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Transcript

“Shielding Hope: How Parents Cope with Ocular Melanoma 💙✨" · The Eye Believe Podcast

• 0:00
  Welcome
• 0:00
  back.
• 0:00
  thank
• 0:00
  you for
• 0:00
  tuning in
• 0:01
  to
• 0:01
  the number
• 0:02
  one place
• 0:02
  that
• 0:02
  you can
• 0:02
  get
• 0:03
  information
• 0:03
  on ocular
• 0:04
  melanoma.
• 0:04
  The eye
• 0:05
  believe
• 0:05
  podcast.
• 0:06
  Today I'm
• 0:06
  joined
• 0:07
  by Doctor
• 0:07
  Shari
• 0:07
  neul
• 0:08
  who is a
• 0:09
  pediatric
• 0:09
  psychologist
• 0:10
  at
• 0:10
  Vanderbilt
• 0:11
  University
• 0:11
  Medical Center,
• 0:12
  and she
• 0:13
  focuses
• 0:13
  on
• 0:13
  pediatric
• 0:14
  hematology
• 0:15
  and
• 0:15
  oncology.
• 0:16
  Thank you
• 0:16
  so much
• 0:17
  for
• 0:17
  joining
• 0:17
  me.
• 0:18
  Well,
• 0:18
  thank you
• 0:18
  so much
• 0:18
  for
• 0:19
  having
• 0:19
  me.
• 0:19
  It's a
• 0:19
  pleasure
• 0:20
  to be
• 0:20
  here.
• 0:21
  today
• 0:21
  you guys,
• 0:21
  we want to
• 0:22
  talk
• 0:22
  a little
• 0:22
  bit
• 0:23
  about,
• 0:24
  pediatric
• 0:24
  cancer
• 0:24
  awareness
• 0:25
  of course.
• 0:25
  But we're
• 0:26
  going to
• 0:26
  kind of
• 0:26
  come
• 0:26
  at this
• 0:27
  from the
• 0:27
  perspective
• 0:28
  of
• 0:28
  a child
• 0:29
  psychologist.
• 0:29
  I have Shari
• 0:30
  here to
• 0:30
  talk
• 0:30
  with me
• 0:31
  about
• 0:31
  helping
• 0:32
  the parents
• 0:32
  of our
• 0:33
  younger
• 0:33
  omies
• 0:33
  and
• 0:33
  coping
• 0:34
  with the
• 0:34
  anxieties
• 0:35
  of this
• 0:35
  new
• 0:35
  diagnosis
• 0:36
  of an
• 0:36
  ocular
• 0:36
  melanoma,
• 0:37
  life
• 0:38
  changing
• 0:38
  diagnosis,
• 0:38
  especially
• 0:39
  in our
• 0:40
  pediatric
• 0:40
  ocular
• 0:41
  melanoma
• 0:41
  patients.
• 0:42
  these are
• 0:42
  kids
• 0:42
  who are
• 0:42
  diagnosed
• 0:43
  when
• 0:43
  they're
• 0:43
  teenagers.
• 0:44
  Some of them
• 0:45
  are
• 0:45
  growing up
• 0:45
  with
• 0:45
  this.
• 0:46
  And it's
• 0:46
  very rare
• 0:47
  for
• 0:47
  children
• 0:48
  to be
• 0:48
  diagnosed
• 0:48
  with
• 0:48
  ocular
• 0:49
  melanoma.
• 0:49
  But
• 0:50
  for the kids
• 0:50
  that it
• 0:50
  does
• 0:51
  affect,
• 0:51
  we want
• 0:51
  to just
• 0:52
  make sure
• 0:52
  that
• 0:52
  you guys
• 0:52
  have the
• 0:53
  resources
• 0:53
  as
• 0:53
  parents
• 0:54
  and
• 0:54
  as families
• 0:55
  just
• 0:55
  to cope
• 0:55
  with your
• 0:56
  diagnosis.
• 0:57
  The good news
• 0:57
  is that
• 0:58
  this can
• 0:58
  all translate.
• 0:59
  So
• 0:59
  it doesn't
• 0:59
  matter
• 1:00
  how old
• 1:00
  you are,
• 1:00
  all of the
• 1:01
  tools,
• 1:01
  all of the
• 1:02
  skills,
• 1:02
  that
• 1:03
  Shari
• 1:03
  is going
• 1:03
  to talk
• 1:03
  to us
• 1:04
  about,
• 1:04
  these are things
• 1:05
  that can
• 1:05
  translate
• 1:05
  to you
• 1:06
  in adult
• 1:06
  life.
• 1:07
  If you're
• 1:07
  just an
• 1:07
  adult
• 1:07
  listening
• 1:08
  and
• 1:08
  you have
• 1:08
  ocular
• 1:09
  melanoma
• 1:09
  yourself.
• 1:10
  But
• 1:10
  I would
• 1:10
  also
• 1:11
  argue
• 1:11
  that if
• 1:11
  you're
• 1:11
  a parent
• 1:12
  you
• 1:12
  probably
• 1:12
  could
• 1:13
  use this
• 1:13
  for
• 1:14
  dealing
• 1:14
  with your
• 1:15
  diagnosis
• 1:15
  and
• 1:15
  talking
• 1:16
  about
• 1:16
  your
• 1:16
  diagnosis
• 1:17
  with
• 1:17
  your own
• 1:17
  kids.
• 1:18
  Shari,
• 1:18
  let's
• 1:18
  just talk
• 1:19
  a little
• 1:19
  about,
• 1:19
  supporting
• 1:20
  kids with
• 1:20
  the
• 1:20
  anxiety
• 1:21
  of the
• 1:21
  initial
• 1:21
  diagnosis
• 1:22
  and
• 1:22
  treatment
• 1:22
  period.
• 1:23
  what are
• 1:24
  some
• 1:24
  coping
• 1:24
  strategies
• 1:25
  that we
• 1:25
  as
• 1:25
  parents,
• 1:25
  for those
• 1:26
  of us
• 1:26
  listening
• 1:27
  who have,
• 1:27
  kids
• 1:27
  who are
• 1:28
  dealing
• 1:28
  with
• 1:28
  actual
• 1:29
  treatment
• 1:29
  of ocular
• 1:29
  melanoma,
• 1:30
  what are some
• 1:30
  coping
• 1:31
  strategies
• 1:31
  they can use
• 1:32
  to deal
• 1:32
  with
• 1:32
  those
• 1:32
  initial
• 1:33
  moments?
• 1:34
  one,
• 1:35
  broad
• 1:36
  based
• 1:36
  rule of
• 1:37
  thumb
• 1:37
  that's
• 1:37
  super
• 1:38
  helpful
• 1:38
  that I
• 1:39
  talk to
• 1:39
  parents
• 1:40
  about
• 1:41
  is that
• 1:41
  children,
• 1:42
  even
• 1:42
  teenagers,
• 1:44
  look to
• 1:44
  their
• 1:45
  parents
• 1:45
  for
• 1:46
  judging
• 1:48
  how to
• 1:48
  respond,
• 1:49
  seeking
• 1:50
  comfort,
• 1:51
  wanting
• 1:52
  to
• 1:52
  feel safe
• 1:53
  and secure
• 1:54
  so not
• 1:55
  to put
• 1:55
  additional
• 1:55
  pressure
• 1:56
  on you
• 1:56
  as parents.
• 1:57
  But
• 1:57
  that's
• 1:58
  one quick
• 1:59
  way to
• 2:00
  say,
• 2:01
  okay,
• 2:01
  I need to
• 2:02
  sort of
• 2:03
  be
• 2:03
  modeling
• 2:03
  for
• 2:04
  my child
• 2:05
  how
• 2:05
  to handle
• 2:06
  this
• 2:06
  information.
• 2:08
  And so
• 2:09
  a way
• 2:10
  to do
• 2:10
  that
• 2:10
  would be
• 2:11
  to try to
• 2:11
  remain
• 2:11
  calm
• 2:13
  and let
• 2:13
  your child
• 2:14
  know.
• 2:14
  Okay.
• 2:15
  definitely
• 2:15
  acknowledge
• 2:16
  the, fear
• 2:18
  that's
• 2:18
  there,
• 2:18
  all the
• 2:19
  feelings
• 2:19
  in the room
• 2:20
  and
• 2:20
  just let
• 2:21
  them know
• 2:21
  that
• 2:22
  we're
• 2:22
  going to
• 2:22
  figure
• 2:23
  this out
• 2:23
  together.
• 2:24
  We're
• 2:24
  here
• 2:24
  to support
• 2:25
  you
• 2:26
  and go
• 2:27
  use that
• 2:28
  kind
• 2:28
  of as,
• 2:28
  a foundation.
• 2:30
  And
• 2:30
  then
• 2:30
  as you
• 2:30
  go along,
• 2:32
  just
• 2:33
  allowing
• 2:33
  your child
• 2:34
  to have
• 2:35
  the opportunity
• 2:36
  to
• 2:36
  talk to you
• 2:37
  about how
• 2:38
  they're
• 2:38
  feeling,
• 2:38
  because,
• 2:39
  there's
• 2:39
  always
• 2:40
  that
• 2:40
  initial
• 2:40
  kind of
• 2:41
  shock,
• 2:42
  you don't
• 2:42
  want to
• 2:42
  believe
• 2:43
  that it's
• 2:43
  true.
• 2:44
  You
• 2:44
  may wake
• 2:45
  up in
• 2:45
  the
• 2:45
  morning
• 2:46
  and prior
• 2:47
  to all
• 2:47
  of this
• 2:48
  news
• 2:48
  happening,
• 2:49
  and then
• 2:49
  all of
• 2:49
  a sudden
• 2:49
  it hits
• 2:50
  you a
• 2:51
  ton of
• 2:51
  bricks.
• 2:51
  Oh my
• 2:52
  gosh,
• 2:52
  this is
• 2:53
  this is not
• 2:53
  a dream.
• 2:53
  This is real.
• 2:55
  And so
• 2:55
  sometimes,
• 2:56
  kids
• 2:56
  will
• 2:56
  want to
• 2:57
  talk
• 2:57
  about
• 2:58
  how
• 2:58
  they're
• 2:58
  feeling
• 2:59
  or
• 2:59
  just
• 3:00
  randomly
• 3:00
  ask you
• 3:01
  questions
• 3:01
  well,
• 3:02
  what
• 3:02
  does this
• 3:02
  really
• 3:02
  mean?
• 3:03
  Because
• 3:03
  they're
• 3:03
  processing
• 3:04
  it
• 3:04
  just as
• 3:05
  you are,
• 3:06
  as you're
• 3:06
  getting
• 3:06
  through
• 3:07
  that kind
• 3:07
  of
• 3:07
  initial
• 3:08
  shock
• 3:08
  phase
• 3:09
  and
• 3:09
  the dust
• 3:09
  is
• 3:09
  settling
• 3:10
  and
• 3:10
  you're
• 3:10
  trying to
• 3:11
  figure
• 3:11
  out,
• 3:11
  oh my
• 3:11
  gosh,
• 3:12
  how
• 3:12
  are we
• 3:12
  going to
• 3:12
  go
• 3:13
  through
• 3:13
  all of
• 3:13
  this,
• 3:14
  treatment
• 3:14
  and just
• 3:15
  all of
• 3:16
  the
• 3:16
  things
• 3:16
  that have
• 3:17
  completely
• 3:18
  changed
• 3:18
  your
• 3:18
  life. So
• 3:21
  with
• 3:21
  all of
• 3:21
  that
• 3:22
  said, is
• 3:23
  being
• 3:24
  a place
• 3:25
  where
• 3:25
  your child
• 3:25
  can come
• 3:26
  to
• 3:26
  talk to you
• 3:27
  and
• 3:27
  they will
• 3:27
  definitely
• 3:28
  approach
• 3:28
  you and
• 3:28
  probably
• 3:29
  at some
• 3:29
  very
• 3:30
  inopportune
• 3:31
  moments,
• 3:32
  trying
• 3:32
  to get
• 3:32
  out
• 3:32
  the door
• 3:33
  in the morning
• 3:33
  or
• 3:34
  you just
• 3:34
  sat down
• 3:34
  to watch
• 3:35
  your
• 3:35
  favorite
• 3:35
  show that
• 3:36
  evening.
• 3:36
  They
• 3:36
  get out of
• 3:37
  bed and
• 3:37
  want to
• 3:37
  talk to
• 3:38
  you.
• 3:38
  Just
• 3:39
  be aware.
• 3:40
  Just be ready
• 3:40
  for them.
• 3:41
  And
• 3:42
  when they're
• 3:43
  talking
• 3:43
  to you,
• 3:44
  be honest
• 3:45
  with
• 3:45
  them.
• 3:46
  answer
• 3:46
  them
• 3:47
  the best
• 3:47
  you can
• 3:48
  with the
• 3:48
  knowledge
• 3:48
  you have.
• 3:49
  And
• 3:49
  if you
• 3:49
  don't
• 3:49
  know
• 3:50
  something,
• 3:50
  say,
• 3:50
  sweetie,
• 3:51
  I don't know.
• 3:52
  But we're
• 3:53
  going to
• 3:53
  go see
• 3:53
  the doctors
• 3:54
  this week
• 3:55
  and maybe
• 3:55
  let's
• 3:55
  write
• 3:55
  those
• 3:56
  questions
• 3:56
  down
• 3:57
  and let's
• 3:57
  make sure
• 3:58
  we ask
• 3:58
  so
• 3:59
  we can
• 3:59
  get
• 3:59
  the answers
• 4:00
  we need.
• 4:01
  One thing
• 4:02
  that can
• 4:02
  also be
• 4:03
  helpful
• 4:04
  is simply
• 4:04
  just
• 4:05
  listening
• 4:05
  to
• 4:06
  your child.
• 4:07
  they might
• 4:07
  have
• 4:07
  questions.
• 4:08
  They
• 4:08
  might
• 4:08
  just
• 4:09
  especially
• 4:09
  with
• 4:09
  teenagers,
• 4:11
  they
• 4:11
  might
• 4:11
  just
• 4:11
  start
• 4:11
  talking
• 4:12
  about
• 4:12
  things
• 4:13
  going on
• 4:13
  with
• 4:13
  their friends.
• 4:14
  And then
• 4:14
  it's sort
• 4:15
  of,
• 4:15
  kind of
• 4:15
  dawns
• 4:16
  on you.
• 4:16
  Maybe
• 4:16
  they're
• 4:17
  talking
• 4:17
  more
• 4:17
  about
• 4:18
  what's
• 4:18
  going on
• 4:19
  with them.
• 4:19
  They kind of ease
• 4:20
  into things.
• 4:21
  And so
• 4:22
  just
• 4:22
  listening
• 4:23
  and
• 4:23
  when you
• 4:23
  listen,
• 4:24
  you can
• 4:24
  actively
• 4:25
  listen.
• 4:25
  a really
• 4:26
  helpful
• 4:26
  strategy
• 4:27
  is what
• 4:28
  I call
• 4:29
  active
• 4:29
  or
• 4:29
  reflective
• 4:30
  listening.
• 4:31
  your teen
• 4:31
  or
• 4:31
  your child
• 4:32
  may be
• 4:32
  telling
• 4:33
  you
• 4:33
  something
• 4:33
  and
• 4:34
  you can
• 4:34
  say,
• 4:35
  gosh,
• 4:36
  okay.
• 4:36
  So
• 4:36
  from what
• 4:37
  I understand,
• 4:38
  you were
• 4:38
  just
• 4:38
  telling me
• 4:38
  this
• 4:39
  happened
• 4:39
  at school
• 4:40
  and then
• 4:40
  somebody
• 4:40
  said
• 4:41
  something
• 4:41
  to you
• 4:42
  and you
• 4:42
  responded
• 4:43
  this way.
• 4:44
  Wow,
• 4:45
  that
• 4:45
  must have
• 4:45
  been
• 4:46
  challenging.
• 4:47
  and
• 4:47
  what it does
• 4:48
  is it
• 4:48
  helps to
• 4:49
  open up
• 4:49
  the dialog.
• 4:51
  And
• 4:51
  if your child
• 4:51
  is
• 4:52
  actually
• 4:52
  distressed,
• 4:53
  it's okay
• 4:54
  to say
• 4:54
  those
• 4:54
  things.
• 4:55
  It
• 4:55
  actually
• 4:55
  helps
• 4:56
  to
• 4:56
  de-escalate
• 4:57
  the situation.
• 4:59
  The one thing
• 4:59
  you do
• 5:00
  want to
• 5:00
  stay away
• 5:00
  from,
• 5:01
  are
• 5:02
  things
• 5:02
  such as
• 5:03
  telling
• 5:04
  your
• 5:04
  child
• 5:04
  it's
• 5:04
  going
• 5:05
  to be
• 5:05
  okay,
• 5:06
  that we
• 5:07
  will,
• 5:07
  just
• 5:07
  everything's
• 5:08
  going
• 5:08
  to be
• 5:08
  fine,
• 5:09
  because
• 5:09
  guess
• 5:09
  what?
• 5:09
  It
• 5:10
  probably
• 5:10
  won't be
• 5:11
  in
• 5:11
  some ways.
• 5:12
  I mean,
• 5:12
  hopefully
• 5:12
  it will
• 5:13
  eventually,
• 5:14
  but you
• 5:15
  you can't
• 5:15
  promise
• 5:16
  that.
• 5:17
  And also,
• 5:17
  when you
• 5:18
  respond
• 5:18
  that way
• 5:19
  to
• 5:19
  your child,
• 5:20
  it
• 5:20
  actually
• 5:21
  comes
• 5:21
  across
• 5:22
  as very
• 5:22
  invalidating.
• 5:23
  And
• 5:24
  they're
• 5:24
  going to
• 5:24
  shut down
• 5:25
  and
• 5:25
  not want
• 5:25
  to talk
• 5:26
  to you.
• 5:27
  the other thing
• 5:27
  too, is
• 5:28
  when you're
• 5:28
  talking
• 5:29
  with
• 5:29
  them,
• 5:30
  just
• 5:30
  really
• 5:31
  stay in
• 5:31
  that
• 5:32
  active
• 5:32
  listening
• 5:33
  mode of
• 5:33
  just kind
• 5:34
  of
• 5:34
  reflecting
• 5:34
  what you
• 5:35
  hear,
• 5:35
  or maybe
• 5:36
  putting
• 5:37
  a feelings
• 5:38
  label
• 5:38
  in there
• 5:38
  gosh,
• 5:39
  that
• 5:39
  sounds
• 5:39
  that made
• 5:40
  you
• 5:40
  really
• 5:40
  angry.
• 5:41
  use those
• 5:42
  feelings
• 5:42
  words.
• 5:43
  what's
• 5:43
  good
• 5:44
  about
• 5:44
  that
• 5:44
  is it
• 5:45
  keeps
• 5:45
  you away
• 5:45
  from
• 5:46
  wanting
• 5:46
  to
• 5:46
  problem
• 5:46
  solve,
• 5:47
  because
• 5:47
  a lot
• 5:47
  of
• 5:48
  parents
• 5:48
  were just
• 5:49
  geared
• 5:49
  towards
• 5:50
  that.
• 5:50
  Let's
• 5:51
  okay.
• 5:51
  Well,
• 5:51
  let's
• 5:51
  figure
• 5:52
  out
• 5:52
  a plan.
• 5:52
  Well,
• 5:52
  maybe
• 5:53
  you could do
• 5:53
  this.
• 5:53
  Maybe
• 5:53
  you could
• 5:54
  say that
• 5:54
  to
• 5:54
  your friend
• 5:55
  or to
• 5:55
  that
• 5:56
  person
• 5:56
  that wasn't
• 5:56
  very
• 5:57
  kind.
• 5:58
  You don't
• 5:58
  want to
• 5:58
  launch
• 5:59
  into that
• 5:59
  because
• 5:59
  again,
• 6:00
  it can
• 6:01
  come
• 6:01
  across
• 6:01
  as
• 6:02
  invalidating
• 6:03
  to
• 6:03
  your child.
• 6:04
  And
• 6:04
  that'll
• 6:04
  kind of
• 6:04
  shut them down.
• 6:06
  But
• 6:06
  those are
• 6:06
  some
• 6:06
  preliminary
• 6:08
  sort of
• 6:08
  at that
• 6:08
  initial
• 6:09
  phase
• 6:10
  of shock
• 6:10
  and
• 6:11
  trying to
• 6:12
  understand
• 6:12
  what's
• 6:12
  happening,
• 6:13
  that
• 6:13
  those
• 6:13
  are some
• 6:14
  really
• 6:14
  good
• 6:14
  strategies
• 6:15
  right
• 6:15
  there.
• 6:16
  I love that,
• 6:17
  and
• 6:17
  I think
• 6:17
  that,
• 6:17
  reflective
• 6:18
  listening
• 6:18
  is
• 6:19
  probably
• 6:19
  one of
• 6:19
  the ones
• 6:20
  that I
• 6:20
  think
• 6:21
  works
• 6:21
  the best
• 6:22
  as I have
• 6:22
  kids that
• 6:23
  are
• 6:23
  slowly
• 6:23
  getting a
• 6:23
  little
• 6:24
  bit older
• 6:24
  and
• 6:24
  they're able
• 6:25
  to just
• 6:26
  kind of
• 6:27
  talk
• 6:27
  through
• 6:28
  things
• 6:28
  with me,
• 6:28
  but also
• 6:30
  they are
• 6:30
  still
• 6:31
  young
• 6:31
  enough
• 6:31
  that,
• 6:31
  they're
• 6:31
  not
• 6:32
  they're
• 6:32
  not
• 6:32
  necessarily
• 6:33
  able to
• 6:33
  process
• 6:34
  some of
• 6:34
  this
• 6:34
  on their own.
• 6:35
  and
• 6:36
  I think
• 6:36
  that, for
• 6:36
  our
• 6:36
  listeners,
• 6:37
  for
• 6:37
  those of
• 6:38
  you who
• 6:38
  are
• 6:38
  parents
• 6:38
  listening,
• 6:39
  this is so important
• 6:40
  to
• 6:40
  recognize
• 6:41
  that,
• 6:41
  it's okay
• 6:42
  to not
• 6:42
  have it
• 6:42
  figured
• 6:43
  out.
• 6:43
  And
• 6:44
  as part
• 6:44
  of why
• 6:45
  we're
• 6:45
  doing
• 6:45
  this
• 6:45
  episode
• 6:46
  is
• 6:46
  so that
• 6:46
  you can
• 6:46
  have
• 6:46
  some of
• 6:47
  these
• 6:47
  tools,
• 6:47
  but
• 6:47
  just know
• 6:48
  that,
• 6:48
  it's
• 6:48
  really
• 6:48
  okay
• 6:49
  if you don't
• 6:49
  have any
• 6:49
  of this
• 6:50
  figured out
• 6:50
  or if
• 6:51
  you
• 6:51
  didn't
• 6:51
  have
• 6:52
  any of
• 6:52
  these tools
• 6:52
  and
• 6:52
  you feel
• 6:53
  I did it
• 6:53
  wrong.
• 6:54
  I did it
• 6:54
  wrong
• 6:54
  the first time.
• 6:55
  there is
• 6:55
  no wrong
• 6:56
  way
• 6:56
  I've said
• 6:56
  this
• 6:57
  before,
• 6:57
  there's
• 6:57
  there's
• 6:57
  no rules
• 6:58
  in our
• 6:58
  diagnosis.
• 6:59
  There's
• 6:59
  no wrong
• 7:00
  way to go
• 7:00
  about
• 7:00
  coping
• 7:01
  with
• 7:01
  this.
• 7:01
  It's just
• 7:02
  everybody
• 7:02
  is doing
• 7:03
  the best
• 7:03
  that
• 7:03
  we can
• 7:04
  in
• 7:04
  the moment
• 7:04
  that
• 7:04
  we have
• 7:05
  the
• 7:05
  tools,
• 7:05
  the resources
• 7:06
  that
• 7:06
  we're
• 7:06
  dealing
• 7:07
  with.
• 7:08
  so let's
• 7:09
  talk a
• 7:09
  little
• 7:09
  about
• 7:10
  treatment.
• 7:10
  So I had
• 7:11
  briefly
• 7:11
  I had
• 7:11
  explained,
• 7:12
  before
• 7:12
  that
• 7:13
  treatment
• 7:13
  for
• 7:13
  ocular
• 7:13
  melanoma
• 7:14
  usually
• 7:14
  involves
• 7:15
  something
• 7:15
  happening
• 7:15
  to the
• 7:16
  eyeball.
• 7:17
  there's
• 7:17
  usually
• 7:17
  one eye
• 7:18
  that's
• 7:18
  affected.
• 7:18
  And so
• 7:19
  we have
• 7:20
  this eye
• 7:20
  treatment
• 7:20
  and it's
• 7:21
  localized
• 7:21
  to
• 7:22
  the tumor
• 7:22
  in the eye.
• 7:23
  And,
• 7:24
  for kids,
• 7:24
  I can
• 7:25
  imagine
• 7:25
  this
• 7:25
  could be
• 7:26
  really
• 7:26
  terrifying.
• 7:26
  I mean,
• 7:27
  I know
• 7:27
  it was
• 7:27
  terrifying
• 7:28
  enough
• 7:28
  for me
• 7:29
  to go
• 7:29
  into
• 7:29
  a surgery
• 7:30
  where
• 7:30
  they were
• 7:30
  going
• 7:30
  to be
• 7:30
  doing
• 7:31
  things to
• 7:31
  my eye
• 7:32
  and
• 7:32
  to wake up
• 7:32
  and
• 7:33
  kind of
• 7:33
  have
• 7:33
  something
• 7:33
  stuck on
• 7:34
  my eye
• 7:34
  that was
• 7:35
  painful
• 7:35
  and hurt.
• 7:36
  so
• 7:37
  what are some
• 7:38
  of the
• 7:38
  things
• 7:38
  that
• 7:38
  parents
• 7:38
  can do
• 7:39
  to
• 7:39
  support
• 7:39
  their
• 7:39
  kids
• 7:40
  ahead
• 7:40
  of the
• 7:40
  actual
• 7:40
  treatment,
• 7:41
  just
• 7:41
  to make
• 7:41
  sure that
• 7:42
  they're
• 7:43
  not
• 7:43
  caught off
• 7:43
  guard,
• 7:44
  or that
• 7:44
  they just
• 7:44
  are as
• 7:45
  best
• 7:45
  prepared
• 7:45
  as
• 7:45
  they could
• 7:46
  possibly
• 7:46
  be?
• 7:47
  I'm
• 7:47
  a big,
• 7:48
  proponent
• 7:49
  of
• 7:49
  anticipate,
• 7:50
  plan and
• 7:50
  prevent
• 7:51
  if you
• 7:51
  can.
• 7:52
  And
• 7:53
  with that
• 7:53
  said,
• 7:54
  though,
• 7:54
  in terms
• 7:55
  of,
• 7:56
  as
• 7:56
  humans,
• 7:57
  how we
• 7:57
  deal with
• 7:57
  scary
• 7:58
  things.
