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One Family's Devastating 'New Normal' After Losing An 11-
Year-Old To Cancer
My Talan. He's a leukemia warrior. He's 8 years old and he's just a regular kid. We call them
"warriors" and "heroes" and "fighters" but really they're just kids... kids who are fighting a battle
much bigger than any of us and nobody asked them if they were up to it. So when I say he's a
regular kid it's because the worst part of his treatment is over and he's getting back to doing the
only thing he should have to do right now. He's being a kid.
This photo was taken a year to the date and I've never been able to get over the difference in his
appearance. These kids live through hell. The worst part is knowing that as a parent you can only
walk so far down that road with them. Talan would get sick to the point of bile. I wanted to comfort
him so I'd reach out to rub his back or touch his neck with a cool rag but he'd put his hand up and
without looking at me, in the best voice he could muster he'd say "No." That was the most profound
moment as a parent caring for a child with cancer. He had to do the really bad parts alone and I
could only watch. -- Tevin Yarger
This is my daughter Kasydi. She was diagnosed with ALL last year on July 15th at just 3 years old. It
took two months of her constantly being sick to get her diagnosed with something other than
anemia. As you can tell from this picture she is a very smiley little girl. She's so strong and brave. I
am so proud to be her mom. -- Krystal Stephenson
I have a 4-year-old daughter who was diagnosed with a brain tumor at 2 1/2. Her name is Reese.
After that she had a failed chemo and another couple brain surgeries. We started new chemo and
shrinkage for those 16 months. Her last chemo was April.
She has been in the hospital for a month for assumed meningitis, she was in septic shock another
month. She shared an IV pole with me when I gave birth to our baby girl last December.
She is my middle monkey of my five under 8, and a huge piece of my heart. -- Amanda Skelte
My 2-year-old son who was diagnosed with Ewing's Sarcoma in April 2010. He is currently four
years in remission and attending first grade. -- Julie Taylor
Our son Joey was diagnosed with ALL when he was 3 years old. We are coming up on his one-year
diagnosis anniversary, and we have treatment planned through January 23, 2017. Joey loves nothing
more than his big sister and every single one of Zofran lawsuit her interests. -- Angie Worzala
My youngest out four kids is fighting brain cancer medullablastoma. His tumor was removed
completely. His name is Isaac and he's 7 years old. He finished six weeks of proton radiation/chemo
and he has to complete six rounds of chemo. He has completed two rounds. He has definitely
brought out the strength in me. He is so giving, caring, and he is my hero. I have always known
there was no bigger love than a mothers love for her children and this reassured me that. -- Nilsa
Dominguez
This is my son, Connor, 10 months after being diagnosed with DIPG. He looks healthy and full of life,
right? That's because the only course of treatment for this terminal on diagnosis cancer is radiation
treatment. Radiation is a palliative measure to buy time and results in minimal hair loss.
He lived 16 months from diagnosis and died less than six months after this picture was taken. In
fact, he looked so healthy, at our Make-A-Wish trip to Disney, we were politely asked (over six times)
to move from the "special line." He looked normal but was much worse off than those who had
treatment options. -- Mariam Johnson
Here is our story about my 3-year-old daughter's cancer survival and miracle.
Grace was diagnosed soon after birth with neuroblastoma stage 4s. The 37 week ultrasound showed
an abnormality and soon followed 3 full weeks until delivery of anxiety, more ultrasounds, so many
doctors, and no answers.
She was born healthy (it seemed) on her due date and came home with us days after. She showed no
signs of stress except a lag in gaining weight. At 4 weeks old her left adrenal gland was removed and
found to be lemon sized. The following treatment was a wait-and-see approach since 4s can spread
all throughout the body without pain or ill effects. The cancer spread to her liver, right adrenal
gland, and God knows where else in her body. We had the least invasive approach of regular
ultrasounds and frequent check ups at Portland Oregon's OHSU Doernbecher Children's Hospital.
At 10 months old, without chemo or radiation, with only love, this precious miracle tested cancer
free. She's been cancer free since.
Grace is an amazing person to experience and she lives life full speed ahead. -- Sophie Grow
This is my son Gavin, diagnosed at age 3 with leukemia. He is now 5 and loves to tell people he
kicked cancers butt! He has two years of chemo left and then he will get to call himself a survivor! --
Charlie Mayes
My daughter, Caliah, was diagnosed with ALL leukemia at the age of 3 in 2010. She is four years in
remission now. Cancer has changed our lives and opened our eyes to the awareness we need to
have. We are very blessed that Caliah responded to well to therapy and is a healthy 7-year-old now. -
- Mindy Russell
Our son Jack was diagnosed with a rare and aggressive brain cancer roughly two months ago and we
are currently undergoing treatment at St. Jude in Memphis, TN. Like many families, we had no idea
until his behavior started to change around the first of July 2014 and an MRI revealed a large tumor
inside his brain. Two brain surgeries in Omaha, NE were done to remove the tumor but it was
necessary to have a third surgery in Memphis, TN when Jack's head developed an infection. Once
the infection was under control, Jack was allowed to start chemotherapy.
We are currently in our third week of chemotherapy with roughly 13 more weeks in our plan. At that
point, Jack will need to undergo radiation therapy to help fight this disease for the long haul followed
up with six more months of chemotherapy. We remain hopeful that our "Super Jack" can do this. He
shows his strength and resiliency more and more each day.
His mom (Sarah), his brother (3-week-old Jase) and I are at his side every step of the way cheering
him on. He also has his grandparents, aunts, uncles, and cousins keeping his spirits high all over the
country through technology. --
Sarah Oberhauser Speichert
Almost three years ago, my (then) 3-year-old daughter was diagnosed with acute lymphoblastic
leukemia. It was caught through a blood test. Within days, my seemingly healthy child was fighting
for her life.
I am happy to say that today, at the age of 5, Maya is cancer free. She finished chemotherapy this
past June and began kindergarten a few days ago. Aside from some complications as a result of the
intense chemotherapy she received, Maya is doing well and we hope it will remain that way always.
We will forever live with the fear of her cancer returning though. Our entire world has changed and
we are incredibly grateful that our daughter is still with us. We know how different things could be. -
- Jo-Ann Annunziato
My son Simon was diagnosed with clear cell sarcoma of the kidney at 12 months. He braved seven
months of chemo and was off treatment for two years when he developed an inoperable brain tumor
earlier this year.
He is finishing treatment of intense chemo and had 28 radiation treatments. He has endured three
surgeries including having his right kidney removed. He hates his pokes but has gotten so brave. I
hate that he thinks this is normal and feels everyone is staring at his bald head. -- Gretchen Leavitt
I am mother to four. My eldest Jennifer aka JLK was diagnosed on her 6th birthday Oct 28th, less
than a year ago with DIPG -- a brain tumor that is terminal upon diagnosis. She lived with treatment
3.5 months.
We are broken and devastated... we believe she is in a better place. I miss my daughter and they
miss their sister. The whole world is missing out on the chance to know her. Some girls are just born
with glitter in their veins and I truly believe my daughter was one of those. -- Libby Kranz
Our neighbor and dear friends' little boy Alex was diagnosed March of 2011 with stage 4
neuroblastoma. Alex passed away July 8, 2013 from this horrible disease. -- Jill Joan
My son Landon Jaymes Willis was diagnosed with hepatoblastoma at 19 months old. He passed away
just 36 hours later, taking his final breath safe in my arms.
He lived a devastatingly short but very full and happy life. In an instant my husband's life and mine
had changed forever. Now our new reality is learning to live with a broken heart in a world where
our sweet angel no longer exists until we can be together again. -- Tiffany Willis
Our son Blake was diagnosed with acute lymphoblastic leukemia (ALL) on December 29th, 2008. He
was 2-years and 4 months old when he was diagnosed. His baby sister, Alexia, was born only 18 days
after he was diagnosed. We had just gotten the kit for her cord blood, which was banked by CBR for
free due to her brother's life threatening illness. Blake was in treatment for leukemia until April
21st, 2012. His treatment lasted a total of three years and four months. He went through many
hospitalizations, various chemo treatments, blood and platelet transfusions and outpatient visits.
With his suppressed immune system we had to avoid large groups of people as well as sick friends
and relatives. For the first year after he completed, he went back monthly for blood draws, last year
it was every other month, he still goes in every three months for blood draws to make sure the
leukemia hasn't come back. He is now a happy, healthy, 8-year-old boy! -- Travis and Desiree Parrack
This is our precious boy Eli Mason Vela. He just turned two August 6th. He was diagnosed with
acute lymphoblastic leukemia six weeks before his 2nd birthday. He will go through three years of
chemo treatments.
