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My son's name is
Nathan, and this is his story that started 2010 (from diary entries)....
Nathan has always
been a strong healthy active child. He was
practicing at soccer one day, when his leg
started to bother him. He took a break on the
bench and as he was rubbing his leg he came
across a bump just below his knee. As most kids,
Nathan didn't pay much attention to this at the
time. In fact he didn't even tell anyone so it
went unnoticed. This took place back in August
of 2010. Nathan went on to play the rest of the
season out as defense for his championship team.
It was not until the middle of October that he
came to me to show me this "bump" he had on his
leg. This bump was just below his knee. We had
no idea he had this bump since August so I said
to him, "Let's keep an eye on it and see what it
does. You have lots of bumps and bruises, that's
what lil boys get from playing so hard." As time
went on the "bump" never bruised nor showed any
signs of going away eventually it started to
become more painful and uncomfortable and
started to bother Nathan's knee. I decided
enough time had gone by so I made him an
appointment. The appointment was on November 18,
2010 at 9:00am. That morning I figured he was
going to have some x-rays. I didn't want to have
to make two trips to town. We were able to get
in for the x-ray by 10am and that way I could
have him back to school around 10:30am. I
received a phone call by 11:00am, my heart sunk
as they told me to take him to the Emergency
Oncology Department. They had already set up an
appointment at A.I. DuPont Hospital.....
Nathan was diagnosed with Osteosarcoma (bone
cancer) on Nov. 19, 2010. He started
chemotherapy at AI DuPont on Thanksgiving of
2010 and has been handling it like a trooper.
Our family has been spending endless day and
hours at DuPont . This has been very difficult
on our family. We have another son who is in his
senior year of High School. Being a senior and
dealing with the stress of what you will do once
you graduate is already enough of a challenge,
but for him having to cope with his little
brother being diagnosed with cancer was what
topped all of that... He has also been feeling
alone because of all the time we spend up in the
hospital with Nathan's chemo treatments.
Nathan's chemo was scheduled as an in-patient
treatment. When everything went according to
plan it is almost tolerable. As we have all
learned through this process, nothing goes
according to plan. Nathan can would get sick at
any given moment and end up back at the hospital
in moments. Nathan could not attend school for
fear of getting sick. Not only that, but his
treatments took up all of his time. When he was
not getting chemo he was fighting to keep his
blood counts up high enough just to have a good
day. Nathan was able to have a friend over to
keep him company or play, but that did not
happen very often. There has been ups and downs
in our family as we have dealt with this
nightmare of a situation, but we are a tight
family and we have managed to overcome all the
hurtles that have tried to impair us.
The first week in February of 2011 Nathan
underwent surgery on his leg to remove the
tumor. This operation consisted of part of his
Tibia being removed, where the Osteosarcoma was
located. They also removed some of his thigh for
connection purposes and replaced it with a
prosthesis, taking their place which includes
the knee joint. This sounds terrifying for
anyone to go through, but Nathan at age 9 only
heard one thing. What he heard was that he would
never be able to play soccer again. Nathan is
very proud of the awards he earned during his
time playing soccer and is always eager to tell
you stories about his fantastic soccer
maneuvers. He has one championship trophy and
three participant medals. Nathan continued back
into high dose chemo until the end of July 2012
and was making a great recovery and comeback
still participating in physical therapy three
times a week at the hospital where he was also
very involved in different events to help raise
monies for the foundation at the hospital; he
never turns down an opportunity to help out.
Nathan had been pulled out of school for the
2010-2011 year to undergo the treatments and
recover from the surgery, and even with all he
is going through would like to help other people
who have cancer. He has joined "The American
Cancer Society's, Relay for Life" as a team
member of Going for the Gold, Nathan went on to
do so well that he took the award for the most
individual raised at the relay. Nathan's goal in
life has always been to make sure everyone was
having a good day. He has had his own problems
as every child does growing up but his problems
never come first. He has always set his own
problems aside and takes the time to make sure
everyone else is "OK", as long as they are
having a "good day" then he can too. Nathan had
an opportunity to return part time to school,
the 5th grade and as time went on he became
winded and noticed he was not able to
participate in physical activity as well as he
had been. He was not able to do the physical
activity he'd been doing consistently for some
time. After many more tests and different
departments the problem finally showed it's
face, the cancer had returned. The tests showed
cancer in his right lung and surgery was
scheduled and the tumor was removed. Nathan's
Doctor's still had to place his port for chemo,
and while there the Doctor checked the left lung
as well. He had a gut feeling and eventually his
fear would prove to be correct. Nathan was
diagnosed with metastatic bi-lateral lung
cancer. This means the hard tumor bone cancer
was growing in his lungs, it is like having
stones in your lungs. This changed the chemo
plan as the cancer was aggressive and resisting
treatment he had already underwent. Nathan went
back into chemo again. For us only to hear
partly through the course that the chemo was
proving to have hardship on his organs and in
order to "possibly" give Nathan a chance at a
normal life without organ transplants we had to
stop treatment. We had to decide between his
organs and the cancer. Giving that he had the
surgery and Doctor felt comfortable that he had
gotten all that was to be found at the time, we
stopped the chemo to save his organs. When
Nathan heard he had cancer again, his reply was
like no other. Nathan insisted there had to be a
change and asked if we could be part of that
change. If we could start an organization to
help children and families and research, he
wanted to be a help in every area he could help.