• 7:59
  I don't want
• 8:00
  to
• 8:00
  oversimplify
• 8:01
  it, but
• 8:01
  one
• 8:01
  helpful
• 8:02
  rule of
• 8:02
  thumb
• 8:03
  is that
• 8:03
  we tend
• 8:04
  to fall
• 8:04
  into
• 8:04
  kind of
• 8:05
  two
• 8:05
  categories.
• 8:06
  Some of us
• 8:07
  are kind
• 8:08
  of the
• 8:08
  escape
• 8:09
  avoiders.
• 8:09
  we
• 8:09
  don't want
• 8:10
  to talk
• 8:10
  about it.
• 8:10
  We want to
• 8:11
  think
• 8:11
  about it.
• 8:12
  And
• 8:12
  that's, a
• 8:13
  very
• 8:13
  normal
• 8:14
  understandable.
• 8:15
  It's
• 8:15
  because
• 8:16
  it's it's
• 8:16
  scary.
• 8:17
  we just
• 8:17
  don't
• 8:17
  want
• 8:18
  to deal
• 8:18
  with
• 8:18
  those things.
• 8:19
  And then
• 8:19
  the other
• 8:20
  group
• 8:20
  of us
• 8:21
  are
• 8:21
  people
• 8:22
  who we're
• 8:22
  we're
• 8:23
  very scared.
• 8:23
  But
• 8:23
  we want
• 8:24
  information.
• 8:25
  We want to feel
• 8:26
  prepared.
• 8:27
  We want the details,
• 8:28
  because
• 8:28
  that
• 8:29
  gives us
• 8:29
  a sense
• 8:30
  of,
• 8:31
  if we know
• 8:32
  what to
• 8:32
  expect,
• 8:33
  it'll
• 8:33
  help us
• 8:33
  cope and
• 8:34
  stay
• 8:34
  calm.
• 8:35
  So it
• 8:37
  kind of
• 8:37
  depending
• 8:38
  where
• 8:38
  your child
• 8:39
  is at.
• 8:39
  Also, you
• 8:40
  as a parent,
• 8:41
  we can be
• 8:41
  very avoidance
• 8:42
  and
• 8:43
  we can
• 8:43
  also be
• 8:44
  the one
• 8:44
  who wants
• 8:44
  all the details.
• 8:46
  And
• 8:46
  of course
• 8:46
  it's
• 8:46
  ideal
• 8:47
  as a parent
• 8:48
  if you're
• 8:48
  a detail
• 8:49
  person
• 8:49
  and
• 8:49
  your child
• 8:50
  is the
• 8:50
  same way,
• 8:51
  you're
• 8:51
  kind
• 8:51
  of two
• 8:51
  peas in
• 8:52
  a pod
• 8:52
  you can kind
• 8:53
  of think
• 8:54
  about,
• 8:55
  all right,
• 8:55
  how
• 8:55
  can we plan
• 8:56
  ahead
• 8:56
  for this?
• 8:57
  So in
• 8:58
  general
• 8:59
  to cover
• 8:59
  kind of
• 9:00
  both of
• 9:00
  these
• 9:00
  simplified
• 9:01
  groups,
• 9:02
  a really
• 9:02
  helpful
• 9:03
  way is
• 9:04
  hopefully
• 9:04
  you have
• 9:05
  a little
• 9:05
  lead time
• 9:06
  into this
• 9:07
  and so
• 9:08
  you can
• 9:09
  talk to
• 9:09
  your child
• 9:10
  about,
• 9:11
  okay,
• 9:11
  we've got
• 9:12
  this
• 9:12
  surgery
• 9:12
  coming
• 9:13
  up.
• 9:14
  And,
• 9:14
  I've been
• 9:15
  thinking
• 9:15
  about,
• 9:16
  as a
• 9:16
  parent,
• 9:17
  again,
• 9:17
  you're
• 9:17
  kind of,
• 9:18
  you're
• 9:19
  the person
• 9:20
  who's
• 9:20
  kind of
• 9:21
  driving
• 9:22
  the situation
• 9:22
  a little bit
• 9:23
  because
• 9:23
  these
• 9:23
  are kids,
• 9:24
  even
• 9:24
  teenagers
• 9:25
  need your
• 9:26
  support
• 9:26
  as a parent.
• 9:27
  And so
• 9:28
  you can
• 9:28
  say,
• 9:28
  I've been
• 9:28
  thinking
• 9:29
  about this
• 9:30
  and
• 9:30
  I thought
• 9:30
  it might
• 9:31
  be
• 9:31
  helpful
• 9:31
  if maybe
• 9:32
  we
• 9:32
  look up
• 9:32
  some
• 9:32
  information
• 9:33
  about,
• 9:34
  what this
• 9:35
  process
• 9:35
  looks
• 9:36
  how it
• 9:36
  how it,
• 9:37
  it
• 9:37
  occurs.
• 9:37
  What what
• 9:38
  is it
• 9:38
  all
• 9:39
  involve.
• 9:40
  And so
• 9:41
  that,
• 9:42
  you can
• 9:42
  invite
• 9:42
  your child
• 9:43
  to join,
• 9:44
  maybe
• 9:44
  watch a
• 9:44
  video,
• 9:45
  obviously
• 9:46
  you want
• 9:46
  to look
• 9:46
  some
• 9:46
  things up
• 9:47
  ahead of time.
• 9:47
  So you're
• 9:48
  not,
• 9:48
  pulling
• 9:49
  something
• 9:49
  up
• 9:49
  that is
• 9:50
  not,
• 9:51
  helpful.
• 9:52
  maybe
• 9:52
  it's more
• 9:52
  fear
• 9:53
  inducing,
• 9:53
  but
• 9:53
  something
• 9:54
  from a
• 9:54
  reputable,
• 9:55
  medical
• 9:56
  center
• 9:56
  website.
• 9:57
  And
• 9:57
  usually
• 9:57
  your
• 9:58
  medical
• 9:58
  center
• 9:58
  can
• 9:59
  give you
• 10:00
  those
• 10:00
  sorts
• 10:01
  of
• 10:01
  resources
• 10:02
  and,
• 10:02
  one note,
• 10:03
  too, is
• 10:03
  when you're
• 10:04
  still
• 10:04
  in the,
• 10:05
  the
• 10:05
  clinic
• 10:06
  or
• 10:06
  hospital
• 10:06
  setting,
• 10:07
  they have
• 10:07
  really
• 10:08
  wonderful
• 10:08
  people
• 10:09
  at most
• 10:09
  children's
• 10:10
  hospitals
• 10:10
  called
• 10:11
  child
• 10:11
  life
• 10:11
  specialists,
• 10:12
  and
• 10:12
  they have
• 10:13
  all kinds
• 10:13
  of videos
• 10:14
  that
• 10:14
  they can
• 10:14
  share
• 10:15
  with you.
• 10:15
  They can even come
• 10:16
  and talk
• 10:16
  to
• 10:16
  your child
• 10:17
  about
• 10:18
  the process,
• 10:19
  the whole
• 10:19
  procedure,
• 10:20
  if you feel
• 10:21
  that
• 10:21
  would be
• 10:21
  better
• 10:21
  for your
• 10:22
  child,
• 10:23
  and
• 10:23
  kind of
• 10:24
  removes
• 10:24
  you from
• 10:24
  the equation,
• 10:25
  but
• 10:25
  you can
• 10:26
  listen in
• 10:26
  and learn.
• 10:27
  But
• 10:27
  to kind
• 10:28
  of go
• 10:28
  back to
• 10:29
  the basics,
• 10:30
  you invite
• 10:30
  your child
• 10:31
  to let's
• 10:32
  say let's
• 10:32
  watch
• 10:33
  some
• 10:33
  videos
• 10:34
  or what
• 10:34
  questions
• 10:35
  do you
• 10:35
  have,
• 10:36
  even ask
• 10:37
  some more
• 10:37
  probing
• 10:38
  questions,
• 10:38
  such as
• 10:39
  what do you
• 10:40
  what do you think
• 10:40
  is the
• 10:41
  most
• 10:41
  scary
• 10:41
  thing
• 10:42
  about this?
• 10:43
  what
• 10:43
  are you
• 10:43
  afraid
• 10:44
  of?
• 10:44
  And
• 10:44
  you can
• 10:45
  even
• 10:45
  offer up
• 10:46
  your own
• 10:46
  fears,
• 10:47
  But
• 10:47
  again, in
• 10:48
  a calm,
• 10:49
  let's
• 10:49
  kind
• 10:49
  of talk
• 10:50
  about
• 10:50
  this way
• 10:51
  you can
• 10:51
  invite
• 10:52
  your child
• 10:52
  to say,
• 10:52
  well,
• 10:53
  we could
• 10:54
  look at
• 10:54
  some
• 10:54
  videos.
• 10:55
  We could
• 10:55
  maybe
• 10:56
  read
• 10:56
  about it,
• 10:57
  maybe we,
• 10:58
  just talk
• 10:59
  about it
• 10:59
  a little bit
• 11:00
  and,
• 11:00
  and just
• 11:01
  maybe
• 11:02
  come back
• 11:02
  to it
• 11:02
  tomorrow,
• 11:03
  give your child
• 11:04
  maybe 2
• 11:05
  to 3 options
• 11:06
  so
• 11:06
  they feel
• 11:07
  in
• 11:07
  control,
• 11:07
  especially
• 11:08
  for those
• 11:08
  kids
• 11:09
  who are a
• 11:09
  little
• 11:09
  more
• 11:09
  avoidant
• 11:10
  focused.
• 11:11
  But
• 11:12
  the idea
• 11:12
  is to
• 11:13
  try to
• 11:13
  educate
• 11:14
  yourself,
• 11:15
  and
• 11:15
  your child
• 11:15
  can
• 11:15
  educate
• 11:16
  him or
• 11:16
  herself.
• 11:17
  And by
• 11:19
  watching
• 11:19
  the videos,
• 11:20
  you can
• 11:20
  kind
• 11:20
  of stop
• 11:21
  and kind
• 11:22
  of
• 11:22
  process
• 11:22
  what
• 11:22
  you're
• 11:23
  seeing,
• 11:23
  see
• 11:24
  what kind
• 11:24
  of
• 11:24
  questions
• 11:25
  your
• 11:25
  child
• 11:25
  has.
• 11:27
  nowadays
• 11:27
  with all
• 11:28
  of our
• 11:28
  social
• 11:29
  media
• 11:29
  content,
• 11:30
  again,
• 11:31
  if you
• 11:31
  kind of
• 11:32
  work
• 11:32
  behind
• 11:32
  the scenes
• 11:33
  before
• 11:33
  you
• 11:33
  talk to
• 11:34
  your child,
• 11:34
  you might be able
• 11:35
  to find
• 11:35
  some
• 11:36
  YouTube
• 11:36
  videos
• 11:37
  of
• 11:37
  a child
• 11:38
  who's
• 11:38
  gone
• 11:38
  through
• 11:39
  a similar
• 11:39
  procedure.
• 11:40
  And
• 11:40
  that can
• 11:41
  be really
• 11:42
  helpful
• 11:42
  for your child
• 11:43
  because
• 11:43
  they're
• 11:44
  more
• 11:44
  of that
• 11:45
  child's
• 11:45
  age,
• 11:46
  they can
• 11:46
  identify
• 11:47
  more
• 11:47
  readily.
• 11:48
  And you,
• 11:49
  the two of
• 11:49
  you can
• 11:49
  kind of
• 11:50
  talk
• 11:50
  about,
• 11:51
  oh, wow,
• 11:51
  that that
• 11:52
  young
• 11:52
  boy, said
• 11:53
  all of
• 11:54
  these
• 11:54
  things.
• 11:54
  What did you think
• 11:55
  about
• 11:55
  that
• 11:56
  was were
• 11:57
  those
• 11:57
  some
• 11:57
  of the
• 11:58
  same
• 11:58
  things
• 11:58
  you were
• 11:59
  afraid of
• 11:59
  or
• 11:59
  thinking?
• 12:00
  So
• 12:00
  it just
• 12:00
  opens
• 12:00
  a dialog
• 12:02
  and by
• 12:02
  talking
• 12:03
  about it,
• 12:04
  it
• 12:04
  actually
• 12:05
  helps
• 12:05
  to take
• 12:06
  some of
• 12:06
  that
• 12:06
  mystery
• 12:07
  and the
• 12:07
  fear
• 12:08
  of the
• 12:08
  unknown
• 12:09
  away.
• 12:09
  And it's
• 12:10
  also okay
• 12:11
  to
• 12:11
  acknowledge
• 12:12
  that
• 12:12
  it can
• 12:13
  be
• 12:13
  painful
• 12:14
  and
• 12:14
  that the,
• 12:15
  the team,
• 12:15
  the medical
• 12:16
  team
• 12:16
  will do
• 12:17
  whatever
• 12:17
  they can
• 12:18
  to manage
• 12:18
  the pain
• 12:19
  after
• 12:19
  the procedure.
• 12:21
  But
• 12:21
  you just
• 12:21
  sort of
• 12:22
  kind
• 12:22
  of go
• 12:23
  into it,
• 12:24
  kind of
• 12:25
  prepare
• 12:26
  yourself,
• 12:26
  kind of
• 12:27
  anticipating,
• 12:28
  trying to
• 12:28
  plan
• 12:29
  for it
• 12:30
  and then
• 12:30
  trying to
• 12:30
  prevent
• 12:31
  the
• 12:31
  complete
• 12:32
  avoidance.
• 12:33
  And then
• 12:33
  you just
• 12:33
  write into it
• 12:34
  and then
• 12:35
  your anxiety
• 12:35
  is super
• 12:36
  high,
• 12:37
  and
• 12:37
  then it
• 12:38
  actually
• 12:38
  becomes
• 12:39
  almost a
• 12:39
  traumatic
• 12:40
  event.
• 12:41
  That's
• 12:41
  something
• 12:41
  we
• 12:41
  definitely
• 12:42
  want
• 12:42
  to try
• 12:42
  to avoid
• 12:43
  or reduce
• 12:44
  the
• 12:44
  chances
• 12:45
  of.
• 12:46
  Oh, I
• 12:46
  love
• 12:46
  that.
• 12:47
  You
• 12:47
  mentioned
• 12:47
  having
• 12:48
  just peer
• 12:49
  to peer
• 12:49
  support,
• 12:49
  right?
• 12:50
  finding
• 12:50
  a video
• 12:50
  of
• 12:50
  someone
• 12:51
  else
• 12:51
  online
• 12:51
  who
• 12:52
  has gone
• 12:52
  through
• 12:52
  this too.
• 12:53
  And for
• 12:53
  those of
• 12:54
  you guys
• 12:54
  listening,
• 12:54
  if you haven't
• 12:55
  listened
• 12:55
  to
• 12:55
  Presley
• 12:56
  story or
• 12:57
  Mila's
• 12:57
  story,
• 12:57
  we
• 12:58
  actually do
• 12:58
  have
• 12:58
  a few
• 12:58
  pediatric
• 12:59
  patients
• 13:00
  who have
• 13:00
  been part
• 13:01
  of
• 13:01
  the community
• 13:01
  and
• 13:01
  have been
• 13:02
  willing
• 13:02
  to share
• 13:02
  their stories,
• 13:03
  so
• 13:03
  we do have
• 13:04
  those on
• 13:04
  the
• 13:04
  podcast
• 13:05
  here
• 13:05
  on our
• 13:06
  YouTube
• 13:06
  channel.
• 13:06
  You can find
• 13:07
  those,
• 13:07
  very
• 13:08
  pretty
• 13:08
  easily
• 13:08
  as long
• 13:09
  as
• 13:09
  you're,
• 13:09
  looking
• 13:09
  through
• 13:10
  using
• 13:10
  their names.
• 13:11
  so we'll
• 13:11
  make sure
• 13:11
  to link
• 13:12
  those
• 13:12
  episodes
• 13:12
  as well
• 13:13
  on the
• 13:13
  show
• 13:13
  notes
• 13:13
  here just
• 13:14
  so that
• 13:14
  they're
• 13:14
  easily
• 13:14
  accessible.
• 13:15
  But
• 13:15
  as far
• 13:16
  as visuals
• 13:16
  go, if
• 13:17
  you want
• 13:17
  something
• 13:17
  that is
• 13:18
  a
• 13:18
  guaranteed
• 13:19
  not
• 13:19
  going
• 13:19
  to be
• 13:19
  too
• 13:19
  graphic
• 13:20
  because
• 13:20
  there are
• 13:20
  some
• 13:21
  surgeons
• 13:21
  who will go out
• 13:22
  and
• 13:22
  they'll
• 13:22
  put a
• 13:22
  video
• 13:23
  showing
• 13:23
  what it
• 13:23
  looks
• 13:24
  to
• 13:24
  actually,
• 13:24
  slice
• 13:25
  into the eye
• 13:25
  and that
• 13:26
  can be
• 13:26
  a little
• 13:26
  much,
• 13:27
  right?
• 13:27
  I mean,
• 13:28
  I feel
• 13:28
  that's
• 13:28
  a little
• 13:28
  much
• 13:28
  for me.
• 13:29
  but
• 13:29
  there are
• 13:30
  some good
• 13:31
  graphics
• 13:31
  and
• 13:31
  visuals
• 13:32
  that you
• 13:32
  can use
• 13:33
  on the
• 13:33
  appearance
• 13:33
  Site
• 13:34
  website
• 13:34
  under
• 13:35
  the newly
• 13:35
  diagnosed
• 13:36
  section.
• 13:36
  So
• 13:37
  if you head
• 13:37
  to
• 13:37
  our website,
• 13:37
  we do have
• 13:38
  some of
• 13:38
  those
• 13:38
  visuals
• 13:39
  that show
• 13:39
  what
• 13:39
  a plaque
• 13:40
  looks
• 13:40
  and just
• 13:40
  kind of
• 13:41
  the
• 13:41
  various
• 13:41
  different
• 13:41
  treatment
• 13:42
  modalities.
• 13:43
  So
• 13:43
  hopefully
• 13:43
  those can
• 13:44
  be just
• 13:44
  a
• 13:44
  starting
• 13:45
  place
• 13:45
  for
• 13:45
  some of
• 13:45
  those
• 13:45
  resources.
• 13:46
  If you're
• 13:46
  looking
• 13:47
  for them
• 13:47
  just
• 13:48
  to be
• 13:48
  able to
• 13:48
  provide
• 13:49
  that
• 13:49
  visual
• 13:49
  support.
• 13:51
  but yeah,
• 13:52
  I love
• 13:52
  what
• 13:52
  Sherry
• 13:52
  said
• 13:53
  about
• 13:53
  just
• 13:53
  making
• 13:54
  sure that
• 13:54
  it's done
• 13:56
  in a way
• 13:56
  that it's
• 13:58
  carefully
• 13:58
  kind of
• 13:59
  trying
• 13:59
  to avoid
• 13:59
  the avoidance,
• 14:00
  but also
• 14:01
  but also
• 14:02
  being
• 14:02
  conscious
• 14:03
  of
• 14:03
  the fact
• 14:03
  that,
• 14:04
  if we've
• 14:04
  got kids
• 14:05
  attention
• 14:05
  spans
• 14:05
  to deal
• 14:06
  with,
• 14:06
  they're
• 14:07
  just
• 14:07
  their
• 14:07
  capacity
• 14:07
  for
• 14:08
  information.
• 14:08
  It's
• 14:08
  probably
• 14:09
  going to
• 14:09
  be
• 14:09
  different
• 14:09
  than
• 14:10
  yours
• 14:10
  as
• 14:10
  a parent,
• 14:11
  If you're
• 14:11
  a parent
• 14:12
  who loves
• 14:12
  the
• 14:12
  information
• 14:13
  and finds
• 14:14
  safety
• 14:14
  in the
• 14:15
  information,
• 14:16
  you're
• 14:16
  probably
• 14:17
  going to
• 14:17
  want
• 14:17
  to dive
• 14:17
  into more
• 14:18
  of this
• 14:18
  than
• 14:18
  maybe
• 14:19
  a child
• 14:19
  who's
• 14:19
  a little
• 14:20
  more
• 14:20
  geared
• 14:20
  toward
• 14:20
  wanting
• 14:21
  to avoid
• 14:21
  it, so,
• 14:22
  Sherry,
• 14:22
  if you have
• 14:22
  that kind
• 14:23
  of
• 14:23
  imbalance,
• 14:23
  how
• 14:23
  would you
• 14:24
  suggest
• 14:24
  that a
• 14:24
  parent
• 14:24
  kind of
• 14:25
  go about
• 14:25
  dealing
• 14:25
  with
• 14:25
  that?
• 14:27
  just
• 14:27
  even,
• 14:27
  being
• 14:28
  aware
• 14:28
  of it
• 14:29
  is is
• 14:29
  great.
• 14:30
  That's
• 14:30
  a great start.
• 14:31
  And so
• 14:32
  as a parent
• 14:33
  just
• 14:34
  making
• 14:34
  sure you
• 14:34
  check in
• 14:35
  with
• 14:35
  your child
• 14:36
  is this too
• 14:36
  much.
• 14:37
  Or
• 14:38
  we could
• 14:38
  maybe
• 14:39
  look into this
• 14:40
  or
• 14:40
  we can
• 14:40
  look into
• 14:41
  this
• 14:41
  aspect.
• 14:42
  What might
• 14:43
  you want
• 14:43
  to do
• 14:44
  if it's
• 14:44
  too
• 14:45
  overwhelming
• 14:46
  for you
• 14:47
  as a parent
• 14:48
  or you're
• 14:48
  noticing
• 14:49
  your child
• 14:50
  is really
• 14:51
  struggling,
• 14:52
  I would
• 14:53
  highly
• 14:53
  recommend
• 14:54
  you reach
• 14:55
  out to
• 14:56
  your
• 14:56
  medical
• 14:56
  providers
• 14:57
  and, see
• 14:58
  if you can
• 14:58
  connect
• 14:59
  with the
• 14:59
  child
• 14:59
  life
• 15:00
  specialist
• 15:01
  or a
• 15:01
  psychologist,
• 15:03
  on the team.
• 15:04
  Or if
• 15:04
  they don't
• 15:05
  have a
• 15:05
  psychologist,
• 15:06
  a
• 15:06
  lot of times
• 15:07
  the social
• 15:08
  workers
• 15:08
  on
• 15:08
  the team
• 15:09
  are great
• 15:10
  resource,
• 15:11
  but
• 15:11
  there are
• 15:12
  professionals
• 15:12
  available
• 15:14
  and
• 15:14
  sometimes
• 15:15
  that
• 15:15
  helps
• 15:15
  kids,
• 15:17
  because
• 15:17
  as
• 15:17
  professionals,
• 15:18
  we
• 15:18
  don't
• 15:19
  have that
• 15:19
  history
• 15:20
  as
• 15:20
  a parent
• 15:21
  with
• 15:21
  a child.
• 15:22
  And
• 15:22
  we can
• 15:22
  kind of
• 15:23
  we have
• 15:23
  some
• 15:23
  tricks
• 15:24
  that we
• 15:24
  naturally
• 15:25
  don't
• 15:25
  want to
• 15:25
  say that
• 15:25
  in
• 15:25
  a scary way,
• 15:26
  but
• 15:27
  we can be
• 15:27
  creative
• 15:28
  in
• 15:29
  helping
• 15:29
  children,
• 15:30
  feel more
• 15:30
  comfortable
• 15:31
  approaching
• 15:32
  that
• 15:32
  information
• 15:33
  and
• 15:33
  checking
• 15:34
  in
• 15:34
  with them
• 15:35
  throughout
• 15:35
  that
• 15:35
  process.
• 15:37
  so
• 15:37
  definitely
• 15:38
  reach
• 15:38
  out.
• 15:38
  And
• 15:39
  hearing
• 15:39
  what
• 15:40
  you're
• 15:40
  saying
• 15:40
  about
• 15:41
  the
• 15:41
  resources,
• 15:42
  with
• 15:42
  your foundation,
• 15:44
  I bet there's
• 15:44
  some
• 15:44
  things
• 15:45
  there
• 15:45
  online
• 15:46
  that you
• 15:46
  could
• 15:46
  reach out
• 15:46
  to other
• 15:47
  parents
• 15:48
  or other
• 15:48
  professionals
• 15:49
  with the
• 15:49
  organization
• 15:50
  that they
• 15:50
  could
• 15:51
  offer
• 15:51
  some tips
• 15:52
  and
• 15:52
  pointers
• 15:52
  as well.
• 15:54
  Yeah.
• 15:54
  And
• 15:54
  I'll make
• 15:54
  sure to
• 15:55
  include
• 15:55
  the link
• 15:55
  in the
• 15:55
  show
• 15:56
  notes
• 15:56
  and
• 15:56
  in the details
• 15:57
  as well.
• 15:57
  For the
• 15:57
  Facebook
• 15:58
  group,
• 15:58
  we do have
• 15:58
  a
• 15:58
  pediatric,
• 15:59
  pediatric
• 16:00
  support
• 16:00
  group
• 16:00
  specifically
• 16:01
  for
• 16:01
  parents
• 16:01
  of
• 16:01
  pediatric
• 16:02
  patients.
• 16:03
  so
• 16:03
  that is
• 16:03
  just at
• 16:04
  least
• 16:04
  another,
• 16:04
  another
• 16:05
  option of
• 16:06
  of
• 16:06
  course,
• 16:06
  not
• 16:06
  everybody
• 16:07
  is going
• 16:07
  to tap
• 16:07
  into
• 16:07
  all of these places,
• 16:08
  but
• 16:09
  just know
• 16:09
  that
• 16:09
  they're
• 16:09
  available
• 16:10
  if you want
• 16:10
  them.
• 16:10
  let's
• 16:10
  just chat
• 16:11
  for a
• 16:11
  minute
• 16:11
  about
• 16:12
  the idea
• 16:12
  of being
• 16:12
  a parent
• 16:14
  while
• 16:14
  having
• 16:15
  a child
• 16:15
  who's
• 16:16
  going
• 16:16
  through
• 16:16
  this
• 16:16
  diagnosis,
• 16:17
  because
• 16:17
  I think
• 16:18
  that one
• 16:18
  of the
• 16:18
  things
• 16:19
  that's
• 16:19
  really
• 16:19
  hard
• 16:19
  for me
• 16:20
  as a parent,
• 16:20
  even with
• 16:20
  a cancer
• 16:21
  diagnosis,
• 16:21
  is just
• 16:22
  learning,
• 16:23
  to set
• 16:23
  boundaries
• 16:24
  and
• 16:24
  to be,
• 16:25
  able to
• 16:26
  parent
• 16:26
  while
• 16:27
  also
• 16:27
  being in
• 16:28
  the midst
• 16:28
  of some
• 16:28
  really
• 16:29
  emotional,
• 16:29
  heavy
• 16:30
  turmoil
• 16:30
  type
• 16:30
  stuff.
