Dear Naomi Member of Parliament,
Two and a half years ago, our lives changed forever. We had the 8th doctor my husband had seen in 10
months look at him and say, “You need chemotherapy.” Oh God….It was Cancer….we thought he had
cancer. Further explanation revealed it wasn’t cancer….but Histiocytosis. So was that better? We
thought so at the time. It wasn’t until he began treatment and we asked questions that we realized that
having Histiocytosis meant a LOT of unanswered questions and a LOT of uneducated doctors and nurses.
Shawn Parys is a 31 year old husband to his high school sweetheart, Lelynn Parys, and father of two
young children, Zoey and Logan, who at the time of his first chemo treatment were 2 ½ years old and 1
month and 1 day old. He was a Sales Engineer but due to symptoms from the disease attacking his brain
and the necessary chemotherapy treatments, had to forfeit his position in 2009 and focus his attention
to chemo, steroids, anti-nausea medications, blood draws, bone marrow production boosters, MRI’s , CT
Scans, PET Scans and so much more.
Shawn was diagnosed at age 29 (2009) with Neuro-de-generative Central Nervous System Langerhans
Cell Histiocytosis with Central Diabetes Insipidus and Periodic Alternating Nystagmus (ND CNS LCH with
CDI and PAN). The first symptom was Central Diabetes Insipidus at age 11 but we believe he was
“Under-Diagnosed” for 18 years for no one asked, “Why does an 11 year old have a damaged pituitary
gland?” The second symptom was age 28 with Periodic Alternating Nystagmus, in the short, he
continuously experiences involuntary eye movements. This symptom lead to one more thing he had to
forfeit...driving a vehicle. For fear of the safety of himself and others, he chose to give up his
independence and to not get behind the wheel. 2009 began the rollercoaster ride we so desperately did
not want to be on, but no matter how hard we tried, we couldn’t unlatch ourselves to get out…and so it
began…..
Life. Death. Our children’s faces as they grow up. Birthdays. First Dates. Graduation. Walking our
daughter down the aisle to marriage. Leading our son into manhood. Grandchildren. So many things run
through one’s mind when faced with an illness. What does one expect the future to hold now that it’s
been taken from you? The fear set it. It hit like a punch to the gut and a kick to the face. Shawn was
scared he wouldn’t even see his new born baby boy turn one. Constant thoughts of, “What if…” passed
through his mind and each one, kicking him again and taking one more piece of him as it fled. Being ill
isn’t easy…but adding to it the term, “Rare Disease” seems to make everything worse. No one has
answers. There are NO comforting words that give such hope to the future that you KNOW you will be
fine. It’s empty. It’s alone. It’s frightening. Shawn was constantly worried that the chemo wasn’t working
well enough; that his own body was slowly taking away his life from his hands…and there wasn’t a thing
he could do to stop it. It’s not cancer…no…in many ways, it’s worse….it’s Histiocytosis.
Month after month Shawn endured chemo, steroids, self-injections, blood draws, falling platelets,
neutropenia, and bone pain so severe the only thing he could do was to lay on the floor in a fetal
position, while our 2 year old daughter curled up next to him to, “Wait it out.” This was now our life.
This is what our future held.
One year later, we thought we were finished with chemo only to learn 6 months later he needed an
additional 6 months of treatment. We thought we were getting off the ride, but it deceived us and took
off again. By this point, chemotherapy was such a common word that our children were not just playing,
“Doctor” but would play, “Let’s go to treatment!”
Life and death often grabbed us by the collar when cold and flu season arrived. Scared to death he
would not be able to fight off infections often caused him to panic when someone coughed or sneezed
in the same room as he. Shawn didn’t even shake a hand while on chemo, and just to be safe, he never
really hugged anyone…even his own wife and children. Image it. A year and a half…barely any human
contact…it only added to the feeling of being alone.
So where is he now? What is his prognosis? What does our future hold? We wish we had an answer for
you. One Answer. But we don’t. We don’t know how well he’s doing. We don’t know what his prognosis
is. We don’t know what his future holds for him. The doctors simply Do Not Know. Can you, for one
moment, step in to Shawn’s shoes and feel the pain, discomfort, sadness, aggravation and frustration of
being told, “You have a Rare Disease. We don’t know why you have it, how you got it, or what to do with
it. You’ve done the chemo… Looks like it may have helped. Go home, and if you think anything else is
wrong, let us know.” That’s it. Wow……with all our technology, science, medicines, research….that’s it?
For a disease discovered in 1868….we know so little it’s almost as if it’s a new discovery. Wow…144
years and still not one question answered.
