Gold Ribbon Kids
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Copyright 2009. Isaac's Journey "where HOPE begins" Foundation. All Rights Reserved.
| Tanner Nessman Medullablastoma No Evidence of Disease (NED) www.caringbridge.org/visit/tannernessman |
My Story…
My name is Tanner. I am a fun loving and out-going kid who loves playing outside with my
John Deere Gator and helping my dad in the garage and mom water the garden. When I was
3 years old, on Oct. 30th, 2007, I was diagnosed with a brain tumor. My mom took me to the
doctor because I was vomiting and had a high fever on several occasions over a month and a
half, in and out of the hospital. Then one day, I threw up in the morning, played all day, and
complained of a severe headache. Mommy took me back to the clinic for a checkup and this
time they ordered a CT scan of my head which showed a mass. My mom and dad were very
shocked and scared. The golf ball size tumor was located in the 4th ventricle of my brain,
the most common place for tumors to grow in children.
As most kids in the nation were trick or treating in their neighbor for Halloween, I was
dressed up in a hospital gown. First I went through two surgeries to remove the tumor and
one to insert a porta cath to receive my chemo treatments. More difficult was the Vin
Christine shots. These have been so hard on my body that I twice had to learn how to walk
again and wore AMOS and SMOS leg braces along with physical therapy. I also go to
Occupational every week and have had 30 rounds of radiation . My last surgery GJ-Feeding
Tube was placed and I am being fed formula. This resulted in a blood infection. I am
currently receiving chemotherapy sessions and still receiving Vin Christine shots.
John Deere Gator and helping my dad in the garage and mom water the garden. When I was
3 years old, on Oct. 30th, 2007, I was diagnosed with a brain tumor. My mom took me to the
doctor because I was vomiting and had a high fever on several occasions over a month and a
half, in and out of the hospital. Then one day, I threw up in the morning, played all day, and
complained of a severe headache. Mommy took me back to the clinic for a checkup and this
time they ordered a CT scan of my head which showed a mass. My mom and dad were very
shocked and scared. The golf ball size tumor was located in the 4th ventricle of my brain,
the most common place for tumors to grow in children.
As most kids in the nation were trick or treating in their neighbor for Halloween, I was
dressed up in a hospital gown. First I went through two surgeries to remove the tumor and
one to insert a porta cath to receive my chemo treatments. More difficult was the Vin
Christine shots. These have been so hard on my body that I twice had to learn how to walk
again and wore AMOS and SMOS leg braces along with physical therapy. I also go to
Occupational every week and have had 30 rounds of radiation . My last surgery GJ-Feeding
Tube was placed and I am being fed formula. This resulted in a blood infection. I am
currently receiving chemotherapy sessions and still receiving Vin Christine shots.
| Blair Erin Anderson AML Leukemia 6/27/1990 ~ 3/25/2007 www.blairstreeofhope.org |
My Story…
On June 22, 2005 Blair was diagnosed with AML Leukemia at age 14. Blair spent over
320 days in the hospital out of her 550 day journey. This journey started with
chemotherapy, then a stem-cell transplant. Blair battled several infections and influenza
with time spent in PICU from Dec 24th, 2005 to Jan. 20th, 2006. She remained in the
hospital until May 2006. After surviving the PICU (which we were told most patients had
able to do things. She had a feeding tube in 5 different times and we were told it would
never come out. She was so excited to start her sophomore year and was determined to try
and be as normal as possible. Unfortunately, it seemed like she got hit with one thing after
another… only to continue to persevere.
Blair suffered so horribly through her journey – she missed her entire 9th grade. and
therefore was tutored Paula Len, a wonderful teacher who came to the hospitals and home
to ensure Blair would pass 9th grade. A funny story about this is when Paula would tutor
Blair and Blair got sick, she would pick up her bucket... throw up... wipe her face and ask
Paula to continue – she was a very determined young lady.
When she was told she could start 10th grade at Hopkins High School – she was thrilled –
finally she could be a “normal” kid and go back to school. At this point she seemed to be
doing much better but still had to take 32 pills a day and had struggles with eating along
with diarrhea…Tom and I would receive calls from the school saying we needed to pick her
up as she was sick or had an accident and had run out of her clothes we kept there on hand….
On February 5, 2007 we were told that she had a respiratory virus and it was discovered
that the Leukemia was back, this time ALL. She was admitted to the hospital where they
began treatment and cured the Leukemia. Unfortunately, the respiratory virus continued
to progress and she was once more in PICU where she remained on a ventilator to assist
her breathing until March 25, 2007 when she earned her Pink and Orange Wings at age 16.
320 days in the hospital out of her 550 day journey. This journey started with
chemotherapy, then a stem-cell transplant. Blair battled several infections and influenza
with time spent in PICU from Dec 24th, 2005 to Jan. 20th, 2006. She remained in the
hospital until May 2006. After surviving the PICU (which we were told most patients had
able to do things. She had a feeding tube in 5 different times and we were told it would
never come out. She was so excited to start her sophomore year and was determined to try
and be as normal as possible. Unfortunately, it seemed like she got hit with one thing after
another… only to continue to persevere.
Blair suffered so horribly through her journey – she missed her entire 9th grade. and
therefore was tutored Paula Len, a wonderful teacher who came to the hospitals and home
to ensure Blair would pass 9th grade. A funny story about this is when Paula would tutor
Blair and Blair got sick, she would pick up her bucket... throw up... wipe her face and ask
Paula to continue – she was a very determined young lady.
When she was told she could start 10th grade at Hopkins High School – she was thrilled –
finally she could be a “normal” kid and go back to school. At this point she seemed to be
doing much better but still had to take 32 pills a day and had struggles with eating along
with diarrhea…Tom and I would receive calls from the school saying we needed to pick her
up as she was sick or had an accident and had run out of her clothes we kept there on hand….
