Ben’s Story... The first time he was diagnosed with Neuroblastoma
Our sweet little two-and-a-half year old son, Ben, appeared to be happy and healthy back in the beginning of 2004. He
loved his trains, videos, day care friends - everything was "normal" in his life. Ben began to have low-grade fevers, a
constant runny nose, and some occasional issues with limping. What appeared to be "the average virus that wouldn't go
away" turned in to the most heartbreaking news: Our Ben had Neuroblastoma.
Ben's exact diagnosis was Neuroblastoma, Stage IV, high risk, unfavorable tumor, with the n-myc gene non-amplified. His
primary tumor was located on his left adrenal gland. His bones and bone marrow were highly infiltrated with disease as
well.
We were admitted to Children's Hospital in Columbus, Ohio, under the care of Dr. Nick Yeager in February, 2004. Ben
was placed on Protocol A-3973 for treating high risk Neuroblastoma. We learned that Ben would have to endure six
rounds of aggressive chemotherapy, surgery to resect his primary tumor, an autologous stem-cell transplant, radiation
therapy, and a six-month course of 13 cis-retinoic acid (Accutane). Also, part of the A-3973 Protocol included a
randomized study of ch14.18, which is an antibody therapy that has shown some promise of keeping children in
remission from this dreadful disease. Ben was randomized to receive five rounds of this treatment, which he completed
March, 2005. Ben was declared NED (no evidence of disease) in June, 2005, had his broviac catheter removed two days
after his fourth birthday, and has remained NED since then!
Since Ben has finished treatment and he’s remained NED, we were comfortable with Matt accepting a job in Denver. We
moved to Colorado (Aurora) in June, 2006. Ben’s care has been transferred to Dr. Brian Greffe at The Children’s
Hospital in Denver. Ben has graduated from having scans every three months to every six months. While I’m sure this is
a relief for Ben, I still have anxiety revolving around scan time. If it were up to me, I’d scan him constantly. What we do
know about Neuroblastoma is that it has an extremely high relapse rate. If it does happen to come back, it is usually very
aggressive and extremely resistant to treatment. So, we are constantly praying for Ben to maintain his glorious NED
status!
It is hard to believe that we are coming up on the three year anniversary of his diagnosis. Our sweet little boy has been
so incredibly brave and has been enjoying his time being a “normal” boy. He fought like a champion and endured so
many horrible treatments - he deserves nothing but smooth sailing from here on out.
I am praying that this will be all the treatment Ben will ever have to endure. He has taken it all in stride and continues to
face each day with a strength that is astounding. Words cannot express what I feel for my son. I am proud. I am amazed.
I am his constant pupil in all matters of character. I love this little guy with all I am. My son fought a most dreadful cancer
that can only be described as relentless. Thankfully, there have been some children who have won this fight against
Neuroblastoma. I believe Ben will be one of them. He just has to be.
Family Bio
Our family lives in Aurora, CO. Dad (Matt) works for MapQuest as a Product Manager. Mom (Sarah) stays at home with
the kiddos. Ben turned five on June 22, 2006 and still loves trains and movies, but has expanded his interests to include
video games, Spider-Man, Star Wars, Lego's, playing with friends (both real and imaginary) and making cookies. He
started Kindergarten this past July. Little sister, Madeline Grace, was born on April 3, 2004, six weeks after Ben was
diagnosed. She is a bright ray of sunshine and full of smiles!
We are blessed with a strong support system of family and friends. The outpouring of love, prayers, and support that so
many have exhibited has been beyond belief! It is evident that so many lives have been touched by the "Amazing Ben",
a very modern day Super-Hero. We are eternally grateful for your continued support. Thank you.
Our sweet little two-and-a-half year old son, Ben, appeared to be happy and healthy back in the beginning of 2004. He
loved his trains, videos, day care friends - everything was "normal" in his life. Ben began to have low-grade fevers, a
constant runny nose, and some occasional issues with limping. What appeared to be "the average virus that wouldn't go
away" turned in to the most heartbreaking news: Our Ben had Neuroblastoma.
Ben's exact diagnosis was Neuroblastoma, Stage IV, high risk, unfavorable tumor, with the n-myc gene non-amplified. His
primary tumor was located on his left adrenal gland. His bones and bone marrow were highly infiltrated with disease as
well.
