knowunderstanding the cancer experienceknowin
the
Issue 23complimentary
magazine
Children & Cancer
Survivor Stories
Local Resources
Candlelighters of El Paso
Creative Kids
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inthis issue:As I pen this editorial for the
23rd issue of In the Know:
Understanding the Cancer
Experience, it is in between
swim laps, hurdle jumps,
balance beams and outpacing
the competitors. No, I am not
a tri-athlete, but rather an arm
chair cheerleader for the
American team at the 2012
London Olympics. Like many
of you, I am cheering, holding my breath and tearing up
during the presentation of the gold under the American
flag and the playing of our National Anthem.
The dictionary defines the gold medal as a noun – a
trophy that is usually awarded for winning first place in
a competition; a prize or; something given as a token of
victory.
How fitting that the ribbon symbol for Childhood
Cancer – the subject of this issue of our magazine – is
the Gold Ribbon. According to the National Cancer
Institute, there are nearly 12 million cancer survivors
who are alive in the United States, at least 328,000 of
whom were originally diagnosed when they were under
the age of 21. Advances in cancer treatment mean that
today almost 80 percent of children diagnosed with
cancer are alive at least five years after diagnosis. Many
ultimately will be considered cured. A gold medal
victory, indeed!
We dedicate this issue to the unique trials and
triumphs that accompany a childhood cancer diagnosis.
In her interview with childhood cancer survivors,
Monica Garza shares personal stories from now adult
survivors of how cancer has impacted their lives.
Michelle Brown lends advice to parents of children with
cancer with practical information about maintaining
normalcy throughout the experience.
A sincere thank you to Beate Burdett of the El Paso
Candlelighters who contributes a personal view of her
work with this outstanding non-profit organization and
how it works to enriches the lives of children with
cancer. The Rio Grande Cancer Foundation is proud to
be a small partner in some of the many activities
Candlelighters provides to this special group of
children.
In the Know has in the past featured Creative Kids,
Inc. and their art programs in the El Paso community,
however, Erika Aragon takes a different spin in this
interview with Stephen and Andrea Ingle on the
personal side of their work with children in treatment;
how they deal with both the triumph and the loss that
accompanies their daily efforts.
Thank you for all your comments and requests for
additional copies of our issue on the subject of Toxins.
One reader expressed concern that we were scaring
people with the overload of information on the many
toxins in our environment. Our sincere apologies if we
placed you in that position; our intent in publishing In
the Know: Understanding the Cancer Experience is to
offer to you useful tips for making positive changes in
your life – one small step at a time.
Patty Tiscareño
Executive Director
D E P A R T M E N T S
F E A T U R E S
In The Green House 22
What I Know Now 23
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Cancer during childhood years colors
who we become as adults. We hear
first hand from some remarkable
survivors about the lessons they have
learned.
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Communicationand Educationabout Cancer
by Michelle J. Brown
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10pagepage
Going to school is challenging for
many young students. With a cancer
diagnosis, the experience becomes
that much more difficult. Here we
take you through the school days,
with a little help from a monkey too!
Growing Up with Cancer Everyone Take Your Seats
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Candlelighters has become the
organization to go to when you have a
child with cancer. In this feature, we
explain why.
Lighting the Way
page
BOARD OF DIRECTORSGordon L. Black, M.D.,
Honorary
Michele Aboud
Robert Ash
Patricia Carter, RN
Ted Edmunds
Sam Faraone
Jeanne Foskett
Monica Gomez
Dan Olivas
Irene Pistella
Shelly Ruddock
Ken Slavin
Polly Vaughn
Patti Wetzel, M.D.
Steve Yellen
EXECUTIVE DIRECTORPatricia Tiscareño
PROGRAM OFFICERJutta Ramirez
DIRECTOR OF MARKETINGAND COMMUNICATION
Izzy Mora
OFFICE MANAGER
Cindi Martinez
ADMINISTRATIVE ASSISTANT
Maggie Rodriguez
is published by the
Rio Grande Cancer
Foundation10460 Vista del Sol, Suite 101
El Paso, TX 79925
(915) 562-7660
fax (915) 562-7841
www.rgcf.org
knowin the
by
Snappy PublishingTed Escobedo, Publisher
240 Thunderbird • Suite C
El Paso, Texas 79912
(915) 820-2800
55
Growing Upwith Cancer
Cancer is an
overwhelming
experience for
anyone to face at
any age. For
children, it leaves
an indelible
impression that
impacts who they
become as adults.
by Mónica M. Garza
with introduction and
additional material by
Michelle J. Brown
Survivor
Stories
Growing Upwith Cancer
66 7
Jenn ifer ’s
story
Having been diagnosed
with a grapefruit-size
Wilm’s tumor, a rare cancer
of the kidney affecting
mostly children, at the age
of 2, Jennifer Lopez
doesn’t recall the
struggle — she relies
on her mother for the
memories — but she
does know that it
changed her life.
Frequent stomach
aches and a
complete loss of
appetite led her
young parents,
then 25 and 27, to
take their daughter to a
doctor, beginning the path to
diagnosis and a trying battle
with cancer. Living in
Mexico at the time, the
Lopez family, in order to
seek treatment for the
tumor, made the difficult
decision to split up. Her
sisters, then 6 years old and
6 months old, couldn’t have
understood the situation.
The next year and a half
after diagnosis saw Jennifer
in and out of hospitals for
treatment — chemotherapy,
followed by surgery to
remove her kidney and the
then-golf-ball-size tumor —
and additional surgeries
needed due to symptoms of
treatment. With little to no
memory of the arduous
ordeal, Jennifer does
remember how her mother
virtually lived in the
hospital with her during her
stays, for weeks at a time,
willing to give her all to her
second child.
“My mom and I moved
first and lived here [in El
Paso] alone for about a year;
then my dad eventually
moved to El Paso with my
sisters,” said Jennifer. “My
mom tells me that year we
were by ourselves was
obviously particularly
difficult, especially because
my younger sister was only
six months old at the time.”
And though the time was
trying, it changed both her
and her family’s lives for
the better. As an adult,
Jennifer said, she feels that
having had cancer as a child
made her grow up faster.
Today, a third-year
Metallurgical and Materials
Engineering student at the
University of Texas at El
Paso, she believes she is
more mature and
independent than she would
have been otherwise, and it
has made her family even
more tight-knit.