On February 5, 2007 we were told that she had a respiratory virus and it was discovered
that the Leukemia was back, this time ALL. She was admitted to the hospital where they
began treatment and cured the Leukemia. Unfortunately, the respiratory virus continued
to progress and she was once more in PICU where she remained on a ventilator to assist
her breathing until March 25, 2007 when she earned her Pink and Orange Wings at age 16.
| Jocelyn Irene Dickhoff Alveolar Rhabdomyosarcoma No Evidence of Disease (NED) www.caringbridge.org/visit/jocelyndickhoff |
My Story…
My name is Jocelyn Irene Dickhoff I’m a fun, energetic 2 year old who loves M & M’s and
Shrek. Looking at me you would never guess I have cancer, but on July 20, 2007, I was
diagnosed with Primitive Neuroectodermal Tumor or PNET. I started chemotherapy a week
later after having an MRI, CT, bone scan, and a bone marrow biopsy to determine where
exactly my cancer was. Thankfully it was contained to only two tumors in my pelvis and not
attached to any organs in my pelvis. My diagnosis was changed two weeks later to Alveolar
Rhabdomyosarcoma which is a muscle cancer. Rhabdomyosarcoma accounts for about 3% of
all cancers. Each year about 350 people are diagnosed with this cancer. As my luck would
have it I was diagnosed at stage four, high risk, which is the worst of its kind. Thankfully
though the tumor my parents could see and feel responded beautifully to Chemotherapy.
After my first round of chemotherapy my parents could feel the tumor getting smaller, and
after that were gone. After each consecutive round of chemo, they could feel my tumor
shrinking so they knew my treatment was working!!! The tumor they could see and feel was
near my rectum and had been there since the day they brought me home from the NICU!! My
doctor saw and felt this mass every time they brought me in for a well-child check-up, but
didn’t refer me until the mass had gotten so big that it gave me hemorrhoids! That was at
my one-year check-up!!!
My chemotherapy treatments have been done at the University of Minnesota and ACMC in
Willmar. After my first 6 rounds of chemotherapy, I was sent to Memorial Sloan-
Kettering Cancer Center in New York City where I had surgery to remove my remaining
tumors and radiation therapy. While I was there for 8 weeks, my parents and I stayed at
the Ronald McDonald House and met many wonderful people all faced with cancer! Too many!!
Shrek. Looking at me you would never guess I have cancer, but on July 20, 2007, I was
diagnosed with Primitive Neuroectodermal Tumor or PNET. I started chemotherapy a week
later after having an MRI, CT, bone scan, and a bone marrow biopsy to determine where
exactly my cancer was. Thankfully it was contained to only two tumors in my pelvis and not
attached to any organs in my pelvis. My diagnosis was changed two weeks later to Alveolar
Rhabdomyosarcoma which is a muscle cancer. Rhabdomyosarcoma accounts for about 3% of
all cancers. Each year about 350 people are diagnosed with this cancer. As my luck would
have it I was diagnosed at stage four, high risk, which is the worst of its kind. Thankfully
though the tumor my parents could see and feel responded beautifully to Chemotherapy.
After my first round of chemotherapy my parents could feel the tumor getting smaller, and
after that were gone. After each consecutive round of chemo, they could feel my tumor
shrinking so they knew my treatment was working!!! The tumor they could see and feel was
near my rectum and had been there since the day they brought me home from the NICU!! My
doctor saw and felt this mass every time they brought me in for a well-child check-up, but
didn’t refer me until the mass had gotten so big that it gave me hemorrhoids! That was at
my one-year check-up!!!
My chemotherapy treatments have been done at the University of Minnesota and ACMC in
Willmar. After my first 6 rounds of chemotherapy, I was sent to Memorial Sloan-
Kettering Cancer Center in New York City where I had surgery to remove my remaining
tumors and radiation therapy. While I was there for 8 weeks, my parents and I stayed at
the Ronald McDonald House and met many wonderful people all faced with cancer! Too many!!
| Tyler Jon Peters Myxopapillary Ependymoma No Evidence of Disease (NED) jenm24@msn.com |
My Story…
My name is Tyler Jon Peters, I was diagnosed with a rare form of cancer
called:Myxopapillary Ependymoma of the spine, on March 26, 1993. I was 9 years old
and in the third grade. At the time of diagnosis, my cancer was so rare, doctors at
Children's Hospital in Minneapolis did not know how to treat me as there was no
documented protocols available to follow. Only one other child in the world was found to
have the same tumor type in the same location, a girl, age 12, in Italy.
My cancer was located in the spinal column of my central nervous system at the L2 position
with a tumor two inches long, pressing against all of my nerve endings causing extreme pain.
I endured a risky surgery which included sawing my vertebrae in half to expose the cancer
and using a laser to shrink the large tumor in order to extract it. At the time, doctors
said I had less than a 10% chance of recurrence. They could not give me chemotherapy
treatments as blood does not flow into the central nervous system and decided to follow
me closely using MRI technology.
After only 17 months, I relapsed. This time, I was diagnosed with two tumors in the L5 and
S1 positions. Again I underwent the same risky surgery involving my vertebrae. Doctors
also ordered 35 radiation treatments and follow up MRI scans. Since my relapse I remain
cancer free. I am now 24 years old, happily married to my beautiful wife Jeni.
I have had recent back issues related to the after affects of my treatments. Some of my
vertebrae have degeneration due to the radiation I endured. I will require physical therapy
for an unknown period of time to help manage pain and I may need surgery to repair
vertebrae that continue to weaken.
called:Myxopapillary Ependymoma of the spine, on March 26, 1993. I was 9 years old
and in the third grade. At the time of diagnosis, my cancer was so rare, doctors at
Children's Hospital in Minneapolis did not know how to treat me as there was no
documented protocols available to follow. Only one other child in the world was found to
have the same tumor type in the same location, a girl, age 12, in Italy.
My cancer was located in the spinal column of my central nervous system at the L2 position
with a tumor two inches long, pressing against all of my nerve endings causing extreme pain.
I endured a risky surgery which included sawing my vertebrae in half to expose the cancer
and using a laser to shrink the large tumor in order to extract it. At the time, doctors
said I had less than a 10% chance of recurrence. They could not give me chemotherapy
treatments as blood does not flow into the central nervous system and decided to follow
me closely using MRI technology.