We were admitted to Children's Hospital in Columbus, Ohio, under the care of Dr. Nick Yeager in February, 2004. Ben
was placed on Protocol A-3973 for treating high risk Neuroblastoma. We learned that Ben would have to endure six
rounds of aggressive chemotherapy, surgery to resect his primary tumor, an autologous stem-cell transplant, radiation
therapy, and a six-month course of 13 cis-retinoic acid (Accutane). Also, part of the A-3973 Protocol included a
randomized study of ch14.18, which is an antibody therapy that has shown some promise of keeping children in
remission from this dreadful disease. Ben was randomized to receive five rounds of this treatment, which he completed
March, 2005. Ben was declared NED (no evidence of disease) in June, 2005, had his broviac catheter removed two days
after his fourth birthday, and has remained NED since then!
Since Ben has finished treatment and he’s remained NED, we were comfortable with Matt accepting a job in Denver. We
moved to Colorado (Aurora) in June, 2006. Ben’s care has been transferred to Dr. Brian Greffe at The Children’s
Hospital in Denver. Ben has graduated from having scans every three months to every six months. While I’m sure this is
a relief for Ben, I still have anxiety revolving around scan time. If it were up to me, I’d scan him constantly. What we do
know about Neuroblastoma is that it has an extremely high relapse rate. If it does happen to come back, it is usually very
aggressive and extremely resistant to treatment. So, we are constantly praying for Ben to maintain his glorious NED
status!
It is hard to believe that we are coming up on the three year anniversary of his diagnosis. Our sweet little boy has been
so incredibly brave and has been enjoying his time being a “normal” boy. He fought like a champion and endured so
many horrible treatments - he deserves nothing but smooth sailing from here on out.
I am praying that this will be all the treatment Ben will ever have to endure. He has taken it all in stride and continues to
face each day with a strength that is astounding. Words cannot express what I feel for my son. I am proud. I am amazed.
I am his constant pupil in all matters of character. I love this little guy with all I am. My son fought a most dreadful cancer
that can only be described as relentless. Thankfully, there have been some children who have won this fight against
Neuroblastoma. I believe Ben will be one of them. He just has to be.
Family Bio
Our family lives in Aurora, CO. Dad (Matt) works for MapQuest as a Product Manager. Mom (Sarah) stays at home with
the kiddos. Ben turned five on June 22, 2006 and still loves trains and movies, but has expanded his interests to include
video games, Spider-Man, Star Wars, Lego's, playing with friends (both real and imaginary) and making cookies. He
started Kindergarten this past July. Little sister, Madeline Grace, was born on April 3, 2004, six weeks after Ben was
diagnosed. She is a bright ray of sunshine and full of smiles!
We are blessed with a strong support system of family and friends. The outpouring of love, prayers, and support that so
many have exhibited has been beyond belief! It is evident that so many lives have been touched by the "Amazing Ben",
a very modern day Super-Hero. We are eternally grateful for your continued support. Thank you.
A Life Worth Living…
Monday, July 13th, 2009
I am “bad mood mom” right now. I have my eyes closed and my fingers are furiously tapping on my little keyboard here…
letting it all come out. What will come out? I don’t know. Reminds me of that George Carlin skit about things left in the
refrigerator too long – could be meat, could be cake – it’s totally up in the air.
I am completely floored. My Ben has relapsed. For those of you who have children I’m sure you can recall those early
days when it wasn’t difficult to pass hours just gazing into their little faces. I remember just days after he was born I was
sitting in a chair holding him on my lap, staring at that sweet little super serious face. His little brow perpetually crinkled
in that “what the hell is going on here” expression. Seriously. He was born a wise old man. I’ll post a picture to prove it.
Monday, July 13th, 2009
I am “bad mood mom” right now. I have my eyes closed and my fingers are furiously tapping on my little keyboard here…
letting it all come out. What will come out? I don’t know. Reminds me of that George Carlin skit about things left in the
refrigerator too long – could be meat, could be cake – it’s totally up in the air.
I am completely floored. My Ben has relapsed. For those of you who have children I’m sure you can recall those early
days when it wasn’t difficult to pass hours just gazing into their little faces. I remember just days after he was born I was
sitting in a chair holding him on my lap, staring at that sweet little super serious face. His little brow perpetually crinkled
in that “what the hell is going on here” expression. Seriously. He was born a wise old man. I’ll post a picture to prove it.