“Thankfully everything
turned out for the better and
I am so thankful for my
family,” Jennifer said. “It’s
hard to imagine how my life
would be if I hadn’t gotten
sick; everything would be
so different.”
Looking toward her
future, Jennifer knows that
the cancer might have a
lasting impact on her health,
but she maintains an
optimistic attitude.
“I have one friend [who
had the same type of cancer
as a child] … a doctor told
her she wouldn’t be able to
have kids,” she said. “For
me, if I couldn’t have kids
of my own, I would adopt.”
Like Jennifer, Laura
Cruz-Acosta maintains an
optimistic attitude about her
life after cancer.
Laura was diagnosed with
thyroid cancer at the age of
12 after her grandmother
noticed an Adam’s-apple-
like lump in her
granddaughter’s throat.
“I remember her pushing
my neck up and asking me
what the lump was,” she
recalled. “I was embarrassed
because it was an
abnormality and so I waved
it off, but thankfully she
told my mom.”
A trip to the pediatrician
led to diagnosis and the
beginning of a difficult time
for the family.
The normally exuberant
12-year-old found the
experience frightening and
very difficult, suffering
through iodine radiation
treatment, quarantine and
subsequent surgery to
remove the remainder of her
radiated thyroid.
“Being quarantined was
awful,” she recalls. “My
mom would come visit me
and stand in the doorway,
because she couldn’t come
into the room. I was
radioactive. I remember I
would cry myself to sleep.”
A token of her early
experience with cancer, the
34-year-old keeps a white
stuffed rabbit that was given
to her by an aunt after the
treatment and surgery as a
means to remember the
experience.
“I can’t get rid of it,
because it’s a reminder of
that part of my life,” she
said. “It was a rough time,
but I came through it with
my family’s support and
love.”
Laura’s childhood
experience continues to
impact her life heavily. As a
result of treatment and
surgery to remove the
remainder of her thyroid,
she has had to take a
synthetic thyroid hormone,
without which her health is
greatly affected.
And the threat of
experiencing cancer as an
adult is a constant fear, with
doctors having warned her
of the possibility of a
recurrence as lung or breast
cancer. Adding to the fear is
the minor recurrence she
experienced in 2000.
“At first, I was furious,”
she said, recalling the doctor
telling her they had found
something small. “But when
I had to go back into
radiation treatment, I took
the approach of it being a
vacation. I was able to get
away from work. I got to
sleep late, watch TV and
read magazines for three
days.”
As with anyone who has
experienced cancer as a
child, Laura’s experience
left its mark on who she has
become as an adult,
physically due to ongoing
health concerns, but in other
ways as well.
“Emotionally, I’m more
attuned to cancer and its
impact,” she said. “I think
people, the general public,
might be desensitized
toward the ongoing
seriousness of cancer.
Survivors should continue
to share their experience and
keep faith that there will be
a cure for all cancers.”
Your child has cancer.
There are no words more frightening to any parent. But most don’t realize
that cancer is the #1 disease-related cause of death for children under the age
of 14 years, next to accidents. While significant progress against childhood
cancer has been made (up to 70% of all children with cancer can be cured),
cure rates for some types of pediatric cancers remain below 50 percent.
Over 20,000 children (in the United States) are diagnosed with cancer each
year. That's a classroom full of children every single day, year after year. In
fact, one out of every 250 young adults living in the U.S. will have survived
childhood cancer.
Childhood cancers are mostly those of the white blood cells (leukemia's),
brain, bone, the lymphatic system and tumors of the muscles, kidneys and
nervous system. Each of these behaves differently.
The causes of childhood cancers are largely unknown. Treatment is often
lengthy, and always time-consuming. Some diagnoses are treated on an
outpatient basis for over three years; others require lengthy inpatient stays.
Laura’s story
Growing Upwith Cancer
8
Frank Gonzalez was a 16-year-old
high school junior looking forward
to the homecoming dance, when a
lump at the back of his head
changed his life.
Frank didn’t think much of the
lump when he first discovered it.
But after a haircut in preparation for
the dance, with the shaggy hair that
once hid the lump gone, it was clear
to the teenager’s mother that the
lump needed to be evaluated by a
professional.
Doctors assured Frank and his
family that the lump, while needing
to be removed, was nothing serious.
Not wanting to miss school, the
Gonzalez family decided to
schedule the surgery for the
Thanksgiving break. A phone call
not long after the surgery changed
the family’s lives.
“The following Monday,” Frank
recalled, “they’d analyzed it and it
came back as cancer.”
Subsequent visits to an oncologist
and an unexpected diagnosis of non-
Hodgkin’s lymphoma led to drastic
changes for the teenager.
He left school on the
recommendation of his doctors, due
to concerns of immune
deficiency and
neutropenia, a low count
of certain white blood
cells that are integral to
fighting infection.
The remainder of the
school year was devoted
to treatment, as Frank
spent months in chemotherapy and
then radiation treatment.
Dealing with chemo, radiation
therapy and the transition from high
school to home schooling would
have been trying on any teenager
and their family, but the Gonzalez
family experienced even greater
heartbreak during an already-
difficult time.
Frank’s father passed away,
making the ordeal much more
significant.
Frank returned to school for his
senior year and graduated on time.
Having gone through diagnosis,
treatment and the grief of losing his
father shaped his perspective, which
greatly differed than that of his
peers.
While other teenagers were likely
worried about popularity, crushes
and other typical teenage concerns,
Frank wasn’t as wrapped up in them
anymore.
“I became a lot less bothered by
stupid things,” he said. “The dramas
of high school weren’t a big deal to
me.”
And his new perspective seems to
have endured into adulthood. These
days, the 27-year-old recognizes
how his experience with cancer
changed him.
“I think I’m much more down to
earth,” he said. “If things aren’t
going well — problems life tends to
throw at you — I don’t get irritated
by negative situations anymore.”
Anxiety over recurrence can be a
concern for adults who survived
cancer as a child, but Frank is
optimistic.
“For me, after the second year [of
checkups], I actually felt it was
annoying,” he says. “I felt fine. But
my mom insisted.”
As monthly checkups turned into
less frequent occurrences, Frank
didn’t think about his childhood
bout with cancer much. In fact, this
year, the 27-year-old will be
officially declared cured of non-
Hodgkin’s lymphoma.
“I know I’ve been [cured] for
years,” he said, relieved at no longer
having to make the visits for testing.