After only 17 months, I relapsed. This time, I was diagnosed with two tumors in the L5 and
S1 positions. Again I underwent the same risky surgery involving my vertebrae. Doctors
also ordered 35 radiation treatments and follow up MRI scans. Since my relapse I remain
cancer free. I am now 24 years old, happily married to my beautiful wife Jeni.
I have had recent back issues related to the after affects of my treatments. Some of my
vertebrae have degeneration due to the radiation I endured. I will require physical therapy
for an unknown period of time to help manage pain and I may need surgery to repair
vertebrae that continue to weaken.
Hello my name is Mitch and I was diagnosed with a malignant brain tumor called
Medulloblastoma. My tumor was spread to my spine on April 28, 2004. I have underwent
surgery to remove the tumor on April 30.
Approximately a week after surgery I was diagnosed with Posterior Fossa Syndrome and
Cerebellar Mutism, basically for a period of time I could not move, speak or swallow. I also
have full facial paralysis, due to damage to my 7th nerve.
I completed 6 weeks of Radiation therapy and Chemotherapy in January of 2005. I had
facial surgery in May and August of 2006 to address my facial paralysis with the hopes to
someday be able to close my mouth (and kiss a girl). I had eye surgery in March of 2007 to
try to correct the many issues I encounter daily with my eyes. Throughout my recovery I
received endless physical and occupational therapy to regain movement and strength. I have
not once complained or said "why me".
March 16, 2007 we received the worst possible news.... I was diagnosed with recurrent
Medulloblastoma - leptomenigeal metastic disease spread. I desperately need your prayers.
Monday, June 9, 2008 as we were headed up to Minneapolis for my stem cell transplant, we
received a devastating call from the nurse. I cannot go through with the transplant.....my
cancer has returned.... I continue my fight.
October 29th, 2008 my tumors have grown and multiplied. We're off to Sloan Kettering in
New York to try a new clinical study...
Medulloblastoma. My tumor was spread to my spine on April 28, 2004. I have underwent
surgery to remove the tumor on April 30.
Approximately a week after surgery I was diagnosed with Posterior Fossa Syndrome and
Cerebellar Mutism, basically for a period of time I could not move, speak or swallow. I also
have full facial paralysis, due to damage to my 7th nerve.
I completed 6 weeks of Radiation therapy and Chemotherapy in January of 2005. I had
facial surgery in May and August of 2006 to address my facial paralysis with the hopes to
someday be able to close my mouth (and kiss a girl). I had eye surgery in March of 2007 to
try to correct the many issues I encounter daily with my eyes. Throughout my recovery I
received endless physical and occupational therapy to regain movement and strength. I have
not once complained or said "why me".
March 16, 2007 we received the worst possible news.... I was diagnosed with recurrent
Medulloblastoma - leptomenigeal metastic disease spread. I desperately need your prayers.
Monday, June 9, 2008 as we were headed up to Minneapolis for my stem cell transplant, we
received a devastating call from the nurse. I cannot go through with the transplant.....my
cancer has returned.... I continue my fight.
October 29th, 2008 my tumors have grown and multiplied. We're off to Sloan Kettering in
New York to try a new clinical study...
| Mitch Maxey Medullablastoma 12/2/1989 – 3/17/2009 www.caringbridge.org/wi/mitchmaxey |
My Story…
Hello my name is Terrell. When I was 22 months old I was diagnosed with Medullablastoma
great living in remission. Then after 28 months of being in remission, I was told in
December of 2004 that I was diagnosed with Acute Lymphocytic Leukemia, T-Cell. My ALL
~ Leukemia ~ was caused from having chemotherapy from having Medullablastoma previously.
When I was 5 1/2 years old I went through a Bone Marrow Transplant, BMT, on March
29,2005. Then, ON JUNE 18,2007 I GOT THE ALL CLEAR & WORDS "CURED" AFTER 6
YEARS of WAITING!! THANKYOU GOD!! I am now 3 YEARS POST TRANSPLANT AND
STILL CANCER FREE AS OF MARCH OF 2008 !!!
So please continue the prayers for me and my family so that I will NEVER be faced with
another cancer diagnoses again.
great living in remission. Then after 28 months of being in remission, I was told in
December of 2004 that I was diagnosed with Acute Lymphocytic Leukemia, T-Cell. My ALL
~ Leukemia ~ was caused from having chemotherapy from having Medullablastoma previously.
When I was 5 1/2 years old I went through a Bone Marrow Transplant, BMT, on March
29,2005. Then, ON JUNE 18,2007 I GOT THE ALL CLEAR & WORDS "CURED" AFTER 6
YEARS of WAITING!! THANKYOU GOD!! I am now 3 YEARS POST TRANSPLANT AND
STILL CANCER FREE AS OF MARCH OF 2008 !!!
So please continue the prayers for me and my family so that I will NEVER be faced with
another cancer diagnoses again.
| Terrell Baumler Medullablastoma & T-Cell ALL~ Leukemia No Evidence of Disease (NED) www.caringbridge.org/ia/terrell |
My Story…
A REAL LIFE HERO. Chris was diagnosed at age 15 with T cell lymphoblastic lymphoma....
those that love him. Christopher was born a preemie and weighed 4lbs, not bad for almost 2
months early, so even back then the lad had a rough time, 1 month spent in NICU before I
could bring my little precious home.
At the age of 15 I thought he was behaving rather oddly, sleepy, antisocial and well, kind of
out of it. My mother’s instinct kicked in big time and I took him to the doctor, and had a
chat on the sly with him to ask Chris if he was depressed or into a lot of dope... first
things a mom would think with a teen! During examination, he said he heard a heart murmur,
and sent us for an echocardiogram two days later... that began the journey into hell... We
were sent straight up to the ER for a CT scan which showed a very large tumor growing on
his thymus gland... shock! We were then sent straight to The Hospital For Sick Children
and went through 2 1/2 years of chemotherapy. Christopher relapsed 3 months later and it
was decided a Bone Marrow Transplant was his only option. Transplant was done on
October 23, 2003. Christopher again relapsed with an abdominal tumor in May of 2004.