It has been a huge adjustment to our family's life, but we are determined to stay strong and help our
fighter through this. -- Crystal Vela
My 3-year-old son, Luke, was diagnosed with ALL in March 2013. He had a very rough time with
chemo in the beginning, resulting in long hospital stays and an alternative treatment plan. He is in
remission, however, doing really well, and will continue treatments for a total of three years. -- Jill
Guerrero
This is my daughter Logan, shaving her pediatric oncologist's head at a a St. Baldricks event. To me
it represents the love, friendships, and support we have received throughout my daughters
treatment for leukemia. Although it has been a long hard journey, the friendships and bonds that
we've made are irreplaceable. Her doctor is a huge supporter and shaves his head every year to
support childhood cancer research and his patients. -- Ashley Finney
Aidan is one in a set of triplets, with two sisters. They were born at 29 weeks weighing less than
three lbs. Aidan was born with a condition that required a skull remodeling at the age of 4 months
old. Fast forward to less than a month before their 2nd birthday, Aidan fell and hit his head, leaving
him unresponsive. A CT scan revealed a mass in his brain, completely unrelated to the fall. Upon
removal of the tumor, it was determined to be an astrocytoma. Fifteen months of chemotherapy
later, he finished treatment in March 2014. Though he will never be "cancer free" because of
remaining tumor, he is free to be a typical almost 4-year-old again. -- Courtney Trumbauer
This is my daughter Abby. She passed away in February 2014 at age 5. Her official diagnosis was
parameningeal sclerosing rhabdomyosarcoma, which she fought for three years. After relapsing the
second time, we were told that there were no trials available to her because her type of cancer was
so rare, and to take her home and love her.
I feel this picture represents our journey because it's not the happy, St. Jude's face that you always
see in commercials. She went through more than a dozen surgeries, close to 40 rounds of chemo, 33
days of radiation and she ended with part of her tumor growing out of her eye and losing her vision
in both eyes. -- Katie Hanway
My son Prestun is stage 4 neuroblastoma. He just relapsed from this horrible monster. To make
matters worse he relapsed in the brain and is preparing for removal next week.
He is calling all superheroes. His birthday is September 17 and instead of toys, he wants to honor all
superheroes around the world. -- Tiffany Seibel
My beautiful daughter Charley has brain cancer. She just turned 1 on August 13th. She was
diagnosed with brain cancer at 4 months. She has been in treatment since December 2013 and she
has about seven months left of treatment. -- Heather Howell
Our son Sam was diagnosed with medulloblastoma in 2009. Full resection of brain tumor, six weeks
of radiation, 52 weeks of chemo. An amazing journey filled with a roller coaster of emotions. Cancer
free for four years now. We feel blessed. -- Erica Mahoney Robinson
This is my 18-year-old son, Raistlin Hobbs. He was first diagnosed with Ph+ ALL or Philadelphia
chromosome positive acute lymphoblastic leukemia, on March 21, 2008 at the age of 12. He
underwent chemotherapy treatments and radiation treatments and ultimately had a bone marrow
transplant in July 2008. He was in remission for six years and the doctors thought he had this beat.
On January 30, 2014, we found out that he had relapsed. He has done more chemo, but could not
have radiation because he had the maximum amount in 2008. He underwent a second bone marrow
transplant in July 2014 and is still in the hospital recovering. The chemo and radiation have affected
his liver, lungs, and kidneys. -- Sharon Hobbs
My son, Carson, has been battling T-cell acute lymphoblastic leukemia for two years now. We are so
blessed to have such a strong, little man who is kicking this cancer with all his might. We pray he
will never relapse, however that is always in the back of my mind -- that possibility. So today we
treasure what we have. -- Kim Grassan Lenardson
This is my baby cousin Sterling Avery. Sterling was diagnosed with (Ph+)ALL in December of last
year, her and her mother Laura J Miller were flown by air ambulance immediately to a neighbor
island in Hawaii. That is where they have stayed, they haven't set foot in their own home or seen any
of their friends in nearly nine months now. Most recently, Sterling suffered the complete and
permanent loss of her hearing due to one of the medications used to save her life from a horrible
disseminated fungal infection. She is a true FIGHTER. -- Julie Thompson
This is my son Aaron. He was diagnosed at 4 years old with ewing's sarcoma stage 4. He underwent
14 rounds of chemo, 28 rounds of proton beam radiation (five hours away from home), a feeding
tube, three surgeries, relearning to walk, and everything else that goes along with treatment. Aaron
is now 7 and has his two-year scans scheduled for October 21. His passion is giving back and he
loves his family at our hospital. He would donate everything we have to kids in need and for that and
so many reasons he is my hero. -- Beth Stein Pinsky
This is my son Josh. He was diagnosed with leukemia on November 24, 2010, and finished treatment
on March 7, 2014. After his first year of intense chemo, he returned to the football field, some days
playing immediately after leaving the hospital after his chemo infusion. To celebrate six months off
treatment, Josh, his brother Keagan and I will shave our heads to raise money for St. Baldrick's so no
other child has to go through what Josh has. When he grows up, Josh wants to play in the NFL, and
when he retires, he wants to be a pediatric oncologist. -- Laura Burt Pita
My daughter Adriana, age 3, soon to be 4, was diagnosed with ALL (leukemia). It was found in her
blood, spinal fluid, and brain. She's finished her aggressive part of treatment (spinal chemo, IV
chemo, oral chemo, and full cranial radiation). She's now in maintenance phase and looks forward to
being done with treatment October of 2015! Despite all of the hospital admissions and aggressive
treatment she has undergone she's been a huge inspiration by her constant upbeat attitude,
courage, and strength. She's truly amazing. -- Nicole Riggott
My bonus son is 7 and was diagnosed with a rare undifferentiated sarcoma in March 2014. He has
undergone 16 hours of surgery, spent 48 nights in the hospital, received 22 chemotherapy infusions,
31 consecutive days of radiation, and 6 blood/platelet transfusions. He's been a remarkably brave
kiddo during these past eight months. We are so proud of him. -- Jacqueline Rice McKenzie
My daughter, Saoirse Fitzgerald, was diagnosed at 11 months old with stage 4 high risk
neuroblastoma. Her diagnosis came just a little more than three months after I was diagnosed with
hodgkin's lymphoma. With two primary tumors (rather than the usual one), nMYC amplification and
poor biology, there was little chance that she would respond to treatment at all. But she did, and she
did it all while having a smile on her face through all of her treatment (while I needed to nap way
more often).
But neuroblastoma is a tricky beast, and she relapsed just two weeks after she was declared NED.
NB took her life just six weeks later. She laughed through everything and made everyone happy
when she entered a room. This photo was taken just weeks before she died. Even though her body
was filling with new tumors, she still took joy out of every day! -- Kezia Fitzgerald
Our daughter is one of the lucky ones. She was diagnosed with acute lymphoblastic leukemia at 23
months old. Twenty-five months later we celebrated the end of her treatment and now she's a year
off treatment and attending kindergarten as a happy, healthy girl. Each of the beads on the 16'
strand in her hands is a procedure, transfusion, chemo, poke that she powered through on her way
to good health. -- Amy Martin
This is my sweet Caden. At 22 months old he was diagnosed with brain cancer. He is the sweetest,
most gentle soul I have ever known and life without him here on earth is so hard. Knowing he is in
the hands of our Lord brings me comfort but missing him never ceases. Caden went to Heaven at 2
1/2 years old, 9 months after his diagnosis. Childhood cancer unfortunately came into our lives, and
it will never leave. Raising awareness for the terrible diseases that plague our children is an ongoing
battle. Caden, forever in our hearts. -- Amanda Jake
My daughter Jasmine was 6 months old when we found out. She survived four times longer than
what the doctors thought, ATRT is a very rare type of brain cancer and does not have many forms of
treatment. She passed away two years and 11 months ago. Jasmine was and is an inspiration to all of
us. -- Jodie Uhl
My daughter, Samantha, is one of the lucky ones. In the realm of childhood cancer she had it easy --
in/out of treatment within 4.5 months for a neuroblastoma tumor with little chance of relapse or
secondary cancer due to treatment. The reality is that the average length of treatment for any
childhood cancer is one year and a lot of the time the treatment for the cancer can cause secondary
cancers and/or other health issues for a lifetime. -- Alyna DiGiacinto Harrall
My niece, Grace, is 9 years old and has relapsed twice with neuroblastoma. She says herself that she
will never give up. -- Katherine Kenneally
"I wish I may, I wish I might have my superhero port out tonight" My little one, Jasper was
diagnosed with high risk pre B cell acute lymphoblastic leukemia in January of this year. He will be 3
on Halloween. He pretends he often is a doctor and knows more than most little children and adults
even imagine. You never know what will be knocking at your backdoor ... let alone cancer. -- Jennifer
Franks
Grace has Ph+ leukemia but we are learning how to find a way to smile, laugh, be thankful, and how
to help others no matter what life brings. Grace helped start a petition for more Ella Chemotherapy
Barbie to help others. Cancer can't stop this little girl from making a difference! -- Melissa Bumstead
This is our Emily. She was diagnosed with PreB cell ALL on September 24, 2013. We went from
worried to sobbing and then saying, "OK what do we have to do?" Since then she has passed the
fourth grade, turned 10 and gone into maintenance phase. I love how brave and strong she is, she
has taught us all so much. -- Randy and Jen
Our 15-year-old daughter was diagnosed with acute lymphoblastic leukemia in 2002, just before the
beginning of her sophomore year of high school. Cancer sucks. Too many missed school days lying
on the couch... too many days in the hospital... too many friends who didn't make it. -- Marey
Blackwell Richins
My daughter Amy was 4 1/2 when she was diagnosed with stage IV wilm's tumor. This picture was
from her 5th birthday. Through all the radiation, chemotherapy, and hospitalizations she never lost
what makes her "Amy." She is an 11-year, healthy survivor. She has been an inspiration to many
adult family members who have fought this terrible disease. -- Adrienne Zimmer Tignino
This is my daughter Victoria. She was diagnosed at 6 months old with AML. She went through five
rounds of high dose chemo and was inpatient for six months. On October 14, 2014 she'll be in
remission for four years! -- Heather Hernandez
Our daughter, Marielle, was 3 years old when she was diagnosed with acute lymphocytic leukemia.