As an adult, Frank feels that his
overall health has been normal and
cancer-free, having experienced no
noticeable side effects despite the
risks of treatment.
And although he was told his
treatment carried little risk when it
came to creating his own family,
Frank said that he is a little
concerned about the possibility of
not being able to be a father, but he
knows that he’ll be able to deal with
whatever comes.
While the experience of
childhood cancer is as varied as the
children who go through it, a
common thread can be found among
survivors: optimism.
It is this optimism, in tandem with
the love and support of family, that
often helps these young warriors
face a very grown-up experience
that molds the full lives they have
ahead of them.
Frank’s story
9
Cancer often sneaks up when you
least expect it, turning your
world and your family's world
upside down. Young children
have a very difficult time
learning to cope with cancer
becoming part of their life
because of all the changes the
family will experience and the
numerous questions they have.
While coping with cancer is in
no way easy, there are 5 tips that
can help your children cope
when cancer has come into your
family's world.
1. Let them know what's going onExplain to your child what is going on.
Use age appropriate terms for the
children to understand. Depending on
your child's age, you should determine
just how much information you will
share with them about the severity of
the cancer. Let the rest of the children
know it will be a very difficult time for
everyone, which is why the support of
the family is essential. It is very
important that your child knows about
the situation so they are not caught off
guard by the cancer and the changes.
2. Talk about the changesYou need to talk about the changes that
are going to occur while the family
copes with cancer. Explain the physical
changes that will occur, such as hair
loss, decreased weight, and fatigue.
Preparing the children for what they are
going to see will make the situation less
scary for them once it does occur.
3. Remain honestWhile helping children cope with
cancer, it is important you remain
honest with them to keep their trust. If
they ask you if you are scared, it is ok
to tell them you are, but reassure them
that everything will be all right. By
remaining honest with your children
while coping with cancer they will feel
safer because they will know they are in
a trusting environment.
4. Maintain a routineChildren feel safe and comfortable
when they are products of a routine.
Even though cancer is turning your
family's entire world upside down, try
to maintain a daily routine as much as
possible. This will show your children
that there is a tomorrow and although,
the family is going through drastic
changes, the family will continue to
maintain a certain sense of normalcy.
5. Spend quality time togetherWhile coping with cancer it is vital to
spend quality time with all the children.
This is absolutely essential for a child's
sense of safety and overall well-being.
While it may be difficult to spend
quality time together with all the
doctors’ appointments and treatments,
spending time together will build a
strong family unit, which will increase
support for one another while the family
copes with cancer.
Source: Alyssa Ast, Yahoo Contributor
Network
5 tips to help children cope & hope
About 4,000 children die from cancer each year. That's 11 children every single day, every single year.
Like adults, early detection remains paramount. Be aware of the potential signs of childhood cancer and,
when in doubt, see your physician/healthcare provider.
Continued, unexplained weight loss
Headaches, often with vomiting, at night or early morning
Increased swelling or persistent pain in bones, joints, back, or legs
Lump or mass, especially in the abdomen, neck, chest, pelvis, or armpits
Development of excessive bruising, bleeding, or rash
Constant infections
A whitish color behind the pupil
Nausea that persists or vomiting without nausea
Constant fatigue or noticeable paleness
Eye or vision changes which occur suddenly and persist
Recurrent fevers of unknown origin
10 11
“There’s a Monkey in My Chair”
Through this amazing program, each child is
provided with a "monkey kit" which includes a
big stuffed monkey that takes their place in school
when they are unable to be there. The kits include
the monkey with a backpack, a book to help
teachers explain to students the situation their
classmate is facing and how it affects them,
teacher companion guide, along with other items
that can be utilized by the child and/or their
classmates. All kits are sent out at no cost to the
families or hospitals.
In addition to each "Monkey Kit," each child will
be given online access to Monkey Message.
Monkey Message is an online component that
allows the sharing of pictures and documents to
ensure the line of communication stays open
between the patient and the classroom. Included
in the Monkey Message portal are regular
educational activities for the classroom and
patients to do that help to foster interaction of
students while incorporating key educational
tools.
To order: monkeyinmychair.org
Communicationand Educationabout Cancer
by Michelle J. Brown
Attending school helps children with cancer feel
normal. Children who continue their schooling,
whether in the hospital, at home, or in school, are
able to retain part of their regular routine and
connection with their peer group through the
shared experience of education. Whether or not they attend
school in the traditional sense, keeping up with schoolwork and
learning helps to give children with cancer a sense of stability
and normalcy in a hectic and often frightening time.
Educators have a significant role to play in encouraging
children's integration into a normal life routine. At the same
time, it is natural for teachers to have concerns and worries
about having the child in their classroom. Educators need
practical strategies and support to help children with cancer
during diagnosis, and before, during, and after treatment.
Communication with parents and those directly involved with
the child's needs is a vital aspect in supporting the child with
cancer.
Principals and teachers should take an active role in
establishing communication as soon as possible rather than in
reaction to a crisis. They should maintain this interaction
throughout the child's formal school years. As students mature,
they may be able to assume some responsibility for
communication.
As the school administrator, the principal is the continuing
link with the child and family and must keep informed of and
assess information to be communicated within the school, as this
changes over time.
Educators can facilitate students moving from elementary to
secondary school by establishing good communication between
the two schools.
To prepare for talking with the student about their illness,
which can be difficult, teachers should find out from parents
what the student knows about their illness and how much
parents want them to know.
Students may know they are very ill and be afraid that they
might die, but may be too scared to talk to their parents.
Sometimes an independent counselor, such as a teacher or
psychologist, can help relieve anxiety and ease communication
among family members about these difficult issues.
Communication Tips Initiate and keep in regular contact with the parents to be
current on the child's progress at the hospital, at home, and at
school.
Contact the related treatment and support team, as
appropriate, to get information on the impact of the disease on
the student and family.
Visit the child in the hospital and at home to maintain the link
with school, and offer support to parents.
With parental permission, provide all school staff with
sufficient information and understanding of the student's
condition so they can contribute to a safe and caring learning
environment as the student progresses through their illness.
Returning to SchoolThe student may initially return to school on a part-time basis.
This transition takes place slowly and depends on the rate of
recovery and the ability of the school to provide appropriate
support.
Educators must work closely with parents and medical staff to
plan the transition. Important decisions should be made about
what to tell other children and how much the child can be
expected to achieve when they first start back. With older
children it is important that their view be respected when their
return to school is discussed.