• 16:31
  what do you
• 16:32
  what
• 16:32
  do you
• 16:32
  tell
• 16:32
  parents
• 16:33
  who are
• 16:33
  kind of
• 16:33
  struggling
• 16:34
  with the
• 16:34
  the whole
• 16:34
  idea
• 16:35
  of what
• 16:35
  can I
• 16:35
  parent
• 16:36
  my kid?
• 16:36
  are they going
• 16:37
  to be
• 16:37
  too
• 16:37
  traumatized
• 16:37
  for me
• 16:38
  to even
• 16:39
  discipline
• 16:39
  them
• 16:39
  or set
• 16:40
  boundaries
• 16:41
  or any
• 16:41
  of that?
• 16:43
  That is a
• 16:43
  great
• 16:43
  question.
• 16:44
  And
• 16:46
  again,
• 16:46
  going
• 16:47
  back to
• 16:47
  that,
• 16:47
  anticipate,
• 16:48
  plan and
• 16:49
  prevent
• 16:49
  frame
• 16:50
  of mind
• 16:50
  is, first
• 16:51
  of all,
• 16:52
  it's very
• 16:52
  normal
• 16:53
  for
• 16:54
  parents
• 16:54
  to just
• 16:56
  feel
• 16:56
  very
• 16:57
  apprehensive.
• 16:58
  It's,
• 16:58
  about,
• 16:59
  well,
• 16:59
  how do I
• 16:59
  parent
• 17:00
  my child
• 17:00
  through this,
• 17:01
  and so
• 17:02
  that just
• 17:03
  normalizing
• 17:04
  that and
• 17:04
  validating
• 17:05
  that I
• 17:05
  do that
• 17:05
  with
• 17:05
  parents
• 17:06
  all the time.
• 17:07
  And then
• 17:09
  I talk
• 17:09
  a little
• 17:09
  bit
• 17:09
  about,
• 17:11
  in the
• 17:11
  grand
• 17:11
  scheme of
• 17:12
  things,
• 17:13
  we want
• 17:14
  to keep
• 17:16
  structure
• 17:17
  into
• 17:18
  in their lives
• 17:19
  as much
• 17:19
  as
• 17:19
  possible,
• 17:21
  reasonable
• 17:22
  expectations
• 17:23
  based
• 17:23
  on sort
• 17:24
  of their
• 17:24
  developmental
• 17:25
  level,
• 17:25
  their age,
• 17:26
  kind of
• 17:26
  what
• 17:26
  were they
• 17:27
  doing
• 17:27
  before the
• 17:28
  diagnosis
• 17:29
  and try
• 17:30
  to keep
• 17:30
  those
• 17:31
  things
• 17:32
  moving
• 17:32
  along in
• 17:33
  terms of
• 17:34
  they need
• 17:34
  to get up
• 17:35
  and dress
• 17:35
  themselves.
• 17:36
  They can fix
• 17:36
  their own
• 17:37
  breakfast
• 17:38
  or
• 17:38
  cleaning
• 17:39
  up after
• 17:39
  dinner
• 17:39
  time
• 17:40
  or
• 17:40
  picking
• 17:41
  up their
• 17:41
  toys or,
• 17:42
  keeping
• 17:43
  their
• 17:43
  room
• 17:43
  clean.
• 17:43
  if they're
• 17:44
  a little
• 17:44
  older,
• 17:45
  keep
• 17:45
  all of
• 17:46
  those
• 17:46
  things
• 17:46
  in place.
• 17:47
  because
• 17:48
  that does
• 17:48
  offer a
• 17:49
  sense of,
• 17:50
  of
• 17:51
  normalcy
• 17:52
  and
• 17:52
  safety.
• 17:52
  Because,
• 17:53
  again,
• 17:54
  with the
• 17:54
  diagnosis
• 17:55
  and your
• 17:56
  life
• 17:56
  changing,
• 17:57
  everything
• 17:57
  is get
• 17:58
  the rug
• 17:58
  pulled
• 17:58
  out from
• 17:59
  under
• 17:59
  you.
• 18:00
  So trying
• 18:00
  to keep
• 18:01
  those
• 18:01
  sorts
• 18:02
  of
• 18:02
  expectations
• 18:04
  and
• 18:04
  things
• 18:05
  that your
• 18:05
  child
• 18:06
  can do
• 18:06
  in place,
• 18:08
  okay.
• 18:08
  And
• 18:09
  that's
• 18:09
  kind of
• 18:09
  the firm
• 18:10
  part of
• 18:10
  parenting.
• 18:11
  Now
• 18:11
  you're
• 18:12
  going
• 18:12
  to be,
• 18:13
  obviously
• 18:14
  attentive
• 18:15
  and
• 18:16
  wanting
• 18:16
  to make
• 18:16
  sure your
• 18:18
  child
• 18:18
  feels
• 18:19
  physically
• 18:19
  comfortable,
• 18:20
  emotionally
• 18:21
  safe,
• 18:22
  and,
• 18:23
  you're
• 18:23
  dealing
• 18:23
  with
• 18:23
  pain.
• 18:24
  You might be
• 18:24
  dealing
• 18:25
  with side
• 18:25
  effects
• 18:26
  of
• 18:26
  medication,
• 18:27
  a big one
• 18:28
  for, in
• 18:29
  oncology.
• 18:29
  I, I'm
• 18:30
  not sure
• 18:30
  if it is
• 18:31
  for
• 18:31
  ocular
• 18:32
  melanoma
• 18:32
  treatment,
• 18:33
  but
• 18:34
  the steroid
• 18:35
  medication
• 18:36
  and
• 18:36
  that has
• 18:37
  a lot
• 18:37
  of it's
• 18:38
  a it's
• 18:38
  a
• 18:38
  wonderful
• 18:39
  medication
• 18:40
  or
• 18:40
  class of meds
• 18:41
  because
• 18:42
  it really
• 18:42
  they
• 18:42
  really
• 18:43
  are
• 18:43
  effective.
• 18:44
  But
• 18:44
  they have
• 18:45
  a side
• 18:45
  effect
• 18:45
  profile
• 18:46
  where
• 18:46
  they
• 18:46
  cause
• 18:47
  moodiness.
• 18:48
  increased
• 18:49
  hunger
• 18:50
  and
• 18:50
  difficulty
• 18:51
  sleeping.
• 18:52
  So
• 18:52
  you get
• 18:52
  kind of
• 18:52
  this
• 18:53
  little
• 18:53
  steroid
• 18:54
  monster
• 18:54
  on
• 18:55
  your hands.
• 18:55
  And so
• 18:56
  just
• 18:57
  being
• 18:57
  aware
• 18:58
  that in
• 18:58
  moments
• 18:59
  where
• 19:00
  you feel
• 19:01
  okay,
• 19:01
  if your child
• 19:02
  just went
• 19:02
  through
• 19:02
  a
• 19:02
  treatment
• 19:04
  or
• 19:04
  underwent
• 19:04
  some form
• 19:05
  of chemo
• 19:06
  and
• 19:06
  it's not
• 19:06
  feeling
• 19:07
  good,
• 19:08
  those
• 19:08
  are the
• 19:08
  times
• 19:09
  to say,
• 19:10
  We
• 19:10
  don't have
• 19:10
  to take
• 19:11
  out the
• 19:11
  trash.
• 19:12
  You can
• 19:13
  lay on
• 19:13
  the couch
• 19:14
  or be
• 19:14
  in bed
• 19:14
  for a bit
• 19:15
  watching
• 19:16
  your
• 19:16
  favorite
• 19:16
  television
• 19:17
  shows.
• 19:18
  We're
• 19:18
  not going
• 19:19
  to
• 19:19
  ask you
• 19:20
  to do
• 19:20
  the
• 19:20
  typical
• 19:21
  things.
• 19:22
  And,
• 19:22
  if they
• 19:23
  are
• 19:23
  experiencing
• 19:24
  medication
• 19:25
  side
• 19:25
  effects
• 19:26
  or kind
• 19:27
  of,
• 19:27
  irritable
• 19:28
  or
• 19:28
  lashing
• 19:28
  out a
• 19:28
  little
• 19:29
  bit,
• 19:31
  again,
• 19:31
  you're
• 19:31
  kind of
• 19:32
  thinking
• 19:32
  if in a
• 19:33
  more
• 19:33
  typical
• 19:33
  child
• 19:34
  situation
• 19:34
  you might
• 19:35
  say, oh,
• 19:36
  timeout
• 19:36
  for that.
• 19:37
  Well,
• 19:38
  keeping
• 19:38
  in mind
• 19:39
  the context
• 19:40
  in which
• 19:40
  that
• 19:40
  behavior
• 19:41
  is
• 19:41
  occurring.
• 19:42
  So
• 19:42
  if that
• 19:43
  lashing
• 19:43
  out or
• 19:44
  being,
• 19:45
  challenging
• 19:46
  pops up,
• 19:47
  you can
• 19:48
  acknowledge
• 19:49
  it
• 19:49
  and say,
• 19:50
  gosh,
• 19:50
  you seem
• 19:51
  you're
• 19:51
  having a
• 19:51
  hard
• 19:51
  time.
• 19:52
  You seem
• 19:52
  you're
• 19:52
  pretty
• 19:53
  irritable
• 19:53
  with me
• 19:54
  right
• 19:54
  now.
• 19:55
  Tell me
• 19:56
  what's
• 19:56
  going on.
• 19:57
  how is your body
• 19:58
  feeling?
• 19:58
  What's on
• 19:59
  your mind?
• 19:59
  See
• 20:00
  if the child
• 20:00
  can
• 20:00
  tell you
• 20:02
  if they're
• 20:02
  not able
• 20:02
  to say,
• 20:03
  what,
• 20:03
  maybe
• 20:03
  this is a
• 20:04
  good time
• 20:04
  to
• 20:04
  take a break.
• 20:05
  We can take care
• 20:06
  of
• 20:06
  cleaning
• 20:07
  up
• 20:07
  the toys
• 20:07
  later,
• 20:08
  but
• 20:09
  as your
• 20:09
  child
• 20:09
  goes
• 20:09
  through
• 20:10
  treatment,
• 20:10
  you
• 20:10
  might be
• 20:11
  learning
• 20:11
  more
• 20:11
  about how
• 20:12
  they're
• 20:12
  responding
• 20:13
  to things
• 20:14
  and just
• 20:14
  building
• 20:15
  in
• 20:15
  some of
• 20:15
  that
• 20:15
  downtime
• 20:17
  where
• 20:17
  nothing's
• 20:17
  really
• 20:17
  demanded of them.
• 20:19
  So
• 20:19
  the idea
• 20:20
  is you
• 20:20
  keep
• 20:21
  those
• 20:21
  that
• 20:21
  structure
• 20:22
  in place,
• 20:22
  those
• 20:23
  expectations
• 20:24
  in place,
• 20:25
  with
• 20:25
  the caveat
• 20:26
  if they're
• 20:27
  physically
• 20:27
  feeling
• 20:28
  very
• 20:28
  poorly,
• 20:29
  or maybe
• 20:30
  having
• 20:31
  some side
• 20:31
  effects
• 20:32
  of
• 20:32
  medication,
• 20:33
  allow
• 20:34
  them a
• 20:34
  little
• 20:34
  wider
• 20:35
  berth
• 20:35
  with that.
• 20:37
  Because
• 20:37
  when you
• 20:38
  don't
• 20:38
  have
• 20:39
  those
• 20:39
  things
• 20:39
  in place
• 20:40
  and
• 20:40
  you go
• 20:41
  all the way
• 20:42
  to
• 20:42
  the side
• 20:42
  of,
• 20:43
  we're
• 20:43
  just
• 20:44
  going
• 20:44
  to do
• 20:44
  whatever
• 20:44
  we can
• 20:45
  to make
• 20:45
  our child
• 20:45
  feel
• 20:46
  comfortable.
• 20:47
  And
• 20:47
  of course,
• 20:47
  they
• 20:47
  might be
• 20:48
  getting
• 20:48
  a lot
• 20:48
  more
• 20:49
  attention
• 20:49
  from
• 20:49
  other
• 20:50
  people
• 20:51
  and gifts
• 20:52
  and all
• 20:52
  kinds of
• 20:53
  things.
• 20:54
  You
• 20:54
  really
• 20:54
  do need
• 20:55
  to keep
• 20:56
  that
• 20:56
  structure
• 20:57
  and
• 20:57
  set of
• 20:58
  expectations
• 20:59
  in place,
• 20:59
  because
• 21:00
  if you
• 21:00
  don't,
• 21:02
  when you
• 21:02
  try to
• 21:03
  put it
• 21:03
  back in
• 21:03
  place,
• 21:04
  maybe
• 21:04
  after
• 21:05
  the
• 21:05
  treatment
• 21:06
  is
• 21:06
  completed,
• 21:07
  maybe
• 21:07
  they've
• 21:07
  got their
• 21:08
  prosthetic
• 21:08
  eye,
• 21:09
  things
• 21:09
  are
• 21:09
  maybe,
• 21:09
  hopefully
• 21:10
  getting
• 21:10
  back to
• 21:11
  more
• 21:11
  normal.
• 21:12
  What
• 21:12
  can happen
• 21:13
  is you're
• 21:14
  having
• 21:14
  to undo
• 21:15
  all of
• 21:16
  that,
• 21:16
  just
• 21:17
  kind of
• 21:17
  letting
• 21:18
  everything
• 21:18
  go.
• 21:19
  And
• 21:19
  it can be
• 21:20
  very
• 21:20
  challenging.
• 21:21
  So again,
• 21:22
  kind of
• 21:22
  anticipating
• 21:23
  and
• 21:23
  planning
• 21:24
  for that
• 21:24
  and
• 21:24
  preventing
• 21:25
  that from
• 21:25
  happening.
• 21:27
  I think
• 21:27
  that's
• 21:27
  such a
• 21:27
  good
• 21:28
  point.
• 21:28
  And thank
• 21:28
  you for
• 21:29
  just
• 21:29
  validating
• 21:30
  that.
• 21:30
  For
• 21:30
  those of us
• 21:30
  who are
• 21:30
  parents,
• 21:31
  that it's
• 21:31
  okay
• 21:32
  to still
• 21:32
  be
• 21:32
  a parent.
• 21:33
  Yes.
• 21:33
  While
• 21:34
  you're
• 21:34
  going
• 21:34
  through
• 21:35
  this,
• 21:35
  whether
• 21:35
  you're
• 21:35
  going
• 21:35
  through
• 21:36
  this
• 21:36
  for yourself
• 21:36
  or if
• 21:37
  you are
• 21:37
  a parent
• 21:38
  of
• 21:38
  a child
• 21:38
  going
• 21:38
  through
• 21:39
  this
• 21:39
  diagnosis.
• 21:40
  I think
• 21:40
  both both
• 21:41
  times
• 21:41
  it's very
• 21:42
  important
• 21:42
  to just
• 21:42
  maintain
• 21:43
  that
• 21:43
  sense of,
• 21:44
  of
• 21:44
  normalcy.
• 21:45
  And and
• 21:45
  that
• 21:45
  can be
• 21:46
  hard,
• 21:46
  right?
• 21:46
  It can
• 21:47
  I think
• 21:47
  it can
• 21:47
  sometimes
• 21:48
  be really
• 21:48
  exhausting
• 21:49
  to
• 21:50
  kind of
• 21:50
  be normal
• 21:52
  during
• 21:52
  this
• 21:52
  diagnosis
• 21:53
  in any
• 21:53
  capacity,
• 21:54
  because
• 21:54
  sometimes
• 21:55
  there's
• 21:55
  just days
• 21:55
  that
• 21:55
  you're
• 21:56
  just
• 21:56
  totally
• 21:57
  tapped
• 21:57
  out.
• 21:57
  And
• 21:57
  I think
• 21:58
  just
• 21:58
  learning
• 21:58
  to
• 21:59
  recognize
• 21:59
  that and
• 21:59
  becoming
• 22:00
  aware is
• 22:01
  it's a
• 22:01
  it's a
• 22:02
  journey,
• 22:02
  but it's
• 22:02
  worth
• 22:03
  it's
• 22:03
  worth
• 22:03
  figuring it
• 22:04
  out
• 22:04
  just
• 22:04
  kind of
• 22:05
  as you
• 22:05
  go.
• 22:07
  we see
• 22:07
  a lot of
• 22:08
  parents
• 22:08
  who avoid
• 22:09
  telling
• 22:09
  their
• 22:10
  children
• 22:10
  that
• 22:10
  they have
• 22:10
  a cancer
• 22:11
  diagnosis.
• 22:12
  So
• 22:12
  at what
• 22:13
  point can
• 22:13
  or should
• 22:14
  parents
• 22:15
  the parents
• 22:15
  of our,
• 22:16
  our listeners,
• 22:17
  should
• 22:17
  they use
• 22:18
  the
• 22:18
  cancer
• 22:18
  word
• 22:18
  with their kids
• 22:19
  and why
• 22:20
  or why
• 22:20
  not?
• 22:20
  Would
• 22:20
  this be
• 22:21
  appropriate
• 22:21
  in your
• 22:21
  opinion?
• 22:23
  that's
• 22:23
  a great
• 22:23
  question.
• 22:26
  very
• 22:26
  broad
• 22:27
  strokes.
• 22:28
  Honesty
• 22:29
  is the
• 22:29
  best
• 22:30
  policy.
• 22:30
  Okay.
• 22:31
  And so
• 22:32
  keeping
• 22:32
  that in
• 22:33
  mind,
• 22:33
  it is
• 22:34
  absolutely
• 22:35
  okay to
• 22:35
  use the C
• 22:36
  word
• 22:37
  cancer.
• 22:38
  and
• 22:39
  a lot of times
• 22:40
  the apprehension
• 22:42
  is coming
• 22:43
  from the
• 22:43
  parents,
• 22:44
  understandably.
• 22:46
  And,
• 22:46
  remember,
• 22:47
  you have
• 22:47
  children.
• 22:48
  Now,
• 22:48
  of course,
• 22:49
  if
• 22:49
  they're
• 22:49
  older
• 22:49
  and
• 22:49
  teenagers,
• 22:50
  they
• 22:50
  probably
• 22:52
  do
• 22:52
  understand
• 22:53
  what
• 22:53
  cancer is
• 22:54
  and that
• 22:54
  it's a
• 22:55
  scary
• 22:55
  thing.
• 22:56
  maybe
• 22:56
  there's
• 22:57
  been
• 22:57
  experiences
• 22:58
  within
• 22:58
  that
• 22:58
  particular
• 22:59
  family
• 23:00
  an aunt,
• 23:00
  or uncle
• 23:01
  or
• 23:01
  somebody
• 23:01
  had
• 23:02
  cancer
• 23:02
  and died
• 23:03
  from it,
• 23:03
  So
• 23:03
  it kind of
• 23:04
  depends
• 23:04
  what
• 23:04
  your life
• 23:05
  story as
• 23:05
  a family
• 23:06
  is with,
• 23:06
  with the,
• 23:07
  the concept
• 23:08
  of in the
• 23:09
  word
• 23:09
  cancer.
• 23:10
  With that
• 23:11
  said,
• 23:13
  I've
• 23:13
  worked
• 23:13
  with
• 23:14
  parents
• 23:14
  where
• 23:15
  they've
• 23:15
  been very
• 23:16
  hesitant
• 23:17
  to say
• 23:17
  anything
• 23:18
  and in
• 23:18
  fact,
• 23:19
  tell all
• 23:19
  of us,
• 23:20
  please
• 23:20
  don't say
• 23:20
  that
• 23:21
  word.
• 23:22
  Well,
• 23:23
  that's
• 23:23
  very
• 23:24
  challenging.
• 23:24
  Somebody is
• 23:25
  bound to
• 23:25
  slip up,
• 23:26
  even
• 23:26
  you as
• 23:27
  the
• 23:27
  parent
• 23:27
  or they,
• 23:28
  your child
• 23:28
  might
• 23:28
  overhear
• 23:29
  you
• 23:29
  talking
• 23:30
  on
• 23:30
  the phone
• 23:30
  or
• 23:30
  something
• 23:31
  and using
• 23:32
  the word.
• 23:33
  So let me
• 23:33
  just say
• 23:34
  this,
• 23:34
  that
• 23:34
  it just
• 23:35
  doesn't
• 23:35
  work
• 23:36
  for the
• 23:36
  most part.
• 23:37
  if if
• 23:37
  at all.
• 23:38
  Okay.
• 23:38
  Now
• 23:39
  there are
• 23:39
  some
• 23:39
  unique
• 23:41
  situations
• 23:42
  where
• 23:42
  maybe
• 23:42
  there's
• 23:42
  some
• 23:42
  cultural
• 23:44
  implications
• 23:45
  or,
• 23:45
  spiritual
• 23:45
  or
• 23:46
  religious
• 23:46
  beliefs
• 23:47
  that
• 23:47
  I've come
• 23:47
  across
• 23:48
  that
• 23:48
  requires
• 23:49
  a little
• 23:49
  bit
• 23:49
  extra,
• 23:51
  support
• 23:51
  for that
• 23:52
  particular
• 23:52
  family
• 23:53
  and kind
• 23:53
  of
• 23:53
  talking
• 23:54
  through
• 23:54
  what
• 23:54
  they're
• 23:54
  comfortable
• 23:55
  with
• 23:55
  and
• 23:56
  telling
• 23:56
  their
• 23:56
  child,
• 23:57
  but in
• 23:58
  general,
• 23:59
  using
• 24:00
  the word
• 24:00
  is
• 24:01
  absolutely
• 24:01
  fine,
• 24:02
  where you
• 24:03
  as
• 24:03
  a parent
• 24:04
  can feel
• 24:05
  maybe
• 24:05
  more
• 24:05
  confident,
• 24:06
  less
• 24:06
  fearful
• 24:08
  is
• 24:09
  talking
• 24:09
  about it
• 24:10
  in a way
• 24:11
  that's
• 24:11
  developmentally
• 24:12
  appropriate
• 24:12
  for
• 24:13
  your child.
• 24:14
  So for
• 24:14
  younger
• 24:14
  kids,
• 24:16
  we talk
• 24:16
  about
• 24:16
  cancer
• 24:17
  as, it's
• 24:19
  having
• 24:19
  a garden
• 24:20
  and
• 24:21
  all of a
• 24:21
  sudden
• 24:21
  these
• 24:22
  weeds
• 24:22
  have been growing
• 24:23
  and
• 24:24
  we need
• 24:24
  to
• 24:25
  get rid
• 24:25
  of the weeds
• 24:26
  so that
• 24:26
  the
• 24:26
  healthy
• 24:27
  stuff
• 24:27
  continues
• 24:28
  to grow.
• 24:30
  we use
• 24:30
  that
• 24:31
  a lot
• 24:31
  for more
• 24:31
  of our,
• 24:32
  our blood
• 24:33
  sorts
• 24:33
  of
• 24:33
  cancers
• 24:34
  leukemias.
• 24:35
  We can use
• 24:36
  a similar
• 24:36
  analogy
• 24:37
  for
• 24:37
  tumors,
• 24:38
  things
• 24:38
  that.
• 24:39
  So
• 24:39
  the idea is
• 24:40
  how
• 24:40
  do you
• 24:40
  explain it
• 24:41
  to your
• 24:41
  child?
• 24:42
  And now
• 24:42
  with a teenager
• 24:43
  it could be
• 24:44
  a little
• 24:44
  different.
• 24:44
  you can ask them,
• 24:46
  what
• 24:47
  are you
• 24:47
  hearing
• 24:48
  the team
• 24:48
  say?
• 24:48
  What is your
• 24:49
  understanding
• 24:50
  of what's
• 24:50
  going on?
• 24:51
  And
• 24:51
  you can
• 24:51
  even ask
• 24:52
  a young
• 24:52
  child
• 24:53
  that too.
• 24:53
  And you
• 24:54
  might be
• 24:54
  surprised.
• 24:55
  They'll
• 24:55
  say,
• 24:55
  well,
• 24:55
  yeah,
• 24:55
  I have
• 24:56
  this
• 24:56
  thing
• 24:56
  called
• 24:57
  cancer.
• 24:57
  a lot
• 24:58
  of times
• 24:58
  as adults,
• 24:59
  we just have
• 25:00
  all this
• 25:00
  fear,
• 25:01
  and we
• 25:01
  get
• 25:01
  really
• 25:02
  caught up
• 25:02
  in it.
• 25:03
  And then
• 25:03
  the child
• 25:04
  gets more
• 25:05
  concerned
• 25:05
  because
• 25:06
  they see
• 25:06
  their
• 25:06
  parents,
• 25:08
  getting
• 25:08
  really
• 25:08
  worked
• 25:09
  up.
• 25:09
  And
• 25:10
  let me
• 25:10
  tell
• 25:11
  you, kids
• 25:12
  of all
• 25:12
  ages,
• 25:13
  even
• 25:13
  young
• 25:14
  toddlers,
• 25:15
  they know
• 25:16
  when
• 25:16
  something's
• 25:16
  up.
• 25:17
  And
• 25:18
  if you're
• 25:18
  not using
• 25:19
  the word
• 25:19
  or you're
• 25:20
  avoiding it
• 25:21
  or
• 25:21
  avoiding
• 25:21
  talking
• 25:22
  about it,
• 25:23
  it
• 25:23
  actually
• 25:24
  worsens
• 25:24
  their fear
• 25:25
  because
• 25:26
  they
• 25:26
  intuitively
• 25:27
  know
• 25:28
  mommy
• 25:28
  and daddy
• 25:29
  don't
• 25:29
  seem
• 25:30
  quite
• 25:30
  right.
• 25:31
  Something's
• 25:31
  wrong.
• 25:32
  Now
• 25:32
  my grandparents
• 25:33
  are
• 25:33
  visiting.
• 25:34
  People
• 25:34
  are
• 25:34
  crying.
• 25:35
  I'm
• 25:35
  in this
• 25:36
  strange
• 25:36
  place,
• 25:37
  in
• 25:37
  a hospital.
• 25:38
  I don't know
• 25:38
  what's
• 25:38
  going on.
• 25:39
  They really need
• 25:41
  you to
• 25:41
  tell them
• 25:42
  what's
• 25:42
  happening.
• 25:43
  And
• 25:43
  so just
• 25:44
  being
• 25:44
  honest
• 25:45
  that
• 25:45
  it's cancer
• 25:46
  and we
• 25:47
  have
• 25:47
  these
• 25:47
  cells
• 25:48
  in our body,
• 25:49
  and
• 25:49
  sometimes
• 25:50
  they go
• 25:51
  a
• 25:51
  little wacky
• 25:51
  and they
• 25:52
  grow
• 25:52
  extra
• 25:53
  fast,
• 25:54
  and they
• 25:54
  create
• 25:55
  things
• 25:55
  that we
• 25:56
  need
• 25:56
  medicine
• 25:57
  to take
• 25:57
  care of
• 25:58
  and
• 25:58
  get rid
• 25:59
  of.