OPTIONS ~ More Chemo. Since that tumor, there have been 2 tumors; one on either side
of his heart, another again in his abdomen area. Our options were: more chemo, do nothing
and let it kill you or fight on.... Chris chooses to fight on....
Just 7 few months later another abdominal tumor! Weeks just after Christmas... spent in
hospital... very grave... yet another tumor was now touching the sack of his heart.
Radiation, bone marrow had been failing for the past couple of months...
We tried radiation, Christopher got two doses on Thursday and Friday. Christopher died
Monday, February 28, 2005… overwhelming pneumonia, or sepsis, or ARDS.
Chris taught us what strength and courage and dignity is all about, not once did he ever
complain throughout his entire 5 year battle with the beast of cancer..... He showed us all
that we have nothing to complain about, nothing to whine about, and what it takes to just
live day to day.... WE MUST NEVER FORGET OUR BRAVE CHRISTOPHER...an unwitting
HERO! As Gist would say "It's all good"
Thank you to Linda, Christopher's unrelated Bone Marrow Donor! We need more people like
you in the world... Please consider becoming a bone marrow donor and blood donor, it’s the
best gift you will ever give....
those that love him. Christopher was born a preemie and weighed 4lbs, not bad for almost 2
months early, so even back then the lad had a rough time, 1 month spent in NICU before I
could bring my little precious home.
At the age of 15 I thought he was behaving rather oddly, sleepy, antisocial and well, kind of
out of it. My mother’s instinct kicked in big time and I took him to the doctor, and had a
chat on the sly with him to ask Chris if he was depressed or into a lot of dope... first
things a mom would think with a teen! During examination, he said he heard a heart murmur,
and sent us for an echocardiogram two days later... that began the journey into hell... We
were sent straight up to the ER for a CT scan which showed a very large tumor growing on
his thymus gland... shock! We were then sent straight to The Hospital For Sick Children
and went through 2 1/2 years of chemotherapy. Christopher relapsed 3 months later and it
was decided a Bone Marrow Transplant was his only option. Transplant was done on
October 23, 2003. Christopher again relapsed with an abdominal tumor in May of 2004.
OPTIONS ~ More Chemo. Since that tumor, there have been 2 tumors; one on either side
of his heart, another again in his abdomen area. Our options were: more chemo, do nothing
and let it kill you or fight on.... Chris chooses to fight on....
Just 7 few months later another abdominal tumor! Weeks just after Christmas... spent in
hospital... very grave... yet another tumor was now touching the sack of his heart.
Radiation, bone marrow had been failing for the past couple of months...
We tried radiation, Christopher got two doses on Thursday and Friday. Christopher died
Monday, February 28, 2005… overwhelming pneumonia, or sepsis, or ARDS.
Chris taught us what strength and courage and dignity is all about, not once did he ever
complain throughout his entire 5 year battle with the beast of cancer..... He showed us all
that we have nothing to complain about, nothing to whine about, and what it takes to just
live day to day.... WE MUST NEVER FORGET OUR BRAVE CHRISTOPHER...an unwitting
HERO! As Gist would say "It's all good"
Thank you to Linda, Christopher's unrelated Bone Marrow Donor! We need more people like
you in the world... Please consider becoming a bone marrow donor and blood donor, it’s the
best gift you will ever give....
| Christopher Gist T- Cell Lymphoblastic Lymphoma 5/29/85 – 2/25/05 www.caringbridge.org/ca/christophersfight |
My Story…
Dylan had been sick for quite a while with this and that. On January 8th, his peds DX him
with Mono but sent us for a full work up. Short story of things...it wasn't Mono his white
count was 258,000. On Jan 10th, Dylan went into surgery to have a Central Line placed.
Chemo started that night. We endured and finally finished his first induction On Jan
21rst. On Jan 16 he was diagnosed with pneumonia and had a chest tube placed. It was left
until Jan 19th when it was removed. They upped his antibiotic use that weekend as he kept
spiking fevers. On Jan 19th we also received the best news.... Devin (one of the twins) is a
PERFECT match for Dylan. We had a bone marrow sample taken from Dylan on Feb 9 and he
was not in remission. On Feb 12, he was readmitted to the hospital for a different set of
chemo drugs to try to achieve remission. On March 8th, Dylan was diagnosed with a fungal
infection in his lungs. We ALSO found out he is in REMISSION (2%) on March 21rst!!!
Come to find out that was only a partial remission. Dylan was still 12% leukemic on his a
recent bone marrow biopsy. He started another round of chemo on April 9th and they will
be adding another med (Mylotarg) that he will be having on day 7th of this round.
Unfortunately this round ended in disappointment for us as his bone marrow showed 30%
leukemic. On June 15th, Dylan started his fourth round of chemo with ARA-C and
Clofarabine. On July 15th, Dylan had ANOTHER biopsy with more positive results. He
was FINALLY in an active remission at about 3 1/2% . On July 22nd, Dylan started his
5th round of chemotherapy (same as the fourth just ALITTLE stronger). Unfortunately
Dylan’s Bone Marrow aspiration showed about 14 % leukemic but we have decided to press
on with transplant since we are out of standard chemo. SEPTEMBER 20th, 2007 Dylan had
his BMT from his little brother Devin! He was HOME on October 18th, 2007 and did
REMARKABLY WELL through the WHOLE transplant procedure. On Halloween, we
received the call....Dylan is leukemic-free! Pray he stays this way forever!!!
Unfortunately Dylan had relapsed 71 days out of transplant on Dec 3...with 25% leukemic
blasts in his bone marrow. We were than off to Sloan Kettering in NYC where we did a
round of chemo called TVTG then getting into a clinical trial with them using NK cells! We
were always HOPEFUL AND NEVER BACKED DOWN......GO AWAY LEUKEMIA! After the
NK cells failed we tried one other clinical trial called FLT3's. Unfortunately that also
failed. April 1st Dylan came home...to spend time with his 3 younger brothers and parents....
April 25 we went to Florida on his MAW trip. July 5, 2008 our beloved Dyl passed knowing
how much he IS loved. ALWAYS LOVED, NEVER Forgotten....