Make the necessary preparations to deal with students who are
reluctant to return to school.
Look out for potential learning disabilities.
Observe any physical problems the student may be having at
school and respond appropriately.
Recognize emotional and behavioral changes, follow up with
parents, and access professional assistance, if necessary.
Home InstructionHome instruction is most useful in the period after diagnosis.
Children go in and out of hospital so much that attending school
regularly is impossible. Attendance varies with each individual
case; however, it is possible for them to miss as much as three to
twelve months or more of school after diagnosis.
Each province and school district differs in the resources they
have available for home instruction. Some are able to offer
limited support as soon as it is needed, while others do so only
when children miss a specified amount of time.
Principals should be familiar with the policies and procedures
in place for home schooling and records of attendance within
their schools and boards.
* Recognize the student's ability, e.g., short concentration span,
and program accordingly.
* Collaborate with the home tutor who can be a bridge between
home and school.
Source: childhoodcancer.ca/educators-guide/practical-strategies
12 13
Creative
Kids
AIM Programwww.creativekidsart.com
The Children’sHospital atProvidencewww.sphncom
El PasoChildren’sHospitalwww.elpasochildrens.org
The J. Leighton Green, Jr.,
Cancer Resource Center
The GreenHouse www.rgcf.org
RonaldMcDonaldHousewww.rmhcelpaso.org
Locks of Lovewww.locksoflove.org
The Leukemiaand LymphomaSociety www.lls.org
Children’s Grief Centerwww.cgcelpaso.org
People and Places you need to Know in El Paso when your child has cancer
For a hospitalized child, theabsence of routine, the schoolenvironment and a disruptedhome life can be overwhelming.Enter Creative Kids who offerProject AIM (Arts in Motion) topediatric oncology patients atProvidence Children’s Hospital.Through this program, the patientsare engaged in a visual artscurriculum ranging from paintingon canvas, printmaking and watermedia to graphic design classeson iMac G-5 computers on whichthey learn to navigate AdobePhotoshop and Illustrator. Animportant component of theprogram is showcasing theartwork created by these childrenin various galleries throughout thecommunity. The exhibitions servetwo great purposes: to make thepublic aware of the depth ofthought, inspiration and creativitythat these children have to offer,and to provide opportunities thatallow the children to feel a senseof fulfillment and accomplishmentin the face of great adversity.
The billboard for theChildren’s Hospital atProvidence boasts havingserved a gazillion children inits service to the El Pasocommunity! The staff of theChildren’s hospital receivesspecialized training in thetreatment of children. Manymembers of the nursing staffhave received PALS(Pediatric Advanced LifeSupport) certification.Additionally, the hospitalhosts Children's SpecialtyClinics which teach childrenand their families how tomanage and live with achronic illness while alsoaddressing those withmultiple health problems.
At EPCH, the belief thatpatient- and family-centeredcare is an essential part ofeach family’s experience isparamount. Family-centeredcare is an approach to healthcare where patients, familiesand health-care professionalswork together to best meet theneeds of the child and theentire family. In response tothe unique needs of pediatriconcology patients, thedepartment of Hematologyand Oncology at the ElChildren’s Hospital has privatepatient rooms, OutpatientInfusion Center, Kid and TeenPlay Rooms, Family LoungeAreas and 24/7 attendees whospecialize in PediatricHematology and PediatricOncology.
The J. Leighton Green, Jr.Cancer Resource Center isaffectionately named for the ElPaso attorney whose battlewith Acute Myeloid Leukemia(AML) ended in 1998. The“Green House” name itselfevokes light, hope, help andhealing. The Green Houseprovides cancer, health andwellness information forpatients, caregivers andmedical professionals invarious mediums – books,pamphlets, audio and videoofferings as well as a stand-alone, bilingual touch screencomputer (Cancer HelpNet™)dedicated exclusively tocancer related topics. In this,the only dedicated healthlibrary in the region that is freeof charge, patrons can relax ina quiet, comfortableenvironment and researchtheir various questions aboutthe cancer experience.
The cornerstone program ofRMHC of El Paso, the RonaldMcDonald House offersfamilies whose children arebeing treated at local medicalfacilities a “home away fromhome”. Located minutes fromthe Medical District, the state-of-the-art House creates anenvironment of love andconcern for families withseriously ill children. The 10-suite home offers cozy privaterooms, plush living/visitingareas, a spacious industrialkitchen, as well as the supportof a warm, caring staff. Thefirst Ronald McDonald Housewas located at 1017 Montana,known to passersby by thewaving Ronald McDonaldoutside the gorgeous,Victorian home. As timepassed and the need grew toaccommodate more families,the Board of Directors, withthe help and generosity of theborder community, opened thedoors of the new home,located at 300 E. CaliforniaAvenue, in 2002.
Operating under the missionto return a sense of self,confidence and normalcy tochildren suffering from hairloss, Locks of Love is a publicnon-profit organization thatprovides hairpieces tofinancially disadvantagedchildren in the United Statesand Canada under age 21suffering from long-termmedical hair loss from anydiagnosis. By utilizing donatedponytails to provide thehighest quality hair prostheticsto financially disadvantagedchildren, Locks of Love meetsa unique exclusive need forchildren. Many of the childrenusing LOL services suffer fromhair loss due to chemotherapyand other medical conditionssuch as alopecia areata. Theprostheses provided help torestore their self-esteem andtheir confidence, enablingthem to face the world andtheir peers.
The mission of The Leukemia& Lymphoma Society (LLS) is:Cure leukemia, lymphoma,Hodgkin's disease andmyeloma, and improve thequality of life of patients andtheir families. As the world’slargest voluntary healthagency dedicated to bloodcancer, LLS funds lifesavingblood cancer research aroundthe world and provides freeinformation and supportservices. El Paso residentsare served through theAlbuquerque New Mexicooffice and some financialassistance is available throughL&L programs.
A non-profitorganization thatprovides healing andhope in a safe andloving environmentfor grieving children,teens and theirfamilies following thedeath of a loved one,the Children’s GriefCenter exists to servethe needs of childrendealing with grief andloss. By sharing theirexperiences andfeelings in a peersupport group,families learn thatthey are not aloneand that there is hopefor their future.
by Patty Tiscareño
1514
Ask a cancer survivor how they find
new meaning in life after cancer and
you’ll get several responses. Some
see it as an opportunity to assess
their lives and make changes. Others
call it a ‘wake-up’ call for taking
charge of their health and wellness.