• 25:59
  And
• 25:59
  sometimes
• 26:00
  we have
• 26:01
  to have
• 26:02
  operations
• 26:03
  or
• 26:03
  surgeries
• 26:03
  to
• 26:04
  remove it
• 26:04
  from our body.
• 26:05
  But
• 26:06
  that's
• 26:06
  what
• 26:06
  we're
• 26:06
  dealing
• 26:07
  with.
• 26:07
  And
• 26:07
  you can
• 26:07
  even
• 26:08
  give them
• 26:08
  the name,
• 26:09
  the
• 26:09
  child's
• 26:09
  older,
• 26:10
  but
• 26:10
  the idea
• 26:11
  is just
• 26:12
  just
• 26:12
  matter
• 26:12
  of factly
• 26:13
  explaining
• 26:13
  it.
• 26:14
  You can use
• 26:14
  something
• 26:15
  a nice
• 26:15
  little
• 26:15
  analogy,
• 26:16
  a garden
• 26:17
  or, using
• 26:18
  the idea
• 26:18
  of the
• 26:19
  tumor
• 26:19
  growing
• 26:20
  and
• 26:20
  having
• 26:20
  to get
• 26:21
  rid of it.
• 26:21
  But
• 26:22
  that's
• 26:22
  the best
• 26:23
  approach,
• 26:24
  hands
• 26:24
  down.
• 26:25
  Because
• 26:25
  when,
• 26:26
  when they
• 26:27
  when
• 26:27
  parents
• 26:28
  don't
• 26:28
  want
• 26:29
  to talk
• 26:29
  about it,
• 26:30
  it
• 26:31
  actually
• 26:31
  makes it
• 26:31
  so
• 26:32
  much worse.
• 26:33
  And then
• 26:34
  you're
• 26:34
  dealing
• 26:34
  with a
• 26:34
  really
• 26:35
  distressed
• 26:35
  child
• 26:36
  who will not
• 26:37
  be able
• 26:38
  to cope
• 26:38
  well with
• 26:39
  procedures.
• 26:40
  Even just
• 26:41
  coming to
• 26:41
  the
• 26:42
  clinic
• 26:42
  for
• 26:42
  checkups,
• 26:44
  you'll
• 26:44
  really
• 26:45
  it's
• 26:45
  a real
• 26:45
  disservice
• 26:46
  to your
• 26:47
  own
• 26:47
  child.
• 26:49
  Well, and
• 26:50
  I know
• 26:50
  we talked
• 26:50
  about this
• 26:50
  before,
• 26:51
  but
• 26:51
  I always
• 26:51
  just come
• 26:52
  back to
• 26:52
  that idea
• 26:53
  of fear
• 26:53
  of name
• 26:54
  only
• 26:54
  increases
• 26:55
  fear of
• 26:55
  a thing
• 26:55
  itself.
• 26:56
  And
• 26:56
  that's
• 26:57
  just a
• 26:57
  quote
• 26:57
  from one
• 26:57
  of my
• 26:58
  favorite
• 26:58
  stories.
• 26:58
  And, and
• 26:59
  I
• 26:59
  absolutely
• 27:00
  live by
• 27:01
  that.
• 27:01
  And
• 27:01
  I feel
• 27:01
  I've done
• 27:02
  that with
• 27:02
  my own kids
• 27:02
  and just
• 27:03
  talking
• 27:03
  about my
• 27:04
  diagnosis
• 27:04
  and
• 27:05
  kind of the
• 27:05
  I think
• 27:05
  the
• 27:05
  frustrating thing
• 27:06
  is that
• 27:06
  sometimes
• 27:07
  this
• 27:07
  diagnosis
• 27:08
  is the
• 27:08
  first
• 27:09
  exposure
• 27:09
  that your
• 27:10
  family
• 27:10
  might
• 27:11
  have to
• 27:12
  cancer
• 27:12
  as a
• 27:12
  whole.
• 27:13
  You may
• 27:13
  have
• 27:13
  never had
• 27:14
  anyone
• 27:14
  personally
• 27:15
  affected
• 27:15
  who has
• 27:16
  dealt
• 27:16
  with a
• 27:16
  cancer
• 27:16
  diagnosis,
• 27:17
  let alone
• 27:17
  it being
• 27:18
  your
• 27:18
  child
• 27:18
  or
• 27:19
  yourself
• 27:19
  or
• 27:19
  whoever
• 27:20
  for who,
• 27:20
  for who's
• 27:21
  listening.
• 27:23
  so let's
• 27:23
  just talk
• 27:24
  a little
• 27:24
  about how
• 27:24
  this is
• 27:25
  really
• 27:25
  a family
• 27:26
  diagnosis,
• 27:26
  especially
• 27:27
  in
• 27:27
  the case
• 27:27
  of having
• 27:28
  a child
• 27:28
  in
• 27:28
  the diagnosis.
• 27:29
  so
• 27:30
  what are
• 27:30
  some of
• 27:30
  the kind
• 27:31
  of psycho
• 27:31
  educational
• 27:32
  kind of
• 27:33
  models
• 27:33
  and tools
• 27:33
  that you
• 27:34
  would use
• 27:34
  with
• 27:34
  the family
• 27:35
  to
• 27:35
  support
• 27:36
  them
• 27:37
  during
• 27:37
  this kind
• 27:37
  of
• 27:38
  diagnosis,
• 27:38
  the
• 27:38
  treatment?
• 27:39
  And,
• 27:39
  just
• 27:39
  helping
• 27:40
  prepare them
• 27:40
  for
• 27:41
  dealing
• 27:41
  with all
• 27:42
  of the
• 27:42
  community
• 27:42
  support
• 27:43
  that's
• 27:43
  going to
• 27:43
  come in,
• 27:43
  because
• 27:44
  I think
• 27:44
  that's
• 27:44
  something
• 27:45
  that
• 27:45
  maybe
• 27:45
  happens
• 27:45
  a little
• 27:46
  more for
• 27:46
  pediatric
• 27:47
  families
• 27:48
  is that
• 27:48
  they
• 27:48
  do have
• 27:49
  this
• 27:49
  large
• 27:50
  outpouring
• 27:50
  of
• 27:51
  community
• 27:51
  support
• 27:52
  from
• 27:52
  friends,
• 27:52
  family,
• 27:53
  classmates.
• 27:54
  And
• 27:55
  I think
• 27:55
  that can
• 27:56
  be
• 27:56
  really,
• 27:56
  really
• 27:56
  helpful.
• 27:57
  But I can
• 27:57
  imagine
• 27:57
  it might
• 27:58
  feel
• 27:58
  really
• 27:58
  overwhelming
• 27:59
  sometimes
• 27:59
  to.
• 28:01
  Oh, wow.
• 28:01
  Yes,
• 28:02
  there's
• 28:02
  there's
• 28:02
  a lot
• 28:02
  of layers
• 28:03
  there.
• 28:04
  yes.
• 28:04
  So to
• 28:04
  break it
• 28:05
  down a
• 28:05
  little
• 28:05
  bit
• 28:06
  initially,
• 28:08
  in terms
• 28:09
  of
• 28:10
  parents
• 28:10
  supporting
• 28:11
  their
• 28:11
  kids
• 28:11
  in this
• 28:12
  and the
• 28:12
  family
• 28:13
  in
• 28:13
  general,
• 28:14
  the
• 28:14
  diagnosis,
• 28:15
  the actual
• 28:16
  cancer
• 28:18
  is
• 28:18
  another
• 28:18
  member of
• 28:19
  the family
• 28:20
  and it's
• 28:21
  going
• 28:22
  to be
• 28:22
  there.
• 28:22
  It's
• 28:23
  always
• 28:23
  going
• 28:23
  to be
• 28:24
  hanging
• 28:24
  around.
• 28:25
  And so
• 28:26
  trying to
• 28:26
  figure
• 28:27
  out,
• 28:27
  first
• 28:27
  of all,
• 28:28
  acknowledging
• 28:28
  that
• 28:29
  and that
• 28:30
  that's
• 28:30
  what
• 28:31
  other
• 28:31
  families
• 28:32
  are
• 28:32
  dealing
• 28:32
  with.
• 28:33
  and it is
• 28:33
  something
• 28:34
  that
• 28:35
  families
• 28:36
  can
• 28:37
  acclimate
• 28:37
  to.
• 28:38
  it
• 28:38
  can take
• 28:38
  some
• 28:39
  time.
• 28:40
  Now
• 28:40
  acclimating
• 28:41
  to that,
• 28:41
  I will say
• 28:42
  a caveat
• 28:43
  to that
• 28:44
  is,
• 28:45
  of
• 28:45
  course,
• 28:45
  what is
• 28:46
  the
• 28:47
  actual
• 28:48
  diagnosis?
• 28:49
  What is
• 28:50
  the
• 28:50
  possible
• 28:51
  prognosis.
• 28:52
  So
• 28:53
  that can
• 28:53
  change
• 28:54
  things
• 28:54
  a little.
• 28:54
  I don't
• 28:55
  want to
• 28:56
  say, oh,
• 28:57
  it
• 28:57
  becomes
• 28:57
  a member
• 28:57
  of
• 28:57
  your family.
• 28:58
  You'll
• 28:58
  learn to
• 28:59
  live
• 28:59
  with it.
• 28:59
  No,
• 28:59
  it can be
• 29:00
  very
• 29:00
  different
• 29:01
  depending
• 29:01
  on the
• 29:01
  diagnosis,
• 29:02
  the types
• 29:03
  of
• 29:03
  treatments
• 29:03
  and the
• 29:03
  prognostic
• 29:05
  information
• 29:06
  that the
• 29:06
  the child
• 29:07
  and
• 29:07
  family
• 29:07
  have been
• 29:08
  given.
• 29:08
  So with
• 29:09
  all of that
• 29:10
  said,
• 29:11
  it is a
• 29:11
  member of
• 29:12
  the family
• 29:13
  and
• 29:13
  initially
• 29:14
  just
• 29:15
  speaking
• 29:15
  to
• 29:15
  what you
• 29:16
  were
• 29:16
  saying
• 29:17
  initially
• 29:18
  there's
• 29:18
  going
• 29:18
  to be
• 29:19
  an
• 29:19
  outpouring
• 29:20
  of
• 29:20
  support,
• 29:21
  which is
• 29:21
  wonderful.
• 29:23
  Now it's
• 29:24
  some families
• 29:25
  are very
• 29:25
  open to
• 29:25
  that.
• 29:26
  Others
• 29:26
  are very
• 29:27
  uncomfortable
• 29:28
  with kind
• 29:29
  of being
• 29:29
  that
• 29:29
  center
• 29:29
  of
• 29:30
  attention.
• 29:30
  And
• 29:31
  people
• 29:32
  asking,
• 29:32
  can
• 29:33
  I bring
• 29:33
  a meal
• 29:33
  over and
• 29:34
  showering
• 29:35
  the child
• 29:35
  with
• 29:35
  gifts
• 29:36
  and out,
• 29:37
  outreaching
• 29:38
  to the
• 29:38
  family,
• 29:39
  putting
• 29:39
  fundraisers
• 29:40
  together,
• 29:41
  maybe not
• 29:42
  even
• 29:42
  asking
• 29:43
  you
• 29:43
  as a family
• 29:43
  if that's
• 29:44
  okay?
• 29:45
  so
• 29:46
  I often
• 29:46
  talk to
• 29:47
  families
• 29:47
  about
• 29:48
  trying to
• 29:48
  prepare
• 29:48
  for that.
• 29:49
  And
• 29:49
  what is your
• 29:50
  comfort
• 29:51
  level?
• 29:51
  And it's
• 29:52
  okay
• 29:52
  to set
• 29:53
  some
• 29:53
  boundaries
• 29:54
  with
• 29:54
  that,
• 29:54
  with
• 29:54
  others.
• 29:55
  And so
• 29:57
  again,
• 29:57
  with your
• 29:58
  if your,
• 29:58
  your
• 29:59
  child's
• 29:59
  the one
• 29:59
  diagnosed,
• 30:01
  you're
• 30:01
  also the
• 30:02
  gatekeeper.
• 30:03
  Okay.
• 30:03
  So
• 30:04
  you want to
• 30:04
  protect
• 30:05
  your
• 30:05
  child.
• 30:06
  And I
• 30:07
  firmly
• 30:07
  believe
• 30:08
  children
• 30:08
  of all age
• 30:09
  and even
• 30:09
  as
• 30:09
  adults,
• 30:10
  we
• 30:10
  deserve
• 30:11
  privacy.
• 30:11
  And so,
• 30:13
  with
• 30:13
  social
• 30:14
  media,
• 30:14
  as a parent,
• 30:15
  some of us
• 30:16
  would
• 30:16
  want to
• 30:17
  update
• 30:17
  family
• 30:18
  and
• 30:18
  loved ones.
• 30:19
  But
• 30:20
  you really
• 30:21
  need
• 30:21
  to
• 30:21
  talk to
• 30:21
  your child
• 30:22
  first
• 30:23
  if that's
• 30:23
  okay
• 30:23
  to do that,
• 30:25
  because
• 30:26
  that is
• 30:27
  their
• 30:27
  experience
• 30:28
  and
• 30:29
  they should
• 30:29
  have a
• 30:30
  say in
• 30:30
  whether
• 30:31
  or not
• 30:31
  you
• 30:32
  should be
• 30:32
  sharing
• 30:32
  something,
• 30:33
  especially
• 30:34
  through
• 30:34
  social
• 30:34
  media.
• 30:35
  Now, in
• 30:36
  some
• 30:36
  families,
• 30:37
  we talk about
• 30:38
  they
• 30:38
  do want
• 30:39
  to offer
• 30:39
  updates
• 30:40
  and we
• 30:41
  often
• 30:41
  recommend
• 30:42
  the family
• 30:42
  find
• 30:43
  kind of
• 30:43
  a
• 30:43
  spokesperson.
• 30:45
  It
• 30:45
  could be
• 30:45
  a close
• 30:46
  family
• 30:46
  friend
• 30:47
  or
• 30:47
  a family
• 30:48
  member
• 30:49
  where
• 30:50
  you as
• 30:50
  the
• 30:50
  parent,
• 30:51
  relay
• 30:51
  information
• 30:52
  to that
• 30:53
  spokesperson
• 30:54
  and
• 30:55
  tell them
• 30:55
  what's
• 30:56
  okay
• 30:56
  to say.
• 30:57
  And then
• 30:57
  you
• 30:57
  leave out
• 30:58
  what you
• 30:58
  don't
• 30:58
  want to
• 30:59
  be said.
• 30:59
  And you
• 31:00
  can be
• 31:00
  very
• 31:00
  specific
• 31:01
  with
• 31:01
  that,
• 31:01
  with that
• 31:02
  spokesperson.
• 31:03
  And then
• 31:03
  that
• 31:04
  spokesperson
• 31:05
  can post
• 31:06
  on
• 31:06
  Facebook
• 31:07
  or
• 31:07
  send out
• 31:08
  an email
• 31:08
  or field
• 31:09
  phone
• 31:10
  calls for
• 31:10
  the family.
• 31:12
  That's
• 31:12
  a huge
• 31:14
  weight
• 31:14
  off
• 31:14
  the parent,
• 31:15
  because
• 31:16
  people
• 31:17
  are
• 31:17
  obviously
• 31:18
  wanting
• 31:18
  to offer
• 31:19
  support.
• 31:19
  They're
• 31:20
  reaching
• 31:20
  out
• 31:20
  at all
• 31:21
  hours.
• 31:21
  They're
• 31:21
  texting
• 31:22
  you,
• 31:22
  they're
• 31:22
  calling
• 31:23
  you,
• 31:23
  leaving
• 31:24
  you
• 31:24
  Facebook
• 31:25
  messages,
• 31:25
  what
• 31:26
  have you.
• 31:26
  And it
• 31:27
  can be
• 31:27
  so overwhelming.
• 31:29
  So having
• 31:30
  a
• 31:30
  spokesperson
• 31:31
  can be
• 31:31
  helpful.
• 31:32
  the other
• 31:33
  piece is
• 31:35
  helping
• 31:35
  kids,
• 31:37
  especially,
• 31:38
  when
• 31:38
  there's
• 31:38
  something
• 31:39
  visibly
• 31:39
  changed
• 31:40
  about
• 31:40
  that
• 31:40
  child.
• 31:41
  we were
• 31:42
  talking
• 31:42
  earlier
• 31:42
  about
• 31:43
  having,
• 31:44
  maybe
• 31:44
  a
• 31:44
  temporary,
• 31:45
  prosthetic
• 31:46
  eye
• 31:46
  while
• 31:47
  your
• 31:47
  actual
• 31:48
  prosthetic
• 31:48
  eye is
• 31:49
  being made,
• 31:50
  and
• 31:51
  it
• 31:51
  may look
• 31:51
  very
• 31:51
  different,
• 31:52
  or
• 31:52
  you may
• 31:52
  want
• 31:53
  to wear
• 31:53
  an eye
• 31:53
  patch,
• 31:54
  that
• 31:55
  people,
• 31:55
  especially
• 31:56
  if you
• 31:56
  live in
• 31:57
  a community
• 31:58
  where
• 31:58
  maybe
• 31:59
  many
• 31:59
  people
• 32:00
  know
• 32:00
  each other
• 32:00
  or
• 32:00
  the word
• 32:01
  is out
• 32:01
  that
• 32:02
  your child
• 32:02
  has been
• 32:02
  diagnosed
• 32:03
  with
• 32:04
  something
• 32:04
  very
• 32:04
  rare.
• 32:05
  Most
• 32:05
  people,
• 32:06
  I can
• 32:06
  assure
• 32:07
  you, have
• 32:07
  not heard
• 32:07
  of ocular
• 32:08
  melanoma.
• 32:09
  as
• 32:10
  I know,
• 32:10
  I'm kind
• 32:10
  of
• 32:10
  preaching
• 32:10
  to
• 32:11
  the choir
• 32:11
  there.
• 32:12
  Don't
• 32:12
  really
• 32:12
  understand
• 32:13
  what
• 32:13
  those
• 32:13
  words
• 32:13
  even
• 32:14
  mean.
• 32:14
  And so
• 32:16
  you're
• 32:16
  going to
• 32:16
  get
• 32:16
  people
• 32:17
  approaching
• 32:18
  you
• 32:18
  in the
• 32:18
  grocery store,
• 32:19
  or maybe
• 32:20
  you're out
• 32:20
  and
• 32:20
  about at
• 32:20
  the movies
• 32:21
  or
• 32:21
  whatever
• 32:22
  it is
• 32:23
  and
• 32:23
  trying
• 32:24
  to
• 32:24
  mentally
• 32:24
  prepare
• 32:25
  for that.
• 32:27
  it can be
• 32:27
  really
• 32:27
  helpful
• 32:28
  with
• 32:28
  kids.
• 32:28
  I usually
• 32:29
  start
• 32:29
  around
• 32:30
  elementary
• 32:30
  age where
• 32:32
  we can,
• 32:32
  and
• 32:33
  you can do
• 32:33
  this with
• 32:33
  your child.
• 32:34
  You don't
• 32:34
  necessarily
• 32:34
  need
• 32:34
  a professional
• 32:35
  to
• 32:35
  help you,
• 32:36
  but
• 32:36
  you can
• 32:37
  do
• 32:37
  kind of
• 32:38
  develop
• 32:38
  a script
• 32:39
  and you
• 32:39
  can
• 32:39
  kind of
• 32:39
  role
• 32:40
  play.
• 32:41
  If Mrs.
• 32:41
  Jones
• 32:42
  runs into
• 32:43
  at the
• 32:43
  grocery
• 32:44
  store
• 32:44
  and says,
• 32:45
  oh,
• 32:45
  Johnny,
• 32:46
  what's
• 32:46
  going on?
• 32:46
  Where's
• 32:47
  that eye
• 32:47
  patch?
• 32:48
  what
• 32:48
  happened?
• 32:49
  That
• 32:49
  child
• 32:50
  can give
• 32:52
  just a
• 32:52
  pat
• 32:52
  response.
• 32:53
  Okay.
• 32:54
  Now,
• 32:55
  if their
• 32:55
  child's
• 32:55
  not
• 32:56
  feeling
• 32:56
  they want
• 32:57
  to do
• 32:57
  that, you
• 32:58
  as a
• 32:58
  parent
• 32:59
  can
• 32:59
  come up
• 32:59
  with a
• 33:00
  response
• 33:00
  in
• 33:01
  agreement
• 33:01
  with
• 33:01
  your child,
• 33:02
  get that
• 33:02
  permission
• 33:03
  from your child
• 33:04
  and you
• 33:04
  just
• 33:05
  put it
• 33:05
  out there
• 33:06
  that.
• 33:06
  That way
• 33:06
  you
• 33:06
  protect
• 33:07
  your
• 33:07
  privacy,
• 33:08
  you
• 33:08
  maintain
• 33:09
  some
• 33:09
  control
• 33:10
  in the
• 33:10
  situation
• 33:11
  about
• 33:11
  what
• 33:11
  gets shared.
• 33:13
  And
• 33:13
  if your child
• 33:14
  is
• 33:14
  younger,
• 33:15
  you
• 33:15
  again,
• 33:16
  you
• 33:16
  are the
• 33:16
  gatekeeper
• 33:17
  as
• 33:17
  the parent.
• 33:18
  So
• 33:18
  if they
• 33:18
  start
• 33:19
  asking
• 33:19
  lots of
• 33:19
  questions,
• 33:20
  it's
• 33:20
  absolutely
• 33:21
  okay
• 33:22
  to say,
• 33:22
  what?
• 33:23
  It's
• 33:23
  so
• 33:23
  good to
• 33:24
  see you.
• 33:24
  We're
• 33:25
  right
• 33:25
  in the
• 33:25
  middle of
• 33:25
  grocery
• 33:26
  shopping.
• 33:27
  by the
• 33:28
  way,
• 33:28
  I have
• 33:28
  a friend,
• 33:30
  providing
• 33:31
  updates
• 33:31
  on
• 33:31
  Facebook
• 33:32
  if
• 33:32
  you'd to
• 33:32
  take a
• 33:33
  look.
• 33:33
  It's been
• 33:34
  so nice
• 33:34
  to see you,
• 33:35
  but
• 33:35
  we really
• 33:35
  do need
• 33:36
  to be
• 33:36
  going.
• 33:36
  It is
• 33:37
  okay to
• 33:37
  do that.
• 33:38
  Yeah.
• 33:39
  Well,
• 33:39
  and I was
• 33:39
  going
• 33:39
  to say
• 33:40
  to that
• 33:40
  it's
• 33:41
  so
• 33:41
  important
• 33:41
  as we're
• 33:42
  trying to
• 33:43
  live
• 33:43
  our lives
• 33:43
  right,
• 33:44
  as
• 33:44
  you guys
• 33:44
  are
• 33:44
  trying to
• 33:44
  live
• 33:45
  lives
• 33:45
  and just
• 33:45
  really
• 33:46
  keep a
• 33:46
  sense of
• 33:46
  normalcy.
• 33:47
  Yeah,
• 33:48
  it's
• 33:48
  really
• 33:48
  100% okay
• 33:50
  to not
• 33:50
  overexplain
• 33:52
  and cater
• 33:52
  to
• 33:52
  everyone's
• 33:53
  questions
• 33:53
  and every
• 33:54
  second of
• 33:54
  every day.
• 33:55
  And
• 33:55
  if they're
• 33:56
  asking
• 33:56
  you a
• 33:57
  question
• 33:57
  that you
• 33:57
  don't
• 33:57
  want to
• 33:58
  answer,
• 33:58
  you don't
• 33:59
  owe them
• 33:59
  an
• 33:59
  explanation.
• 34:00
  You can
• 34:01
  just
• 34:01
  simply
• 34:01
  say, I'm
• 34:02
  not ready
• 34:02
  to talk
• 34:03
  about
• 34:03
  this
• 34:03
  right
• 34:03
  now.
• 34:03
  they're.
• 34:04
  And that
• 34:04
  doesn't
• 34:04
  even have
• 34:05
  to be
• 34:05
  an
• 34:05
  explanation
• 34:06
  of
• 34:06
  anything.
• 34:06
  You can
• 34:07
  just
• 34:07
  simply
• 34:07
  put
• 34:07
  the boundary above.
• 34:08
  I don't
• 34:08
  really
• 34:09
  want to
• 34:09
  talk
• 34:09
  about
• 34:09
  cancer
• 34:10
  today.
• 34:10
  Yeah.
• 34:11
  and
• 34:11
  they can
• 34:11
  accept
• 34:12
  that
• 34:12
  or not.
• 34:12
  But
• 34:13
  that is
• 34:13
  something
• 34:13
  that has
• 34:14
  been huge
• 34:15
  and just
• 34:15
  giving
• 34:15
  myself
• 34:16
  permission
• 34:16
  to just
• 34:17
  decide
• 34:17
  ahead
• 34:17
  of time
• 34:18
  that
• 34:18
  okay, I'm
• 34:19
  going
• 34:19
  to this
• 34:19
  community
• 34:20
  event.
• 34:20
  If
• 34:20
  somebody
• 34:20
  asks me
• 34:21
  about
• 34:21
  my eye
• 34:21
  or
• 34:22
  somebody
• 34:22
  asks me
• 34:22
  about
• 34:23
  whatever,
• 34:24
  I get
• 34:24
  to
• 34:24
  choose.
• 34:25
  And
• 34:25
  I think
• 34:25
  just
• 34:26
  showing
• 34:26
  and
• 34:26
  demonstrating
• 34:27
  to
• 34:27
  our kids
• 34:27
  that
• 34:28
  that is
• 34:28
  something
• 34:29
  they can do
• 34:29
  that's
• 34:30
  so
• 34:30
  powerful.
• 34:31
  And I
• 34:31
  love what
• 34:31
  you said
• 34:32
  about
• 34:32
  them
• 34:32
  being
• 34:32
  a gatekeeper,
• 34:33
  the parents
• 34:33
  being
• 34:34
  the gatekeepers,
• 34:34
  because
• 34:35
  it really
• 34:35
  is up
• 34:36
  to
• 34:36
  the parent
• 34:36
  to decide
• 34:37
  who to
• 34:37
  let in
• 34:38
  and who
• 34:38
  gets
• 34:39
  kind of
• 34:39
  to cross
• 34:40
  those
• 34:40
  boundaries
• 34:40
  and who
• 34:41
  doesn't.
• 34:41
  With
• 34:42
  again,
• 34:42
  the consent
• 34:42
  of the kid,
• 34:43
  if
• 34:43
  the kid
• 34:43
  is able
• 34:44
  to give
• 34:44
  that kind
• 34:45
  of,
• 34:45
  input.