THANK YOU to all who have given of themselves along our journey. We appreciate it more
than we could ever say.
with Mono but sent us for a full work up. Short story of things...it wasn't Mono his white
count was 258,000. On Jan 10th, Dylan went into surgery to have a Central Line placed.
Chemo started that night. We endured and finally finished his first induction On Jan
21rst. On Jan 16 he was diagnosed with pneumonia and had a chest tube placed. It was left
until Jan 19th when it was removed. They upped his antibiotic use that weekend as he kept
spiking fevers. On Jan 19th we also received the best news.... Devin (one of the twins) is a
PERFECT match for Dylan. We had a bone marrow sample taken from Dylan on Feb 9 and he
was not in remission. On Feb 12, he was readmitted to the hospital for a different set of
chemo drugs to try to achieve remission. On March 8th, Dylan was diagnosed with a fungal
infection in his lungs. We ALSO found out he is in REMISSION (2%) on March 21rst!!!
Come to find out that was only a partial remission. Dylan was still 12% leukemic on his a
recent bone marrow biopsy. He started another round of chemo on April 9th and they will
be adding another med (Mylotarg) that he will be having on day 7th of this round.
Unfortunately this round ended in disappointment for us as his bone marrow showed 30%
leukemic. On June 15th, Dylan started his fourth round of chemo with ARA-C and
Clofarabine. On July 15th, Dylan had ANOTHER biopsy with more positive results. He
was FINALLY in an active remission at about 3 1/2% . On July 22nd, Dylan started his
5th round of chemotherapy (same as the fourth just ALITTLE stronger). Unfortunately
Dylan’s Bone Marrow aspiration showed about 14 % leukemic but we have decided to press
on with transplant since we are out of standard chemo. SEPTEMBER 20th, 2007 Dylan had
his BMT from his little brother Devin! He was HOME on October 18th, 2007 and did
REMARKABLY WELL through the WHOLE transplant procedure. On Halloween, we
received the call....Dylan is leukemic-free! Pray he stays this way forever!!!
Unfortunately Dylan had relapsed 71 days out of transplant on Dec 3...with 25% leukemic
blasts in his bone marrow. We were than off to Sloan Kettering in NYC where we did a
round of chemo called TVTG then getting into a clinical trial with them using NK cells! We
were always HOPEFUL AND NEVER BACKED DOWN......GO AWAY LEUKEMIA! After the
NK cells failed we tried one other clinical trial called FLT3's. Unfortunately that also
failed. April 1st Dylan came home...to spend time with his 3 younger brothers and parents....
April 25 we went to Florida on his MAW trip. July 5, 2008 our beloved Dyl passed knowing
how much he IS loved. ALWAYS LOVED, NEVER Forgotten....
THANK YOU to all who have given of themselves along our journey. We appreciate it more
than we could ever say.
| Dylan Scott Mayo AML M4 Leukemia 09/03/99 – 07/05/08 www.caringbridgeorg/visit/dylanmayo |
My Story…
Our Blake was like any typical child, only suffering from the common cold or flu bug during
her first five years of life. However, the summer of 2006 proved to be a little different.
After a full month in June of blastball, vacation bible school and swimming lessons, Blake's
energy seemed to take a major dip. Among Cory, myself and my mother, we noticed her low
energy level and decrease in appetite. Then in August she ran a fever for several
intermittent weeks out of the month. Enough to tell us something wasn't right.
Blake was diagnosed with cancer on Tuesday, September 5, 2006. She had Neuroblastoma,
of which she was in stage 4 of the disease. Blake underwent treatment at the KU Medical
Center as well as Children's Mercy Hospital in Kansas City.
Blake started her chemotherapy treatments at KU Med in September of 2006, followed by
surgery in February 2007. On May 1, 2007, Blake was admitted to Children's Mercy
Hospital in KC, where she remained since having stem cell transplant on May 9, 2007.
After an almost year-long battle with cancer, Blake earned her angel wings on Monday,
August 13, 2007 at 6:10pm. Blake is survived by her loving family: parents - Cory & Anne,
brother - Brecken, and sister - Brynn.
Blake had sparkling blue eyes and unforgettable red hair. She was spunky, smart and very
mature for her age. She loved music and being with her friends and family. To keep Blake’s
spirit alive, her family and friends have formed the Blake Bertie Cancer Foundation to
promote awareness for childhood cancer and raise funds for research. The foundation’s
number one goal is to make a difference in the lives of children with cancer.
Blake is…Now in God's Hands...Forever in Our Hearts.
her first five years of life. However, the summer of 2006 proved to be a little different.
After a full month in June of blastball, vacation bible school and swimming lessons, Blake's
energy seemed to take a major dip. Among Cory, myself and my mother, we noticed her low
energy level and decrease in appetite. Then in August she ran a fever for several
intermittent weeks out of the month. Enough to tell us something wasn't right.
Blake was diagnosed with cancer on Tuesday, September 5, 2006. She had Neuroblastoma,
of which she was in stage 4 of the disease. Blake underwent treatment at the KU Medical
Center as well as Children's Mercy Hospital in Kansas City.
Blake started her chemotherapy treatments at KU Med in September of 2006, followed by
surgery in February 2007. On May 1, 2007, Blake was admitted to Children's Mercy
Hospital in KC, where she remained since having stem cell transplant on May 9, 2007.
After an almost year-long battle with cancer, Blake earned her angel wings on Monday,
August 13, 2007 at 6:10pm. Blake is survived by her loving family: parents - Cory & Anne,
brother - Brecken, and sister - Brynn.
Blake had sparkling blue eyes and unforgettable red hair. She was spunky, smart and very
mature for her age. She loved music and being with her friends and family. To keep Blake’s
spirit alive, her family and friends have formed the Blake Bertie Cancer Foundation to
promote awareness for childhood cancer and raise funds for research. The foundation’s
number one goal is to make a difference in the lives of children with cancer.