But for the cancer patient who is
diagnosed at age 20 or 30, life is just
beginning. So how does a young
cancer survivor approach the question
of living fully after cancer?
According to the Childhood Cancer
Survivors Study (CCSS), the leading
consortium in late-effects research,
one in every 640 young adults aged
20 to 39 years old is a cancer
survivor, which means that there are
now about 270,000 childhood-cancer
survivors in the U.S. As survivors
age, it is important to monitor their
health and provide updates about
potential ways to reduce the risks of
late effect.
Enter the Cancer 180 program of
the M.D. Anderson Cancer Center in
Houston, Texas. The brainchild of
Program Coordinator, Marisa Mir,
Cancer 180 targets a largely
overlooked population; young adult
cancer survivors.
“Young adult survivors have needs
unique to their age group that are
broader in scope, longer lasting and
more anxiety –laden than those of
older survivors, due to the time of life
at which they are confronted”, says
Mir.
The Cancer 180 program is a multi-
pronged approach which
includes social networking
opportunities, educational activities
and a web site to help young
survivors move into adulthood and
beyond with the skills and support
they need.
The Rio Grande Cancer Foundation
is proud to be the local coordinator for
the Cancer 180 conference which will
be held in El Paso in June 2013.
Targeting such issues as
• Education and employment after
cancer
• Fertility and body image
• Long term survivorship challenges
• Preventing a recurrence
• Nutrition and exercise
• Navigating insurance and legal
rights
• Chronic medical conditions
The all day conference will offer
networking for young adult survivors,
caregivers, family and friends.
“We are so proud that M.D. Anderson
has chosen El Paso as a host site for
this remarkable event,” says Jutta
Ramirez, Program Officer for the Rio
Grande Cancer Foundation. “We will
be working closely with a network of El
Paso providers such as the El Paso
Area Candlelighters, the El Paso
Affiliate of Susan G. Komen for the
Cure and the Leukemia and
Lymphoma Society to help design and
implement a program exclusive to
young survivors”, she added.
Future issues of In the Know:
Understanding the Cancer Experience
will include news and updates about
the conference.
Here is a list of some of the
resources available to you as a
young adult patient, survivor or
caregiver.
AKP Foundation: The Always Keep
Pedaling Foundation provides young
adults with the means to use adventure
sports to assist, inspire and energize a
comeback from invasive cancer
treatments.
American Cancer Society: offers a
variety of programs, services and
resources for patients, survivors and
their families.
Anderson Network: an MD Anderson
Cancer Center based program that
provides hope, support and
understanding to patients, survivors
and caregivers from others who have
been there, regardless of where
treatment is received
Athletes 4 Cancer: dedicated to
harnessing the healing power of the
elements with the determination of the
human spirit to impact lives affected by
cancer through surfing, kiteboarding
and stand up paddling camps.
Bright Pink: focuses on the prevention
and early detection of breast and
ovarian cancer in young women while
providing support for high-risk
individuals through online forums and a
peer support matching program.
LIVESTRONG: offers a variety of
programs, services and resources
for patients, survivors and their
families; specific resources are
available for young adults
MD Anderson’s Cancer 180
Childhood Cancer Survivor Event comes to El Paso in 2013
Cancer 180 –
Because when
cancer strikes,
life does a 180
1716
Paint the world gold!
September is Childhood Cancer
Awareness Month. In the U.S.,
childhood cancer is the #1 disease killer
of children. Like most people, I didn’t
know. I may have seen a story here and
there about a child dying of cancer. But
that it is the #1 disease killer was
unknown to me. Childhood cancer is
just not spoken about. It tends to be too
difficult a subject to deal with.
I have seen all the pink ribbons creating
awareness about breast cancer. I have
even volunteered, walked, and donated
in hopes of finding an end to cancer. I
too have been frustrated, angry, and
saddened that I had lost too many
friends to cancer.
But children – children get cancer? So
where are all the ribbons to symbolize
childhood cancer? Like most people I
didn’t know that there was a gold
ribbon for childhood cancer until a
friend invited me to join the board of
Candlelighters.
From that day on my life changed, as
the kids say it took a 180. I have been
blessed. Yes blessed. Every day I get to
know and spend time with these brave
warriors and their families. They have
taught me courage; given me a deeper
understanding of faith; to never quit or
lose hope in spite of what things may
look like; and they have taught me that
today is what is really important. They
have shared their triumphs, their
struggles and their fears.
Nothing can prepare you for the words
“your child has cancer.” Yet, every three
and a half minutes somewhere in the
U.S. there is a parent who hears those
words. With these words, normal life
stops and a difficult new journey
begins; a journey that will test families
physically, emotionally, spiritually,
socially, and financially. Several of our
moms have emphasized how alone they
felt and how little public understanding
there is. “When they see children
without hair and their mouth
covered…they stare and are afraid that
what my child has is contagious,”
explained one of our moms.
Our goal at Candlelighters is that “no
child should face childhood cancer
alone.” From the moment of diagnosis
and throughout treatment Candlelighters
is there to provide financial, spiritual,
social and emotional support for
children with cancer and their families.
I have seen first-hand how financial
pressure further adds to an already
stressful time. Every day one of our
parents will call to get help with utility
bills, rent, or gas money to drive back
and forth from home to hospitals and to
daily doctor appointments. During the
first, inpatient, week of treatment the
sum of income lost plus additional
expenditure exceeds 50% of total
income in over 45% of families. (British
Medical Journal: “Financial burden of
childhood cancer.”
Our parents attend weekly workshops
on stress management, anger control,
improving communication, care giving,
and strengthening marriages. These
workshops and the times of sharing are
important to the parents. As one mom
explained, “we have good days and then
the next day can be really bad…life just
changes so dramatically and getting
together with other parents helps.”
Working at Candlelighters helps me to
understand some of the day to day
events that family members have to go
through while caring for their child.
When our families come to the
workshops it becomes a time to stop
what I am doing and catch up with what
is happening in their lives. To share
hugs, laughter, stories, and on
occasion even some tears.
I have visited children in the
hospital and learned a lot from
the interaction between child and
medical staff, parent and
medical staff, child and parent,
and parent and other
caregivers.
One of my favorite times, and
there are many, is camp.