She is now 12 years old, a survivor, but she has cognitive effects from the chemotherapy that was
put into her spinal fluid, while her brain was still developing. So, though physically healed, she
carries the scars forever, in her brain. She has dyscalculia, slow processing speed, writing
difficulties, executive function problems and more. -- Marie Lappin
Our daughter Nicole (then 11 on January 25, 2012) complained of knee pain off and on for about
month and was diagnosed with osteosarcoma left distal femur. Her and I moved to Seattle (3 1/2
hours away, leaving my husband home with our four others) where we lived at the Ronald McDonald
House and she received treatment at Seattle Children's.
She endured 18 rounds of chemo, a total of nine surgeries (the major one was having 6" of her femur
removed and replaced with a donor bone with plate and screws). She had surgery on her good leg to
stunt the growth, and her most recent one was in February of this year to replace the rod as it had
shifted in her leg. After 30 weeks of treatment and 2 1/2 years of being on crutches, we now face her
two-year post treatment scans In October in Seattle and pray she continues to have no evidence of
disease. Nicole is a tough girl and has endured this with minimal complaining and a strength beyond
anyone her age should ever have to endure. -- Karen Sikkila St Martin
My daughter Ella was diagnosed with stage 3 neuroblastoma at 7 months old. She is stable now at 3
years old, but continues to have some tumor on her spine and abdomen and is left with bowel and
bladder issues. -- Michelle Tremblay Reese
Our Brave Little Man, Zion-Vaioleali'i, was diagnosed with a form of brain cancer called
ependymoma, on March 6th, 2014. He had just turned 2 years old and we've now been in hospital for
seven months, with another few months to go, possibly spending Christmas in hospital as well. We've
now completed four cycles of chemotherapy, and now radiation is on the cards for our little boy. We
have shed many tears over these last few months, but we have definitely shared more smiles than
tears. We have such an awesome support network, family and friends, unknown strangers, angels in
disguises. -- Anahera-Aroha Natalie Hawira
My daughter's beautiful friend is a survivor of retinal blastoma. The thought of not having this
special, wonderful, little girl in our lives leaves me breathless. I hate cancer for so many reasons,
how dare it try to steal her from us??? -- Erin Williams
My son has a very rare desmoid tumor. Although it won't metastasis, it is a very difficult tumor to
treat. He is off chemo and doing great. These children (all of them) are my heroes. They are so brave
and gracious and take all this crap that is thrown at them with such strength. I have learned so
much from all of them the past two years! -- Kathy Delmore Veeck
-- Courtney Holland Tipping
Ethan Kerr was diagnosed with acute lymphoblastic leukemia two weeks before his second birthday.
The first 14 months were very hard. We nearly lost him many times. He has cerebral palsy and
epilepsy as a result of a septic event. The chemo itself caused other types of seizures. He has been
OFF treatment for six years now. He has been my hero every step of the way. He is the strongest,
most courageous person I have ever met. I am so proud that this young man is my son. -- Jessica Burt
Kerr
My son Austin Stitzer lost his battle to brain cancer. -- Wendy L Dobson
Dorian was diagnosed with stage 4 alveolar rhabdomyosarcoma at 4 years old on April 26, 2012. He
fought for 15 months and ended his treatment with clear scans. Six months and 11 days later, four
days before Christmas in 2013, he relapsed. There is no 'standard protocol' for relapsed Rhabdo, so
it's all a guessing game right now, but Dorian is doing so well! He has completed 103 radiation
treatments, and countless chemotherapy treatments, blood transfusions, platelet transfusions,
surgeries... He has been through so much. He is my hero. Every single day. -- Melissa Doty Murray
My survivor Siena! This was taken just a few weeks ago. She is one year off treatment for ALL. She
was just 2 at diagnosis and is now 5 and in kindergarten! We need better treatments... I write this
from a hospital room where we are dealing with side effects from chemo. We've been here five days
already. She's a fighter! -- Laura Hernandez
-- Jenni Gillespie Helms
This is my son Aiden. He will turn 3 in here on September 14th. He was diagnosed with stage 4
neuroblastoma in March and he is now in the hospital getting a bone marrow transplant. He is my
hero and Rocky Balboa's biggest fan! -- Matt Young
My daughter Natalija was diagnosed almost two years ago at the age of 3 with a brainstem tumor.
She did 18 months of chemo and at the first MRI post treatment, the tumor had grown. She just had
a biopsy three weeks ago and we are getting ready to start another round of chemo. Childhood
cancer is a parent's worst nightmare. I wish I could take it all away from her. I would give anything
to get her healthy. We pray and never ever give up! -- Stephanie Tenzera Reade
My son Porter, 11 years old. He was diagnosed with acute lymphoblastic leukemia in October of
2012 at age 8. Has been going through chemo since. He will finish in January 2013, after 39 months
of treatment. We've been to Hell and back, meet many new, inspiring friend on this journey and
kiddy way too many. Pediatric cancer is a terrible life to live. -- Jen Haley
This is Tatumn and the last healthy Christmas we had with her. She was diagnosed at the age of 3
with a DIPG brain tumor. She is the youngest of four kids and suffered for 5 1/2 months before she
died. Our family is heartbroken. She was kind, sassy and full of love. She adored her siblings and
copied everything they did while also keeping them in line. She died in February of 2012 and it still
seems unreal. We are lost. We miss you sweet baby. -- Bonnie Fuller Woodworth
One week from diagnosis of DIPG Jayden passed at 3 1/2 years old. -- Angela Fogg Borrell
Our son Saxon is 11 and on his second battle with beating cancer. He was first diagnosed in January
2013 with wilms tumour and after nine months of treatment went into remission. In April 2014, a
routine scan showed the cancer had returned and he had relapsed. Treatment is very intensive with
one week in hospital for chemo and two weeks home recovering over and over for the next 24
months. He is very frightened of dying and can't understand how he could be so unlucky. How do
you answer those sort of questions? The treatment has taken away his childhood, opportunity for a
normal education, sport, his role within his school class due to absence and made him socially
isolated from his peers. He will be starting a new high school in a year still in treatment and still
with no hair. As a family we will never be the same. As the picture shows, he is very resilient and a
true trouper and even when he is at his lowest, tired and angry and feeling like vomiting from the
chemo he still tries to smile. He is definitely my super hero and I am incredibly proud and honoured
to be his mum. -- Chris Stilian
Our son Noah is 6 years old and was diagnosed with ewing's sarcoma in April 2014. He just
completed three months of chemo (had some delays due to low counts along the way) and is starting
his next phase now, which is chemo/radiation combo. Noah is an amazing boy who's character and
love for others has never changed despite the multitude of things he's had to endure. -- Scott Wilson
Our son Angus, age 11. He was diagnosed with ewing's sarcoma in June 2014. Three months of
intensive chemo down, major surgery in a couple of weeks. It's hard to understand unless you've
seen it first hand! And at 11, he also worries for himself. How do you respond when your otherwise
healthy child asks if he is going to die? No child should ever have to contemplate their own
mortality. -- Tracy Hollington
It's a never-ending journey, even after treatment, because now we deal with long-term side effects
from the treatment. However, I'd choose side effects before the only other option of
death.(Neuroblastoma stage iv survivor Kaitlyn August.) -- Colleen Sleer
Our daughter Ellerie Anderson is fighting medulla blastoma brain cancer. We are fortunate in that
she is a fighter and the amazing neurosurgeon was able to resect the tumor completely before we
started chemo. We are now one-third the way through the treatment assuming no other problems
arise. We try to celebrate one thing every day -- no matter how big or small.