Blake is…Now in God's Hands...Forever in Our Hearts.
| Blake Susanne Bertie Neuroblastoma 6/02/2001 ~ 8/13/2007 www.caringbridge.org/visit/blakebertie |
My Story…
Hello my name is Tanner I was diagnosed with Stage IV, High Risk, Neuroblastoma on
August 2, 2006, just a few months before my 3rd birthday. I fought the battle of my life
and I have finished my treatment and I am currently NED (no evident disease). My
treatment included 7 rounds of chemotherapy, 10 rounds of radiation, an Autologous Stem
Cell Transplant and 6 months of Accutane. I continue to go through routine scans and
checkups to make sure my cancer does not return. We have been so blessed by the nurses
and staff at Dell Children's Hospital of Austin, Texas, who always take that extra step to
go "above and beyond", thank you! Through my entire journey I have been surrounded by my
family and friends with so much love that continue to support me. I love Veggie Tales, fire
trucks and am obsessed with Spiderman! I am not impressed with any medications that go
in my mouth and Nurse’s with blood pressure cuffs or thermometers!
We believe that God must have a special purpose in allowing us to walk this path, so we are
holding on tight, trusting Him. We thank you for your continued prayers and support!
August 2, 2006, just a few months before my 3rd birthday. I fought the battle of my life
and I have finished my treatment and I am currently NED (no evident disease). My
treatment included 7 rounds of chemotherapy, 10 rounds of radiation, an Autologous Stem
Cell Transplant and 6 months of Accutane. I continue to go through routine scans and
checkups to make sure my cancer does not return. We have been so blessed by the nurses
and staff at Dell Children's Hospital of Austin, Texas, who always take that extra step to
go "above and beyond", thank you! Through my entire journey I have been surrounded by my
family and friends with so much love that continue to support me. I love Veggie Tales, fire
trucks and am obsessed with Spiderman! I am not impressed with any medications that go
in my mouth and Nurse’s with blood pressure cuffs or thermometers!
We believe that God must have a special purpose in allowing us to walk this path, so we are
holding on tight, trusting Him. We thank you for your continued prayers and support!
| Tanner Evers Stage IV, Neuroblastoma Relapsed www.caringbridge.org/visit/tannerevers |
My Story…
My name is Nick and I was diagnosed with Osteosarcoma, bone cancer, on July 10th 2006.
I started seeing a chiropractor 4 times a week because of what we thought was injuries
received when we were rear-ended leaving school in May of 2006. After a month of
treatments at the chiropractor, I was getting worst not better. What started as a small
bump on my back grew into what appeared to be a good size goose egg. On Friday July 8th,
2006 the chiropractor sent us to have an MRI at 9 PM. The next morning they called and
wanted us back in for another MRI and a CT scan, so we went. By this time I was in
extreme pain, having difficulty sitting and putting any weight on my left leg. My parents
noticed that I had some atrophy in my left leg and hip. I was having shooting pains going
down my left leg and numbness in my left foot, typical signs of sciatic. This is what we had
thought was wrong. As it turned out the radiologist called the chiropractor and then he
called us in the lobby, to tell us it appeared to look like I had a mass or a tumor in my
lower back.
So we went home and my Mom called my Doctor and she just happened to be on call and
called back and told us to take him in immediately to Children’s Hospital in Mpls. I headed
on down to Mpls. With my parents my Dad was laying in the back of the vehicle with me as
he is disabled and unable to sit down. After viewing the CT scans and MRI's they concluded
that something was there, but what, they were not sure.
I was then told it was Osteosarcoma (Chrondoblastic), a 10cm mass in the pelvis/sacrum
area. I started chemo then went to Boston for 39 Proton treatments. After that I was
back home for 7 more months of chemotherapy. I went into remission and then relapsed in
December of 2007. I had surgery on January 30, 2008, they removed tumor from my right
lung. I was then again in remission. Once again I relapsed and I now have tumors in both
lungs, possibly in my lymph node and at the incision site from my last surgery. I had
surgery again on October 14, 2008 to place my port back in and they then removed the
tumor off of the outside of my left lung and then they removed the golf ball sized tumor
that was under the incision site from my last surgery, and also removed another golf ball
sized tumor in the lymph node. Currently we are in Houston, TX seeking more treatment to
save my life. Please continue your prayers so I gain remission and stay in remission for
the rest of my life. Thank you for all of your support my family!
I started seeing a chiropractor 4 times a week because of what we thought was injuries
received when we were rear-ended leaving school in May of 2006. After a month of
treatments at the chiropractor, I was getting worst not better. What started as a small
bump on my back grew into what appeared to be a good size goose egg. On Friday July 8th,
2006 the chiropractor sent us to have an MRI at 9 PM. The next morning they called and
wanted us back in for another MRI and a CT scan, so we went. By this time I was in
extreme pain, having difficulty sitting and putting any weight on my left leg. My parents
noticed that I had some atrophy in my left leg and hip. I was having shooting pains going
down my left leg and numbness in my left foot, typical signs of sciatic. This is what we had
thought was wrong. As it turned out the radiologist called the chiropractor and then he
called us in the lobby, to tell us it appeared to look like I had a mass or a tumor in my
lower back.
So we went home and my Mom called my Doctor and she just happened to be on call and
called back and told us to take him in immediately to Children’s Hospital in Mpls. I headed
on down to Mpls. With my parents my Dad was laying in the back of the vehicle with me as
he is disabled and unable to sit down. After viewing the CT scans and MRI's they concluded
that something was there, but what, they were not sure.
I was then told it was Osteosarcoma (Chrondoblastic), a 10cm mass in the pelvis/sacrum
area. I started chemo then went to Boston for 39 Proton treatments. After that I was
back home for 7 more months of chemotherapy. I went into remission and then relapsed in
December of 2007. I had surgery on January 30, 2008, they removed tumor from my right
lung. I was then again in remission. Once again I relapsed and I now have tumors in both
lungs, possibly in my lymph node and at the incision site from my last surgery. I had
surgery again on October 14, 2008 to place my port back in and they then removed the
tumor off of the outside of my left lung and then they removed the golf ball sized tumor
that was under the incision site from my last surgery, and also removed another golf ball
sized tumor in the lymph node. Currently we are in Houston, TX seeking more treatment to
save my life. Please continue your prayers so I gain remission and stay in remission for
the rest of my life. Thank you for all of your support my family!
| Nicholas Reamer Osteosarcoma Relapsed, Active Treatment www.caringbridge.org/visit/nicholasreamer |
My Story…
My name is Cyanna or CJ for short. I have been battling ALL T-CELL, Acute Lymphoblastic
Leukemia, since I was 5, February 16, 2006. I also have congestive heart failure as well.
