Elephants and Tea - September 2019 - 1

LETTER FROM THE CEO

The "A" in AYA
WHERE DO ADOLESCENTS FIT
IN THE HOSPITAL SYSTEM?

SEPTEMBER IS CHILDHOOD CANCER AWARENESS MONTH.

September is also Adolescent Cancer Awareness Month. Sometimes
language gets in the way of attempting to identify a particular age group.
It is easier to use one word to describe a certain age group for the sake of
efficiency. Childhood is identified as 0 - 18 years old and adolescence - as
a subset - is identified as 15 - 18 years old. But does one word properly
serve the group?
Children and adolescents (teenagers) are usually treated in the same
medical environment. What that means is that an adolescent with
cancer may be hospitalized in a pediatric cancer unit. Mind you, that
is not necessarily a bad thing. However, the patient may be surrounded by young children and feel out of place. It depends on the patient,
the hospital and the type of cancer. And, it should also be said that it
can be to the advantage of the patient to be treated by the experienced
pediatric oncologist.
Who is a child? You often hear a parent say, "this is my child" or "my
child has cancer."
Age really doesn't make a difference to a parent. They want to see their
child healed. The word child often has an endearing connotation. My
mother and father would often say that age doesn't matter "your child
is your child forever." How true.
As children mature their needs change. The role of the parent also
changes. The relationship between mom/dad and child (now adolescent)
often takes on a new form. A new style of communication. Different

Conversation

expectations, and so on. Now the family life cycle may have shifted with
new and different responsibilities. Aging parents and grandparents may
require the mother and father to take on additional roles. The mother
and father are now part of the sandwich generation (being squeezed
between two slices of bread - children on top and parents on the bottom).
And when the adolescent is diagnosed with cancer - the parent/
mother/father (insert appropriate noun) is faced with a huge dilemma: learning to re-juggle their responsibilities while dealing with the
greatest fear of their lives.
So where am I going with all of this?
Teenagers can be difficult and stubborn. Sometimes they may engage
in risk taking behaviors or have a poor diet that could permanently
affect their chances of survival. Sometimes they lie about taking their
medications (those were moments when I wanted to tear the hair out
of my head). And when teenagers with cancer become temperamental
and stubborn...parents may feel at a loss.
How does one get angry with the teen that has a life-threatening
disease? The reality is that regardless of age, parenting a child with
cancer threatens every fiber of the soul. Teenagers need to be recognized as a special population. They often realize they don't fit into the
pediatric environment - especially when hospitalized. They often stay
in their rooms to avoid interaction or wait until someone (i.e. friends)
their age comes around for a visit. Often parents (aka caregivers) are
at a loss. My only advice is to just BE THERE FOR YOUR SON OR
DAUGHTER and let them know you love them. Also, it doesn't hurt
to encourage friends to visit.
We know that social support is part of the survivorship process. That
is why the "A" in AYA was identified as a group in need of being recognized as different from the rest of the childhood cancer population.
And what is social support? It is providing an age appropriate environment, activities, and services that the patient will engage comfortably - without threat of being singled out as the only teen in the group
of children.
Do you remember what it was like being a teenager? Did you always
fit in? Consider then, the teen as a patient. How are we going to ensure
that they feel supported during their cancer treatment? How can we,
as advocates and/or parents seek to find ways to help our young survive cancer?
I am happy to say that many hospitals throughout the United States,
Canada, and beyond are striving to create appropriate environments for
AYA cancer patients. However, we still have a long way to go. It will be
advantageous to the adolescent and young adult diagnosed with cancer
to be treated in an environment that provides a more holistic approach.
An approach that understands the "A" in AYA as a special group within
the medical and advocacy community.

A NGI E GI A L L OU R A K IS , PH . D., C E O A N D C O -FOU N DE R OF E L E PH A N T S A N D T E A , IS A FOR M E R
R E H A BI L I TAT ION C OU NSE L OR , C OL L E GE PROF E S S OR , R E SE A RC H E R , T U R N E D C A NC E R A DVO C AT E
A N D MOT H E R TO A T WO T I M E C A NC E R SU RV I VOR . OV E R T H E PA S T T E N Y E A R S SH E H A S S OUGH T TO
L E A R N A B OU T T H E BE S T WAYS TO SU RV I V E C A NC E R T R E AT M E N T. A S A R E SU LT OF T H IS R E SE A RC H SH E
H A S BE C OM E T R A I N E D I N I R E S T YO G A N I DR A M E DI AT ION, I N T E GR AT I V E N U T R I T ION H E A LT H C OAC H,
I N T E GR AT I V E ONC OL O GY NAV IG ATOR A N D YO G A4 C A NC E R T E AC H E R .

ELEPHANTSANDTEA.COM
SEPTEMBER 2019

1
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Elephants and Tea - September 2019

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