It makes this more bearable and keeps us moving forward even when we have bad days. We have
had the pleasure of meeting so many other families, fighting different cancers for their own brave
little ones and it has made me realize how little we know about cancer, let alone childhood cancer. --
Scott Wendy Anderson
My warrior princess and her amazing caregiver sister. -- Jenifer Stephens German
Our oldest son Jayson is 9 years old and was diagnosed less than a month ago with TCell ALL. I
thought he had a stomach bug. We are heartbroken and in shock. He's been through so much these
last few weeks and is responding well to treatment. We are praying and putting our faith into God
for healing and recovery. No kid should have to endure this pain!-- Yvonne Devine Irizarry
My daughter Lilly was diagnosed at 18 months old with clear cell sarcoma of the kidney. She has
gone through surgeries, six radiation treatments, and nine rounds of chemo. She completed
treatment three weeks ago. -- Kellie Fisher
Landyn Alexis was diagnosed on December 29, 2009 at 7-months with atypical teratoid rhabdoid
tumor. Numerous surgeries, chemo, radiation, transfusions, medications, seizures, hydrocephalus,
and pneumonia. She passed away July 25, 2010. ATRT had a ten percent survival rate. That means
nine out of ten kids die. Awareness and money are the only way to raise money to research a cure. --
Becca Tickle
Never knew worry until my son was diagnosed with leukemia. Past three years have been
indescribable! -- DeAnn Tucker
This is Wicho Dominguez -- Lana De Leon
Cara Rae was 22 months old when diagnosed with leukemia, picture taken at her no more chemo
party four weeks ago! Little boy pictured won a scavenger hunt contest and donated it to Cara right
after she was diagnosed. -- Trisha Bailliez Kielty
This is my son, Joshua. He was diagnosed with an ependymoblastoma (aggressive brain tumor) at
30-months. He is going to turn 19 years old this month. He survived, but has severe disabilities as a
result of his treatment. He has unrelenting seizures and wears a helmet still after all these years. He
is sweet, innocent and functions at the level of a 7-year-old. He has severe hearing loss, severe
osteoporosis, and has had three 11-hour or more brain surgeries to remove the tumor and, most
recently, to try and control the seizures. My hero, Joshua. -- Renee Perkins-Curkendall
This is Thea. She just started second grade and has been fighting a brain tumor since she was 4
months old. She has had a stroke, lost most of her vision, has hormonal imbalance, eating issues,
growth deficiency, hydrocephalus and a shunt (and several shunt revisions, after one of which she
had to learn to walk again) and has been through a total of five years of chemo, over her seven years
of diagnosis. She will be starting again, next week, after a short break. Yet, we still consider
ourselves lucky. She is still with us. We are huge advocates for finding better treatments for
pediatric brain tumors. Kids shouldn't have to suffer the side effects and long term problems that
come along with cancer treatment. They have entire lives to live. -- Trisha Tobin Danze
-- Brandy Duggar Myers
My son, Cody, is a strong kiddo and we're blessed and pleased that he is doing so well. He also
ended up with hypothyroidism which, thankfully, is easily treated. He has also overcome the bone
density issue over the last couple of years of supplementation and weight bearing. He is a tough kid!
-- Brenda Kelley
This is our son Keaton. He was diagnosed with infant acute lymphoblastic leukemia at the age of 11-
months in 2009. He went through multiple rounds of chemotherapy, radiation and a bone marrow
transplant with the donor being his older brother. He did well for over four years. Until March 6th,
2014 when after http://www.everydayhealth.com/drugs/ondansetron weeks of being sick he was
diagnosed with secondary acute myeloid leukemia. Secondary essentially meaning, that this new
cancer was a result of his treatment for his first cancer (we were told this was a possibility but very
rare). Almost immediately he fought a viscous fungal infection that almost took his life but he pulled
through. He went on to again receive chemotherapy and a SECOND bone marrow transplant (this
time the donor was baby sister).
He is currently almost three-months post transplant and in remission! Secondary AML does not have
great long term statistics so our prayer is that he stays in remission. -- Sarah Helmes Traffie
My daughter, Danielle, was diagnosed with high-risk acute lymphoblastic leukemia on January 15,
2011. The first picture is during the roughest part of treatment. The second picture is on the day she
had her last IV chemo. What these capture is the smile that rarely left her face. -- Amy Samsury
Ben Sauer gave us ALL more reason to live. His family is by far, one of the most remarkable families
alive. Fly high, sweet Ben. -- Vanessa Caisse
My son is my hero! He was diagnosed with stage 4 wilms tumor at age 3. He endured six months of
chemotherapy and radiation treatments. He has been in remission for five years now and is healthy,
active third grade boy. Mental health is important during a cancer diagnosis! I suffer from PTSD,
every time my kids have a fever and Tylenol doesn't crack it right away. I have an irrational panic,
paranoid of "worst case" scenarios. Cancer is genetic -- both myself and son are survivors. All of my
kids carry rare gene. I am now a full time nursing student, focused on pediatric oncology when I
finish my BSN. Cancer is going to be a part of the rest of our lives --- whether or not we want it to.
Once touched by this disease, there's no turning back innocence. -- Elizabeth Hornbeck
These are my fighters. Alicia was diagnosed in September 2012 at the age of 13 with a brain tumor.
Isaac was diagnosed in September 2013 at the age of 13 with Hodgkin's lymphoma. -- Candie Parker
Yon
This is my daughter Marianna, diagnosed with Medulablastoma at 7 years old. She is now 18! She
had chemo and radiation over a three-year period, and thank God a clean bill of health since then. It
was a long tough road for her and our whole family. I tell people that the only we I got through it
was by "exiting" my body. I say it was in outer body experience. If the mother in me had stayed, I
would have crumbled. It's hard to explain, but honestly it helped me so much to turn into warrior
mode and do whatever it was to make my daughter better, as comfortable as could be, and as calm
as she had to be.
She has graduated high school now, not without any bumps. Her brain was not affected but her
hearing and memory were. She is a great human being, loved by everyone around her and an old
soul. We always tell her she is a 60-year-old trapped in a teenager's body. -- Carina Vazquez
This photo is from the last Christmas we had with Ryder, we had such a wonderful day as he jumped
off tables and chairs into our arms without a care in the world. Although you can clearly see the
original lump in his throat we had no idea the horror that lay before us.
Ryder Thomas Richards was born on October 15, 2008 at the Nebraska Medical Center. He had big
beautiful blue eyes and golden blonde hair (what little hair there was) and he smiled from the time
he was born, that never changed; Ryder was almost always smiling his naughty but sweet little grin.
He loved to play in the lake, chase the cats at Aunt Robin's house, sit on his dad's motorcycle and
pretend to drive, and he loved to play with his cousins.
In November of 2010, Ryder woke up from a nap with a lump in his neck; the very best way that I
can explain it is to say it looked like he swallowed a ping pong ball. He was taken to the doctor and
we were told that he had an infected salvatory gland and the best way to treat it would be with
antibiotics, but the lump never got smaller and when it closed off his throat in January of 2011, he
was taken to Children's Hospital in Omaha, NE. He was intubated and put under sedation so he
would not pull his own tubes and IVs out. He was under for nearly three weeks when finally the tests
came back that what we were facing was much scarier than any of us could have imagined. Ryder
had malignant rhabdoid tumors, and the plan became start chemo and radiation (what was supposed
to be a 30 weeks course).
Everything went as scheduled and the radiation shrank the lump in his throat to a size that was
manageable to remove. However, when the lump was removed they also had to sever arteries and
nerves connected to Ryder's face and shoulder. He was given a tracheotomy as well as other
procedures that would make him easier to treat in the future. He also had small strokes while on the
operating table but the lumps had successfully been removed and we were confident that the
surgery went as well as it could.
Physical therapy to learn to walk and use his right arm again were needed for a short time but he
was up and running around in no time. And through the summer we truly believed that we were
headed out of the woods.
In September of 2011, Ryder complained to his mom he had pain in his legs, thinking he was just
having growing pains she began to rub his legs and then she felt it. Another lump. Scans and tests
confirmed that Ryder's cancer was not only back but spread to his face, lungs, and legs. He was 26
weeks into his 30 weeks of chemo. His mom decided that they had been through enough and it was
time to stop with the medical procedures. It was time to just take him home and love him every
moment that we could. We watched as he very quickly became unable to walk or open his eyes or do
anything but lay and listen to movies. He passed away in the evening on Halloween 2011, while most
kids were out trick-or-treating, he was rocking with his mom until he took his last breaths. We had a
beautiful service for him at the First Church of Christ in Omaha and we released orange balloons
with messages on them for Ryder. Most of them said "you are free." We loved him dearly and we
miss him everyday. -- Robin Richards
My middle child turned 14 in January 2013. She had found a bump on the back of her tongue in
November. A biopsy March 11, 2013 said it was cancer. March 15 she went into a coma after a
surgery to put in a pic line. March 23 she died. We had no warning signs. Suddenly our child was
dead. Our life has been a roller coaster since. My husband and I have two other children ages 17 and
13 but our middle, our Tessa, is gone.
Before her diagnosis I never looked twice at kids with cancer, now I cannot turn away. -- Laura
Casteel
This photo shoot I did for a little girl who was diagnosed with leukemia in January 2011. As of April
2013 she has been chemo free! The photo shoot was taken in her mom's wedding gown, veil and
shoes, and we mimicked her moms pictures at the same location.
I'm a pediatric physical therapist who takes volunteer pictures for kids with special needs. -- Anam
Taufiq
You don't think it can happen to you, and then it does. You think your child has the flu and she's not
eating because she's nauseas, only it's not the flu. She has a lot of bruising and you chock it up to
her being a toddler, only that's not why.
My 4-year-old old daughter Belle can't spell her name yet without adding in extra letters or
forgetting an "E," but she will remind you not to forget her Zofran and her nightly chemo meds or
that her leg hurts and she needs a double dose of morphine to get out of bed.
If you're lucky, she'll show you the port in her chest and describe in detail how they flush and take
blood from it, how it hurts but she doesn't cry because she's brave for me or how she hates the taste
of the heparin used to keep her port from clotting. She knows the days of the week, not because she
learned them in preschool but because they coincide with what day she takes each med, what day
she has clinic, etc. This is our normal. This is the face of childhood cancer.
I never thought I'd hear those words, "your daughter has cancer".... and then one day I did. --
Melissa Bradley
On our blog, we ran the story about Amaan Shah who lost his battle to pediatric cancer. His mother
Asma Pasha has taken up the cause and is working on spreading awareness on childhood cancer.
There is a small foundation in his name. -- Chatoveracuppa
My family was thrown into the pediatric cancer world on April 10, 2001. My son, John Crosby, was
diagnosed with Adrenal Gland Cancer, and was 8 years old. Although he endured two surgeries,
chemo, and radiation he died on October 9th, 2001.
