I got her to her
pediatrician or E.R., after a full
examination the diagnosis would always 
come back as “viral infections”.

Rashes: allergies

Leg and joint pain: “Growing pains”. 

Nauseous: “Reflex” or “Stomach virus”.  

Weight loss; she was too active.... and
since I was never convinced everyone
believed I was going crazy or becoming a
Hypochondriac.

October 25, 2016
Zoey could not take part in cheerleading
practice, for her leg was hurting her too
much, it hurt to walk. I immediately took
her to the E.R., the Dr ordered xrays,
the results came back that Zoey had a “
compressed thoracic spine fracture”,
probably from an old injury that had been
re injured.   Zoey had fallen Saturday
during  tumbling.. could be a possibility..

x-ray results for her leg pain.... a strain
ligament .. needed to see an orthopedic.

Three days later while Zoey slept what I
had feared for so long became a reality ...
Zoey had cancer.  Zoey was 8.

Neuroblastoma, Stage 4 high risk.
a rare cancer known as “the silent killer.

A  large mass located on her spine too
large and dangerous to operate,  the
cancer which originated in her abdomen
had already spread to her bone marrow,
pelvis, shoulders, hips, femur, knees,
ankles ...

A “road map” of treatments was put in place to beat this monster called.  

 “Neuroblastoma”.

After months of intense treatment, surgery and 2 bone marrow transplant, 20 cycle of radiation in May of 2018 Zoey went into
remission or NED ;no evidence of disease) and started a trial, DFMO which was supposed to help in keeping the cancer away.

I didn’t.

In late November of 2018 Zoey had her
scans which resulted with a shadow
appearing near her abdomen.  “it’s
nothing”, I was told, probably residue.

By early January there were 5 tumors in
five different areas, alive and kicking its
way back into her body.

With no other known treatments or
trials available in Florida, in January17th,
2019 Zoey was evaluated at
Memorial Sloan Kettering in
New York where a trial by the name of
Hu3F8, a combination of of strong
chemo plus antibodies with brutal side
effects was available.

Prior to starting the treatment Dr Kushner briefly told me to brace myself for 
“ you will be seeing her getting worse
before getting better “. 

After another 6 rounds of the ICE regiment in August of 2019 Zoey started the HU3F8
trial. Dr Kushner was not wrong..it was pure torture.

On April 25, 2020  Zoey had major
surgery to remove the “mother” tumor
growing in her abdomen. Samples from
the tumor removed were sent for “bio.    
marking testing” and the biopsy revealed
that Zoey had a higher than normal
amount of ALK protein, testing positive
for ALK Mutation. When cancer cells
have the  ALK gene or make too much
ALK protein, the cancer cells grow and multiply more quickly, which makes the
tumors more difficult to treat.

After the 8th cycle of HU3f8  Zoey had
scans which revealed that 2 out of the 4
tumors still remaining in her body, which
cannot be surgically removed, had almost
doubled in size, confirming the biopsy
findings in April. 

24 round of chemotherapy...

6 rounds of I.C.E high dose Chemo

5 rounds of Immunotherapy...

20 sessions of radiation...

2 bone marrow transplants...

2 major surgeries...

numerous transfusions, scans and bone marrow aspirations...

8 month trial of DFMO...failed

8 cycles of HU3f8 trial...inconclusive

1 cycle of  MIBG therapy... failed

Stem CellRescue

Another round of ICE chemo regimen

high dose radiation

Present: new Neuroblastoma
immunotherapy study

There is a drug,  an ALK
inhibitor used to treat cancer cells
identified with ALK mutation. Depending
on the dosage, this drug can cost anywherefrom $5800  for a 30 day supply of 1 tablet daily to $18,000 a month for a 30 day
supply depending on the dosage. 

This treatment has been denied by our
insurance company.  NOT because they do not want to pay, but because not enough is known on the dangers of treating a child
with this drug, the FDA approved this drug 
for ALK+non-small cell Lung cancer in
ADULTS  with ALK mutations NOT for ALKmutations in children with Neuroblastoma.

Without this therapy Zoey has no
chance of beating Neuroblastoma.
Chemotherapy, Immunotherapy and
radiation alone will not stop the spread
or growth of these tumors. 

Two weeks ago scans were repeated. Out
of the 4 tumors remaining, 2 are stable...

1 “slightly decreased”

1 tumor INCREASED, a soft mass, the
same that had previously doubled in size
due to the ALK mutation.  This one tumor
because of the location makes it difficult
for Zoey to walk without the need to take
constant break orpainful episodes.

Everyone’s situation is different. With
pediatric cancer the only similarity is that there is no similarity except perhaps the
desperate need in finding a cure and
keeping our child alive. 

That is why I’m reaching out to each and
everyone of you, family and friends, friends of friends, co-workers, anyone who can
help .

Thank you and God bless.