• 34:45
  Obviously,
• 34:46
  I think
• 34:46
  at a
• 34:46
  certain
• 34:47
  age kids
• 34:47
  can't
• 34:47
  really
• 34:48
  give
• 34:48
  that kind
• 34:48
  of
• 34:48
  an input.
• 34:49
  But
• 34:50
  you said
• 34:50
  about
• 34:50
  elementary
• 34:51
  age,
• 34:51
  I think
• 34:51
  would be
• 34:51
  a good
• 34:52
  point
• 34:53
  to just
• 34:53
  start
• 34:54
  having
• 34:54
  those
• 34:54
  conversations.
• 34:55
  and
• 34:55
  how important
• 34:56
  will that
• 34:56
  make your
• 34:56
  kid feel,
• 34:57
  right?
• 34:58
  oh,
• 34:58
  I just
• 34:59
  I mean,
• 34:59
  it kind
• 34:59
  of
• 34:59
  makes me
• 35:00
  a little
• 35:00
  emotional
• 35:00
  thinking
• 35:01
  just that
• 35:01
  to
• 35:02
  to have
• 35:02
  a parent
• 35:03
  who is
• 35:03
  very
• 35:03
  protective
• 35:05
  and who
• 35:06
  protects
• 35:06
  your
• 35:06
  child,
• 35:06
  not just
• 35:07
  in a
• 35:07
  physical sense,
• 35:08
  but
• 35:08
  in an emotional
• 35:08
  sense
• 35:09
  that is
• 35:10
  so
• 35:10
  powerful.
• 35:12
  Absolutely.
• 35:13
  If I
• 35:13
  may add
• 35:13
  a couple
• 35:14
  more points
• 35:14
  there as
• 35:15
  time goes
• 35:16
  on, and
• 35:17
  you're
• 35:17
  out of
• 35:17
  that
• 35:17
  initial
• 35:18
  phase of
• 35:19
  the shock
• 35:19
  and the
• 35:20
  fear and,
• 35:21
  of
• 35:21
  course,
• 35:21
  some of
• 35:22
  that
• 35:22
  remains,
• 35:23
  of
• 35:23
  course.
• 35:23
  and it
• 35:24
  waxes
• 35:24
  and wanes.
• 35:25
  But the
• 35:27
  when
• 35:27
  you're
• 35:28
  interacting
• 35:29
  with
• 35:29
  your community
• 35:30
  or maybe
• 35:31
  somebody
• 35:31
  reaches
• 35:31
  out
• 35:32
  over time
• 35:33
  because
• 35:33
  you'll
• 35:33
  have,
• 35:34
  less
• 35:34
  people
• 35:34
  reaching
• 35:35
  out over
• 35:35
  time.
• 35:36
  that's
• 35:36
  kind of
• 35:36
  how it
• 35:37
  typically
• 35:37
  goes.
• 35:37
  Right.
• 35:38
  And so if
• 35:39
  something
• 35:39
  pops up,
• 35:40
  you can
• 35:41
  say, hey,
• 35:42
  Miss
• 35:42
  Johnson,
• 35:43
  your
• 35:43
  teacher
• 35:44
  reached
• 35:44
  out,
• 35:45
  they want to
• 35:45
  do some
• 35:46
  special
• 35:46
  thing
• 35:46
  at school
• 35:47
  for you.
• 35:48
  What do you think?
• 35:49
  And so
• 35:49
  you can
• 35:50
  always
• 35:50
  involve
• 35:50
  your child.
• 35:51
  And then
• 35:52
  again,
• 35:52
  yes,
• 35:52
  being
• 35:53
  that
• 35:53
  gatekeeper
• 35:54
  and and
• 35:55
  and
• 35:55
  giving
• 35:55
  them
• 35:56
  permission
• 35:56
  to say
• 35:56
  it's okay
• 35:57
  if you don't
• 35:57
  want them
• 35:58
  to do that
• 35:59
  or.
• 35:59
  Yes,
• 36:00
  she would
• 36:00
  you don't
• 36:01
  really
• 36:01
  want
• 36:01
  to party,
• 36:02
  but you
• 36:02
  definitely
• 36:03
  welcome
• 36:03
  get well
• 36:04
  cards,
• 36:04
  things
• 36:05
  that.
• 36:05
  the other
• 36:06
  piece
• 36:06
  over time
• 36:08
  is
• 36:09
  in terms
• 36:10
  of how
• 36:10
  cancer
• 36:11
  affects
• 36:11
  the family,
• 36:12
  and it's
• 36:12
  another
• 36:13
  member of
• 36:13
  the family
• 36:15
  is.
• 36:16
  And
• 36:16
  you kind of
• 36:17
  spoke to
• 36:17
  this
• 36:17
  earlier,
• 36:18
  with that
• 36:19
  really
• 36:19
  nice
• 36:20
  phrase
• 36:20
  that I've
• 36:21
  completely
• 36:21
  forgotten.
• 36:22
  But fear
• 36:23
  of a name
• 36:23
  only
• 36:24
  increases
• 36:24
  fear
• 36:25
  of the thing
• 36:25
  itself.
• 36:25
  That's
• 36:26
  right.
• 36:26
  nobody
• 36:27
  is there
• 36:28
  cancer
• 36:28
  diagnosis.
• 36:29
  Right.
• 36:30
  You are
• 36:30
  your own
• 36:30
  person.
• 36:31
  You have your own
• 36:32
  life
• 36:32
  experiences.
• 36:33
  You're
• 36:33
  within
• 36:33
  a family
• 36:34
  or within
• 36:35
  a community,
• 36:35
  all those
• 36:36
  things.
• 36:37
  And so
• 36:39
  one
• 36:39
  thing
• 36:39
  that can
• 36:39
  be
• 36:39
  helpful
• 36:40
  is giving
• 36:41
  a name
• 36:41
  to the
• 36:42
  cancer.
• 36:42
  it's Bob
• 36:43
  or it's,
• 36:44
  whatever,
• 36:44
  Sally,
• 36:45
  Susie,
• 36:45
  anything.
• 36:46
  And it
• 36:46
  can be
• 36:46
  even
• 36:46
  a fun,
• 36:47
  silly
• 36:47
  name to,
• 36:49
  to help
• 36:49
  your child,
• 36:50
  say, hey,
• 36:50
  what
• 36:50
  do you want
• 36:50
  to call
• 36:51
  this
• 36:51
  thing?
• 36:52
  And and
• 36:53
  so what
• 36:53
  happens
• 36:54
  is when
• 36:54
  you give
• 36:54
  it
• 36:54
  a name,
• 36:55
  it allows
• 36:56
  your child
• 36:57
  and
• 36:57
  your family
• 36:58
  to
• 36:58
  maintain
• 36:59
  its
• 36:59
  identity.
• 37:00
  Right.
• 37:01
  And
• 37:01
  and to
• 37:01
  keep
• 37:02
  that safe
• 37:03
  and
• 37:03
  separate
• 37:04
  from the
• 37:05
  impact
• 37:06
  of the cancer.
• 37:06
  Because
• 37:07
  let's
• 37:07
  just be
• 37:07
  honest,
• 37:08
  it's it's
• 37:08
  really
• 37:09
  impacting
• 37:10
  your family
• 37:10
  life and
• 37:11
  your
• 37:11
  child,
• 37:11
  all of it.
• 37:12
  So
• 37:13
  it allows
• 37:13
  you to
• 37:14
  maintain
• 37:15
  some
• 37:15
  control
• 37:17
  and
• 37:17
  acknowledge
• 37:18
  that the
• 37:18
  cancer's
• 37:19
  there,
• 37:19
  but
• 37:19
  not let
• 37:20
  that
• 37:20
  cancer
• 37:20
  completely,
• 37:22
  cover
• 37:23
  everything
• 37:24
  in your life
• 37:25
  because
• 37:25
  that's
• 37:25
  not what
• 37:25
  we want.
• 37:26
  We have to
• 37:26
  live
• 37:27
  with these things.
• 37:28
  And so
• 37:29
  then
• 37:29
  it can
• 37:29
  kind of
• 37:29
  become
• 37:30
  a joke,
• 37:31
  a thing
• 37:31
  for
• 37:32
  joking
• 37:32
  around,
• 37:33
  oh, Bob,
• 37:34
  Bob's
• 37:34
  here
• 37:34
  again.
• 37:35
  I just
• 37:35
  can't
• 37:35
  believe
• 37:36
  it.
• 37:36
  Just
• 37:36
  causing
• 37:37
  problems
• 37:37
  again,
• 37:38
  or even
• 37:38
  saying to
• 37:39
  your child
• 37:39
  if they're
• 37:39
  really
• 37:40
  irritable,
• 37:41
  hey,
• 37:41
  sweetie,
• 37:41
  am I
• 37:42
  talking
• 37:42
  to you?
• 37:42
  Or am I
• 37:43
  talking
• 37:43
  to Bob
• 37:43
  right
• 37:44
  now?
• 37:44
  And I
• 37:44
  just
• 37:44
  kind of
• 37:45
  using
• 37:46
  that
• 37:46
  light
• 37:46
  humor,
• 37:47
  can be
• 37:48
  really
• 37:48
  helpful
• 37:49
  in some
• 37:49
  difficult
• 37:50
  moments.
• 37:51
  And, it's
• 37:52
  another
• 37:53
  it's
• 37:53
  actually
• 37:53
  another
• 37:54
  really
• 37:54
  great
• 37:54
  coping
• 37:55
  strategy
• 37:56
  I And
• 37:57
  I've used
• 37:57
  that
• 37:58
  myself.
• 37:58
  I think
• 37:58
  somebody,
• 37:59
  somebody
• 37:59
  decided
• 38:00
  to name
• 38:00
  my tumor
• 38:00
  for me,
• 38:01
  and I
• 38:01
  it just
• 38:01
  kind of
• 38:02
  stuck.
• 38:03
  So
• 38:03
  I get it.
• 38:03
  so what
• 38:04
  about
• 38:04
  some of
• 38:04
  those
• 38:04
  kinds
• 38:05
  of terms
• 38:05
  that
• 38:05
  people
• 38:06
  use
• 38:06
  around
• 38:06
  cancer?
• 38:06
  Right.
• 38:07
  I think
• 38:07
  historically
• 38:08
  we hear
• 38:08
  phrases
• 38:09
  oh,
• 38:09
  you're
• 38:09
  such a
• 38:09
  warrior
• 38:10
  and,
• 38:11
  you're
• 38:11
  winning
• 38:11
  the battle
• 38:11
  and those
• 38:12
  kinds of
• 38:12
  things.
• 38:12
  How
• 38:13
  how would you
• 38:13
  suggest
• 38:14
  that
• 38:14
  families
• 38:15
  kind of
• 38:15
  navigate
• 38:16
  those,
• 38:16
  those terms,
• 38:17
  especially
• 38:17
  if they
• 38:17
  initially
• 38:18
  make them
• 38:18
  feel
• 38:18
  really
• 38:18
  uncomfortable?
• 38:19
  I know
• 38:19
  that even
• 38:20
  for years
• 38:20
  in
• 38:21
  some of
• 38:21
  those
• 38:21
  terms
• 38:22
  make me
• 38:22
  feel
• 38:22
  uncomfortable.
• 38:23
  when they're
• 38:24
  told
• 38:24
  to me,
• 38:24
  they're
• 38:24
  oh,
• 38:25
  you're
• 38:25
  such a
• 38:25
  warrior.
• 38:25
  Or, those
• 38:26
  kinds of
• 38:26
  things.
• 38:26
  I'm I'd
• 38:27
  rather
• 38:27
  not be
• 38:28
  fighting,
• 38:29
  rather
• 38:29
  not be
• 38:29
  fighting
• 38:30
  for my
• 38:30
  life
• 38:30
  here.
• 38:31
  Yes, yes.
• 38:32
  I'm
• 38:32
  so glad
• 38:32
  you asked
• 38:33
  that.
• 38:33
  because
• 38:34
  that's
• 38:34
  very
• 38:34
  common.
• 38:35
  It's
• 38:36
  very much
• 38:36
  within our
• 38:38
  American
• 38:38
  culture.
• 38:39
  I can't really
• 38:40
  speak to
• 38:41
  things
• 38:41
  that are
• 38:42
  maybe
• 38:42
  said in
• 38:43
  other
• 38:43
  cultures
• 38:44
  around
• 38:44
  the
• 38:44
  world.
• 38:45
  I mean, I
• 38:45
  do know,
• 38:47
  in some
• 38:47
  cultures,
• 38:48
  it's it's
• 38:49
  such
• 38:49
  a fear
• 38:50
  inducing
• 38:50
  thing
• 38:51
  that
• 38:51
  it can
• 38:51
  actually
• 38:52
  be fairly
• 38:52
  ostracizing
• 38:53
  for some,
• 38:54
  patients
• 38:54
  and
• 38:55
  families.
• 38:55
  But
• 38:55
  within
• 38:56
  our own
• 38:56
  American
• 38:57
  culture,
• 38:58
  there is
• 38:58
  that
• 38:59
  warrior
• 38:59
  mentality.
• 39:01
  You're
• 39:01
  going
• 39:01
  to beat
• 39:02
  this.
• 39:02
  You are so brave.
• 39:03
  You are a warrior.
• 39:05
  Wow.
• 39:06
  I'll talk about
• 39:07
  I don't think
• 39:08
  people
• 39:08
  realize
• 39:09
  when they
• 39:10
  use that
• 39:11
  terminology.
• 39:13
  what kind of
• 39:14
  pressure
• 39:16
  that puts
• 39:16
  on a
• 39:17
  child
• 39:17
  and a
• 39:18
  family.
• 39:18
  Okay.
• 39:19
  Or
• 39:19
  even as
• 39:20
  an adult
• 39:20
  who's
• 39:21
  dealing
• 39:21
  with a
• 39:21
  cancer
• 39:22
  diagnosis,
• 39:24
  it's
• 39:25
  it really
• 39:26
  it's just
• 39:27
  not
• 39:27
  helpful.
• 39:28
  And
• 39:28
  people
• 39:28
  don't
• 39:29
  realize
• 39:29
  it.
• 39:29
  They're
• 39:30
  really
• 39:30
  trying to
• 39:30
  do it
• 39:31
  out of,
• 39:32
  that
• 39:32
  just
• 39:33
  trying to
• 39:33
  be
• 39:33
  supportive.
• 39:34
  And let's
• 39:35
  be
• 39:35
  honest,
• 39:36
  it's
• 39:36
  uncomfortable
• 39:37
  to see
• 39:38
  somebody
• 39:38
  struggling
• 39:39
  and
• 39:39
  you don't
• 39:40
  know what
• 39:40
  to do.
• 39:40
  You don't
• 39:41
  know what
• 39:41
  to say.
• 39:42
  So
• 39:43
  kind of
• 39:43
  that
• 39:43
  good old
• 39:44
  American
• 39:44
  way,
• 39:45
  pull yourself
• 39:45
  up by
• 39:46
  your
• 39:46
  bootstraps.
• 39:46
  You can do
• 39:47
  this.
• 39:47
  You can beat
• 39:48
  it.
• 39:48
  Well,
• 39:49
  this is
• 39:50
  a really
• 39:50
  different
• 39:51
  situation,
• 39:52
  and it's
• 39:52
  ultimately
• 39:53
  not
• 39:53
  helpful.
• 39:53
  And
• 39:54
  again,
• 39:54
  it can be
• 39:55
  very
• 39:55
  invalidating
• 39:56
  and, just
• 39:57
  outright
• 39:58
  insensitive,
• 39:59
  although nobody
• 40:00
  I think
• 40:00
  would
• 40:01
  ever
• 40:02
  intended
• 40:02
  that way
• 40:03
  or
• 40:03
  even say it
• 40:04
  if
• 40:04
  they knew
• 40:04
  it had
• 40:04
  that
• 40:05
  effect.
• 40:06
  So when I
• 40:07
  talk to
• 40:07
  families
• 40:08
  about
• 40:08
  that,
• 40:09
  I point
• 40:10
  that out,
• 40:11
  because
• 40:11
  it's
• 40:12
  we hear
• 40:12
  it,
• 40:12
  we see
• 40:13
  it,
• 40:13
  we see it
• 40:14
  in
• 40:14
  the media
• 40:15
  when
• 40:15
  we have
• 40:15
  celebrities
• 40:17
  or other
• 40:17
  well
• 40:18
  known
• 40:18
  people
• 40:18
  who are
• 40:19
  fighting,
• 40:20
  cancer.
• 40:20
  Again,
• 40:21
  I just
• 40:21
  came out
• 40:21
  of my mouth
• 40:22
  fighting
• 40:22
  cancer.
• 40:23
  And so,
• 40:24
  it's
• 40:25
  very well
• 40:26
  ingrained
• 40:26
  in our
• 40:26
  culture
• 40:27
  and
• 40:27
  helping
• 40:28
  families
• 40:28
  realize,
• 40:29
  oh,
• 40:29
  this might be
• 40:30
  happening
• 40:31
  to your
• 40:31
  child
• 40:32
  and you.
• 40:32
  And so,
• 40:33
  again,
• 40:35
  sometimes
• 40:35
  you can
• 40:35
  just
• 40:36
  choose
• 40:36
  not to
• 40:37
  respond
• 40:37
  to it,
• 40:38
  or
• 40:38
  you can
• 40:38
  come,
• 40:38
  you can
• 40:39
  use humor
• 40:40
  and say,
• 40:41
  gosh,
• 40:41
  well,
• 40:42
  today
• 40:42
  I'm not
• 40:42
  feeling
• 40:43
  such a
• 40:43
  warrior
• 40:44
  Yeah,
• 40:44
  I just
• 40:45
  had a
• 40:45
  great day
• 40:45
  on the
• 40:46
  battlefield
• 40:46
  yesterday.
• 40:47
  Today's
• 40:47
  my day
• 40:48
  off, and
• 40:48
  just to
• 40:49
  kind of
• 40:49
  lighten
• 40:49
  it now,
• 40:50
  I do
• 40:51
  want to be
• 40:51
  clear.
• 40:52
  I don't want
• 40:52
  people
• 40:53
  to feel
• 40:53
  they have
• 40:54
  to manage
• 40:55
  other
• 40:55
  people.
• 40:56
  Today I'm
• 40:56
  just not
• 40:57
  really up
• 40:57
  for
• 40:57
  talking
• 40:58
  about my
• 40:58
  cancer.
• 40:59
  I'm
• 40:59
  Sally.
• 41:00
  That's
• 41:00
  me.
• 41:00
  Today
• 41:01
  I'm going
• 41:02
  to be
• 41:02
  going to
• 41:02
  school
• 41:03
  and doing
• 41:03
  my
• 41:04
  eight
• 41:04
  year old
• 41:04
  stuff
• 41:05
  and wow,
• 41:07
  that's
• 41:08
  just a
• 41:08
  very
• 41:09
  direct
• 41:09
  a very,
• 41:11
  assertive
• 41:12
  and
• 41:12
  appropriate
• 41:13
  thing
• 41:13
  to say.
• 41:14
  And it
• 41:15
  kind of
• 41:15
  shuts
• 41:16
  down that
• 41:16
  conversation,
• 41:18
  so that
• 41:18
  can be
• 41:18
  really
• 41:19
  helpful.
• 41:19
  Again,
• 41:20
  coming up
• 41:20
  with a
• 41:20
  little
• 41:21
  script
• 41:21
  that
• 41:22
  and it
• 41:22
  will
• 41:23
  it will
• 41:23
  tell and
• 41:23
  people
• 41:24
  will
• 41:24
  get it.
• 41:24
  Some
• 41:25
  may not,
• 41:25
  but most
• 41:26
  people
• 41:26
  will will
• 41:26
  hear that
• 41:27
  loud
• 41:27
  and clear.
• 41:28
  And it
• 41:29
  just
• 41:29
  shifts
• 41:30
  the
• 41:30
  conversation
• 41:31
  to
• 41:31
  something
• 41:31
  else.
• 41:32
  Or it's
• 41:32
  a natural
• 41:33
  break
• 41:33
  in
• 41:33
  the conversation,
• 41:34
  and
• 41:34
  you can
• 41:34
  move on
• 41:35
  and do
• 41:35
  what you
• 41:35
  want to
• 41:35
  be doing
• 41:36
  for the
• 41:36
  day.
• 41:38
  so
• 41:38
  important.
• 41:39
  okay.
• 41:39
  So I love
• 41:40
  what
• 41:40
  you've
• 41:40
  talked
• 41:41
  about
• 41:41
  in terms
• 41:42
  of,
• 41:42
  kind of
• 41:42
  giving
• 41:43
  kids an
• 41:43
  opportunity
• 41:44
  to to
• 41:44
  have a
• 41:44
  simple script
• 41:46
  and
• 41:46
  to just
• 41:46
  have kind
• 41:46
  of a
• 41:47
  pre-planned
• 41:48
  response
• 41:48
  for
• 41:49
  if you want
• 41:49
  to talk
• 41:49
  to
• 41:49
  friends
• 41:50
  or
• 41:50
  if you want
• 41:50
  to talk
• 41:51
  to your
• 41:51
  teachers
• 41:52
  or, just
• 41:53
  having
• 41:53
  people in
• 41:53
  your community
• 41:54
  who are
• 41:54
  being
• 41:55
  supportive,
• 41:56
  asking
• 41:56
  you
• 41:56
  questions.
• 41:57
  And so
• 41:58
  for our
• 41:58
  parents
• 41:58
  out there
• 41:59
  listening,
• 41:59
  when you
• 42:00
  have
• 42:00
  your kid
• 42:00
  dealing
• 42:01
  with
• 42:01
  this
• 42:01
  kind of
• 42:01
  a situation
• 42:02
  and
• 42:02
  they're
• 42:03
  maybe
• 42:03
  let's
• 42:03
  just say
• 42:03
  they're
• 42:03
  a little
• 42:04
  bit
• 42:04
  older,
• 42:04
  I want to say
• 42:05
  this
• 42:06
  could
• 42:06
  apply
• 42:06
  to really
• 42:06
  any of
• 42:07
  the kids
• 42:07
  in our community
• 42:08
  who have been
• 42:08
  diagnosed.
• 42:09
  But, I'm
• 42:10
  thinking
• 42:10
  specifically
• 42:11
  of kind
• 42:11
  of more
• 42:11
  of a
• 42:12
  teenagers,
• 42:12
  who maybe
• 42:13
  they've
• 42:13
  been
• 42:13
  young teens
• 42:14
  and
• 42:14
  they were
• 42:15
  diagnosed,
• 42:16
  I don't
• 42:16
  know,
• 42:16
  11 1213
• 42:18
  now
• 42:18
  they're
• 42:19
  15,
• 42:19
  16, 17.
• 42:20
  They're
• 42:20
  kind of
• 42:21
  entering
• 42:21
  those
• 42:22
  more
• 42:22
  critical
• 42:23
  areas of
• 42:23
  teenage
• 42:24
  head.
• 42:24
  And
• 42:25
  they're
• 42:26
  just
• 42:26
  struggling.
• 42:26
  we have
• 42:27
  parents
• 42:27
  just
• 42:27
  talking
• 42:27
  about how
• 42:28
  they are
• 42:28
  struggling
• 42:29
  with
• 42:29
  this idea
• 42:29
  that
• 42:30
  cancer is
• 42:30
  their
• 42:30
  identity.
• 42:31
  So and
• 42:33
  with
• 42:33
  not even
• 42:33
  just that
• 42:34
  cancer is
• 42:34
  their
• 42:34
  identity,
• 42:35
  but being
• 42:35
  called
• 42:36
  the
• 42:36
  cancer
• 42:36
  kid or,
• 42:38
  being
• 42:38
  told that
• 42:38
  that's
• 42:39
  who
• 42:39
  they are,
• 42:40
  by their,
• 42:40
  in how
• 42:41
  they're
• 42:41
  treated.
• 42:41
  Right?
• 42:41
  Because
• 42:41
  sometimes
• 42:42
  teachers
• 42:42
  will
• 42:43
  treat
• 42:43
  kids
• 42:44
  differently.
• 42:44
  there
• 42:45
  there's
• 42:45
  going
• 42:45
  to be
• 42:45
  different
• 42:46
  situations
• 42:47
  with,
• 42:47
  you said,
• 42:47
  side
• 42:48
  effects
• 42:48
  of
• 42:48
  different
• 42:48
  treatment,
• 42:49
  side
• 42:49
  effects
• 42:49
  of
• 42:49
  medications,
• 42:50
  even just
• 42:51
  if you
• 42:52
  have a
• 42:52
  prosthetic
• 42:52
  eye,
• 42:53
  I can
• 42:53
  imagine
• 42:53
  if I had
• 42:53
  a kid
• 42:54
  who had
• 42:54
  a prosthetic,
• 42:55
  I would
• 42:55
  probably
• 42:56
  talk
• 42:56
  to the
• 42:56
  PE
• 42:56
  teacher
• 42:57
  and
• 42:57
  tell them,
• 42:58
  hey,
• 42:58
  they shouldn't
• 42:58
  play
• 42:59
  dodgeball
• 42:59
  or,
• 43:00
  anything
• 43:00
  that
• 43:00
  could
• 43:00
  knock
• 43:01
  this
• 43:01
  out of
• 43:01
  their
• 43:01
  face?
• 43:02
  there's
• 43:02
  just
• 43:02
  extra
• 43:03
  precautions,
• 43:04
  right?
• 43:04
  I wear
• 43:04
  glasses
• 43:05
  to
• 43:05
  protect
• 43:05
  my
• 43:05
  other
• 43:05
  eye.
• 43:06
  and so,
• 43:06
  there can
• 43:07
  just be a
• 43:07
  lot of changes
• 43:08
  that are
• 43:08
  happening
• 43:09
  for
• 43:09
  these kids,
• 43:10
  and
• 43:10
  they're
• 43:10
  dealing
• 43:11
  with this
• 43:11
  whole,
• 43:13
  I guess,
• 43:13
  the
• 43:13
  label of,
• 43:14
  being
• 43:14
  the
• 43:14
  cancer
• 43:15
  kid.
• 43:15
  so
• 43:15
  what are
• 43:16
  some
• 43:16
  things
• 43:16
  that
• 43:16
  parents
• 43:16
  can do
• 43:17
  to help
• 43:17
  their
• 43:18
  kids
• 43:18
  kind of
• 43:19
  overcome
• 43:19
  that and
• 43:20
  just
• 43:20
  redefine
• 43:21
  who
• 43:21
  they are?
• 43:22
  Great
• 43:22
  question.
• 43:23
  Especially
• 43:23
  with our
• 43:24
  teen age
• 43:25
  group.
• 43:25
  because
• 43:26
  as the
• 43:26
  the big,
• 43:28
  things
• 43:28
  and,
• 43:29
  being a
• 43:29
  teenager
• 43:30
  is, your
• 43:31
  autonomy
• 43:31
  and
• 43:31
  independence,
• 43:32
  you're
• 43:32
  really
• 43:33
  trying to
• 43:34
  you want
• 43:34
  to fit
• 43:35
  in.