Every year we hold two
week-long summer camps –
Camp Bravo for siblings and
Camp Courageous for our
kids with cancer. The
excitement of getting ready for camp builds
for weeks for staff, counselors, parent and
kids. Camp is a time to be just a kid; not a kid
with cancer. It is a time to make new friends;
to challenge your limits; to rebuild your
confidence and independence; to get away
from the daily routines of dealing with
cancer; and a time to have fun and laugh till
your sides hurt. “I forgot about Thomas the
Tumor for a moment and just had fun,”
explained one of the campers.
Earlier this year, I sat in the hospital room
with a very special young man and promised
him that I would tell his story and all of his
friends’ stories. He
wanted to teach kids, “to be strong; never
take family, friends, or life for granted. Never
give up on yourself and God. I want to show
people that ‘even with the mountains and
uphill battles’, you have to keep fighting and
live your life to the fullest.”
I miss him and all of our angels dearly but I
will keep telling their stories and someday,
maybe someday, the world will be painted
with gold ribbons and a cure for childhood
cancer will be found.
Know more>
Beate Burdett
Organization lights up the lives of
children with cancer
18 19
BUNDLE OF HOPE is designedspecifically for newly diagnosedchildren. This duffel bag style carepackage includes comfort items such asa blanket, a stuffed animal and literaturespecific to the respective child’s form ofcancer. It also includes pertinent itemslike a thermometer, pillbox, hot/coldpack, toiletries, a monthly planningjournal and other miscellaneous itemsneeded for daily care.
PRIZE BOX is a program through whichwe provide small toys, stuffed animals,etc., for clinical or traumatic procedures,birthdays, and other celebrations.
CARE-A-VAN is a shuttle serviceavailable to assist children and theirfamilies with local transportation.
EMERGENCY LIVING provides funds tofamilies who are unable to cope withbasic living expenses such as rent,utilities, auto repair, etc.
EMERGENCY MEAL VOUCHERS areprovided for families to use at thehospital cafeteria while their child ishospitalized or on extended clinic visits.
EMERGENCY MEDICAL FUNDS areprovided for families that require
monetary assistance with wigs, personalcare equipment, and prescription drugs.
EMERGENCY TRAVEL FUNDS areprovided for families needing assistancewith out-of-town transportation formedical treatment.
EMERGENCY FUNERAL FUNDS areavailable to assist families when theirchild has lost his or her battle withcancer.
FOOD PANTRY is a complete pantry ofcanned foods and staple items. Inaddition, funds are available for families
FINANCIAL ASSISTANCE
to purchase perishable items. As of March2009, we have become a member of theWest Texas Food Bank and can offer ourfamilies more than just staple items.
ADOPT-A-FAMILY is designed to help ourfamilies during the holidays. Familiesreceive food and gifts in an attempt topreserve the sense of connection and joytraditionally associated with the Holidays.
SCHOLARSHIPS is a program offeringfinancial assistance to cancer survivorswhose education was interrupted ordelayed by cancer.
SOCIAL/RECREATIONAL SERVICES
Children with cancer are first andforemost still children and want to betreated the same as children withoutcancer. They want the opportunities torun, play, swim, and enjoy being withother kids. Candlelighters gives children,their siblings and their families a chanceto enjoy normal childhood activities. Our week long camps – CAMPCOURAGEOUS, for our kids withcancer, and CAMP BRAVO,for the siblings,
are anopportunity for them to go
horseback riding, participate in sports,games, campfire sing-a-longs, crafts,and the usual antics that are traditional
at all camps. Camp is not just a placeto escape rather it is a place to developcharacter. According to research, whenchildren with cancer attend camp, theydevelop better self-concepts, enhancetheir self-esteem, gain control of theirexperiences, learn new activities, anddevelop character.
For our younger ones,we have CAMPLITTLE ONE, a oneday minicamp. Aplace to play; aplace to giggle; aplace to be a kid;and a place to feelspecial.
Our TEEN
RETREAT is agreat way forteens to sharetheir uniqueexperiences.We rent ahuge condowhere a
dozen initially shyteens come together for snow
tubing and all night conversations. Bythe time they come home, new strengthsto persevere and friendships have beendiscovered.Our parents, too, enjoy some respite.The weekend starts with a special
private time were couples are pamperedand given an opportunity to reconnect.The next day, they come together as agroup and guest speakers providesessions on communication skills, angermanagement, coping, stress relief andrelaxation techniques. During CAMPUNITED we encourage parents toreestablish their commitment to eachother and through a united front fight thebattle of childhood cancer together.
THERAPEUTIC/EMOTIONAL
SERVICES
ACTIVITY CENTER is a safe,educational, and interactive environmentfor patients and their families while thechildren wait for test results or whileseeing their physician. To help ourfamilies feel at home, we offer a waitingarea, library, and internet services aswell as a play area with activities suchas arts and crafts, videos, and computergames. We are staffed with a FamilyCase Manager with a degree in socialpsychology. Experienced in earlychildhood development, she helps thechildren and their family members copewith their treatment through techniquesthat include therapeutic play, creative arttherapies, and self expression activities.Our program is also structured toprovide therapeutic services to helpreduce the stress and strain on thefamily and the marriage.
ESPERANZA PROGRAM provides trainingand support workshops to caregivers with aspecial focus on stress reducing techniques,communication techniques, and educationalworkshops focusing on childhood cancer,nutrition, exercise, finances, angermanagement and parenting skills. Theseworkshops are offered in English andSpanish. The workshops provide criticallyneeded emotional and psychologicalassistance to help the families during time ofoverwhelming stresses and concerns.
REMEMBER ALWAYS is a one-day seminarproviding information to individuals who havelost a child to a catastrophic illness such ascancer. For many parents, life after thechild’s death is unbearable; thus we exploredifferent programs and activities that helpfamilies live beyond the death of their child.
SCHOOL RE-ENTRY CONFERENCE informsteachers, school nurses, principals,counselors, and the community at large aboutthe difficulties that may arise frommisunderstanding the physical, academic, andemotional repercussions or side effects ofchildhood cancer. Many of our children mustpursue an education home bound or in thehospital. When the joyous occasion arises tobe readmitted into the public school system,not everyone is prepared to deal with it. Ourfocus is to reunite and effectively integrate thechild back into the system through aneducational opportunity of understanding forthe institution.
Know more>
20
By Erika Aragon
There are many words used todescribe artists and art teachers. Braveis not the word that might immediatelycome to mind, but in the case of Andreaand Stephen Ingle it should be. Itseems fitting word for two people whochose to devote their lives to bringingart to the children facing terminaldiseases in El Paso.