So our journey began to become Nathans Story
Childhood Cancer Organization. It took some time
but with the help of a friends and her boss, a
lawyers office. Her boss insisted that he would
help only if he could as his gift to the
organization. We have become Nathans dream,
Nathan's Story Childhood Cancer Organization, we
are a 501(c)(3) non-profit for childhood cancer.
Nathan continued his hard work in school
maintaining high honors, a 4.3 GPA and focusing
on his health and getting stronger; he played
varsity Golf with his local high school getting
his varsity letter and pin as a freshman. From
an invite from a fellow osteosarcoma warrior and
a great friend Nathan joined a Sled Hockey team
Delaware Sled Snipers and going to the
championships with them several times and
bringing home to the cup. We pulled him out of
public school due to it not being a great fit
and started him on a full home school program
where he would attend private home-school
classes, which he absolutely enjoyed to no end
and worked very hard on being a kids his own
age. December of 2016 we went for a routine
oncology follow up appointment and found Nathan
labs were at an all time low, he had minimal
platelets, red blood cells and his whites were
low as well, Dr was in hopes this was just a
virus and we monitored for 4 weeks when it
showed no signed of recouping doctor and I (Mom)
agreed we needed a bone marrow biopsies done
something wasn't right.
From those bone marrow biopsies Nathan would be
diagnosed in 2017 with a secondary cancer known
as Therapy-Related Myelodysplastic Syndrome
(t-MDS), in Nathan's case this would be a blood
cancer related to Acute Myeloid Leukemia (AML).
This cancer came from two of his earlier high
dose chemo-therapy treatments, Cysplatin being
from his original diagnosis in 2010 and
Ifosomide bring from his relapse with
Osteosarcoma in 2012. These are not your common
chemo-therapies that cause secondary cancers,
although they run the risk as do many of them.
This secondary cancer proved to be extremely
difficult to treat and deal with, his Dr's were
in contact with a multitude of Dr's from across
the United States and the treatments just were
not there for Nathan, who had already been
exposed to a lot of high dose chemo-therapy
treatments to begin with, his organs were of big
concern and he was in need of an Bone Marrow
Transplant, we needed to get him to that point
which was his only hope of beating it all
together and surviving. Nathan's chemotherapy
treatments would vary from one to the other,
each one being able to show some success from
first rounds, and if not we moved onto another
and nothing was working, we needed to gain
control of the cancer cells before they evolved.
Nathan was put into studies to help make that
happen. The doctors came up with a cocktail that
was a long shot but worth the try and to all our
surprise this would put Nathan into remission
(words we had never heard through all of this
starting in 2010), we needed to get into the
transplant ASAP. Through the course of time
Nathan was going through all his chemo-therapy
treatments, the search was on for his bone
marrow donor. Doctors exhausted all the
resources within the United States and extended
out to the world...problem was Nathan had a
ethnic gene in him that was preventing a donor
from being found, it came that there was no
donor to be found for Nathan worldwide. Bone
marrow registries/donors for all ethnic
population are extremely low and in desperate
need of registrants/donors. We were all
carefully tested and compared and none of us
were a match they needed, Nathan's father had
the closest numbers and he was to be used as a
last resort...We found ourselves in that exact
situation that we needed to go to our only hope
and our last resort and use Nathan's father, he
was only a partial match and a HAPLO BMT would
have to be done, this ran great risks of other
complications, but the scales were being weighed
and the opportunity was NOW, and so we
proceeded.