• 43:35
  Yet you
• 43:35
  you're
• 43:36
  trying
• 43:36
  different,
• 43:37
  sorts
• 43:38
  of
• 43:38
  personalities
• 43:39
  on trying
• 43:39
  to
• 43:39
  figure out
• 43:40
  how you
• 43:40
  fit in,
• 43:41
  and what
• 43:42
  you want
• 43:43
  to be.
• 43:43
  who
• 43:43
  you are
• 43:44
  as a person.
• 43:45
  So
• 43:45
  a lot of
• 43:46
  identity
• 43:46
  kinds
• 43:47
  of things.
• 43:47
  And then
• 43:47
  this
• 43:48
  happens
• 43:49
  and yes,
• 43:51
  you can
• 43:52
  get into
• 43:53
  being
• 43:54
  labeled
• 43:54
  as such,
• 43:55
  the
• 43:55
  cancer
• 43:56
  kid,
• 43:56
  or you're
• 43:57
  missing
• 43:57
  school
• 43:58
  and
• 43:58
  all of a
• 43:58
  sudden
• 43:58
  you show up
• 43:59
  and oh,
• 44:00
  there
• 44:00
  he is.
• 44:00
  There
• 44:01
  she is,
• 44:02
  and
• 44:02
  there's
• 44:02
  whispering
• 44:03
  and
• 44:03
  things
• 44:03
  that.
• 44:04
  So
• 44:04
  it can be
• 44:05
  a really,
• 44:05
  really
• 44:06
  daunting
• 44:07
  process.
• 44:08
  So
• 44:09
  with the
• 44:09
  teenagers,
• 44:10
  it's
• 44:11
  really
• 44:12
  talking
• 44:13
  to them
• 44:14
  about,
• 44:17
  what,
• 44:18
  what is
• 44:18
  their
• 44:18
  experience.
• 44:20
  And,
• 44:21
  encouraging
• 44:22
  them
• 44:22
  to let
• 44:23
  what's
• 44:23
  going on.
• 44:24
  And I
• 44:25
  will say
• 44:26
  this
• 44:26
  can be a
• 44:26
  good
• 44:27
  opportunity
• 44:28
  to
• 44:29
  have them
• 44:29
  talk to
• 44:30
  somebody
• 44:31
  other
• 44:31
  than
• 44:31
  their
• 44:31
  parent,
• 44:32
  And
• 44:32
  unless,
• 44:33
  of
• 44:33
  course,
• 44:33
  you
• 44:33
  have a
• 44:34
  really
• 44:35
  open,
• 44:36
  communicative
• 44:37
  relationship
• 44:38
  with your
• 44:38
  teenager
• 44:39
  and many
• 44:40
  parents
• 44:40
  do.
• 44:41
  But
• 44:42
  it can be
• 44:42
  sometimes
• 44:43
  be
• 44:43
  helpful
• 44:44
  to have
• 44:44
  a
• 44:44
  professional
• 44:45
  or a
• 44:46
  family
• 44:46
  friend.
• 44:46
  Someone
• 44:47
  that
• 44:47
  really
• 44:47
  knows
• 44:48
  your
• 44:48
  teenager
• 44:49
  and your
• 44:49
  teenager
• 44:50
  has has
• 44:51
  a special
• 44:51
  relationship
• 44:52
  with them.
• 44:53
  So
• 44:54
  you're a
• 44:54
  teenager
• 44:55
  can sort
• 44:55
  of talk
• 44:55
  or vent
• 44:56
  about things,
• 44:57
  and then
• 44:57
  that
• 44:57
  can give
• 44:58
  some good
• 44:58
  information
• 44:59
  about,
• 45:00
  oh, well,
• 45:00
  why don't
• 45:01
  we try
• 45:01
  something
• 45:02
  this now?
• 45:04
  So
• 45:04
  teenagers,
• 45:06
  in
• 45:06
  my experience,
• 45:09
  they really
• 45:10
  don't
• 45:10
  want
• 45:10
  people
• 45:11
  knowing
• 45:11
  what's
• 45:12
  happening
• 45:12
  now.
• 45:12
  There are
• 45:13
  some
• 45:13
  that are
• 45:14
  very open
• 45:14
  and
• 45:14
  it really
• 45:15
  just
• 45:15
  depends
• 45:16
  on who
• 45:16
  they are.
• 45:17
  As
• 45:17
  more of
• 45:18
  an
• 45:18
  extroverted
• 45:19
  kid or,
• 45:20
  more
• 45:20
  introverted.
• 45:21
  There
• 45:21
  might be
• 45:22
  a thing
• 45:23
  identifying
• 45:24
  a teacher
• 45:25
  that
• 45:25
  really
• 45:26
  gets
• 45:26
  your kid
• 45:27
  and
• 45:27
  you're
• 45:28
  that your
• 45:28
  teenager
• 45:29
  really
• 45:29
  trusts,
• 45:31
  and that
• 45:31
  teacher
• 45:32
  can offer
• 45:32
  information
• 45:33
  to
• 45:33
  the other
• 45:34
  teachers,
• 45:35
  and
• 45:36
  that
• 45:36
  can be
• 45:37
  super
• 45:37
  helpful
• 45:38
  to
• 45:38
  sort of
• 45:39
  kind
• 45:40
  of let
• 45:40
  the kind
• 45:41
  of the
• 45:41
  hierarchy
• 45:42
  of people
• 45:43
  in
• 45:43
  the school
• 45:44
  setting
• 45:44
  know
• 45:44
  what's
• 45:45
  happening.
• 45:46
  And
• 45:46
  that way,
• 45:47
  if some
• 45:48
  classmates
• 45:49
  are
• 45:49
  saying
• 45:49
  something,
• 45:50
  the teacher
• 45:51
  can kind
• 45:51
  of say,
• 45:52
  hey,
• 45:52
  let's
• 45:52
  move on
• 45:53
  from
• 45:53
  that.
• 45:53
  We're
• 45:53
  just
• 45:54
  really
• 45:54
  glad Jack
• 45:55
  is back
• 45:55
  with us
• 45:55
  today,
• 45:56
  Let's get
• 45:57
  back
• 45:57
  into the
• 45:57
  class
• 45:58
  stuff.
• 46:00
  I will
• 46:00
  say,
• 46:02
  it's it
• 46:02
  really
• 46:03
  saddens
• 46:04
  me and
• 46:05
  really
• 46:06
  actually
• 46:06
  angers
• 46:07
  me.
• 46:07
  I've,
• 46:07
  I've had
• 46:08
  some
• 46:08
  teens
• 46:09
  who have
• 46:10
  gone back
• 46:10
  to
• 46:10
  school,
• 46:12
  and it's
• 46:13
  because
• 46:14
  there's
• 46:14
  other
• 46:15
  kids
• 46:15
  there
• 46:16
  who are.
• 46:18
  I really
• 46:18
  think
• 46:18
  it comes
• 46:19
  out
• 46:19
  of fear.
• 46:20
  And just
• 46:21
  socially
• 46:21
  as a
• 46:21
  teenager,
• 46:22
  gosh,
• 46:22
  I hope
• 46:23
  that
• 46:23
  never
• 46:23
  happens
• 46:24
  to me.
• 46:25
  So then
• 46:25
  what happens
• 46:26
  is
• 46:27
  they can
• 46:27
  actually
• 46:28
  mock or
• 46:29
  tease
• 46:30
  that that
• 46:31
  student
• 46:32
  who is
• 46:32
  struggling
• 46:33
  so much.
• 46:34
  And so
• 46:35
  that can
• 46:35
  be really
• 46:36
  challenging.
• 46:37
  And so
• 46:38
  definitely
• 46:38
  having
• 46:38
  someone
• 46:39
  your
• 46:39
  teenager
• 46:39
  can talk
• 46:40
  to,
• 46:40
  whether
• 46:40
  it's you
• 46:41
  as a
• 46:41
  parent,
• 46:42
  family
• 46:42
  friend,
• 46:43
  maybe
• 46:43
  they have
• 46:44
  a close
• 46:44
  friend,
• 46:45
  they can talk to
• 46:45
  you
• 46:45
  about
• 46:46
  that or
• 46:46
  a
• 46:46
  professional.
• 46:48
  So
• 46:48
  all said
• 46:48
  and done
• 46:49
  it.
• 46:50
  It's
• 46:50
  kind of a
• 46:51
  it's
• 46:51
  a it's
• 46:51
  a big
• 46:52
  question
• 46:52
  to answer.
• 46:53
  And
• 46:53
  of course
• 46:54
  many things
• 46:54
  it's it
• 46:55
  depends,
• 46:55
  what's
• 46:56
  what's
• 46:56
  going on
• 46:57
  in the
• 46:57
  situation.
• 46:58
  But again
• 46:59
  talking
• 47:00
  to your
• 47:00
  teenager,
• 47:01
  some,
• 47:02
  some
• 47:02
  teens can
• 47:03
  roll
• 47:03
  with it
• 47:03
  yeah, I'm
• 47:04
  the
• 47:04
  cancer
• 47:04
  kid, and
• 47:06
  they can own it
• 47:07
  and
• 47:08
  they can
• 47:08
  use humor
• 47:09
  and that,
• 47:10
  that kind
• 47:10
  of helps
• 47:11
  disarm
• 47:11
  other
• 47:12
  people in
• 47:13
  a good
• 47:13
  way.
• 47:13
  And just
• 47:14
  yeah, I'm
• 47:15
  I'm always
• 47:16
  who
• 47:16
  I've always
• 47:17
  been.
• 47:17
  Let's get
• 47:18
  out and,
• 47:20
  go
• 47:20
  somewhere
• 47:21
  tonight
• 47:21
  after
• 47:22
  school
• 47:22
  and
• 47:22
  hang out
• 47:23
  or.
• 47:23
  Yeah,
• 47:24
  let's
• 47:24
  have a
• 47:25
  quick
• 47:25
  game of
• 47:26
  basketball.
• 47:27
  presuming
• 47:28
  you're
• 47:28
  protected
• 47:28
  and
• 47:29
  you can
• 47:29
  do that,
• 47:30
  but just
• 47:31
  kind of
• 47:32
  trying
• 47:32
  to
• 47:32
  figure out
• 47:34
  what your
• 47:34
  comfort
• 47:34
  level is
• 47:35
  in that
• 47:36
  situation,
• 47:38
  talking
• 47:38
  to people
• 47:39
  to help
• 47:39
  that
• 47:39
  teenager
• 47:41
  feel
• 47:41
  comfortable
• 47:42
  and
• 47:42
  saying
• 47:42
  things
• 47:43
  to others
• 47:43
  and when
• 47:44
  needed,
• 47:44
  pulling
• 47:45
  in
• 47:45
  resources
• 47:46
  amongst
• 47:46
  school
• 47:47
  administration,
• 47:48
  teachers
• 47:49
  who,
• 47:50
  really
• 47:51
  care
• 47:51
  for your child
• 47:51
  because
• 47:52
  let's be
• 47:52
  honest,
• 47:53
  that
• 47:53
  some of
• 47:53
  the
• 47:53
  larger
• 47:54
  high
• 47:54
  schools,
• 47:55
  if your child
• 47:56
  is one of
• 47:57
  maybe
• 47:57
  a couple
• 47:58
  thousand
• 47:58
  students,
• 47:59
  it can be
• 48:00
  easy to
• 48:01
  get lost
• 48:01
  in the
• 48:01
  shuffle.
• 48:02
  And
• 48:02
  teachers
• 48:03
  don't
• 48:03
  understand
• 48:04
  what that
• 48:05
  your child
• 48:05
  is going
• 48:06
  through.
• 48:07
  So
• 48:07
  it kind of
• 48:08
  depends
• 48:08
  on the
• 48:09
  situation,
• 48:10
  how
• 48:10
  you might
• 48:10
  intervene.
• 48:11
  I didn't mean
• 48:12
  to go
• 48:12
  all over that,
• 48:13
  but
• 48:13
  there's
• 48:13
  a lot
• 48:13
  of
• 48:14
  different
• 48:14
  factors
• 48:14
  involved.
• 48:15
  No,
• 48:16
  I love
• 48:16
  that
• 48:16
  you talked
• 48:17
  about
• 48:17
  parents
• 48:17
  being
• 48:17
  this
• 48:17
  gatekeeper,
• 48:18
  but
• 48:18
  it almost
• 48:19
  sounds
• 48:19
  you as
• 48:20
  a parent
• 48:20
  have the ability
• 48:21
  to help
• 48:22
  choose
• 48:22
  and
• 48:22
  select
• 48:23
  some kind
• 48:23
  of
• 48:23
  additional
• 48:24
  gatekeepers
• 48:24
  for your
• 48:25
  children
• 48:25
  and
• 48:25
  different
• 48:25
  scenarios
• 48:26
  and
• 48:26
  I think
• 48:27
  that can
• 48:27
  be so
• 48:27
  important.
• 48:28
  I know
• 48:28
  just
• 48:28
  for me
• 48:29
  personally,
• 48:30
  coming to
• 48:30
  this
• 48:31
  place
• 48:31
  of
• 48:31
  accepting
• 48:32
  that
• 48:32
  cancer
• 48:32
  was a
• 48:32
  part
• 48:33
  of my story,
• 48:33
  but
• 48:33
  it is not
• 48:34
  the whole story
• 48:35
  or
• 48:36
  I think
• 48:36
  I've
• 48:36
  heard
• 48:37
  the
• 48:37
  analogy
• 48:37
  of it's
• 48:37
  a chapter
• 48:38
  in my life
• 48:38
  book.
• 48:39
  It's
• 48:39
  not the
• 48:40
  whole
• 48:40
  book.
• 48:41
  And,
• 48:41
  maybe
• 48:42
  it's
• 48:42
  a couple
• 48:42
  chapters.
• 48:43
  If
• 48:43
  it turns out,
• 48:44
  it
• 48:44
  takes
• 48:44
  a little
• 48:44
  bit
• 48:44
  longer
• 48:45
  to deal
• 48:45
  with or,
• 48:45
  whatever
• 48:46
  you're
• 48:46
  dealing
• 48:46
  with.
• 48:46
  And I
• 48:47
  think,
• 48:47
  for those
• 48:47
  of us
• 48:48
  listening
• 48:48
  who have
• 48:48
  ocular
• 48:49
  melanoma,
• 48:49
  we
• 48:50
  we understand
• 48:50
  that
• 48:50
  this is
• 48:52
  almost
• 48:53
  another
• 48:53
  part of
• 48:54
  our life
• 48:54
  story.
• 48:55
  It's
• 48:55
  not even really
• 48:56
  a chapter
• 48:56
  because
• 48:57
  there is
• 48:57
  similar
• 48:58
  to,
• 48:58
  leukemia.
• 48:59
  There is
• 48:59
  this
• 48:59
  aspect of
• 49:00
  this is
• 49:00
  kind of
• 49:00
  hanging
• 49:01
  over you
• 49:01
  the rest
• 49:01
  of your life,
• 49:02
  and that
• 49:03
  can feel
• 49:03
  really
• 49:04
  daunting.
• 49:04
  And I can
• 49:05
  only
• 49:05
  imagine
• 49:05
  for
• 49:06
  parents,
• 49:06
  that
• 49:06
  probably
• 49:07
  feels
• 49:07
  even more
• 49:07
  daunting
• 49:08
  to think
• 49:08
  that this
• 49:08
  is going
• 49:09
  to hang
• 49:09
  over your
• 49:10
  child's
• 49:10
  life
• 49:11
  just from
• 49:11
  everything
• 49:11
  that
• 49:12
  you've
• 49:12
  heard
• 49:12
  and
• 49:12
  prognosis,
• 49:13
  everything
• 49:13
  that
• 49:13
  you've
• 49:14
  heard
• 49:14
  from
• 49:14
  maybe a
• 49:14
  biopsy
• 49:15
  that was done
• 49:15
  that can be
• 49:16
  really,
• 49:16
  really
• 49:17
  scary
• 49:17
  sometimes.
• 49:18
  and so
• 49:19
  I think
• 49:19
  it's
• 49:19
  important
• 49:20
  to
• 49:20
  acknowledge
• 49:21
  that,
• 49:21
  maybe
• 49:21
  we as
• 49:22
  parents
• 49:22
  are going
• 49:22
  to get
• 49:22
  really
• 49:23
  uncomfortable
• 49:23
  if our kids
• 49:24
  are
• 49:24
  ready to talk
• 49:25
  or
• 49:25
  are trying
• 49:26
  to
• 49:26
  talk to
• 49:26
  us.
• 49:27
  So what
• 49:28
  if I'm
• 49:28
  feeling
• 49:29
  really
• 49:29
  uncomfortable
• 49:29
  and I'm
• 49:30
  the parent?
• 49:30
  My kid
• 49:31
  is trying
• 49:31
  to
• 49:31
  tell me
• 49:31
  something
• 49:32
  is
• 49:32
  happening
• 49:32
  at
• 49:32
  school.
• 49:33
  Let's
• 49:33
  just use
• 49:33
  the
• 49:33
  example
• 49:34
  of
• 49:34
  somebody
• 49:34
  who was
• 49:34
  maybe
• 49:34
  making
• 49:35
  fun
• 49:35
  of them
• 49:35
  at school,
• 49:36
  and
• 49:36
  they're
• 49:36
  telling me
• 49:37
  about
• 49:37
  this,
• 49:37
  and I
• 49:38
  am
• 49:38
  feeling
• 49:38
  so
• 49:39
  uncomfortable
• 49:40
  myself
• 49:40
  as a parent.
• 49:41
  What
• 49:42
  can I do
• 49:42
  in that
• 49:42
  situation
• 49:43
  just
• 49:43
  to kind
• 49:44
  of get
• 49:44
  through,
• 49:44
  but also
• 49:45
  to be
• 49:45
  the best
• 49:45
  support
• 49:46
  for my
• 49:46
  kid?
• 49:47
  Well,
• 49:47
  that's a
• 49:48
  great
• 49:48
  question.
• 49:49
  well,
• 49:49
  first
• 49:49
  things
• 49:49
  first.
• 49:50
  as you're
• 49:50
  going
• 49:51
  through
• 49:51
  this
• 49:51
  experience
• 49:52
  as a parent,
• 49:53
  I always
• 49:53
  tell
• 49:53
  parents
• 49:54
  it's kind
• 49:54
  of a
• 49:54
  double
• 49:55
  whammy.
• 49:56
  You're
• 49:56
  going
• 49:57
  through
• 49:57
  your own
• 49:58
  trauma,
• 49:59
  yourself
• 50:00
  as a
• 50:00
  human
• 50:00
  being
• 50:01
  and,
• 50:02
  sharing
• 50:02
  all of
• 50:02
  this
• 50:03
  information.
• 50:04
  And then
• 50:04
  you're
• 50:05
  also
• 50:05
  going
• 50:05
  through
• 50:06
  what
• 50:06
  we call
• 50:06
  vicarious
• 50:07
  trauma
• 50:08
  of
• 50:08
  witnessing
• 50:09
  your child
• 50:10
  go
• 50:11
  through,
• 50:12
  procedures.
• 50:14
  appearance
• 50:15
  changes,
• 50:15
  just the
• 50:16
  diagnosis
• 50:16
  itself,
• 50:17
  any
• 50:17
  kind of
• 50:18
  prognosis
• 50:19
  related
• 50:19
  information.
• 50:20
  So
• 50:21
  you're,
• 50:22
  a parent
• 50:23
  is
• 50:23
  understandably
• 50:25
  in a very
• 50:25
  vulnerable
• 50:26
  situation,
• 50:27
  and
• 50:27
  you have
• 50:28
  to know
• 50:28
  thyself.
• 50:29
  And so,
• 50:30
  one thing
• 50:31
  I always
• 50:31
  check in
• 50:32
  with
• 50:32
  parents
• 50:32
  when
• 50:33
  I first
• 50:33
  meet
• 50:33
  them,
• 50:34
  after
• 50:34
  their
• 50:34
  child
• 50:35
  gets
• 50:35
  a diagnosis,
• 50:37
  I really
• 50:37
  want
• 50:37
  to know
• 50:38
  what is
• 50:39
  their
• 50:39
  social
• 50:40
  support
• 50:40
  network.
• 50:42
  And
• 50:43
  to me,
• 50:43
  it
• 50:43
  doesn't
• 50:43
  matter
• 50:44
  how many
• 50:44
  people
• 50:45
  there
• 50:45
  are,
• 50:45
  what
• 50:45
  really
• 50:46
  matters
• 50:46
  is
• 50:47
  are they
• 50:48
  people
• 50:48
  that
• 50:48
  really
• 50:49
  offer
• 50:50
  wonderful
• 50:51
  social
• 50:51
  emotional
• 50:52
  support
• 50:53
  as
• 50:53
  well as
• 50:53
  practical
• 50:54
  supports?
• 50:55
  maybe,
• 50:56
  grandparents
• 50:56
  coming in
• 50:57
  to help
• 50:57
  out
• 50:57
  with the
• 50:57
  other
• 50:58
  children
• 50:58
  for a bit,
• 50:59
  those
• 50:59
  sorts
• 51:00
  of things.
• 51:01
  So
• 51:02
  as a parent
• 51:03
  who
• 51:03
  are your
• 51:04
  go
• 51:04
  to people
• 51:05
  and
• 51:06
  that way
• 51:06
  when
• 51:06
  you're
• 51:07
  feeling
• 51:07
  very
• 51:07
  overwhelmed,
• 51:08
  you can reach
• 51:09
  out to
• 51:09
  them to
• 51:10
  vent, to,
• 51:12
  just say,
• 51:13
  gosh,
• 51:13
  I don't know
• 51:13
  if I
• 51:13
  handled
• 51:14
  that
• 51:14
  well.
• 51:15
  That way
• 51:16
  you can
• 51:16
  decompress
• 51:17
  if you're
• 51:18
  and if
• 51:18
  you want
• 51:19
  it,
• 51:19
  you can
• 51:19
  get some
• 51:19
  tips and
• 51:20
  pointers
• 51:20
  from
• 51:21
  friends
• 51:21
  or
• 51:21
  just say,
• 51:22
  I just need
• 51:22
  to vent,
• 51:23
  and just
• 51:24
  get that
• 51:24
  empathy
• 51:25
  and support
• 51:26
  so that
• 51:26
  you can
• 51:26
  basically
• 51:27
  fill up
• 51:28
  your own
• 51:28
  gas tank
• 51:29
  again,
• 51:29
  because
• 51:29
  you're
• 51:29
  going to
• 51:30
  be
• 51:30
  depleted.
• 51:31
  And
• 51:31
  I think
• 51:32
  it's
• 51:32
  especially
• 51:32
  hard
• 51:33
  when you
• 51:33
  hear in
• 51:34
  the
• 51:34
  example
• 51:34
  you use
• 51:35
  that
• 51:36
  someone
• 51:37
  has been
• 51:37
  teasing
• 51:38
  your child,
• 51:39
  and
• 51:39
  I've heard those stories
• 51:40
  and
• 51:40
  I've seen
• 51:41
  parents,
• 51:41
  just get
• 51:42
  incredibly
• 51:43
  upset
• 51:43
  and
• 51:43
  tearful
• 51:44
  just
• 51:44
  talking
• 51:45
  about it.
• 51:46
  Very
• 51:46
  understand
• 51:47
  and very,
• 51:48
  it's just
• 51:48
  so sad
• 51:49
  to see
• 51:50
  that,
• 51:51
  another
• 51:51
  piece for
• 51:51
  the parents
• 51:52
  is
• 51:52
  I've seen
• 51:53
  in some
• 51:54
  families
• 51:54
  where
• 51:55
  the parents
• 51:56
  sort of
• 51:56
  tag team.
• 51:57
  And so
• 51:58
  there's
• 51:58
  some
• 51:58
  things
• 51:59
  the one
• 52:00
  parent is
• 52:00
  really good
• 52:01
  at
• 52:01
  dealing
• 52:01
  with,
• 52:02
  and
• 52:02
  then the
• 52:03
  other
• 52:03
  parent
• 52:03
  is
• 52:03
  very good
• 52:04
  in
• 52:04
  other things.
• 52:04
  And
• 52:05
  if that,
• 52:06
  you can
• 52:06
  say,
• 52:07
  all right,
• 52:08
  sweetheart,
• 52:08
  I need
• 52:09
  I need
• 52:09
  back up,
• 52:10
  I need to
• 52:10
  step
• 52:10
  out of
• 52:11
  this
• 52:11
  situation.
• 52:12
  And,
• 52:12
  maybe
• 52:12
  you go
• 52:13
  cry
• 52:13
  in the closet
• 52:14
  or go
• 52:15
  out for
• 52:15
  a run or,
• 52:16
  just
• 52:17
  lay down
• 52:17
  and
• 52:18
  try to
• 52:18
  just deep
• 52:18
  breathe
• 52:19
  for a
• 52:19
  while.
• 52:20
  Whatever it is
• 52:20
  you need
• 52:21
  to do
• 52:21
  to
• 52:21
  sort of
• 52:22
  gather
• 52:23
  yourself
• 52:24
  and, and,
• 52:24
  kind of
• 52:25
  get back
• 52:26
  to where
• 52:26
  you can
• 52:27
  function
• 52:27
  again
• 52:28
  because
• 52:28
  some of
• 52:28
  this will
• 52:29
  bring you
• 52:29
  to your
• 52:29
  knees.
• 52:30
  And I'm
• 52:30
  not
• 52:30
  trying to
• 52:31
  be
• 52:31
  dramatic.
• 52:31
  It can be
• 52:32
  incredibly
• 52:32
  stressful.
• 52:34
  So if
• 52:34
  so, you
• 52:35
  can
• 52:35
  have that
• 52:35
  within
• 52:36
  your own
• 52:36
  family
• 52:36
  system
• 52:37
  as
• 52:37
  parents.
• 52:39
  I also
• 52:39
  when
• 52:40
  I work
• 52:40
  with
• 52:40
  parents
• 52:41
  and I'm
• 52:42
  sensing
• 52:42
  there
• 52:43
  isn't
• 52:43
  a lot of
• 52:44
  social
• 52:44
  support,
• 52:45
  and in
• 52:45
  fact,
• 52:45
  there's
• 52:46
  actually
• 52:46
  the
• 52:46
  opposite,
• 52:48
  where
• 52:48
  they feel
• 52:48
  that
• 52:49
  maybe
• 52:49
  extended
• 52:50
  family
• 52:50
  are
• 52:50
  judging them
• 52:52
  or
• 52:52
  they're
• 52:52
  not
• 52:53
  asking
• 52:53
  all
• 52:53
  the questions
• 52:54
  they think
• 52:54
  you should
• 52:55
  be asking
• 52:55
  of the
• 52:55
  medical
• 52:56
  professionals.
• 52:57
  There's
• 52:57
  all this
• 52:57
  outside
• 52:58
  unhelpful
• 52:58
  pressure.