This disease hasn’t just affected 1 person. It hasn’t just attacked one man. It’s attacked his children,
parents, in-laws, church family, friends and me…the woman who has loved this man since the tender
age of 15. Watching our wedding video should bring such memories that flood one with joy and
laughter. Sadly, when I look into the eyes of that young couple and see all the hope they had for their
future, it brings me to tears, for I know that with 5 words, our life is changed forever. “You Have
Langherhans Cell Histiocytosis.” In those 5 words my life, my husband, my security, my heart was taken
from me. I had by my side a 2 ½ blue eyed blond curly haired little girl, in my arms a 1 month old
precious baby boy and in front of me, laying in a hospital bed, my husband. What? Wait…this is not what
we planned! Alright, fine…I’ll roll with the punches…ok…just answer this…Will he be ok? Silence. That’s
the true answer among the doctors and nurses stammering words. Silence. They Just Don’t Know.
So I, the caregiver, watched him as he received chemotherapy; watched him as he winced and moaned
from pain; watched him as he tried to interact with our children “safely;” watched him as he week after
week he fought to live. All I could do is watch. They say a caregiver needs to care for themselves as well
as the loved one. But how can one do that when they lose themselves due to the shock of it all? The fear
of it all? Often people would ask how I was doing. I’d smile politely and respond the usual, “Oh, we’re
ok!” Then once in a while, one person would grab my arm, look me in the eye and say again, “How are
you doing?” A response….I needed to respond. All I could say was that I was numb…it may sound
ridiculous but honestly, I had shut down and my body took over. I was in robotic mode. I did what
needed to be done, cared for those needing care, and breathed just deep enough to keep my body
going, but not enough to bring myself back to life. I didn’t know how I was doing. Everything I had was
changing and I couldn’t keep up with it. Now I was a stay at home mom, with a new born son, little girl, a
husband on chemo, we lost our health insurance, had to reach out to family for help so we didn’t lose
our car, had paperwork everywhere we went to try to keep our home and Shawn on treatment, had to
place our children on state health insurance, eligible to go to a food pantry for groceries, and our
calendar was booked with doctor appointments, treatments and blood draws twice a week. So where
was I suppose to fit into that picture?
I found one year later one person….one other person with Histiocytosis. That Opened A Door I NEVER
Want Closed. I woke up. I came to life. I found out that there are other’s out there fighting so hard to
live! To be heard! To get help! A little boy, under one year started a flame inside me that has only grown
bigger as each day passes. He has LCH…he is still fighting against LCH. But seeing his video…seeing his
battle…seeing his precious eyes…I Woke Up. It is not about me…it is not about Shawn…or our family.
This is about every one of us! We Are Not ALONE! Doctors tell patients they are “Rare.” Doctors tell
patients there “Aren’t Many.” But the doctors are wrong! I started looking for more, yes I found many
online and yes I searched them out. However, within 60 miles of my home I know of 22 people affected
by LCH alone! 2 other families from the same hometown Shawn and I grew up in! This disease is rare
because people SAY it’s rare. This disease is rare because no one tracks it to really see how many cases
there are of it and really calculate out an accurate figure. This disease is rare because doctors do not
know enough about it to properly diagnose it so it becomes misdiagnosed as Multiple Sclerosis, Chronic
Bronchitis, Eczema, Lymphoma, Irritable Bowel Syndrome, Ear Infections and so much more. This
disease is deadly and if it’s not deadly, then it’s debilitating.
We Need A Voice. We Need To Be Heard. We Need Help for these Histio Warriors. Newborns, born
stillborn or born attacked. Babies, facing pokes and prods to find out what’s wrong, only to realize its
Histio and now its chemotherapy and possibly a bone marrow transplant. Children, wanting to play
outside and go to school…only to be placed within hospital walls and to be looked at through glass
windows. Teenagers, suddenly take from us or just beginning the many, many doctor appointments to
come to actually figure out what is wrong with them. Adults, finding out they may have had the disease
since childhood or out of the blue….gone. No….it’s not cancer….it’s Histiocytosis.
There are 5 versions of Histio but each has potential to be deadly. How many more families must be
struck with Histio before we rise up and hear them? How many more Histio Angels must we gain before
we say, “Enough! This needs attention now!” When will that day come? How long must we suffer in
silence? Who will help us in raising our voice to be heard? What do we, I, have to do to gain that voice
for these Warriors and the families of Angels? Why is it, that the term, “Rare” takes all the wind out of
our sail and means we are to be left alone…afraid…and forgotten? We are here, and I will continue to
fight for help until help arrives.