Creative Kids, the non-profitorganization co-founded by Andrea andStephen, brings art in different forms tothe pediatric oncology patients ofProvidence Memorial Hospital. Theirprograms incorporate assortedmediums and curriculums specificallydesigned for the varying ages and skillsof the patients they work with in thehospital and in their downtown studio.
Despite the positivity that comes fromboth of them, they encounter death andillness daily but have never let that getin the way of their passion.
"They told us when we started, ‘Don’tget attached to the kids. Don’t getattached to their families.” We werelike, ‘Ok,’ and we just jumped in.”recalls Andrea, but neither Andrea nor
Stephen have put a barrier betweenthem and their young artists in thetwelve years since this organizationbegan.
“If you make art you can’t have adetachment. There’s this connectionbecause you’re making stuff togetherand after time you learn about theirfamily, their personalities, what theylike, their favorite color, their favoritemovie” says Stephen.
The sadness and negative feelings donot outweigh the effect that workingwith these children has on Andrea,Stephen and the staff of Creative Kids.
“It’s a gift to spend that quality timeand to teach something that we love todo. They’re getting something out of itwith the limited time they have,”Stephen acknowledges because thework that the patients have a chance tomake with Creative Kids sometimesoutlasts the artist who created it.
“Knowing that when these kids passaway that their legacy is left behind. It’sjust nice that we have the memory togive to their families.” Andrea says.Some of the work that doesn’t go homewith the families is displayed in thegallery at Providence hospital.
However hopeful they are about theeffects art has on these patients andfamilies, they acknowledge the pain andsadness they have felt over the years.When they speak of their formerstudents they recall each of them byname and with an obvious love thatthey have for the time they were able tospend with each child.
“I don’t’ think we ever get over it. I’mthinking of the very first kid that everpassed away and I remember it like itwas yesterday. His name was Gerardand he was amazing. He was 17 andjust awesome. Of course, we weresuper close to him and his family andwe weren’t supposed to,” Andrearemembers. “At that point I think wewere there a year. So that was our firstloss. We went this whole time and Iremember getting to the hospital andwe knew something was off.”
“That one wasn’t expected,” shecontinues. “With some kids you know.There’s a decline and you kind ofprepare yourself, but this one was fromone day to the next and he was gone. Ijust don’t think you ever get over it.”
“Mainly, it’s very positive what we do.But every once in a while, when one of
those kids passes away, it’s painful.”Stephen says.
Living together and working atadjacent desks means that Andreaand Stephen completely understandwhat goes into moving Creative Kidsforward, despite the inevitablesadness.
“Our outlet is cooking. We like tosnowboard. Andrea hikes themountain and I like to sleep.Sleeping is good. “ Steve is an artistin his own right and has plans toreturn to painting one day, butsketches in the meantime. Andrea,with a background in education,struggles to describe her ownartistic talents, but jokes, “Grants. Iwrite grants. That’s my art form.”
Creative Kids has beenrecognized by the NationalEndowment of the Arts as a Best-Practice Model and the work they doin the hospital and their studio isadmirable. It would be an asset inhospitals around the country and theworld, but El Paso is lucky to havethe Ingles working with the kids ofthis community.
mind, body, & soul
Creative Kids founders reap manybenefits yet cope with loss
Aaron, Age 17Testicular Cancer
Ayanna, Age 9Leukemia
what I know now
Rachel Schaeffer BarrazaThese book selectionsare available at The Green HouseResource Library
MAIN BRANCH
Del Sol Regional Oncology
Center
10460 Vista Del Sol, Suite 101
El Paso, Texas 79925
562-7660
WEST CENTRAL:
Las Palmas Medical Center
1801 N. Oregon
El Paso, Texas 79901
EAST:
Texas Oncology
El Paso Cancer Treatment
Center
7848 Gateway East
El Paso, Texas 79915
CENTRAL:
Texas Oncology
El Paso Cancer Treatment
Center
1901 Grandview
El Paso, Texas 79902
NORTHEAST:
William Beaumont Army Medical
Center
5005 N. Piedras St.
El Paso, Texas 79905
visit www.rgcf.org
in the greenhouse
Me and My Marrow: A Kid's Guide to Bone Marrow
Transplants
by Karen Crowe
This book explains what bone marrow is and what happens
during a transplant.
Oliver's Story, for 'Sibs' of
Kids with Cancer
by Michael Dodd
This book tells a story about
one child. But there is an
important story to be told for every brother or sister of a
child with cancer. That's because when you find out your
brother or sister has cancer, all of a sudden, life can kind
of get turned upside down.
Taking Cancer to School
by Kim Gosselin, Karen Schader Tom Dineen
These beautifully illustrated and fun-to-read storybooks
simplify and normalize complicated childhood conditions, like
cancer. When read aloud, other children can identify why a
peer may be treated differently and begin to empathize with
them. In addition, children whose conditions set them apart as
being different begin to feel accepted and safe. Each book
includes a Kids' Quiz to reinforce new information and Ten Tips for Teachers to
provide additional facts and ideas for teacher use. In Taking Cancer to School, Max is
diagnosed with leukemia. This straightforward story may help to alleviate some of the
concern that accompanies the diagnosis of childhood cancer.
What Is Cancer Anyway?: Explaining Cancer to Children of All Ages
by Karen L. Carney
What IS Cancer, Anyway? Explaining Cancer to Children of All Ages is
one of the books in the Barklay and Eve Children's Book Series. This book
provides basic information that is essential when someone in the family has
cancer and does so in a calm, clear, reassuring manner that children and
adults will appreciate. Barklay and Eve, the two lovable main characters, define
cancer, explain radiation and chemotherapy (including the reasons why some people
lose their hair). This is a hopeful story which has a fun connect-the -dots page of the
American Cancer Sociey's symbol of hope.
Fighting Chance: Journeys Through Childhood Cancer
by Harry Connolly, Tom Clancy, Curt I. Civin
Containing 200 images, this book follows courageous patients, strong families, and
brilliant caregivers battling cancer in and out of the hospital.
Photographed over the course of three years, it includes contributions
from best-selling author Tom Clancy and Dr. Curt Civin, Director of
Johns Hopkins Hospital's Pediatric Oncology Unit. Other insight comes
from nurses, parents, siblings, and the children themselves. Not only is
the book a learning tool, it attests to the fact that today more and more
children survive their cancer.