• 52:59
  I will
• 53:00
  get
• 53:00
  referrals
• 53:01
  for parents
• 53:01
  so
• 53:01
  they can
• 53:02
  speak
• 53:02
  to their
• 53:03
  own
• 53:03
  therapist
• 53:04
  about
• 53:04
  some of
• 53:05
  these
• 53:05
  things.
• 53:06
  Because,
• 53:07
  again,
• 53:07
  just your
• 53:08
  child,
• 53:09
  doesn't
• 53:09
  want to
• 53:10
  necessarily
• 53:11
  talk
• 53:11
  to you
• 53:12
  about
• 53:12
  everything
• 53:12
  because
• 53:12
  they do
• 53:13
  have they
• 53:13
  do have
• 53:14
  a very
• 53:14
  real fear
• 53:15
  of adding
• 53:16
  additional
• 53:17
  burden
• 53:17
  to you.
• 53:18
  Okay.
• 53:19
  They may
• 53:19
  recognize
• 53:20
  this is
• 53:21
  nobody's
• 53:21
  fault,
• 53:22
  but
• 53:22
  they also
• 53:23
  don't
• 53:23
  want to
• 53:23
  upset
• 53:24
  their
• 53:24
  parents
• 53:24
  further
• 53:25
  by
• 53:25
  telling
• 53:25
  them how
• 53:26
  they
• 53:26
  really
• 53:26
  feel.
• 53:27
  You as
• 53:28
  a parent
• 53:28
  may feel
• 53:29
  in
• 53:29
  parallel
• 53:30
  the same way.
• 53:31
  So you
• 53:31
  don't
• 53:31
  want to
• 53:32
  unload
• 53:32
  on
• 53:32
  friends
• 53:33
  or your
• 53:33
  spouse
• 53:34
  or your
• 53:34
  your own parents.
• 53:36
  so
• 53:36
  sometimes
• 53:37
  it can
• 53:37
  be ideal
• 53:38
  to have
• 53:38
  that,
• 53:39
  that
• 53:39
  professional
• 53:40
  to talk
• 53:41
  to, and
• 53:42
  get that
• 53:42
  support.
• 53:43
  You need.
• 53:43
  And
• 53:44
  it may
• 53:44
  just be
• 53:44
  for a
• 53:44
  brief
• 53:45
  period
• 53:45
  of time,
• 53:46
  or it may
• 53:46
  be ongoing,
• 53:47
  but
• 53:48
  those are
• 53:48
  some ways
• 53:49
  of
• 53:50
  handling
• 53:50
  those
• 53:51
  difficult
• 53:51
  situations
• 53:52
  and
• 53:52
  keeping
• 53:52
  yourself
• 53:53
  as a
• 53:53
  parent
• 53:55
  as best
• 53:55
  you can.
• 53:56
  And,
• 53:57
  kind of,
• 53:58
  trying
• 53:58
  to manage
• 53:58
  your own
• 53:59
  distress
• 54:00
  and
• 54:01
  understand
• 54:02
  when you're
• 54:02
  feeling
• 54:03
  depleted
• 54:03
  and
• 54:03
  when you
• 54:04
  need to
• 54:04
  step back
• 54:05
  and
• 54:06
  sort of
• 54:06
  fill up
• 54:06
  that
• 54:07
  that
• 54:07
  cup of
• 54:07
  yours
• 54:08
  again.
• 54:09
  Well, and
• 54:10
  you had
• 54:10
  talked a
• 54:11
  little bit
• 54:11
  earlier
• 54:11
  to
• 54:12
  kind of
• 54:12
  about
• 54:12
  this
• 54:12
  where you
• 54:13
  said,
• 54:13
  sometimes
• 54:13
  our instinct
• 54:14
  as
• 54:14
  parents
• 54:15
  is to try
• 54:15
  to fix
• 54:16
  something
• 54:16
  when our kids
• 54:16
  bring us
• 54:17
  right.
• 54:17
  And I
• 54:18
  can
• 54:18
  imagine
• 54:19
  in
• 54:19
  this
• 54:20
  kind of
• 54:20
  a
• 54:20
  situation,
• 54:20
  if
• 54:20
  there were
• 54:21
  any kind
• 54:21
  of
• 54:21
  bullying
• 54:22
  happening
• 54:23
  at school
• 54:23
  or with
• 54:23
  friends,
• 54:24
  that
• 54:24
  that would
• 54:24
  be
• 54:25
  probably
• 54:25
  my
• 54:25
  instinct
• 54:26
  would
• 54:26
  be to try
• 54:26
  to fix it.
• 54:28
  but
• 54:28
  you had
• 54:28
  mentioned
• 54:29
  earlier
• 54:29
  that
• 54:29
  sometimes
• 54:30
  when
• 54:30
  we try
• 54:30
  to
• 54:30
  kind of
• 54:31
  go
• 54:31
  into that
• 54:31
  fix
• 54:31
  it mode
• 54:32
  as
• 54:32
  parents,
• 54:33
  that can
• 54:33
  actually
• 54:33
  invalidate
• 54:34
  our
• 54:34
  child's
• 54:35
  experience.
• 54:36
  And
• 54:36
  I think
• 54:36
  that can be
• 54:37
  that's
• 54:37
  just
• 54:37
  something
• 54:38
  that,
• 54:38
  I wanted
• 54:38
  to touch
• 54:38
  on again,
• 54:39
  is just
• 54:39
  to, to
• 54:40
  make sure
• 54:41
  that
• 54:42
  that we
• 54:42
  remember
• 54:43
  to
• 54:43
  validate
• 54:44
  the
• 54:44
  experience,
• 54:44
  validate
• 54:45
  the
• 54:45
  feelings.
• 54:46
  use what
• 54:47
  you
• 54:47
  talked
• 54:47
  about
• 54:47
  before
• 54:47
  with
• 54:48
  reflective
• 54:48
  listening
• 54:49
  and just
• 54:49
  kind of
• 54:49
  repeat
• 54:50
  back
• 54:50
  what was said
• 54:50
  and
• 54:51
  maybe
• 54:51
  what you
• 54:51
  are
• 54:52
  perceiving
• 54:52
  that
• 54:52
  your child
• 54:53
  is
• 54:53
  feeling
• 54:53
  about it.
• 54:54
  And,
• 54:56
  I what
• 54:56
  you
• 54:56
  would.
• 54:56
  We talked
• 54:57
  about
• 54:57
  this a
• 54:57
  little
• 54:57
  before,
• 54:58
  but
• 54:58
  you guys
• 54:58
  have
• 54:58
  said,
• 54:59
  or sorry,
• 54:59
  you had
• 55:00
  said that
• 55:00
  it's okay
• 55:01
  for
• 55:01
  people
• 55:01
  to feel
• 55:02
  uncomfortable
• 55:02
  with this
• 55:03
  and for
• 55:03
  us
• 55:04
  ourselves
• 55:04
  to feel
• 55:04
  uncomfortable
• 55:05
  with this
• 55:05
  because
• 55:06
  it's
• 55:07
  a new,
• 55:07
  difficult
• 55:08
  thing
• 55:08
  to
• 55:08
  navigate.
• 55:08
  We're not
• 55:09
  supposed
• 55:09
  to have
• 55:10
  it
• 55:10
  figured
• 55:10
  out every
• 55:11
  single
• 55:12
  time
• 55:12
  something
• 55:12
  new kind
• 55:13
  of
• 55:13
  comes up
• 55:13
  that
• 55:13
  we have
• 55:14
  to, pivot
• 55:14
  with.
• 55:16
  yeah.
• 55:17
  So,
• 55:18
  I mean,
• 55:18
  there's
• 55:18
  you said,
• 55:19
  there's
• 55:19
  so much
• 55:19
  that we
• 55:19
  could
• 55:19
  talk
• 55:20
  about
• 55:20
  here.
• 55:20
  but
• 55:21
  I do want
• 55:21
  to ask,
• 55:21
  in terms
• 55:22
  of this,
• 55:23
  cancer
• 55:23
  identity
• 55:24
  and just
• 55:24
  the
• 55:25
  people
• 55:25
  calling
• 55:25
  our kid,
• 55:26
  the
• 55:26
  cancer
• 55:26
  kid or
• 55:27
  or
• 55:28
  your kid
• 55:28
  just
• 55:28
  feeling
• 55:28
  that's
• 55:29
  who
• 55:29
  they are.
• 55:30
  what are some questions
• 55:31
  that you
• 55:31
  might
• 55:31
  suggest
• 55:32
  talking
• 55:33
  to one of
• 55:33
  these
• 55:34
  kids
• 55:34
  about,
• 55:34
  whether
• 55:34
  it's
• 55:34
  a parent
• 55:35
  or that
• 55:35
  they
• 55:35
  talked to
• 55:36
  a
• 55:36
  therapist
• 55:36
  about
• 55:37
  just to
• 55:37
  help them
• 55:37
  kind of
• 55:38
  define
• 55:38
  who
• 55:38
  they are.
• 55:39
  because
• 55:39
  I think
• 55:40
  that
• 55:40
  that can
• 55:40
  really
• 55:40
  help
• 55:41
  is
• 55:41
  just to
• 55:41
  get clear
• 55:42
  on,
• 55:42
  who are you
• 55:43
  aside
• 55:44
  from
• 55:44
  cancer
• 55:45
  and just
• 55:45
  to have
• 55:45
  that
• 55:46
  conversation
• 55:47
  or even
• 55:47
  just to,
• 55:47
  remind
• 55:48
  yourself
• 55:48
  of that.
• 55:48
  Right?
• 55:49
  Absolutely.
• 55:51
  so two
• 55:51
  things.
• 55:52
  One thing
• 55:53
  is to
• 55:55
  thinking
• 55:55
  about
• 55:55
  these
• 55:56
  things
• 55:56
  is,
• 55:59
  allowing
• 56:00
  the child
• 56:00
  to have
• 56:01
  some
• 56:01
  space
• 56:01
  to
• 56:01
  talk to
• 56:02
  you
• 56:02
  about it
• 56:02
  if they want
• 56:03
  to.
• 56:04
  And
• 56:05
  the one
• 56:05
  big piece
• 56:06
  I find
• 56:07
  helpful,
• 56:08
  and I
• 56:08
  talked to
• 56:09
  the
• 56:09
  patients
• 56:09
  and
• 56:10
  families
• 56:10
  about it
• 56:10
  all
• 56:10
  the time,
• 56:11
  is that
• 56:13
  dealing
• 56:13
  with a
• 56:13
  cancer
• 56:14
  diagnosis
• 56:14
  and
• 56:15
  treatment
• 56:15
  really
• 56:16
  forces
• 56:17
  you
• 56:17
  to live
• 56:18
  in the
• 56:18
  here
• 56:18
  and now.
• 56:19
  I try to
• 56:20
  say
• 56:20
  helpful
• 56:21
  spin
• 56:21
  on that
• 56:21
  because a
• 56:22
  lot of
• 56:23
  our
• 56:23
  society
• 56:23
  is
• 56:24
  talking
• 56:24
  about
• 56:24
  that
• 56:25
  these
• 56:25
  days.
• 56:25
  we're
• 56:25
  always
• 56:26
  so busy.
• 56:27
  We're
• 56:27
  missing
• 56:27
  the moments,
• 56:28
  but truly
• 56:30
  living in
• 56:30
  the moment.
• 56:31
  And so
• 56:32
  thinking
• 56:32
  about
• 56:34
  what
• 56:34
  it is
• 56:35
  you're
• 56:35
  doing
• 56:36
  now,
• 56:37
  today,
• 56:38
  maybe
• 56:38
  this
• 56:38
  week,
• 56:39
  depending
• 56:39
  on what's
• 56:40
  kind of
• 56:40
  going on
• 56:41
  in your
• 56:41
  your
• 56:41
  child's
• 56:41
  life
• 56:42
  and your
• 56:42
  family
• 56:43
  life.
• 56:43
  And so
• 56:44
  thinking
• 56:44
  about
• 56:45
  focusing
• 56:46
  on the
• 56:46
  here
• 56:46
  and now,
• 56:47
  because
• 56:47
  it's
• 56:47
  very easy
• 56:48
  to slip
• 56:49
  into
• 56:49
  all the
• 56:50
  what ifs
• 56:50
  and
• 56:50
  thinking
• 56:51
  about
• 56:51
  the future.
• 56:52
  And
• 56:52
  what if
• 56:52
  it comes
• 56:53
  back,
• 56:53
  or what
• 56:54
  if
• 56:54
  something
• 56:55
  else goes
• 56:55
  wrong,
• 56:56
  it's
• 56:56
  kind
• 56:57
  of the
• 56:57
  old idea
• 56:57
  don't
• 56:58
  borrow
• 56:58
  trouble.
• 56:59
  Focus on
• 57:00
  what's
• 57:00
  going on
• 57:00
  right
• 57:01
  now.
• 57:01
  Right now
• 57:02
  what
• 57:02
  we know
• 57:03
  are
• 57:03
  things are
• 57:03
  okay.
• 57:05
  So then
• 57:05
  that's
• 57:06
  kind of
• 57:06
  the broad
• 57:06
  based
• 57:07
  big
• 57:07
  picture
• 57:08
  kind of
• 57:08
  mentality,
• 57:09
  mindset
• 57:10
  to, to
• 57:11
  try to,
• 57:11
  to be in
• 57:12
  and
• 57:13
  you're
• 57:13
  not going
• 57:13
  to always
• 57:13
  be
• 57:13
  successful.
• 57:14
  Your mind
• 57:15
  will
• 57:15
  definitely
• 57:15
  wander
• 57:16
  into the
• 57:16
  what ifs.
• 57:17
  Our brains
• 57:18
  are just
• 57:19
  wired
• 57:19
  that.
• 57:19
  We already
• 57:20
  have our
• 57:20
  fight
• 57:21
  or flight
• 57:21
  systems
• 57:22
  a little
• 57:22
  bit more
• 57:22
  activated
• 57:24
  because
• 57:24
  of the
• 57:24
  situation
• 57:25
  we're in,
• 57:25
  so we
• 57:26
  naturally
• 57:26
  go
• 57:27
  that way.
• 57:28
  So
• 57:29
  when you
• 57:29
  get down
• 57:29
  to more,
• 57:30
  in the
• 57:31
  moment
• 57:31
  sorts
• 57:31
  of things
• 57:32
  for
• 57:32
  helping
• 57:33
  kids,
• 57:33
  and it's
• 57:34
  works
• 57:34
  for
• 57:34
  teenagers
• 57:35
  and young
• 57:35
  adults,
• 57:36
  is
• 57:36
  there are
• 57:37
  some
• 57:37
  helpful
• 57:38
  little,
• 57:39
  actually
• 57:40
  fun
• 57:40
  activities
• 57:41
  that
• 57:41
  you can
• 57:42
  use where
• 57:43
  you can
• 57:44
  use,
• 57:45
  colored
• 57:45
  pencils
• 57:46
  and paper,
• 57:47
  and you
• 57:47
  can do
• 57:48
  a pie
• 57:48
  chart.
• 57:48
  if you
• 57:49
  get some
• 57:49
  kind of
• 57:49
  analytical
• 57:50
  minded
• 57:51
  person
• 57:51
  that,
• 57:52
  as a,
• 57:52
  as a
• 57:52
  child
• 57:53
  or
• 57:53
  teenager
• 57:54
  where
• 57:54
  they can
• 57:55
  split up
• 57:56
  the pie
• 57:57
  in
• 57:57
  different
• 57:57
  amounts
• 57:59
  and
• 57:59
  they can
• 57:59
  color
• 58:00
  code it
• 58:00
  this is I'm
• 58:01
  Chloe
• 58:02
  and
• 58:03
  the red
• 58:03
  stands
• 58:04
  for, I'm
• 58:05
  a really
• 58:06
  good
• 58:06
  student.
• 58:06
  Well,
• 58:06
  how much of
• 58:07
  your pie
• 58:08
  is that
• 58:08
  going
• 58:08
  to take
• 58:09
  up?
• 58:09
  And it
• 58:10
  helps
• 58:11
  them
• 58:11
  think about
• 58:13
  their
• 58:14
  that
• 58:14
  they're
• 58:14
  multifaceted.
• 58:15
  We all
• 58:15
  are.
• 58:16
  We're not
• 58:16
  just
• 58:16
  cancer.
• 58:17
  We're
• 58:17
  not just
• 58:18
  an eight
• 58:18
  year old
• 58:18
  or a
• 58:19
  16 year
• 58:19
  old kid.
• 58:21
  and so
• 58:22
  what
• 58:22
  it does
• 58:23
  by going
• 58:23
  through
• 58:23
  that
• 58:23
  exercise,
• 58:25
  they're
• 58:25
  really
• 58:25
  thinking
• 58:26
  creatively
• 58:27
  and very
• 58:27
  actively
• 58:28
  engaged
• 58:29
  in that
• 58:29
  process.
• 58:30
  And then
• 58:31
  you're
• 58:31
  as you're
• 58:32
  doing
• 58:33
  that
• 58:33
  whole process
• 58:33
  and you
• 58:34
  get the
• 58:34
  finished
• 58:34
  project,
• 58:35
  you got
• 58:35
  a beautiful
• 58:36
  piece
• 58:37
  of artwork
• 58:38
  that's
• 58:39
  color
• 58:39
  coded,
• 58:40
  that is
• 58:41
  representative
• 58:42
  of how
• 58:43
  you view
• 58:44
  yourself.
• 58:44
  And
• 58:45
  you can
• 58:45
  put
• 58:45
  that up
• 58:46
  in your
• 58:46
  bedroom,
• 58:47
  up on
• 58:47
  the
• 58:47
  refrigerator,
• 58:49
  you can frame
• 58:49
  it
• 58:49
  whatever
• 58:50
  you want.
• 58:51
  And that
• 58:51
  can be
• 58:52
  a
• 58:52
  touchstone
• 58:53
  for when
• 58:53
  you're
• 58:53
  having a
• 58:54
  rough day
• 58:54
  to say,
• 58:55
  hey,
• 58:55
  let's go
• 58:56
  look at
• 58:56
  that.
• 58:56
  Let's
• 58:57
  see, hey,
• 58:58
  you are
• 58:58
  more than
• 58:59
  this.
• 58:59
  This was a setback.
• 59:01
  And it's
• 59:02
  absolutely
• 59:03
  fine to
• 59:03
  be upset.
• 59:04
  And,
• 59:05
  maybe
• 59:05
  we're going
• 59:06
  to take
• 59:06
  the day
• 59:06
  a little
• 59:07
  slowly
• 59:07
  today
• 59:08
  and just
• 59:08
  kind of
• 59:08
  watch
• 59:09
  movies
• 59:09
  to,
• 59:10
  things
• 59:10
  to help
• 59:10
  soothe
• 59:11
  us.
• 59:12
  And
• 59:12
  remember,
• 59:12
  you're a,
• 59:13
  you've
• 59:13
  got a lot
• 59:14
  of other
• 59:14
  things
• 59:15
  going on.
• 59:16
  You can also
• 59:17
  use that
• 59:18
  initial
• 59:18
  activity
• 59:19
  to
• 59:20
  revamp it
• 59:21
  and
• 59:21
  update it
• 59:22
  over
• 59:22
  time,
• 59:23
  and so
• 59:23
  that
• 59:24
  it's a
• 59:24
  just a
• 59:25
  really
• 59:25
  nice
• 59:25
  concrete
• 59:26
  visual
• 59:27
  representative
• 59:28
  way of
• 59:29
  getting kids
• 59:31
  to really
• 59:31
  think
• 59:31
  about
• 59:32
  themselves
• 59:32
  beyond
• 59:33
  their
• 59:33
  diagnosis.
• 59:34
  And
• 59:34
  it works
• 59:35
  for
• 59:35
  adults,
• 59:35
  too.
• 59:36
  And
• 59:36
  there's
• 59:37
  other
• 59:37
  sorts of,
• 59:38
  ways of,
• 59:40
  of
• 59:40
  illustrating
• 59:41
  that
• 59:41
  it can be
• 59:43
  any sort
• 59:43
  of
• 59:44
  artwork.
• 59:44
  I tend
• 59:45
  to
• 59:45
  gravitate
• 59:45
  towards
• 59:46
  artwork.
• 59:47
  Kids
• 59:47
  might
• 59:47
  want to
• 59:48
  write
• 59:48
  poetry,
• 59:49
  they might
• 59:49
  want to
• 59:50
  journal,
• 59:51
  they might
• 59:51
  want to,
• 59:52
  create
• 59:53
  a song,
• 59:53
  whatever
• 59:54
  it might
• 59:54
  be, or
• 59:54
  a video.
• 59:55
  but just
• 59:56
  getting
• 59:56
  creative
• 59:56
  with that
• 59:57
  and,
• 59:58
  having
• 59:58
  that is
• 59:59
  as
• 59:59
  a reminder,
• 1:00:00
  that
• 1:00:01
  you are
• 1:00:01
  more than
• 1:00:02
  your
• 1:00:02
  cancer
• 1:00:02
  diagnosis.
• 1:00:04
  I think
• 1:00:04
  that's so
• 1:00:05
  beautiful.
• 1:00:06
  And I
• 1:00:06
  love that
• 1:00:06
  you
• 1:00:07
  brought
• 1:00:07
  into that
• 1:00:07
  this, pie
• 1:00:08
  chart
• 1:00:08
  illustration
• 1:00:09
  and
• 1:00:09
  this idea
• 1:00:10
  of just
• 1:00:10
  being
• 1:00:10
  creative
• 1:00:11
  and
• 1:00:11
  having an outlet.
• 1:00:12
  But
• 1:00:12
  I also
• 1:00:13
  love that
• 1:00:13
  you
• 1:00:13
  pointed
• 1:00:13
  out that
• 1:00:14
  that pie
• 1:00:14
  chart
• 1:00:14
  might
• 1:00:14
  change
• 1:00:15
  over
• 1:00:15
  time.
• 1:00:16
  And
• 1:00:16
  I think
• 1:00:16
  that's
• 1:00:16
  that's
• 1:00:17
  something
• 1:00:17
  that
• 1:00:17
  we as,
• 1:00:18
  as
• 1:00:18
  parents,
• 1:00:19
  as people
• 1:00:19
  really
• 1:00:20
  just
• 1:00:20
  have to
• 1:00:20
  remember
• 1:00:20
  too,
• 1:00:21
  is that
• 1:00:21
  we're not
• 1:00:22
  the same
• 1:00:22
  people
• 1:00:24
  that
• 1:00:24
  we were
• 1:00:24
  five
• 1:00:24
  years
• 1:00:25
  ago, ten
• 1:00:25
  years
• 1:00:25
  ago.
• 1:00:26
  we have
• 1:00:26
  different
• 1:00:27
  values,
• 1:00:27
  we have
• 1:00:28
  different
• 1:00:28
  life
• 1:00:28
  experiences
• 1:00:29
  and
• 1:00:29
  all of
• 1:00:30
  those,
• 1:00:30
  kind
• 1:00:31
  of new
• 1:00:31
  facets
• 1:00:32
  of
• 1:00:32
  ourself
• 1:00:33
  are
• 1:00:33
  important
• 1:00:34
  to be
• 1:00:34
  aware of
• 1:00:35
  and to
• 1:00:35
  just
• 1:00:35
  kind of
• 1:00:36
  learn
• 1:00:36
  to
• 1:00:36
  accept.
• 1:00:37
  And also,
• 1:00:38
  I think
• 1:00:38
  can be
• 1:00:39
  really
• 1:00:39
  important
• 1:00:39
  to just
• 1:00:40
  highlight,
• 1:00:41
  as
• 1:00:41
  equally
• 1:00:41
  are more
• 1:00:42
  important
• 1:00:42
  than
• 1:00:43
  going
• 1:00:43
  through
• 1:00:43
  your
• 1:00:43
  cancer
• 1:00:43
  diagnosis.
• 1:00:44
  Shari,
• 1:00:45
  can you
• 1:00:45
  just
• 1:00:45
  tell us
• 1:00:46
  what
• 1:00:46
  would be
• 1:00:47
  some
• 1:00:47
  concrete
• 1:00:48
  questions
• 1:00:48
  that our
• 1:00:48
  parents
• 1:00:49
  could ask
• 1:00:49
  their kids
• 1:00:50
  to kind
• 1:00:51
  of help,
• 1:00:51
  maybe
• 1:00:52
  probe
• 1:00:52
  some of
• 1:00:53
  that,
• 1:00:53
  developing
• 1:00:54
  a pie
• 1:00:54
  chart
• 1:00:54
  or
• 1:00:54
  something
• 1:00:55
  that?
• 1:00:55
  I think
• 1:00:56
  there's
• 1:00:56
  some good
• 1:00:57
  questions
• 1:00:57
  and
• 1:00:57
  we can
• 1:00:58
  put these
• 1:00:58
  down
• 1:00:58
  in the
• 1:00:58
  show
• 1:00:58
  notes
• 1:00:59
  as well
• 1:00:59
  for
• 1:00:59
  parents
• 1:01:00
  to have
• 1:01:00
  just on hand.
• 1:01:01
  so
• 1:01:01
  what would be
• 1:01:02
  some of
• 1:01:02
  the ones
• 1:01:02
  you would
• 1:01:02
  say are
• 1:01:03
  the most
• 1:01:03
  important?
• 1:01:04
  and maybe
• 1:01:05
  in, in
• 1:01:05
  different
• 1:01:06
  phases.
• 1:01:07
  Right.
• 1:01:07
  So for
• 1:01:07
  sure,
• 1:01:08
  initial
• 1:01:08
  diagnosis,
• 1:01:09
  things
• 1:01:09
  that,
• 1:01:10
  just
• 1:01:10
  trying
• 1:01:11
  to get
• 1:01:11
  your
• 1:01:11
  bearings
• 1:01:12
  one thing
• 1:01:13
  I always
• 1:01:13
  ask kids
• 1:01:14
  and families,
• 1:01:15
  and
• 1:01:15
  you can
• 1:01:15
  certainly
• 1:01:16
  ask your
• 1:01:16
  child
• 1:01:17
  this.
• 1:01:18
  What what
• 1:01:19
  do you understand
• 1:01:21
  about
• 1:01:21
  your
• 1:01:21
  diagnosis?
• 1:01:23
  do you
• 1:01:24
  do
• 1:01:24
  you have
• 1:01:24
  a name
• 1:01:24
  for it,
• 1:01:25
  or
• 1:01:26
  do what
• 1:01:26
  the doctors
• 1:01:27
  are
• 1:01:27
  saying?
• 1:01:28
  Tell me
• 1:01:29
  what
• 1:01:29
  you understand
• 1:01:31
  and
• 1:01:31
  that can
• 1:01:32
  be really
• 1:01:33
  powerful,
• 1:01:33
  gives
• 1:01:33
  you
• 1:01:34
  really
• 1:01:34
  helpful
• 1:01:34
  information.