Today is not only Rare Disease Day but also a Leap Year. I hope that from this point forward, each “Rare”
Leap Year that passes makes you think of all the “Rare Disease Warriors” fighting for life, fighting for
help, and fighting for a voice. We thank you for your time and I thank you for listening to the words of a
simple wife and mother, fighting for each newborn, baby, child, teen and adult fighting Histiocytosis
Two and a half years ago, our lives changed forever. We had the 8th doctor my husband had seen in 10
months look at him and say, “You need chemotherapy.” Oh God….It was Cancer….we thought he had
cancer. Further explanation revealed it wasn’t cancer….but Histiocytosis. So was that better? We
thought so at the time. It wasn’t until he began treatment and we asked questions that we realized that
having Histiocytosis meant a LOT of unanswered questions and a LOT of uneducated doctors and nurses.
Shawn Parys is a 31 year old husband to his high school sweetheart, Lelynn Parys, and father of two
young children, Zoey and Logan, who at the time of his first chemo treatment were 2 ½ years old and 1
month and 1 day old. He was a Sales Engineer but due to symptoms from the disease attacking his brain
and the necessary chemotherapy treatments, had to forfeit his position in 2009 and focus his attention
to chemo, steroids, anti-nausea medications, blood draws, bone marrow production boosters, MRI’s , CT
Scans, PET Scans and so much more.
Shawn was diagnosed at age 29 (2009) with Neuro-de-generative Central Nervous System Langerhans
Cell Histiocytosis with Central Diabetes Insipidus and Periodic Alternating Nystagmus (ND CNS LCH with
CDI and PAN). The first symptom was Central Diabetes Insipidus at age 11 but we believe he was
“Under-Diagnosed” for 18 years for no one asked, “Why does an 11 year old have a damaged pituitary
gland?” The second symptom was age 28 with Periodic Alternating Nystagmus, in the short, he
continuously experiences involuntary eye movements. This symptom lead to one more thing he had to
forfeit...driving a vehicle. For fear of the safety of himself and others, he chose to give up his
independence and to not get behind the wheel. 2009 began the rollercoaster ride we so desperately did
not want to be on, but no matter how hard we tried, we couldn’t unlatch ourselves to get out…and so it
began…..
Life. Death. Our children’s faces as they grow up. Birthdays. First Dates. Graduation. Walking our
daughter down the aisle to marriage. Leading our son into manhood. Grandchildren. So many things run
through one’s mind when faced with an illness. What does one expect the future to hold now that it’s
been taken from you? The fear set it. It hit like a punch to the gut and a kick to the face. Shawn was
scared he wouldn’t even see his new born baby boy turn one. Constant thoughts of, “What if…” passed
through his mind and each one, kicking him again and taking one more piece of him as it fled. Being ill
isn’t easy…but adding to it the term, “Rare Disease” seems to make everything worse. No one has
answers. There are NO comforting words that give such hope to the future that you KNOW you will be
fine. It’s empty. It’s alone. It’s frightening. Shawn was constantly worried that the chemo wasn’t working
well enough; that his own body was slowly taking away his life from his hands…and there wasn’t a thing
he could do to stop it. It’s not cancer…no…in many ways, it’s worse….it’s Histiocytosis.
Month after month Shawn endured chemo, steroids, self-injections, blood draws, falling platelets,
neutropenia, and bone pain so severe the only thing he could do was to lay on the floor in a fetal
position, while our 2 year old daughter curled up next to him to, “Wait it out.” This was now our life.
This is what our future held.
One year later, we thought we were finished with chemo only to learn 6 months later he needed an
additional 6 months of treatment. We thought we were getting off the ride, but it deceived us and took
off again. By this point, chemotherapy was such a common word that our children were not just playing,
“Doctor” but would play, “Let’s go to treatment!”
Life and death often grabbed us by the collar when cold and flu season arrived. Scared to death he
would not be able to fight off infections often caused him to panic when someone coughed or sneezed
in the same room as he. Shawn didn’t even shake a hand while on chemo, and just to be safe, he never
really hugged anyone…even his own wife and children. Image it. A year and a half…barely any human
contact…it only added to the feeling of being alone.
So where is he now? What is his prognosis? What does our future hold? We wish we had an answer for
you. One Answer. But we don’t. We don’t know how well he’s doing. We don’t know what his prognosis
is. We don’t know what his future holds for him. The doctors simply Do Not Know. Can you, for one
moment, step in to Shawn’s shoes and feel the pain, discomfort, sadness, aggravation and frustration of
being told, “You have a Rare Disease. We don’t know why you have it, how you got it, or what to do with
it. You’ve done the chemo… Looks like it may have helped. Go home, and if you think anything else is
wrong, let us know.” That’s it. Wow……with all our technology, science, medicines, research….that’s it?
For a disease discovered in 1868….we know so little it’s almost as if it’s a new discovery. Wow…144
years and still not one question answered.