Later to follow I developed a fungal infection, Mucormicosis Fungal Infection, in my port.
NO ONE HAS EVER SURVIVED IT according to Milwaukee’s Children’s Hospital. It
spread to my heart. After 2 major heart surgeries one worse than the other and doctors
telling us I was not to survive, but I did. I than developed some infection in my lungs
which caused me to undergo surgery and have a large amount of lungs removed from my
body. Again I struggled and fought and showed I could do it. I gradually got better where
I was in remission. My heart valve that was reconstructed took to my body. My lungs have
adjusted to my life and my hair grew back.
Another setback, about 3 weeks later I relapsed with less than 5 months left of chemo. My
leukemia came back into my spine and traveled into my brain which caused me to lose my
memory a bit and my legs wouldn’t work. So now I had to get a wheel chair for long
distances. We put a hospital bed into my room to help me control my head level due to
constant coughing and back to every week of hard chemo and spinal taps. My family hates
to watch the pain and suffering I go through everyday just breaks their heart. Now that I
relapsed I now have to undergo a bone marrow transfusion which we all were tested and
unable to match me with me only having one full sibling. My father and I are a half match,
but not full so now we have to find a donor. Our situation is all a waiting game and
hopefully soon we can come to an end of this suffering so I can move on in my life and begin
a normal life with my family.
October 17, 2008. REMISSION, REMISSION, REMISSION… THANK YOU GOD! As of
November 10, 2008 we are heading to Milwaukee Wisconsin for the beginning of a Bone
Marrow Transfusion.
I will never be able to run a marathon, play certain sports or do things that other children
can do, but it’s my will power and strength that has gotten me this far. I am a miracle
from God and it was my grandpa that gave my life back for he gave up his so the good lord
wouldn't take his granddaughter (thank you grandpa} My fight is not over until I say it’s
over, but my family will be here every step of the way to get me through this tragic part of
my life.
Leukemia, since I was 5, February 16, 2006. I also have congestive heart failure as well.
Later to follow I developed a fungal infection, Mucormicosis Fungal Infection, in my port.
NO ONE HAS EVER SURVIVED IT according to Milwaukee’s Children’s Hospital. It
spread to my heart. After 2 major heart surgeries one worse than the other and doctors
telling us I was not to survive, but I did. I than developed some infection in my lungs
which caused me to undergo surgery and have a large amount of lungs removed from my
body. Again I struggled and fought and showed I could do it. I gradually got better where
I was in remission. My heart valve that was reconstructed took to my body. My lungs have
adjusted to my life and my hair grew back.
Another setback, about 3 weeks later I relapsed with less than 5 months left of chemo. My
leukemia came back into my spine and traveled into my brain which caused me to lose my
memory a bit and my legs wouldn’t work. So now I had to get a wheel chair for long
distances. We put a hospital bed into my room to help me control my head level due to
constant coughing and back to every week of hard chemo and spinal taps. My family hates
to watch the pain and suffering I go through everyday just breaks their heart. Now that I
relapsed I now have to undergo a bone marrow transfusion which we all were tested and
unable to match me with me only having one full sibling. My father and I are a half match,
but not full so now we have to find a donor. Our situation is all a waiting game and
hopefully soon we can come to an end of this suffering so I can move on in my life and begin
a normal life with my family.
October 17, 2008. REMISSION, REMISSION, REMISSION… THANK YOU GOD! As of
November 10, 2008 we are heading to Milwaukee Wisconsin for the beginning of a Bone
Marrow Transfusion.
I will never be able to run a marathon, play certain sports or do things that other children
can do, but it’s my will power and strength that has gotten me this far. I am a miracle
from God and it was my grandpa that gave my life back for he gave up his so the good lord
wouldn't take his granddaughter (thank you grandpa} My fight is not over until I say it’s
over, but my family will be here every step of the way to get me through this tragic part of
my life.
| Cyanna Jane Goessl ALL T-CELL, Leukemia NED, Active Treatment www.caringbridge.org/visit/CyannaGoessl |
My Story…
My name is Owen and I am 4 years old now. I was taken to the emergency room at Kanabec
Hospital on Friday, December 15, 2007. I had a stomach and chest x-ray taken and my
parents were told to go to Children's Hospital in Minneapolis for another exam in the
emergency room. After a series of exams we were informed that I had some type of a
tumor on my liver. After another exam we headed to pre-op where I was prepped for a CT
scan. After hours of anxious waiting, it was confirmed that I did in fact have a large mass
protruding from the right lobe of my liver as well as many smaller nodules on my lungs. In
order to get a positive ID on the tumor, the doctors told us a biopsy would be needed.
Sunday afternoon I went into surgery for a biopsy, blood work, and to have a port inserted
for future chemotherapy treatments. This day was spent laughing and crying surrounded by
family and friends. I was very sore after the two hour procedure, but I was a trooper
throughout the rest of the day and night. Monday brought us the results of the biopsy and
blood work. I had “CHILDHOOD CANCER” called Hepatoblastoma, Stage IV (hepato
meaning liver, blastoma meaning malignant). My liver mass was about the size of a baseball
while there were many smaller spots of the cancer spread throughout both of my lungs.
While the findings were hard to take, we were given much hope by the doctors. Even though
only about 100 new cases of this cancer presents itself in the US each year (yes, now I
truly am 1 in a million!), the chemo regiment is promising. I have had 6 rounds of
chemotherapy and a partial tumor resection on my liver. I have finished treatment on June
5, 2008. To date I remain NED, No Evidence of Disease!
When I was diagnosed we were told that I had a 70% chance that my cancer would return.