Sadly, shortly after John died, my husband Walt was diagnosed with rhabdomyosarcoma, in Feb. of
2005. Our world of cancer continued. He also endured chemo, radiation and a major surgery. After
one year of remission, he relapsed and died three years after diagnosed, at the age of 41. -- Paula
Crosby Flake

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One Family's Devastating 'New Normal' After Losing An 11-Year-Old To Cancer

  • 1. One Family's Devastating 'New Normal' After Losing An 11- Year-Old To Cancer My Talan. He's a leukemia warrior. He's 8 years old and he's just a regular kid. We call them "warriors" and "heroes" and "fighters" but really they're just kids... kids who are fighting a battle much bigger than any of us and nobody asked them if they were up to it. So when I say he's a regular kid it's because the worst part of his treatment is over and he's getting back to doing the only thing he should have to do right now. He's being a kid. This photo was taken a year to the date and I've never been able to get over the difference in his appearance. These kids live through hell. The worst part is knowing that as a parent you can only walk so far down that road with them. Talan would get sick to the point of bile. I wanted to comfort him so I'd reach out to rub his back or touch his neck with a cool rag but he'd put his hand up and without looking at me, in the best voice he could muster he'd say "No." That was the most profound moment as a parent caring for a child with cancer. He had to do the really bad parts alone and I could only watch. -- Tevin Yarger This is my daughter Kasydi. She was diagnosed with ALL last year on July 15th at just 3 years old. It took two months of her constantly being sick to get her diagnosed with something other than anemia. As you can tell from this picture she is a very smiley little girl. She's so strong and brave. I am so proud to be her mom. -- Krystal Stephenson I have a 4-year-old daughter who was diagnosed with a brain tumor at 2 1/2. Her name is Reese. After that she had a failed chemo and another couple brain surgeries. We started new chemo and shrinkage for those 16 months. Her last chemo was April. She has been in the hospital for a month for assumed meningitis, she was in septic shock another month. She shared an IV pole with me when I gave birth to our baby girl last December. She is my middle monkey of my five under 8, and a huge piece of my heart. -- Amanda Skelte My 2-year-old son who was diagnosed with Ewing's Sarcoma in April 2010. He is currently four years in remission and attending first grade. -- Julie Taylor Our son Joey was diagnosed with ALL when he was 3 years old. We are coming up on his one-year diagnosis anniversary, and we have treatment planned through January 23, 2017. Joey loves nothing more than his big sister and every single one of Zofran lawsuit her interests. -- Angie Worzala
  • 2. My youngest out four kids is fighting brain cancer medullablastoma. His tumor was removed completely. His name is Isaac and he's 7 years old. He finished six weeks of proton radiation/chemo and he has to complete six rounds of chemo. He has completed two rounds. He has definitely brought out the strength in me. He is so giving, caring, and he is my hero. I have always known there was no bigger love than a mothers love for her children and this reassured me that. -- Nilsa Dominguez This is my son, Connor, 10 months after being diagnosed with DIPG. He looks healthy and full of life, right? That's because the only course of treatment for this terminal on diagnosis cancer is radiation treatment. Radiation is a palliative measure to buy time and results in minimal hair loss. He lived 16 months from diagnosis and died less than six months after this picture was taken. In fact, he looked so healthy, at our Make-A-Wish trip to Disney, we were politely asked (over six times) to move from the "special line." He looked normal but was much worse off than those who had treatment options. -- Mariam Johnson Here is our story about my 3-year-old daughter's cancer survival and miracle. Grace was diagnosed soon after birth with neuroblastoma stage 4s. The 37 week ultrasound showed an abnormality and soon followed 3 full weeks until delivery of anxiety, more ultrasounds, so many doctors, and no answers. She was born healthy (it seemed) on her due date and came home with us days after. She showed no signs of stress except a lag in gaining weight. At 4 weeks old her left adrenal gland was removed and found to be lemon sized. The following treatment was a wait-and-see approach since 4s can spread all throughout the body without pain or ill effects. The cancer spread to her liver, right adrenal gland, and God knows where else in her body. We had the least invasive approach of regular ultrasounds and frequent check ups at Portland Oregon's OHSU Doernbecher Children's Hospital. At 10 months old, without chemo or radiation, with only love, this precious miracle tested cancer free. She's been cancer free since. Grace is an amazing person to experience and she lives life full speed ahead. -- Sophie Grow This is my son Gavin, diagnosed at age 3 with leukemia. He is now 5 and loves to tell people he kicked cancers butt! He has two years of chemo left and then he will get to call himself a survivor! -- Charlie Mayes My daughter, Caliah, was diagnosed with ALL leukemia at the age of 3 in 2010. She is four years in remission now. Cancer has changed our lives and opened our eyes to the awareness we need to have. We are very blessed that Caliah responded to well to therapy and is a healthy 7-year-old now. - - Mindy Russell
  • 3. Our son Jack was diagnosed with a rare and aggressive brain cancer roughly two months ago and we are currently undergoing treatment at St. Jude in Memphis, TN. Like many families, we had no idea until his behavior started to change around the first of July 2014 and an MRI revealed a large tumor inside his brain. Two brain surgeries in Omaha, NE were done to remove the tumor but it was necessary to have a third surgery in Memphis, TN when Jack's head developed an infection. Once the infection was under control, Jack was allowed to start chemotherapy. We are currently in our third week of chemotherapy with roughly 13 more weeks in our plan. At that point, Jack will need to undergo radiation therapy to help fight this disease for the long haul followed up with six more months of chemotherapy. We remain hopeful that our "Super Jack" can do this. He shows his strength and resiliency more and more each day. His mom (Sarah), his brother (3-week-old Jase) and I are at his side every step of the way cheering him on. He also has his grandparents, aunts, uncles, and cousins keeping his spirits high all over the country through technology. -- Sarah Oberhauser Speichert Almost three years ago, my (then) 3-year-old daughter was diagnosed with acute lymphoblastic leukemia. It was caught through a blood test. Within days, my seemingly healthy child was fighting for her life. I am happy to say that today, at the age of 5, Maya is cancer free. She finished chemotherapy this past June and began kindergarten a few days ago. Aside from some complications as a result of the intense chemotherapy she received, Maya is doing well and we hope it will remain that way always. We will forever live with the fear of her cancer returning though. Our entire world has changed and we are incredibly grateful that our daughter is still with us. We know how different things could be. - - Jo-Ann Annunziato My son Simon was diagnosed with clear cell sarcoma of the kidney at 12 months. He braved seven months of chemo and was off treatment for two years when he developed an inoperable brain tumor earlier this year. He is finishing treatment of intense chemo and had 28 radiation treatments. He has endured three surgeries including having his right kidney removed. He hates his pokes but has gotten so brave. I hate that he thinks this is normal and feels everyone is staring at his bald head. -- Gretchen Leavitt I am mother to four. My eldest Jennifer aka JLK was diagnosed on her 6th birthday Oct 28th, less than a year ago with DIPG -- a brain tumor that is terminal upon diagnosis. She lived with treatment 3.5 months. We are broken and devastated... we believe she is in a better place. I miss my daughter and they miss their sister. The whole world is missing out on the chance to know her. Some girls are just born with glitter in their veins and I truly believe my daughter was one of those. -- Libby Kranz
  • 4. Our neighbor and dear friends' little boy Alex was diagnosed March of 2011 with stage 4 neuroblastoma. Alex passed away July 8, 2013 from this horrible disease. -- Jill Joan My son Landon Jaymes Willis was diagnosed with hepatoblastoma at 19 months old. He passed away just 36 hours later, taking his final breath safe in my arms. He lived a devastatingly short but very full and happy life. In an instant my husband's life and mine had changed forever. Now our new reality is learning to live with a broken heart in a world where our sweet angel no longer exists until we can be together again. -- Tiffany Willis Our son Blake was diagnosed with acute lymphoblastic leukemia (ALL) on December 29th, 2008. He was 2-years and 4 months old when he was diagnosed. His baby sister, Alexia, was born only 18 days after he was diagnosed. We had just gotten the kit for her cord blood, which was banked by CBR for free due to her brother's life threatening illness. Blake was in treatment for leukemia until April 21st, 2012. His treatment lasted a total of three years and four months. He went through many hospitalizations, various chemo treatments, blood and platelet transfusions and outpatient visits. With his suppressed immune system we had to avoid large groups of people as well as sick friends and relatives. For the first year after he completed, he went back monthly for blood draws, last year it was every other month, he still goes in every three months for blood draws to make sure the leukemia hasn't come back. He is now a happy, healthy, 8-year-old boy! -- Travis and Desiree Parrack This is our precious boy Eli Mason Vela. He just turned two August 6th. He was diagnosed with acute lymphoblastic leukemia six weeks before his 2nd birthday. He will go through three years of chemo treatments. It has been a huge adjustment to our family's life, but we are determined to stay strong and help our fighter through this. -- Crystal Vela My 3-year-old son, Luke, was diagnosed with ALL in March 2013. He had a very rough time with chemo in the beginning, resulting in long hospital stays and an alternative treatment plan. He is in remission, however, doing really well, and will continue treatments for a total of three years. -- Jill Guerrero This is my daughter Logan, shaving her pediatric oncologist's head at a a St. Baldricks event. To me it represents the love, friendships, and support we have received throughout my daughters treatment for leukemia. Although it has been a long hard journey, the friendships and bonds that we've made are irreplaceable. Her doctor is a huge supporter and shaves his head every year to support childhood cancer research and his patients. -- Ashley Finney