See? Anyway, I was holding him, gazing at his amazing little face when that Stevie Wonder song “For Once in My Life”
came on the radio.
For once in my life I have someone who needs me. I have someone who loves me. I’m not alone anymore.
These are just snippets of the lyrics. And even though I knew this song well enough to sing along, this time the lyrics just
slapped me upside the head. My Ben. Someone who needs me. Someone who loves me. I’m not alone anymore. Ben was
my gift. Ben was my first glimpse into the wonderfulness of what “family” was supposed to be. I did not grow up with
reasonable family relationships. I had no idea of what “family” was. By the time I was 12 my mom was off pursuing her next
husband who didn’t want to marry her until I was 18 because he didn’t want to assume guardianship of me. They were
eventually married – one month after I turned 18. My sister was seven years older than me, which wasn’t really conducive
to any sort of bonding. My biological father remarried a woman (who ultimately committed suicide when I was 18) and
chose to not have anything to do with me. My step-siblings tortured me. One of them on a daily basis – to the point where
she was kicked out of the house once her dastardly deeds were discovered. Family. Not my thing. But here I am – a
mother – and completely clueless as to how to lovingly raise this child. But I was going to do it. I had the handbook on how
NOT to do it, I would just do everything polar opposite of what I’d learned.
I thought I was doing a pretty good job.
So WHY is this beautiful child, who I love with my entire heart, being dangled in front of me? Sometimes I hear what I think
is God saying “Here he is… he’s wonderful… but you can’t have him.” WHY AM I BEING THREATENED WITH LOSING HIM
AGAIN? I thought we were in the clear. I thought that after that first tortuous treatment protocol he went through that he
was going to BEAT this. Do you know how many kids survive relapsed Neuroblastoma? This disease is so awful. When
neuroblastoma comes back it’s just saying “HaHa! I’m resistant to treatment and you won’t beat me this time.”
When a child is diagnosed with high risk neuroblastoma the treatment protocol is to throw absolutely every treatment
available at these kids. Ben had powerful chemo cocktails, surgeries, bone marrow transplant, radiation, oral chemo and
antibody therapy… everything that his little body could take. And he beat it. But now the cancer has learned. It’s stronger.
It’ll be harder to beat. And we’re tired. How do we stand up to something that is simply unreasonable? And Ben
understands now. When he was first diagnosed he was just a toddler. But now he knows. He understands. How am I
supposed to parent that?
What happened to my basic parental right of being able to kiss a boo-boo and make it all better? Cancer screwed me. I
already had to overcome adversity in making sure this little man had a fighting chance at life. WHAT DO I DO NOW?
Keep fighting. Keep loving him and letting him know that he saved me. Let him know that he made MY life one worth living.
And let him know I’m going to do absolutely everything I can to make sure he gets a chance to live his.
came on the radio.
For once in my life I have someone who needs me. I have someone who loves me. I’m not alone anymore.
These are just snippets of the lyrics. And even though I knew this song well enough to sing along, this time the lyrics just
slapped me upside the head. My Ben. Someone who needs me. Someone who loves me. I’m not alone anymore. Ben was
my gift. Ben was my first glimpse into the wonderfulness of what “family” was supposed to be. I did not grow up with
reasonable family relationships. I had no idea of what “family” was. By the time I was 12 my mom was off pursuing her next
husband who didn’t want to marry her until I was 18 because he didn’t want to assume guardianship of me. They were
eventually married – one month after I turned 18. My sister was seven years older than me, which wasn’t really conducive
to any sort of bonding. My biological father remarried a woman (who ultimately committed suicide when I was 18) and
chose to not have anything to do with me. My step-siblings tortured me. One of them on a daily basis – to the point where
she was kicked out of the house once her dastardly deeds were discovered. Family. Not my thing. But here I am – a
mother – and completely clueless as to how to lovingly raise this child. But I was going to do it. I had the handbook on how
NOT to do it, I would just do everything polar opposite of what I’d learned.
I thought I was doing a pretty good job.