I am 25 year old woman and an ovarian cancer survivor! I was first diagnosed with ovarian
cancer (juvenile granulosa cell tumor) on July 24, 2009 after I had a left oophorectomy with the
tumor removed. I was blessed that the cancerous tumor, the size of an orange, was completely
encapsulated within the ovary and I required no further treatment at that time, just monthly
checkups. I went two years without any signs and symptoms until one checkup when my tumor
marker was elevated. An arthroscopic surgery revealed the cancer had returned but we caught
it early, stage Ic. I was re-diagnosed on August 23, 2011 but elected to postpone portacath
placement and chemotherapy until after my physical therapy licensure exam. I underwent 6
chemo sessions (each lasting about 7 hours) over a span of 18 weeks from October to February.
I am excited to say my hair has returned and I have been cancer free for 6 months.
1. What was your initial response to hearing the
words “you have cancer?”
The first time I was told the tumor was cancerous it
never really sunk in. Because I didn’t require further
treatment at that time I guess it didn’t really hit me
that I had cancer until I was re-diagnosed. The second
time I heard “you have cancer” I thought, well this
isn’t what I had planned, I mean the odds of the cancer
returning were small, but I guess God had other plans
in mind for me. I can remember being with my mom
and oncologist when he told me and we just started
praying. The next day I went into game mode and we
started planning how to beat the cancer again. I would
be lying if I said I wasn’t scared but I found comfort
in knowing we had caught it in an early stage.
2. What has been the greatest challenge about
having cancer?
I would have to say it is hearing people, especially
those in the health care field, say “but you’re so
young” or “you’re too young to have ovarian cancer”
or even better “you look like you’re so active.” Even
though the statistics heavily point to older women
experiencing ovarian cancer, the truth is cancer does
not discriminate against age or activity and can occur
at any age. I have been active and healthy all my life,
this type of cancer is not genetic, it just happens. I
have taken this challenge in my life and turned it into
my mission to educate others especially young
women about the early warning signs of ovarian
cancer. I was blessed to catch it early and I hope to
provide others that same opportunity.
3. Who or what has been your inspiration during
the cancer journey?
It would be hard to name just one person who was
my inspiration throughout my journey because I was
blessed to have so many. Looking back I get very
emotional just thinking about all the people that were
there for me day in and day out, bald and nauseous,
weak and tired, to pick me up and give me strength.
My daily inspiration came from my faith in God, my
rock and husband Andy, my parents, family, friends,
coaches, coworkers, healthcare professionals,
providence team, RGCF, and other cancer survivors of
all ages. When I first lost my hair a group of close
friends and family shaved their heads in unison and I
really felt like that gave me even more strength. It’s
truly inspirational to see the little kids and elderly
undergoing chemo and fighting the same fight I was;
I would think to myself if they are doing it why can’t
I. I also gained inspiration from my patients at the
rehab hospital (I’m a PT) who were pushing
themselves daily to get better and would brighten my
day with a smile.
4. What have you learned about yourself since
your cancer diagnosis?
That no matter what life throws at you, with faith,
family and friends all things are possible. This may
sound cliché but things happen for a reason. I know
after we (yes me and my support system) beat the
cancer the sky is the limit. I have gained even more
compassion for my patients after those rough few
months and am confident when I tell them things will
get better. I learned that from personal experience you
can help others to grow and give them strength and
that is why I have chosen to share my story with so
many people.
5. After cancer treatment, many survivors want to
find ways to reduce the chances cancer recurrence.
As a result of your cancer experience, what lifestyle
changes have you incorporated?
I have always been active and somewhat healthy
but my urgency for exercise and healthier lifestyle has
definitely increased since my cancer experience. I
gained weight during chemotherapy, even with a
decreased appetite, due to the medications and
decreased exercise intensity so I really hit the gym
hard once I was cleared and am happy to say I have
returned to my fighting weight. The best
recommendation I can make is to stay active even if it
is walking at 1.0mph on the treadmill during
chemotherapy because it gave me more energy. It
sounds like a contradiction but exercise in moderation
has been shown to improve energy and mood during
chemotherapy.
6. It has been said that life after cancer is the
beginning of a “new normal”…life is not like it was
before cancer. What is your new normal?
I have hair now and I am excited to say when I have
a bad hair day because that always beats a bald day. I
am transitioning to working full time at the rehab
hospital and I love that working and being a wife (not
the best cook at all) has become my new normal. I
guess the biggest change is that I don’t let anything
hold me back, if I want to do something I just go for
it because life is too short not to live every day like
that.
I am dedicating my life as a cancer survivor to
helping other cancer survivors (a survivor is from the
moment of diagnosis). We have developed a T.E.A.L.
fund to help raise awareness for ovarian cancer by
providing young women education about the early
warning signs in hopes of detecting the cancer at an
early stage and increasing the survival rate. Everyone
knows what the color pink represents and even blue
for prostate cancer, but how many people know that
teal is the color of ovarian cancer and September is
ovarian cancer awareness month? It is my mission to
join others in the fight to help raise awareness for
ovarian cancer in hope of one day finding a cure.
My new normal is living life to the fullest, with a
huge smile on my face, my man and family by my side
and looking forward to having kids of my own.
7. What advice can you offer someone facing a new
cancer diagnosis?
The “C” word can be scary and bring about a mix
of emotions from sad to angry to confused and
overwhelmed but don’t be scared. A new cancer
diagnosis is not an end but merely a new beginning in
life to a journey that will make you stronger and help
you realize just how many people love you. Take life
one day at a time with a grain of salt. You will have
good days and bad days but at the end of the day it is
your decision if your glass is half empty or half full.
There are a lot of great support groups, websites, and
literature that can be helpful especially the RGCF so
don’t be afraid to reach out because knowledge is
power. I suggest taking a notebook and extra person to
all doctor appointments because it’s extra company
for the wait (we all know how short those can be) and
an extra set of ears for the information you will be
provided. Ask as many questions as you want to your
oncologist because they are there for you and no
question is a stupid question. Lastly, allow people to
care for you. It is much like being a kid again- you
may need help for a lot of things but that doesn’t mean
you have lost your independence. You should feel
flattered that you are so loved and know that this is
just temporary.
And when in doubt just remember “I can do all
things through Christ who gives me strength.”
Philippians 4:13