  • 5. Aidan is one in a set of triplets, with two sisters. They were born at 29 weeks weighing less than three lbs. Aidan was born with a condition that required a skull remodeling at the age of 4 months old. Fast forward to less than a month before their 2nd birthday, Aidan fell and hit his head, leaving him unresponsive. A CT scan revealed a mass in his brain, completely unrelated to the fall. Upon removal of the tumor, it was determined to be an astrocytoma. Fifteen months of chemotherapy later, he finished treatment in March 2014. Though he will never be "cancer free" because of remaining tumor, he is free to be a typical almost 4-year-old again. -- Courtney Trumbauer This is my daughter Abby. She passed away in February 2014 at age 5. Her official diagnosis was parameningeal sclerosing rhabdomyosarcoma, which she fought for three years. After relapsing the second time, we were told that there were no trials available to her because her type of cancer was so rare, and to take her home and love her. I feel this picture represents our journey because it's not the happy, St. Jude's face that you always see in commercials. She went through more than a dozen surgeries, close to 40 rounds of chemo, 33 days of radiation and she ended with part of her tumor growing out of her eye and losing her vision in both eyes. -- Katie Hanway My son Prestun is stage 4 neuroblastoma. He just relapsed from this horrible monster. To make matters worse he relapsed in the brain and is preparing for removal next week. He is calling all superheroes. His birthday is September 17 and instead of toys, he wants to honor all superheroes around the world. -- Tiffany Seibel My beautiful daughter Charley has brain cancer. She just turned 1 on August 13th. She was diagnosed with brain cancer at 4 months. She has been in treatment since December 2013 and she has about seven months left of treatment. -- Heather Howell Our son Sam was diagnosed with medulloblastoma in 2009. Full resection of brain tumor, six weeks of radiation, 52 weeks of chemo. An amazing journey filled with a roller coaster of emotions. Cancer free for four years now. We feel blessed. -- Erica Mahoney Robinson This is my 18-year-old son, Raistlin Hobbs. He was first diagnosed with Ph+ ALL or Philadelphia chromosome positive acute lymphoblastic leukemia, on March 21, 2008 at the age of 12. He underwent chemotherapy treatments and radiation treatments and ultimately had a bone marrow transplant in July 2008. He was in remission for six years and the doctors thought he had this beat. On January 30, 2014, we found out that he had relapsed. He has done more chemo, but could not have radiation because he had the maximum amount in 2008. He underwent a second bone marrow transplant in July 2014 and is still in the hospital recovering. The chemo and radiation have affected his liver, lungs, and kidneys. -- Sharon Hobbs
  • 6. My son, Carson, has been battling T-cell acute lymphoblastic leukemia for two years now. We are so blessed to have such a strong, little man who is kicking this cancer with all his might. We pray he will never relapse, however that is always in the back of my mind -- that possibility. So today we treasure what we have. -- Kim Grassan Lenardson This is my baby cousin Sterling Avery. Sterling was diagnosed with (Ph+)ALL in December of last year, her and her mother Laura J Miller were flown by air ambulance immediately to a neighbor island in Hawaii. That is where they have stayed, they haven't set foot in their own home or seen any of their friends in nearly nine months now. Most recently, Sterling suffered the complete and permanent loss of her hearing due to one of the medications used to save her life from a horrible disseminated fungal infection. She is a true FIGHTER. -- Julie Thompson This is my son Aaron. He was diagnosed at 4 years old with ewing's sarcoma stage 4. He underwent 14 rounds of chemo, 28 rounds of proton beam radiation (five hours away from home), a feeding tube, three surgeries, relearning to walk, and everything else that goes along with treatment. Aaron is now 7 and has his two-year scans scheduled for October 21. His passion is giving back and he loves his family at our hospital. He would donate everything we have to kids in need and for that and so many reasons he is my hero. -- Beth Stein Pinsky This is my son Josh. He was diagnosed with leukemia on November 24, 2010, and finished treatment on March 7, 2014. After his first year of intense chemo, he returned to the football field, some days playing immediately after leaving the hospital after his chemo infusion. To celebrate six months off treatment, Josh, his brother Keagan and I will shave our heads to raise money for St. Baldrick's so no other child has to go through what Josh has. When he grows up, Josh wants to play in the NFL, and when he retires, he wants to be a pediatric oncologist. -- Laura Burt Pita My daughter Adriana, age 3, soon to be 4, was diagnosed with ALL (leukemia). It was found in her blood, spinal fluid, and brain. She's finished her aggressive part of treatment (spinal chemo, IV chemo, oral chemo, and full cranial radiation). She's now in maintenance phase and looks forward to being done with treatment October of 2015! Despite all of the hospital admissions and aggressive treatment she has undergone she's been a huge inspiration by her constant upbeat attitude, courage, and strength. She's truly amazing. -- Nicole Riggott My bonus son is 7 and was diagnosed with a rare undifferentiated sarcoma in March 2014. He has undergone 16 hours of surgery, spent 48 nights in the hospital, received 22 chemotherapy infusions, 31 consecutive days of radiation, and 6 blood/platelet transfusions. He's been a remarkably brave kiddo during these past eight months. We are so proud of him. -- Jacqueline Rice McKenzie My daughter, Saoirse Fitzgerald, was diagnosed at 11 months old with stage 4 high risk
  • 7. neuroblastoma. Her diagnosis came just a little more than three months after I was diagnosed with hodgkin's lymphoma. With two primary tumors (rather than the usual one), nMYC amplification and poor biology, there was little chance that she would respond to treatment at all. But she did, and she did it all while having a smile on her face through all of her treatment (while I needed to nap way more often). But neuroblastoma is a tricky beast, and she relapsed just two weeks after she was declared NED. NB took her life just six weeks later. She laughed through everything and made everyone happy when she entered a room. This photo was taken just weeks before she died. Even though her body was filling with new tumors, she still took joy out of every day! -- Kezia Fitzgerald Our daughter is one of the lucky ones. She was diagnosed with acute lymphoblastic leukemia at 23 months old. Twenty-five months later we celebrated the end of her treatment and now she's a year off treatment and attending kindergarten as a happy, healthy girl. Each of the beads on the 16' strand in her hands is a procedure, transfusion, chemo, poke that she powered through on her way to good health. -- Amy Martin This is my sweet Caden. At 22 months old he was diagnosed with brain cancer. He is the sweetest, most gentle soul I have ever known and life without him here on earth is so hard. Knowing he is in the hands of our Lord brings me comfort but missing him never ceases. Caden went to Heaven at 2 1/2 years old, 9 months after his diagnosis. Childhood cancer unfortunately came into our lives, and it will never leave. Raising awareness for the terrible diseases that plague our children is an ongoing battle. Caden, forever in our hearts. -- Amanda Jake My daughter Jasmine was 6 months old when we found out. She survived four times longer than what the doctors thought, ATRT is a very rare type of brain cancer and does not have many forms of treatment. She passed away two years and 11 months ago. Jasmine was and is an inspiration to all of us. -- Jodie Uhl My daughter, Samantha, is one of the lucky ones. In the realm of childhood cancer she had it easy -- in/out of treatment within 4.5 months for a neuroblastoma tumor with little chance of relapse or secondary cancer due to treatment. The reality is that the average length of treatment for any childhood cancer is one year and a lot of the time the treatment for the cancer can cause secondary cancers and/or other health issues for a lifetime. -- Alyna DiGiacinto Harrall My niece, Grace, is 9 years old and has relapsed twice with neuroblastoma. She says herself that she will never give up. -- Katherine Kenneally "I wish I may, I wish I might have my superhero port out tonight" My little one, Jasper was
  • 8. diagnosed with high risk pre B cell acute lymphoblastic leukemia in January of this year. He will be 3 on Halloween. He pretends he often is a doctor and knows more than most little children and adults even imagine. You never know what will be knocking at your backdoor ... let alone cancer. -- Jennifer Franks Grace has Ph+ leukemia but we are learning how to find a way to smile, laugh, be thankful, and how to help others no matter what life brings. Grace helped start a petition for more Ella Chemotherapy Barbie to help others. Cancer can't stop this little girl from making a difference! -- Melissa Bumstead This is our Emily. She was diagnosed with PreB cell ALL on September 24, 2013. We went from worried to sobbing and then saying, "OK what do we have to do?" Since then she has passed the fourth grade, turned 10 and gone into maintenance phase. I love how brave and strong she is, she has taught us all so much. -- Randy and Jen Our 15-year-old daughter was diagnosed with acute lymphoblastic leukemia in 2002, just before the beginning of her sophomore year of high school. Cancer sucks. Too many missed school days lying on the couch... too many days in the hospital... too many friends who didn't make it. -- Marey Blackwell Richins My daughter Amy was 4 1/2 when she was diagnosed with stage IV wilm's tumor. This picture was from her 5th birthday. Through all the radiation, chemotherapy, and hospitalizations she never lost what makes her "Amy." She is an 11-year, healthy survivor. She has been an inspiration to many adult family members who have fought this terrible disease. -- Adrienne Zimmer Tignino This is my daughter Victoria. She was diagnosed at 6 months old with AML. She went through five rounds of high dose chemo and was inpatient for six months. On October 14, 2014 she'll be in remission for four years! -- Heather Hernandez Our daughter, Marielle, was 3 years old when she was diagnosed with acute lymphocytic leukemia. She is now 12 years old, a survivor, but she has cognitive effects from the chemotherapy that was put into her spinal fluid, while her brain was still developing. So, though physically healed, she carries the scars forever, in her brain. She has dyscalculia, slow processing speed, writing difficulties, executive function problems and more. -- Marie Lappin Our daughter Nicole (then 11 on January 25, 2012) complained of knee pain off and on for about month and was diagnosed with osteosarcoma left distal femur. Her and I moved to Seattle (3 1/2 hours away, leaving my husband home with our four others) where we lived at the Ronald McDonald