So WHY is this beautiful child, who I love with my entire heart, being dangled in front of me? Sometimes I hear what I think
is God saying “Here he is… he’s wonderful… but you can’t have him.” WHY AM I BEING THREATENED WITH LOSING HIM
AGAIN? I thought we were in the clear. I thought that after that first tortuous treatment protocol he went through that he
was going to BEAT this. Do you know how many kids survive relapsed Neuroblastoma? This disease is so awful. When
neuroblastoma comes back it’s just saying “HaHa! I’m resistant to treatment and you won’t beat me this time.”
When a child is diagnosed with high risk neuroblastoma the treatment protocol is to throw absolutely every treatment
available at these kids. Ben had powerful chemo cocktails, surgeries, bone marrow transplant, radiation, oral chemo and
antibody therapy… everything that his little body could take. And he beat it. But now the cancer has learned. It’s stronger.
It’ll be harder to beat. And we’re tired. How do we stand up to something that is simply unreasonable? And Ben
understands now. When he was first diagnosed he was just a toddler. But now he knows. He understands. How am I
supposed to parent that?
What happened to my basic parental right of being able to kiss a boo-boo and make it all better? Cancer screwed me. I
already had to overcome adversity in making sure this little man had a fighting chance at life. WHAT DO I DO NOW?
Keep fighting. Keep loving him and letting him know that he saved me. Let him know that he made MY life one worth living.
And let him know I’m going to do absolutely everything I can to make sure he gets a chance to live his.
Then and Now...
What is Neuroblastoma?
Neuroblastoma is a cancerous tumor that begins in nerve tissue of infants and very young children. Neuroblastoma is
rare in children older than 10 years of age, however, it does occur occasionally in adults.
The tumor usually begins in the tissues of the adrenal gland found in the abdomen, but may also begin in nerve tissue in
the neck, chest, and/or pelvis. The adrenal glands are positioned one on top of each of the kidneys. These glands
secrete hormones and other important substances that are required for normal functions in the body such as the
nervous system. Most children affected by neuroblastoma have been diagnosed before the age of 5. In rare cases,
neuroblastoma can be detected before birth by a fetal ultrasound.
In the US, approximately 500 children are diagnosed with neuroblastoma each year. It is the most common tumor found in
children younger than 1 year of age. For unknown reasons, it occurs slightly more often in males than in females.
Neuroblastoma cancer cells can spread (metastasize) quickly to other areas of the body (i.e., lymph nodes, liver, lungs,
bones, central nervous system, and bone marrow). Approximately 70 percent of all children diagnosed with
neuroblastoma will have some metastatic disease.
Neuroblastoma is a cancerous tumor that begins in nerve tissue of infants and very young children. Neuroblastoma is
rare in children older than 10 years of age, however, it does occur occasionally in adults.
The tumor usually begins in the tissues of the adrenal gland found in the abdomen, but may also begin in nerve tissue in
the neck, chest, and/or pelvis. The adrenal glands are positioned one on top of each of the kidneys. These glands
secrete hormones and other important substances that are required for normal functions in the body such as the
nervous system. Most children affected by neuroblastoma have been diagnosed before the age of 5. In rare cases,
neuroblastoma can be detected before birth by a fetal ultrasound.
In the US, approximately 500 children are diagnosed with neuroblastoma each year. It is the most common tumor found in
children younger than 1 year of age. For unknown reasons, it occurs slightly more often in males than in females.
Neuroblastoma cancer cells can spread (metastasize) quickly to other areas of the body (i.e., lymph nodes, liver, lungs,
bones, central nervous system, and bone marrow). Approximately 70 percent of all children diagnosed with
neuroblastoma will have some metastatic disease.
Brave Ben after biopsy Biopsy Bandage Super Ben and sporting a new mohawk for chemo!
July, 2009
Look at this beautiful little boy. It's hard to imagine that he's not healthy. Look at his mother, Sarah.
It's hard to imagine how difficult this must be for her.
In her own words, below is their story. Please find it in your heart to make a donation to help make a
difference for this beautiful family.
It's hard to imagine how difficult this must be for her.
In her own words, below is their story. Please find it in your heart to make a donation to help make a
difference for this beautiful family.
Neuroblastoma
"WHY is this beautiful child, who I love with my
entire heart, being dangled in front of me?"
entire heart, being dangled in front of me?"
Neuroblastoma * Neuroblastoma * Neuroblastoma * Neuroblastoma * Neuroblastoma * Neuroblastoma * Neuroblastoma * Neuroblastoma * Neuroblastoma
&
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