Nathan's transplant March 2017 was a full
success, spending months in the hospital finally
being able to go home to recover going back and
forth to the hospital 3 times a week for
testing, transfusions and whatever else he
needed through this time, he dealt with Graft
vs. Host Disease, BK HD virus, nephropathy, and
the list goes on, some going away after time and
some staying around making life difficult on a
daily basis...little by little he resumed some
daily activities, even getting back into his
home-school classes that fall for his junior
year and that alone made him a very happy boy.
Nathan thoroughly enjoyed classes, his teachers
at MT. Sophia Academy DE, and the mass amount of
friends he made there, this was a great time for
him even with everything going on with his
health. Just as Nathan started to regain life as
he should have again cancer would prove to be
relentless. Nathan started going backwards at a
rapid rate the end of October 2017, back out of
classes again and at the hospital almost
everyday needing transfusions eventually Nathan
became transfusion dependent for platelets and
red cells, even needing bags of plasma to help
out, a bone marrow biopsy would prove Nathan had
again relapsed diagnosed now with relapsed
t-MDS, odds had just stacked against Nathan, but
no one gave up hope. He was given vitamin K to
aide in this time and to no prevail he just
continued to be transfusion dependent,
developing a severe back pain in his lower back
around Christmas time that nothing would ease,
again leading to another bone marrow biopsy that
would result in our worse nightmare, Nathan had
now been diagnosed with his third cancer and the
worse possible situation t-AML. The Dr phoned
the evening of January 4th giving us this
devastating news but had a plan, the next day
instead of our original plans we were coming in
to start a new high dose chemo treatment to
battle the t- AML, no one was giving up on our
boy. It was bitter cold that morning and had
been for about a week now so his father took off
to help me so he wasn't exposed to the cold any
longer then need be, we got Nathan to his
appointment they drew labs, we had a meeting
about the new treatment and again going on to a
study so they could do this, got everything in
line to begin only receive the worst possible
news we ever could on top of everything else...
Nathan's labs showed he was in total renal
failure, in less then a day in a half from great
levels that Wednesday to total renal failure
that morning of Friday January 5, 2018. With the
aggressive t-AML diagnosis and full renal
failure there was no more for Nathan, he was
totally ready to continue his fight but his
young body just couldn't take no more; seven in
a half years of fighting cancer starting at age
9; Nathan peacefully passed away at age 16 on
January 9, 2018... a day etched in our minds
forever.
Our mission at Nathan's Story Childhood Cancer
Organization, is to help other children and
families where they need it most, internally;
bringing smiles to these children and their
families is extremely important, as most
children spend countless days/admissions in the
hospital getting treatments and so on. We'd love
to be able to help one day with expenses, bills
(yes very different from typical expenses),
needs: for the child going through the
struggles, as well as helping aid in donating
towards research to better our children's
chances of surviving long term with less side
effects from the chemo-therapies that are
offered now. Childhood cancer is the number one
killer in our children today, with majority of
the treatments being 20-30 yrs old and stemming
from adult chemo-therapies at a much higher
dose, we need to be able to offer our children
something more hopeful and positive. When the
children are done with their treatments, their
fight is not over, most children will undergo
some sort of major illness/side effect from
their treatments from the least life threatening
like infertility to more severe like heart
failure, organ failure, transplants, secondary
cancers, and etc.. Nathan's Story C.C.O. wants
to help make that difference. There are many
opportunities for research but the funds are
seriously lacking, the biggest donors and
supporters are those who have been stricken by
the disease itself and have learned as we did,
first hand how much help childhood cancer needs
to give our children a better chance to not only
beat the disease but to be able to live a full
and fun filled life afterwards.
Although Nathan's not here with us now we will
continue to do Nathan's work and MAKE A
DIFFERENCE where we can to help change how
children diagnosed with cancer will be treated,
with hopes to see new updated treatment options
becoming available one day, ones not so toxic;
ones that give the children a better chance and
hope for a new tomorrow. Nathan is a gift that
will keep on giving...
With your help, determination and donations we
can help make that difference!!!.
So won't you please join in on our mission and
help us "Make a Difference" for our children
fighting childhood cancer and to honor those who
have earned their wings too early. Help our
children see another tomorrow. As Nathan would say,
"One child diagnosed is one too many"
~ Nathan Silpath 2001-2018~
Please help Nathan's Story support this cause by
donating to Childhood Cancer
Special thanks to Kim and Jeff Payne for the
original write-up of Nathan's story prior to
Nathan's surgery. Since then Nathan's Story has
been updated by Kim Silpath (Nathan's Mother) and
Kathy Florent Marketing SEO Kent County,
Chestertown Maryland (MD)
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