  • 9. House and she received treatment at Seattle Children's. She endured 18 rounds of chemo, a total of nine surgeries (the major one was having 6" of her femur removed and replaced with a donor bone with plate and screws). She had surgery on her good leg to stunt the growth, and her most recent one was in February of this year to replace the rod as it had shifted in her leg. After 30 weeks of treatment and 2 1/2 years of being on crutches, we now face her two-year post treatment scans In October in Seattle and pray she continues to have no evidence of disease. Nicole is a tough girl and has endured this with minimal complaining and a strength beyond anyone her age should ever have to endure. -- Karen Sikkila St Martin My daughter Ella was diagnosed with stage 3 neuroblastoma at 7 months old. She is stable now at 3 years old, but continues to have some tumor on her spine and abdomen and is left with bowel and bladder issues. -- Michelle Tremblay Reese Our Brave Little Man, Zion-Vaioleali'i, was diagnosed with a form of brain cancer called ependymoma, on March 6th, 2014. He had just turned 2 years old and we've now been in hospital for seven months, with another few months to go, possibly spending Christmas in hospital as well. We've now completed four cycles of chemotherapy, and now radiation is on the cards for our little boy. We have shed many tears over these last few months, but we have definitely shared more smiles than tears. We have such an awesome support network, family and friends, unknown strangers, angels in disguises. -- Anahera-Aroha Natalie Hawira My daughter's beautiful friend is a survivor of retinal blastoma. The thought of not having this special, wonderful, little girl in our lives leaves me breathless. I hate cancer for so many reasons, how dare it try to steal her from us??? -- Erin Williams My son has a very rare desmoid tumor. Although it won't metastasis, it is a very difficult tumor to treat. He is off chemo and doing great. These children (all of them) are my heroes. They are so brave and gracious and take all this crap that is thrown at them with such strength. I have learned so much from all of them the past two years! -- Kathy Delmore Veeck -- Courtney Holland Tipping Ethan Kerr was diagnosed with acute lymphoblastic leukemia two weeks before his second birthday. The first 14 months were very hard. We nearly lost him many times. He has cerebral palsy and epilepsy as a result of a septic event. The chemo itself caused other types of seizures. He has been OFF treatment for six years now. He has been my hero every step of the way. He is the strongest, most courageous person I have ever met. I am so proud that this young man is my son. -- Jessica Burt Kerr
  • 10. My son Austin Stitzer lost his battle to brain cancer. -- Wendy L Dobson Dorian was diagnosed with stage 4 alveolar rhabdomyosarcoma at 4 years old on April 26, 2012. He fought for 15 months and ended his treatment with clear scans. Six months and 11 days later, four days before Christmas in 2013, he relapsed. There is no 'standard protocol' for relapsed Rhabdo, so it's all a guessing game right now, but Dorian is doing so well! He has completed 103 radiation treatments, and countless chemotherapy treatments, blood transfusions, platelet transfusions, surgeries... He has been through so much. He is my hero. Every single day. -- Melissa Doty Murray My survivor Siena! This was taken just a few weeks ago. She is one year off treatment for ALL. She was just 2 at diagnosis and is now 5 and in kindergarten! We need better treatments... I write this from a hospital room where we are dealing with side effects from chemo. We've been here five days already. She's a fighter! -- Laura Hernandez -- Jenni Gillespie Helms This is my son Aiden. He will turn 3 in here on September 14th. He was diagnosed with stage 4 neuroblastoma in March and he is now in the hospital getting a bone marrow transplant. He is my hero and Rocky Balboa's biggest fan! -- Matt Young My daughter Natalija was diagnosed almost two years ago at the age of 3 with a brainstem tumor. She did 18 months of chemo and at the first MRI post treatment, the tumor had grown. She just had a biopsy three weeks ago and we are getting ready to start another round of chemo. Childhood cancer is a parent's worst nightmare. I wish I could take it all away from her. I would give anything to get her healthy. We pray and never ever give up! -- Stephanie Tenzera Reade My son Porter, 11 years old. He was diagnosed with acute lymphoblastic leukemia in October of 2012 at age 8. Has been going through chemo since. He will finish in January 2013, after 39 months of treatment. We've been to Hell and back, meet many new, inspiring friend on this journey and kiddy way too many. Pediatric cancer is a terrible life to live. -- Jen Haley This is Tatumn and the last healthy Christmas we had with her. She was diagnosed at the age of 3 with a DIPG brain tumor. She is the youngest of four kids and suffered for 5 1/2 months before she died. Our family is heartbroken. She was kind, sassy and full of love. She adored her siblings and copied everything they did while also keeping them in line. She died in February of 2012 and it still seems unreal. We are lost. We miss you sweet baby. -- Bonnie Fuller Woodworth
  • 11. One week from diagnosis of DIPG Jayden passed at 3 1/2 years old. -- Angela Fogg Borrell Our son Saxon is 11 and on his second battle with beating cancer. He was first diagnosed in January 2013 with wilms tumour and after nine months of treatment went into remission. In April 2014, a routine scan showed the cancer had returned and he had relapsed. Treatment is very intensive with one week in hospital for chemo and two weeks home recovering over and over for the next 24 months. He is very frightened of dying and can't understand how he could be so unlucky. How do you answer those sort of questions? The treatment has taken away his childhood, opportunity for a normal education, sport, his role within his school class due to absence and made him socially isolated from his peers. He will be starting a new high school in a year still in treatment and still with no hair. As a family we will never be the same. As the picture shows, he is very resilient and a true trouper and even when he is at his lowest, tired and angry and feeling like vomiting from the chemo he still tries to smile. He is definitely my super hero and I am incredibly proud and honoured to be his mum. -- Chris Stilian Our son Noah is 6 years old and was diagnosed with ewing's sarcoma in April 2014. He just completed three months of chemo (had some delays due to low counts along the way) and is starting his next phase now, which is chemo/radiation combo. Noah is an amazing boy who's character and love for others has never changed despite the multitude of things he's had to endure. -- Scott Wilson Our son Angus, age 11. He was diagnosed with ewing's sarcoma in June 2014. Three months of intensive chemo down, major surgery in a couple of weeks. It's hard to understand unless you've seen it first hand! And at 11, he also worries for himself. How do you respond when your otherwise healthy child asks if he is going to die? No child should ever have to contemplate their own mortality. -- Tracy Hollington It's a never-ending journey, even after treatment, because now we deal with long-term side effects from the treatment. However, I'd choose side effects before the only other option of death.(Neuroblastoma stage iv survivor Kaitlyn August.) -- Colleen Sleer Our daughter Ellerie Anderson is fighting medulla blastoma brain cancer. We are fortunate in that she is a fighter and the amazing neurosurgeon was able to resect the tumor completely before we started chemo. We are now one-third the way through the treatment assuming no other problems arise. We try to celebrate one thing every day -- no matter how big or small. It makes this more bearable and keeps us moving forward even when we have bad days. We have had the pleasure of meeting so many other families, fighting different cancers for their own brave little ones and it has made me realize how little we know about cancer, let alone childhood cancer. -- Scott Wendy Anderson
  • 12. My warrior princess and her amazing caregiver sister. -- Jenifer Stephens German Our oldest son Jayson is 9 years old and was diagnosed less than a month ago with TCell ALL. I thought he had a stomach bug. We are heartbroken and in shock. He's been through so much these last few weeks and is responding well to treatment. We are praying and putting our faith into God for healing and recovery. No kid should have to endure this pain!-- Yvonne Devine Irizarry My daughter Lilly was diagnosed at 18 months old with clear cell sarcoma of the kidney. She has gone through surgeries, six radiation treatments, and nine rounds of chemo. She completed treatment three weeks ago. -- Kellie Fisher Landyn Alexis was diagnosed on December 29, 2009 at 7-months with atypical teratoid rhabdoid tumor. Numerous surgeries, chemo, radiation, transfusions, medications, seizures, hydrocephalus, and pneumonia. She passed away July 25, 2010. ATRT had a ten percent survival rate. That means nine out of ten kids die. Awareness and money are the only way to raise money to research a cure. -- Becca Tickle Never knew worry until my son was diagnosed with leukemia. Past three years have been indescribable! -- DeAnn Tucker This is Wicho Dominguez -- Lana De Leon Cara Rae was 22 months old when diagnosed with leukemia, picture taken at her no more chemo party four weeks ago! Little boy pictured won a scavenger hunt contest and donated it to Cara right after she was diagnosed. -- Trisha Bailliez Kielty This is my son, Joshua. He was diagnosed with an ependymoblastoma (aggressive brain tumor) at 30-months. He is going to turn 19 years old this month. He survived, but has severe disabilities as a result of his treatment. He has unrelenting seizures and wears a helmet still after all these years. He is sweet, innocent and functions at the level of a 7-year-old. He has severe hearing loss, severe osteoporosis, and has had three 11-hour or more brain surgeries to remove the tumor and, most recently, to try and control the seizures. My hero, Joshua. -- Renee Perkins-Curkendall This is Thea. She just started second grade and has been fighting a brain tumor since she was 4 months old. She has had a stroke, lost most of her vision, has hormonal imbalance, eating issues,