My AFP (Alpha-fetoprotein) level is up and may indicate just that. AFP is a blood test that
is used to detect tumors that mark cancers of the liver, testes and ovaries. Life for us is
a rollercoaster and probably will be for quite some time. On October 30th, 2008 I
returned to Children’s Hospital of Minneapolis for a CT Scan the results are wonderful,
NED! My AFP however continues to rise, obviously not the news we were hoping for. The
clear scan news was such a relief, but that AFP will keep us guessing at what's really
floating around in there and “IF” cancer has returned and is hiding where the scan can't
see it. Only time will tell. Please pray my cancer has not returned.
Hospital on Friday, December 15, 2007. I had a stomach and chest x-ray taken and my
parents were told to go to Children's Hospital in Minneapolis for another exam in the
emergency room. After a series of exams we were informed that I had some type of a
tumor on my liver. After another exam we headed to pre-op where I was prepped for a CT
scan. After hours of anxious waiting, it was confirmed that I did in fact have a large mass
protruding from the right lobe of my liver as well as many smaller nodules on my lungs. In
order to get a positive ID on the tumor, the doctors told us a biopsy would be needed.
Sunday afternoon I went into surgery for a biopsy, blood work, and to have a port inserted
for future chemotherapy treatments. This day was spent laughing and crying surrounded by
family and friends. I was very sore after the two hour procedure, but I was a trooper
throughout the rest of the day and night. Monday brought us the results of the biopsy and
blood work. I had “CHILDHOOD CANCER” called Hepatoblastoma, Stage IV (hepato
meaning liver, blastoma meaning malignant). My liver mass was about the size of a baseball
while there were many smaller spots of the cancer spread throughout both of my lungs.
While the findings were hard to take, we were given much hope by the doctors. Even though
only about 100 new cases of this cancer presents itself in the US each year (yes, now I
truly am 1 in a million!), the chemo regiment is promising. I have had 6 rounds of
chemotherapy and a partial tumor resection on my liver. I have finished treatment on June
5, 2008. To date I remain NED, No Evidence of Disease!
When I was diagnosed we were told that I had a 70% chance that my cancer would return.
My AFP (Alpha-fetoprotein) level is up and may indicate just that. AFP is a blood test that
is used to detect tumors that mark cancers of the liver, testes and ovaries. Life for us is
a rollercoaster and probably will be for quite some time. On October 30th, 2008 I
returned to Children’s Hospital of Minneapolis for a CT Scan the results are wonderful,
NED! My AFP however continues to rise, obviously not the news we were hoping for. The
clear scan news was such a relief, but that AFP will keep us guessing at what's really
floating around in there and “IF” cancer has returned and is hiding where the scan can't
see it. Only time will tell. Please pray my cancer has not returned.
| Owen Szoka Stage IV Hepatoblastoma In Treatment www.caringbridge.org/visit/owenszoka |
My Story…
I was an active 14 year old when I was diagnosed with a Pinealblastoma PNET. (Primitive
Neuro Ectodermal Tumor). It is a cancerous brain tumor that they could not remove
through surgery. It had to be treated with radiation which resulted in a "no evidence of
disease" prior to starting four rounds of high doses of chemo.
I have always been VERY healthy throughout my childhood, so it has been a severe shock to
all of us for me to seem so healthy and sick at the same time. We have the most awesome
friends and family praying for a full recovery. The doctors have led us with every
intention that I will in fact have a full recovery and lead a LONG life to come.
I finished chemo on Friday March 14th, just 5 days after my 15th b-day. I have received 31
treatments of radiation, 20 of full cranial/spinal and then 11 tumor site only boost. I had
4 high dose rounds of chemo with a stem cell rescue. I have endured 8 spinal taps along
with many other procedures and treatments. I also received 4 months straight of physical
therapy, to reverse all the peripheral neuropathies caused by the 8 doses of Vincristine.
We had a very exciting Make-A-Wish trip April 26th to May 3rd. I chose to go on an
Eastern Caribbean Disney Cruise. In May 2008 I was the Jr. Grand Marshall to our local
Relay for Life. In July, we had an End of Treatment Party with 90 of my closest friends
and family. July 19th I went to my first concert and had a real good time. November '08 I
was an honored guest of the Philadelphia Eagles Organization, with on field practice time
passes and the best seats in the house Section 101, Row 1, nothing in front of us but the
players and coaches, oh and cheerleaders! October '08~ New Orleans, LA. . . Fun Mystery
Trip through CHOP.
We send e-hugs to each and every one of you! Your support and encouragement has really
meant to world to us throughout this strange path that we are traveling on.
Neuro Ectodermal Tumor). It is a cancerous brain tumor that they could not remove
through surgery. It had to be treated with radiation which resulted in a "no evidence of
disease" prior to starting four rounds of high doses of chemo.
I have always been VERY healthy throughout my childhood, so it has been a severe shock to
all of us for me to seem so healthy and sick at the same time. We have the most awesome
friends and family praying for a full recovery. The doctors have led us with every
intention that I will in fact have a full recovery and lead a LONG life to come.
I finished chemo on Friday March 14th, just 5 days after my 15th b-day. I have received 31
treatments of radiation, 20 of full cranial/spinal and then 11 tumor site only boost. I had
4 high dose rounds of chemo with a stem cell rescue. I have endured 8 spinal taps along
with many other procedures and treatments. I also received 4 months straight of physical
therapy, to reverse all the peripheral neuropathies caused by the 8 doses of Vincristine.
We had a very exciting Make-A-Wish trip April 26th to May 3rd. I chose to go on an
Eastern Caribbean Disney Cruise. In May 2008 I was the Jr. Grand Marshall to our local
Relay for Life. In July, we had an End of Treatment Party with 90 of my closest friends
and family. July 19th I went to my first concert and had a real good time. November '08 I
was an honored guest of the Philadelphia Eagles Organization, with on field practice time
passes and the best seats in the house Section 101, Row 1, nothing in front of us but the
players and coaches, oh and cheerleaders! October '08~ New Orleans, LA. . . Fun Mystery
Trip through CHOP.
We send e-hugs to each and every one of you! Your support and encouragement has really
meant to world to us throughout this strange path that we are traveling on.
| Austin Myers Pinealblastoma PNET NED www.caringbridge.org/visit/austinmyers |
My Story…
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