Marlo Thomas: Oh
yes. Having a child diagnosed with
cancer or other deadly disease is
very stressful for a family. At St.
Jude, we believe it is so important
to treat the whole family. We have a
wonderful Child Life Program where
the specialists create many
opportunities for an outlet for
feelings. We also have programs and
counseling for the siblings and for
the parents because we know that a
child is not going to get well if
the family does not stay whole and
they are falling apart. When a child
is diagnosed with cancer, it is like
an earthquake that shakes the whole
family. But when they come to St.
Jude, they start to feel hope. They
see that everything is being done
for their child and that no stone is
unturned and it is done at no cost
to them. St. Jude is not like
any other hospital where, if you run
out of money, you do not get the
treatment; you do not get the
radiation; you do not get the bone
marrow transplant. A lot of stuff
happens once you are diagnosed.
There are many procedures that may
be necessary to save a child’s life.
I cannot think of anything worse for
a parent than to not have the money
or the insurance to pay to make
their child well.
Gary Barg: When
you go to St. Jude’s and talk with
parents whose children are being
treated there, what kind of things
do they talk to you about?
First of all, they always tell me
about their journey, like where they
were before they got to St. Jude and
what that whole journey was like—how
many doctors they saw and the
diagnoses they got, the things that
frightened them. They usually tell
me about that and how they found St.
Jude. Then they usually talk about
what it is doing to their family.
How the other children in the family
get scared that they are going to
get it, too, or they are scared that
their sibling is going to die. They
talk about everything—how they are
coping and if their marriage is
crumbling because of it or if their
marriage is stronger. It is just
like talking to a friend. It is like
being in a foxhole with someone.
When you are really up against a
life or death situation, the
conversation becomes very authentic,
very real and very honest.
Authentic is a great way to put it.
The conversations are authentic and
Yes, they are facing life or death
with their child. This is not really
a time for small talk. They want to
talk about how they feel and they
know that I care; they know that I
am there to listen. We have good
conversations. I have learned to sit
there and have a conversation about
their dying child or what the child
went through and it has changed me
as a person. You cannot be the same
woman you were before this
experience. It just completely
changes you, and not just in the way
most people say, which is that you
understand what is important and
what is not important. It does that,
of course, but it also opens up
another door in your soul that makes
you become more expansive. There is
a more expansive portal inside of
you that can accept and live in a
place of this kind of knowledge, to
know what it is like to open your
heart to somebody else’s pain and
sit with it, be there for it without
moving on to the next thing; really
taking part in it completely, moment
to moment, without being distracted.
There are no distractions.
Gary Barg: It is
the reality. What happens after the
children are discharged? What is the
program for follow-up care?