  • 13. growth deficiency, hydrocephalus and a shunt (and several shunt revisions, after one of which she had to learn to walk again) and has been through a total of five years of chemo, over her seven years of diagnosis. She will be starting again, next week, after a short break. Yet, we still consider ourselves lucky. She is still with us. We are huge advocates for finding better treatments for pediatric brain tumors. Kids shouldn't have to suffer the side effects and long term problems that come along with cancer treatment. They have entire lives to live. -- Trisha Tobin Danze -- Brandy Duggar Myers My son, Cody, is a strong kiddo and we're blessed and pleased that he is doing so well. He also ended up with hypothyroidism which, thankfully, is easily treated. He has also overcome the bone density issue over the last couple of years of supplementation and weight bearing. He is a tough kid! -- Brenda Kelley This is our son Keaton. He was diagnosed with infant acute lymphoblastic leukemia at the age of 11- months in 2009. He went through multiple rounds of chemotherapy, radiation and a bone marrow transplant with the donor being his older brother. He did well for over four years. Until March 6th, 2014 when after http://www.everydayhealth.com/drugs/ondansetron weeks of being sick he was diagnosed with secondary acute myeloid leukemia. Secondary essentially meaning, that this new cancer was a result of his treatment for his first cancer (we were told this was a possibility but very rare). Almost immediately he fought a viscous fungal infection that almost took his life but he pulled through. He went on to again receive chemotherapy and a SECOND bone marrow transplant (this time the donor was baby sister). He is currently almost three-months post transplant and in remission! Secondary AML does not have great long term statistics so our prayer is that he stays in remission. -- Sarah Helmes Traffie My daughter, Danielle, was diagnosed with high-risk acute lymphoblastic leukemia on January 15, 2011. The first picture is during the roughest part of treatment. The second picture is on the day she had her last IV chemo. What these capture is the smile that rarely left her face. -- Amy Samsury Ben Sauer gave us ALL more reason to live. His family is by far, one of the most remarkable families alive. Fly high, sweet Ben. -- Vanessa Caisse My son is my hero! He was diagnosed with stage 4 wilms tumor at age 3. He endured six months of chemotherapy and radiation treatments. He has been in remission for five years now and is healthy, active third grade boy. Mental health is important during a cancer diagnosis! I suffer from PTSD, every time my kids have a fever and Tylenol doesn't crack it right away. I have an irrational panic, paranoid of "worst case" scenarios. Cancer is genetic -- both myself and son are survivors. All of my
  • 14. kids carry rare gene. I am now a full time nursing student, focused on pediatric oncology when I finish my BSN. Cancer is going to be a part of the rest of our lives --- whether or not we want it to. Once touched by this disease, there's no turning back innocence. -- Elizabeth Hornbeck These are my fighters. Alicia was diagnosed in September 2012 at the age of 13 with a brain tumor. Isaac was diagnosed in September 2013 at the age of 13 with Hodgkin's lymphoma. -- Candie Parker Yon This is my daughter Marianna, diagnosed with Medulablastoma at 7 years old. She is now 18! She had chemo and radiation over a three-year period, and thank God a clean bill of health since then. It was a long tough road for her and our whole family. I tell people that the only we I got through it was by "exiting" my body. I say it was in outer body experience. If the mother in me had stayed, I would have crumbled. It's hard to explain, but honestly it helped me so much to turn into warrior mode and do whatever it was to make my daughter better, as comfortable as could be, and as calm as she had to be. She has graduated high school now, not without any bumps. Her brain was not affected but her hearing and memory were. She is a great human being, loved by everyone around her and an old soul. We always tell her she is a 60-year-old trapped in a teenager's body. -- Carina Vazquez This photo is from the last Christmas we had with Ryder, we had such a wonderful day as he jumped off tables and chairs into our arms without a care in the world. Although you can clearly see the original lump in his throat we had no idea the horror that lay before us. Ryder Thomas Richards was born on October 15, 2008 at the Nebraska Medical Center. He had big beautiful blue eyes and golden blonde hair (what little hair there was) and he smiled from the time he was born, that never changed; Ryder was almost always smiling his naughty but sweet little grin. He loved to play in the lake, chase the cats at Aunt Robin's house, sit on his dad's motorcycle and pretend to drive, and he loved to play with his cousins. In November of 2010, Ryder woke up from a nap with a lump in his neck; the very best way that I can explain it is to say it looked like he swallowed a ping pong ball. He was taken to the doctor and we were told that he had an infected salvatory gland and the best way to treat it would be with antibiotics, but the lump never got smaller and when it closed off his throat in January of 2011, he was taken to Children's Hospital in Omaha, NE. He was intubated and put under sedation so he would not pull his own tubes and IVs out. He was under for nearly three weeks when finally the tests came back that what we were facing was much scarier than any of us could have imagined. Ryder had malignant rhabdoid tumors, and the plan became start chemo and radiation (what was supposed to be a 30 weeks course). Everything went as scheduled and the radiation shrank the lump in his throat to a size that was manageable to remove. However, when the lump was removed they also had to sever arteries and nerves connected to Ryder's face and shoulder. He was given a tracheotomy as well as other procedures that would make him easier to treat in the future. He also had small strokes while on the operating table but the lumps had successfully been removed and we were confident that the
  • 15. surgery went as well as it could. Physical therapy to learn to walk and use his right arm again were needed for a short time but he was up and running around in no time. And through the summer we truly believed that we were headed out of the woods. In September of 2011, Ryder complained to his mom he had pain in his legs, thinking he was just having growing pains she began to rub his legs and then she felt it. Another lump. Scans and tests confirmed that Ryder's cancer was not only back but spread to his face, lungs, and legs. He was 26 weeks into his 30 weeks of chemo. His mom decided that they had been through enough and it was time to stop with the medical procedures. It was time to just take him home and love him every moment that we could. We watched as he very quickly became unable to walk or open his eyes or do anything but lay and listen to movies. He passed away in the evening on Halloween 2011, while most kids were out trick-or-treating, he was rocking with his mom until he took his last breaths. We had a beautiful service for him at the First Church of Christ in Omaha and we released orange balloons with messages on them for Ryder. Most of them said "you are free." We loved him dearly and we miss him everyday. -- Robin Richards My middle child turned 14 in January 2013. She had found a bump on the back of her tongue in November. A biopsy March 11, 2013 said it was cancer. March 15 she went into a coma after a surgery to put in a pic line. March 23 she died. We had no warning signs. Suddenly our child was dead. Our life has been a roller coaster since. My husband and I have two other children ages 17 and 13 but our middle, our Tessa, is gone. Before her diagnosis I never looked twice at kids with cancer, now I cannot turn away. -- Laura Casteel This photo shoot I did for a little girl who was diagnosed with leukemia in January 2011. As of April 2013 she has been chemo free! The photo shoot was taken in her mom's wedding gown, veil and shoes, and we mimicked her moms pictures at the same location. I'm a pediatric physical therapist who takes volunteer pictures for kids with special needs. -- Anam Taufiq You don't think it can happen to you, and then it does. You think your child has the flu and she's not eating because she's nauseas, only it's not the flu. She has a lot of bruising and you chock it up to her being a toddler, only that's not why. My 4-year-old old daughter Belle can't spell her name yet without adding in extra letters or forgetting an "E," but she will remind you not to forget her Zofran and her nightly chemo meds or that her leg hurts and she needs a double dose of morphine to get out of bed. If you're lucky, she'll show you the port in her chest and describe in detail how they flush and take blood from it, how it hurts but she doesn't cry because she's brave for me or how she hates the taste of the heparin used to keep her port from clotting. She knows the days of the week, not because she
  • 16. learned them in preschool but because they coincide with what day she takes each med, what day she has clinic, etc. This is our normal. This is the face of childhood cancer. I never thought I'd hear those words, "your daughter has cancer".... and then one day I did. -- Melissa Bradley On our blog, we ran the story about Amaan Shah who lost his battle to pediatric cancer. His mother Asma Pasha has taken up the cause and is working on spreading awareness on childhood cancer. There is a small foundation in his name. -- Chatoveracuppa My family was thrown into the pediatric cancer world on April 10, 2001. My son, John Crosby, was diagnosed with Adrenal Gland Cancer, and was 8 years old. Although he endured two surgeries, chemo, and radiation he died on October 9th, 2001. Sadly, shortly after John died, my husband Walt was diagnosed with rhabdomyosarcoma, in Feb. of 2005. Our world of cancer continued. He also endured chemo, radiation and a major surgery. After one year of remission, he relapsed and died three years after diagnosed, at the age of 41. -- Paula Crosby Flake