This disease hasn’t just affected 1 person. It hasn’t just attacked one man. It’s attacked his children,
parents, in-laws, church family, friends and me…the woman who has loved this man since the tender
age of 15. Watching our wedding video should bring such memories that flood one with joy and
laughter. Sadly, when I look into the eyes of that young couple and see all the hope they had for their
future, it brings me to tears, for I know that with 5 words, our life is changed forever. “You Have
Langherhans Cell Histiocytosis.” In those 5 words my life, my husband, my security, my heart was taken
from me. I had by my side a 2 ½ blue eyed blond curly haired little girl, in my arms a 1 month old
precious baby boy and in front of me, laying in a hospital bed, my husband. What? Wait…this is not what
we planned! Alright, fine…I’ll roll with the punches…ok…just answer this…Will he be ok? Silence. That’s
the true answer among the doctors and nurses stammering words. Silence. They Just Don’t Know.
So I, the caregiver, watched him as he received chemotherapy; watched him as he winced and moaned
from pain; watched him as he tried to interact with our children “safely;” watched him as he week after
week he fought to live. All I could do is watch. They say a caregiver needs to care for themselves as well
as the loved one. But how can one do that when they lose themselves due to the shock of it all? The fear
of it all? Often people would ask how I was doing. I’d smile politely and respond the usual, “Oh, we’re
ok!” Then once in a while, one person would grab my arm, look me in the eye and say again, “How are
you doing?” A response….I needed to respond. All I could say was that I was numb…it may sound
ridiculous but honestly, I had shut down and my body took over. I was in robotic mode. I did what
needed to be done, cared for those needing care, and breathed just deep enough to keep my body
going, but not enough to bring myself back to life. I didn’t know how I was doing. Everything I had was
changing and I couldn’t keep up with it. Now I was a stay at home mom, with a new born son, little girl, a
husband on chemo, we lost our health insurance, had to reach out to family for help so we didn’t lose
our car, had paperwork everywhere we went to try to keep our home and Shawn on treatment, had to
place our children on state health insurance, eligible to go to a food pantry for groceries, and our
calendar was booked with doctor appointments, treatments and blood draws twice a week. So where
was I suppose to fit into that picture?
I found one year later one person….one other person with Histiocytosis. That Opened A Door I NEVER
Want Closed. I woke up. I came to life. I found out that there are other’s out there fighting so hard to
live! To be heard! To get help! A little boy, under one year started a flame inside me that has only grown
bigger as each day passes. He has LCH…he is still fighting against LCH. But seeing his video…seeing his
battle…seeing his precious eyes…I Woke Up. It is not about me…it is not about Shawn…or our family.
This is about every one of us! We Are Not ALONE! Doctors tell patients they are “Rare.” Doctors tell
patients there “Aren’t Many.” But the doctors are wrong! I started looking for more, yes I found many
online and yes I searched them out. However, within 60 miles of my home I know of 22 people affected
by LCH alone! 2 other families from the same hometown Shawn and I grew up in! This disease is rare
because people SAY it’s rare. This disease is rare because no one tracks it to really see how many cases
there are of it and really calculate out an accurate figure. This disease is rare because doctors do not
know enough about it to properly diagnose it so it becomes misdiagnosed as Multiple Sclerosis, Chronic
Bronchitis, Eczema, Lymphoma, Irritable Bowel Syndrome, Ear Infections and so much more. This
disease is deadly and if it’s not deadly, then it’s debilitating.
We Need A Voice. We Need To Be Heard. We Need Help for these Histio Warriors. Newborns, born
stillborn or born attacked. Babies, facing pokes and prods to find out what’s wrong, only to realize its
Histio and now its chemotherapy and possibly a bone marrow transplant. Children, wanting to play
outside and go to school…only to be placed within hospital walls and to be looked at through glass
windows. Teenagers, suddenly take from us or just beginning the many, many doctor appointments to
come to actually figure out what is wrong with them. Adults, finding out they may have had the disease
since childhood or out of the blue….gone. No….it’s not cancer….it’s Histiocytosis.
There are 5 versions of Histio but each has potential to be deadly. How many more families must be
struck with Histio before we rise up and hear them? How many more Histio Angels must we gain before
we say, “Enough! This needs attention now!” When will that day come? How long must we suffer in
silence? Who will help us in raising our voice to be heard? What do we, I, have to do to gain that voice
for these Warriors and the families of Angels? Why is it, that the term, “Rare” takes all the wind out of
our sail and means we are to be left alone…afraid…and forgotten? We are here, and I will continue to
fight for help until help arrives.
Today is not only Rare Disease Day but also a Leap Year. I hope that from this point forward, each “Rare”
Leap Year that passes makes you think of all the “Rare Disease Warriors” fighting for life, fighting for
help, and fighting for a voice. We thank you for your time and I thank you for listening to the words of a
simple wife and mother, fighting for each newborn, baby, child, teen and adult fighting Histiocytosis
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