• 1:01:36
  It also
• 1:01:36
  helps
• 1:01:36
  to
• 1:01:37
  alleviate
• 1:01:37
  some of
• 1:01:37
  that
• 1:01:38
  pressure
• 1:01:38
  of using
• 1:01:39
  the C
• 1:01:40
  word.
• 1:01:40
  let your
• 1:01:41
  child
• 1:01:41
  kind of
• 1:01:41
  tell you,
• 1:01:43
  assuming
• 1:01:43
  that
• 1:01:43
  they're
• 1:01:44
  open to
• 1:01:44
  doing
• 1:01:44
  that,
• 1:01:45
  but just
• 1:01:46
  kind of
• 1:01:46
  letting
• 1:01:46
  them know
• 1:01:47
  that
• 1:01:47
  there's
• 1:01:48
  no right
• 1:01:48
  or wrong
• 1:01:48
  answer.
• 1:01:49
  I'm
• 1:01:49
  just
• 1:01:49
  trying
• 1:01:49
  to get
• 1:01:50
  a sense
• 1:01:50
  of what
• 1:01:51
  you're
• 1:01:51
  hearing,
• 1:01:51
  because
• 1:01:52
  I'm
• 1:01:52
  hearing
• 1:01:52
  things,
• 1:01:52
  too.
• 1:01:53
  And I
• 1:01:53
  just want
• 1:01:53
  to make
• 1:01:54
  sure
• 1:01:55
  we're on
• 1:01:55
  the same
• 1:01:56
  page
• 1:01:56
  together.
• 1:01:57
  So that's
• 1:01:57
  a really
• 1:01:58
  good
• 1:01:58
  question.
• 1:01:59
  And,
• 1:02:01
  as you
• 1:02:01
  you go on
• 1:02:02
  and talk
• 1:02:03
  about
• 1:02:03
  things
• 1:02:04
  gosh,
• 1:02:05
  you're
• 1:02:05
  going to
• 1:02:05
  be
• 1:02:05
  missing
• 1:02:05
  some school
• 1:02:06
  for a
• 1:02:06
  while.
• 1:02:08
  might not
• 1:02:08
  see your
• 1:02:08
  friends
• 1:02:09
  in the
• 1:02:09
  neighborhood.
• 1:02:11
  we
• 1:02:11
  don't have
• 1:02:11
  to talk
• 1:02:12
  about it
• 1:02:12
  right
• 1:02:12
  now,
• 1:02:13
  but I,
• 1:02:13
  I think
• 1:02:13
  it would
• 1:02:14
  be
• 1:02:14
  helpful
• 1:02:14
  if we talked about,
• 1:02:16
  what do you want
• 1:02:17
  your
• 1:02:17
  classmates
• 1:02:18
  and
• 1:02:18
  teachers
• 1:02:19
  to know?
• 1:02:19
  What do you want
• 1:02:20
  your friends
• 1:02:21
  to know?
• 1:02:22
  what are
• 1:02:23
  what are
• 1:02:23
  some
• 1:02:23
  things
• 1:02:24
  that,
• 1:02:24
  maybe
• 1:02:24
  you
• 1:02:25
  definitely
• 1:02:25
  don't
• 1:02:25
  want them
• 1:02:26
  to know.
• 1:02:27
  And you
• 1:02:27
  can be
• 1:02:27
  there as
• 1:02:28
  the
• 1:02:28
  parent,
• 1:02:28
  just
• 1:02:28
  kind of
• 1:02:29
  taking
• 1:02:29
  notes
• 1:02:30
  and, just
• 1:02:30
  and just
• 1:02:30
  say, hey,
• 1:02:31
  nothing's
• 1:02:31
  set in
• 1:02:31
  stone.
• 1:02:32
  I just
• 1:02:32
  thought
• 1:02:32
  it might
• 1:02:33
  be
• 1:02:33
  helpful
• 1:02:33
  to talk
• 1:02:34
  about
• 1:02:34
  these
• 1:02:34
  things.
• 1:02:35
  and then,
• 1:02:37
  what?
• 1:02:37
  Big
• 1:02:38
  questions
• 1:02:38
  such as,
• 1:02:39
  hearing
• 1:02:40
  about
• 1:02:40
  all of
• 1:02:40
  this,
• 1:02:41
  what is
• 1:02:43
  what is
• 1:02:44
  most
• 1:02:44
  scary to,
• 1:02:45
  is there
• 1:02:45
  anything
• 1:02:46
  that
• 1:02:47
  maybe
• 1:02:47
  makes you
• 1:02:48
  feel sad?
• 1:02:49
  Anything
• 1:02:50
  that
• 1:02:50
  actually
• 1:02:51
  makes
• 1:02:51
  you feel
• 1:02:53
  maybe
• 1:02:54
  okay or
• 1:02:55
  or maybe
• 1:02:56
  not
• 1:02:56
  happy,
• 1:02:56
  that just
• 1:02:57
  kind of
• 1:02:57
  content?
• 1:02:58
  Because
• 1:02:58
  some kids
• 1:02:59
  will tell
• 1:02:59
  you,
• 1:03:00
  well,
• 1:03:00
  gee, now
• 1:03:00
  I finally know
• 1:03:01
  what's
• 1:03:01
  going on.
• 1:03:02
  Or.
• 1:03:03
  Well,
• 1:03:03
  actually,
• 1:03:04
  I kind of
• 1:03:05
  like
• 1:03:05
  the idea.
• 1:03:05
  I don't
• 1:03:05
  have
• 1:03:06
  to go
• 1:03:06
  to school
• 1:03:06
  for the
• 1:03:06
  next few
• 1:03:07
  weeks,
• 1:03:08
  depending
• 1:03:08
  on the
• 1:03:08
  kid's age
• 1:03:09
  and, and,
• 1:03:10
  sometimes
• 1:03:11
  their
• 1:03:11
  way of
• 1:03:11
  coping,
• 1:03:12
  hey,
• 1:03:12
  get out
• 1:03:12
  of jail,
• 1:03:12
  free card
• 1:03:13
  with
• 1:03:13
  school
• 1:03:13
  for a bit,
• 1:03:14
  but just
• 1:03:15
  kind of
• 1:03:15
  getting
• 1:03:15
  that
• 1:03:16
  information
• 1:03:16
  is
• 1:03:17
  really helpful.
• 1:03:18
  And then
• 1:03:18
  as you
• 1:03:18
  get
• 1:03:19
  into it
• 1:03:19
  again,
• 1:03:20
  going
• 1:03:20
  back
• 1:03:20
  to that
• 1:03:20
  really
• 1:03:21
  important
• 1:03:21
  point of
• 1:03:23
  really
• 1:03:24
  asking
• 1:03:24
  your kid
• 1:03:25
  what is
• 1:03:26
  okay
• 1:03:27
  to let
• 1:03:28
  other
• 1:03:28
  people
• 1:03:28
  know, on
• 1:03:29
  social
• 1:03:29
  media,
• 1:03:30
  people
• 1:03:31
  are,
• 1:03:32
  asking me
• 1:03:33
  questions.
• 1:03:34
  I'm
• 1:03:34
  getting
• 1:03:34
  all kinds
• 1:03:34
  of
• 1:03:34
  private
• 1:03:35
  messages
• 1:03:35
  on
• 1:03:36
  Facebook
• 1:03:36
  and
• 1:03:36
  Instagram.
• 1:03:38
  What is okay
• 1:03:39
  for
• 1:03:40
  for us
• 1:03:40
  to share
• 1:03:41
  about
• 1:03:41
  you?
• 1:03:42
  Well,
• 1:03:42
  gee, mom,
• 1:03:43
  nothing
• 1:03:43
  at all.
• 1:03:44
  Oh, okay.
• 1:03:45
  Well,
• 1:03:45
  all right,
• 1:03:45
  let's
• 1:03:46
  start
• 1:03:46
  with
• 1:03:46
  that.
• 1:03:46
  people
• 1:03:47
  are going
• 1:03:47
  to
• 1:03:47
  want to
• 1:03:47
  know
• 1:03:47
  things
• 1:03:48
  and
• 1:03:48
  you can
• 1:03:49
  certainly
• 1:03:49
  say,
• 1:03:49
  okay,
• 1:03:50
  at
• 1:03:50
  this time
• 1:03:51
  we're
• 1:03:51
  just
• 1:03:51
  asking
• 1:03:52
  the family
• 1:03:53
  or our
• 1:03:53
  friends
• 1:03:53
  and
• 1:03:54
  family
• 1:03:54
  to just
• 1:03:54
  give us
• 1:03:55
  a little
• 1:03:55
  privacy.
• 1:03:56
  We're
• 1:03:56
  still
• 1:03:57
  trying to
• 1:03:57
  absorb
• 1:03:58
  and
• 1:03:58
  and get
• 1:03:59
  used to
• 1:03:59
  things,
• 1:04:00
  and
• 1:04:00
  we will
• 1:04:01
  certainly
• 1:04:01
  be in
• 1:04:02
  touch in
• 1:04:02
  the future
• 1:04:03
  as we
• 1:04:03
  can.
• 1:04:04
  And we
• 1:04:04
  really
• 1:04:05
  appreciate
• 1:04:06
  allowing
• 1:04:06
  us
• 1:04:07
  to have
• 1:04:07
  some
• 1:04:07
  privacy.
• 1:04:08
  That's
• 1:04:09
  great
• 1:04:09
  modeling
• 1:04:09
  for your
• 1:04:10
  kid.
• 1:04:10
  It's
• 1:04:10
  great
• 1:04:10
  boundaries
• 1:04:11
  setting,
• 1:04:12
  and it
• 1:04:13
  also
• 1:04:14
  helps
• 1:04:14
  your child
• 1:04:14
  to feel
• 1:04:15
  again,
• 1:04:15
  we talked
• 1:04:16
  about
• 1:04:16
  earlier,
• 1:04:17
  you are their
• 1:04:17
  protector
• 1:04:18
  and
• 1:04:18
  their advocates
• 1:04:20
  and
• 1:04:21
  they get
• 1:04:21
  to have
• 1:04:22
  some
• 1:04:22
  control
• 1:04:22
  over the
• 1:04:23
  messaging,
• 1:04:24
  which is
• 1:04:24
  really
• 1:04:25
  important,
• 1:04:25
  especially
• 1:04:26
  for
• 1:04:26
  teenagers.
• 1:04:27
  Right.
• 1:04:28
  So
• 1:04:28
  those are
• 1:04:28
  some
• 1:04:29
  really
• 1:04:29
  good
• 1:04:29
  questions
• 1:04:30
  to ask.
• 1:04:31
  And
• 1:04:31
  then
• 1:04:31
  as you
• 1:04:32
  go along,
• 1:04:33
  again,
• 1:04:34
  especially
• 1:04:35
  teenagers,
• 1:04:36
  they
• 1:04:36
  might
• 1:04:36
  just
• 1:04:36
  kind of
• 1:04:37
  randomly
• 1:04:37
  start
• 1:04:38
  talking
• 1:04:38
  about
• 1:04:39
  something.
• 1:04:39
  So just
• 1:04:40
  again
• 1:04:40
  saying,
• 1:04:41
  wow,
• 1:04:41
  okay.
• 1:04:42
  That's
• 1:04:42
  really
• 1:04:42
  interesting.
• 1:04:43
  Tell me more
• 1:04:44
  or
• 1:04:44
  what else
• 1:04:45
  do
• 1:04:45
  you want
• 1:04:45
  to
• 1:04:45
  tell me
• 1:04:46
  about
• 1:04:46
  that?
• 1:04:46
  Just open
• 1:04:47
  the door.
• 1:04:47
  Just open
• 1:04:48
  ended
• 1:04:48
  questions.
• 1:04:49
  And,
• 1:04:50
  it can
• 1:04:51
  just be
• 1:04:51
  I see
• 1:04:52
  with,
• 1:04:52
  a number
• 1:04:53
  of
• 1:04:53
  patients,
• 1:04:53
  where
• 1:04:54
  they
• 1:04:54
  have,
• 1:04:55
  a
• 1:04:55
  surveillance
• 1:04:55
  scan
• 1:04:56
  coming
• 1:04:56
  up.
• 1:04:56
  We get that
• 1:04:57
  scanxiety
• 1:04:58
  Oh, gosh.
• 1:04:59
  I've been
• 1:05:00
  doing
• 1:05:00
  okay.
• 1:05:00
  the six
• 1:05:01
  month
• 1:05:01
  checkup
• 1:05:02
  is coming.
• 1:05:02
  We got to go
• 1:05:03
  through
• 1:05:03
  the MRI
• 1:05:04
  and
• 1:05:04
  whatever
• 1:05:05
  scans and
• 1:05:06
  blood
• 1:05:06
  tests and
• 1:05:07
  and just
• 1:05:08
  saying,
• 1:05:08
  okay,
• 1:05:09
  well,
• 1:05:09
  how do
• 1:05:09
  we want
• 1:05:10
  to plan
• 1:05:10
  for that?
• 1:05:11
  What are some things
• 1:05:13
  we want
• 1:05:13
  to do
• 1:05:14
  leading
• 1:05:14
  up to it?
• 1:05:15
  So we can
• 1:05:15
  kind of
• 1:05:16
  manage
• 1:05:16
  our own
• 1:05:17
  anxiety
• 1:05:18
  and fear,
• 1:05:19
  maybe
• 1:05:19
  plan some
• 1:05:21
  fun
• 1:05:21
  things
• 1:05:22
  to do as
• 1:05:22
  a family
• 1:05:23
  or
• 1:05:23
  arrange
• 1:05:24
  for,
• 1:05:25
  if you've
• 1:05:26
  got an
• 1:05:26
  older
• 1:05:26
  child
• 1:05:27
  to have,
• 1:05:27
  good time
• 1:05:28
  with
• 1:05:28
  their
• 1:05:28
  friends,
• 1:05:29
  that sort
• 1:05:29
  of thing.
• 1:05:30
  But
• 1:05:30
  the idea
• 1:05:31
  is just
• 1:05:32
  always
• 1:05:33
  kind of
• 1:05:33
  checking
• 1:05:34
  in with
• 1:05:34
  your kid
• 1:05:35
  about
• 1:05:35
  how
• 1:05:35
  are things
• 1:05:36
  going,
• 1:05:36
  or
• 1:05:37
  they've
• 1:05:37
  had
• 1:05:38
  a rough
• 1:05:38
  day.
• 1:05:40
  just
• 1:05:41
  inviting
• 1:05:42
  them
• 1:05:42
  to talk
• 1:05:42
  about it
• 1:05:43
  and
• 1:05:43
  again,
• 1:05:43
  not
• 1:05:44
  offering
• 1:05:44
  solutions
• 1:05:45
  right off
• 1:05:45
  the bat
• 1:05:46
  or say,
• 1:05:47
  hey,
• 1:05:48
  do
• 1:05:48
  you want
• 1:05:48
  to do
• 1:05:48
  something
• 1:05:49
  about
• 1:05:49
  this?
• 1:05:50
  Or do
• 1:05:50
  we
• 1:05:50
  kind of
• 1:05:51
  just
• 1:05:51
  let it
• 1:05:51
  go?
• 1:05:52
  or.
• 1:05:53
  Yeah,
• 1:05:53
  I just want
• 1:05:53
  to let
• 1:05:54
  I just
• 1:05:54
  want to
• 1:05:55
  park it.
• 1:05:55
  I'm oh,
• 1:05:56
  okay,
• 1:05:56
  great.
• 1:05:57
  All right.
• 1:05:57
  Now I'm
• 1:05:58
  in the middle of dinner.
• 1:05:59
  You want to
• 1:05:59
  help me
• 1:06:00
  fix, fix
• 1:06:01
  the rest
• 1:06:01
  of
• 1:06:01
  the dinner
• 1:06:02
  or I'm
• 1:06:02
  making
• 1:06:03
  dessert
• 1:06:03
  tonight.
• 1:06:04
  What would you
• 1:06:04
  just
• 1:06:05
  kind of
• 1:06:05
  get back
• 1:06:05
  into the
• 1:06:05
  swing
• 1:06:06
  of
• 1:06:06
  things.
• 1:06:06
  So, And,
• 1:06:07
  I mean,
• 1:06:08
  I could
• 1:06:08
  go on
• 1:06:08
  further,
• 1:06:09
  but
• 1:06:09
  as things
• 1:06:10
  happen,
• 1:06:11
  if things
• 1:06:11
  are not
• 1:06:12
  looking
• 1:06:12
  good,
• 1:06:13
  having
• 1:06:14
  those
• 1:06:14
  conversations,
• 1:06:15
  because
• 1:06:15
  something
• 1:06:16
  that can
• 1:06:16
  happen.
• 1:06:18
  I learned
• 1:06:18
  this
• 1:06:19
  from our
• 1:06:20
  really
• 1:06:20
  wonderful
• 1:06:21
  palliative
• 1:06:22
  care
• 1:06:22
  physician.
• 1:06:24
  You
• 1:06:24
  get into
• 1:06:24
  what's
• 1:06:24
  called,
• 1:06:25
  a mutual
• 1:06:25
  pretense
• 1:06:26
  where
• 1:06:27
  you both know
• 1:06:28
  something
• 1:06:29
  good is
• 1:06:29
  not happening,
• 1:06:30
  something
• 1:06:30
  really
• 1:06:30
  scary.
• 1:06:31
  And,
• 1:06:32
  neither
• 1:06:33
  one of
• 1:06:33
  you
• 1:06:33
  wants
• 1:06:33
  to talk
• 1:06:34
  about it,
• 1:06:34
  and
• 1:06:34
  you're
• 1:06:34
  trying
• 1:06:34
  to guess
• 1:06:35
  how each
• 1:06:36
  other's
• 1:06:36
  thinking
• 1:06:36
  about it.
• 1:06:37
  It's
• 1:06:37
  kind of
• 1:06:37
  the
• 1:06:37
  elephant
• 1:06:38
  in the room.
• 1:06:39
  And so,
• 1:06:41
  kind of
• 1:06:41
  saying,
• 1:06:41
  all right,
• 1:06:42
  I don't
• 1:06:42
  know
• 1:06:42
  about you,
• 1:06:43
  but
• 1:06:43
  I've been
• 1:06:43
  thinking
• 1:06:43
  a lot
• 1:06:44
  about
• 1:06:44
  what
• 1:06:44
  the doctor
• 1:06:44
  said
• 1:06:45
  today.
• 1:06:45
  I just
• 1:06:46
  wanted to
• 1:06:46
  check in
• 1:06:47
  with you.
• 1:06:47
  what?
• 1:06:49
  Do
• 1:06:49
  you have
• 1:06:49
  anything
• 1:06:50
  you want
• 1:06:50
  to say
• 1:06:50
  about
• 1:06:51
  it, or.
• 1:06:51
  I don't
• 1:06:51
  know, I'm
• 1:06:52
  feeling
• 1:06:52
  kind of
• 1:06:52
  freaked
• 1:06:53
  out.
• 1:06:53
  And it's
• 1:06:53
  okay
• 1:06:54
  to admit
• 1:06:54
  that as a
• 1:06:54
  parent,
• 1:06:55
  I'm.
• 1:06:55
  I'm
• 1:06:56
  scared,
• 1:06:57
  And I
• 1:06:57
  want
• 1:06:57
  to be
• 1:06:57
  there to
• 1:06:58
  support
• 1:06:58
  you.
• 1:06:59
  I I'm
• 1:07:00
  wondering,
• 1:07:00
  what is that
• 1:07:01
  for you,
• 1:07:02
  and see
• 1:07:02
  it.
• 1:07:02
  Just
• 1:07:03
  invite
• 1:07:03
  your child
• 1:07:04
  to open
• 1:07:04
  up to you.
• 1:07:06
  But
• 1:07:06
  when you
• 1:07:06
  get to
• 1:07:07
  those
• 1:07:07
  kinds of
• 1:07:08
  situations,
• 1:07:09
  I always
• 1:07:10
  tell
• 1:07:10
  families
• 1:07:11
  from the
• 1:07:11
  get go,
• 1:07:13
  if
• 1:07:13
  they're
• 1:07:13
  a family
• 1:07:14
  that
• 1:07:14
  to talk
• 1:07:15
  and
• 1:07:15
  process
• 1:07:15
  a lot,
• 1:07:16
  that
• 1:07:16
  actually
• 1:07:17
  is a
• 1:07:17
  good thing.
• 1:07:18
  And
• 1:07:18
  it can help
• 1:07:19
  when
• 1:07:19
  you get
• 1:07:20
  into
• 1:07:20
  really,
• 1:07:21
  really
• 1:07:21
  scary,
• 1:07:22
  challenging
• 1:07:22
  situations.
• 1:07:24
  if you're
• 1:07:24
  a family
• 1:07:25
  that
• 1:07:25
  doesn't
• 1:07:25
  really do
• 1:07:26
  that,
• 1:07:26
  that's
• 1:07:27
  something
• 1:07:27
  I kind of
• 1:07:28
  want
• 1:07:29
  to know
• 1:07:29
  up front.
• 1:07:29
  So we can
• 1:07:30
  kind of
• 1:07:31
  as we
• 1:07:31
  move
• 1:07:31
  along,
• 1:07:32
  I can be
• 1:07:33
  a little
• 1:07:33
  more
• 1:07:33
  instructive
• 1:07:34
  and,
• 1:07:35
  concrete
• 1:07:36
  with
• 1:07:36
  some tools
• 1:07:37
  I can
• 1:07:38
  share
• 1:07:38
  with
• 1:07:38
  the family,
• 1:07:39
  the way
• 1:07:39
  to ask
• 1:07:40
  questions,
• 1:07:40
  the way
• 1:07:41
  to deal
• 1:07:41
  with
• 1:07:41
  things,
• 1:07:42
  pulling
• 1:07:42
  in other
• 1:07:43
  people
• 1:07:44
  that
• 1:07:44
  can be
• 1:07:45
  of
• 1:07:45
  support
• 1:07:45
  to that
• 1:07:46
  child
• 1:07:46
  and
• 1:07:46
  family
• 1:07:47
  members.
• 1:07:51
  Well,
• 1:07:51
  sorry,
• 1:07:52
  this
• 1:07:52
  has been
• 1:07:53
  absolutely
• 1:07:53
  insightful
• 1:07:54
  and just
• 1:07:55
  so many
• 1:07:56
  good
• 1:07:56
  tools,
• 1:07:56
  so
• 1:07:56
  many things
• 1:07:57
  that
• 1:07:57
  I hope
• 1:07:57
  that our
• 1:07:57
  listeners,
• 1:07:58
  you guys,
• 1:07:58
  I hope
• 1:07:58
  you can
• 1:07:59
  add
• 1:07:59
  this to
• 1:07:59
  your
• 1:07:59
  toolbox,
• 1:08:00
  whether
• 1:08:00
  it's for
• 1:08:00
  you and
• 1:08:01
  your family
• 1:08:01
  coping
• 1:08:02
  with this
• 1:08:02
  diagnosis
• 1:08:03
  in one of
• 1:08:03
  your
• 1:08:03
  children,
• 1:08:04
  or if you
• 1:08:05
  just
• 1:08:05
  start
• 1:08:05
  listening
• 1:08:05
  because
• 1:08:06
  you
• 1:08:06
  just need
• 1:08:06
  a little
• 1:08:07
  extra
• 1:08:07
  support.
• 1:08:07
  these are
• 1:08:08
  some ideas
• 1:08:08
  that
• 1:08:08
  might
• 1:08:09
  help you.
• 1:08:09
  I think
• 1:08:10
  we can
• 1:08:10
  both
• 1:08:10
  agree
• 1:08:11
  that
• 1:08:11
  coping
• 1:08:11
  with a
• 1:08:11
  pediatric
• 1:08:12
  cancer
• 1:08:12
  diagnosis
• 1:08:13
  is
• 1:08:13
  probably
• 1:08:14
  one of
• 1:08:14
  the most
• 1:08:15
  unthinkable
• 1:08:16
  things
• 1:08:16
  for a
• 1:08:17
  parent to
• 1:08:18
  to have
• 1:08:18
  to
• 1:08:19
  navigate
• 1:08:19
  with
• 1:08:19
  their
• 1:08:19
  child,
• 1:08:20
  and also
• 1:08:21
  for the
• 1:08:21
  child
• 1:08:21
  themselves.
• 1:08:22
  I think
• 1:08:22
  it can
• 1:08:22
  feel
• 1:08:23
  pretty insane.
• 1:08:24
  but I
• 1:08:25
  think
• 1:08:25
  that
• 1:08:26
  what we
• 1:08:26
  hope to
• 1:08:27
  demonstrate
• 1:08:27
  through
• 1:08:28
  having
• 1:08:28
  shari
• 1:08:28
  on here
• 1:08:29
  is just
• 1:08:29
  that it's
• 1:08:30
  possible
• 1:08:30
  to
• 1:08:30
  develop
• 1:08:31
  this,
• 1:08:31
  the tools
• 1:08:32
  and the
• 1:08:32
  resiliency
• 1:08:33
  to get
• 1:08:33
  through
• 1:08:34
  it.
• 1:08:34
  And
• 1:08:35
  there was
• 1:08:35
  a phrase
• 1:08:35
  that
• 1:08:35
  you used
• 1:08:36
  earlier
• 1:08:36
  today,
• 1:08:37
  it was
• 1:08:38
  it was
• 1:08:38
  something
• 1:08:38
  kind of
• 1:08:39
  coming to
• 1:08:39
  accept
• 1:08:40
  it, but
• 1:08:41
  I can't
• 1:08:41
  remember
• 1:08:42
  what
• 1:08:42
  it was.
• 1:08:42
  Do you
• 1:08:42
  remember
• 1:08:43
  what
• 1:08:43
  you said
• 1:08:43
  exactly?
• 1:08:46
  I think
• 1:08:46
  it's
• 1:08:47
  and it
• 1:08:47
  might be
• 1:08:47
  a little
• 1:08:48
  bit
• 1:08:48
  about
• 1:08:48
  what
• 1:08:48
  Michelle
• 1:08:49
  talked
• 1:08:49
  about
• 1:08:49
  too,
• 1:08:50
  because
• 1:08:50
  we talk
• 1:08:50
  a lot
• 1:08:51
  about
• 1:08:51
  having
• 1:08:51
  that
• 1:08:51
  acceptance
• 1:08:52
  mindset.
• 1:08:53
  But yeah,
• 1:08:54
  it
• 1:08:54
  might
• 1:08:54
  have been
• 1:08:54
  that.
• 1:08:55
  It can
• 1:08:56
  be. Yeah.
• 1:08:56
  It's kind
• 1:08:57
  of
• 1:08:57
  learning
• 1:08:57
  to be
• 1:08:58
  in the
• 1:08:58
  thick of it,
• 1:08:59
  but not
• 1:08:59
  letting
• 1:09:00
  it
• 1:09:00
  completely
• 1:09:00
  overshadow
• 1:09:01
  everything.
• 1:09:02
  Yeah.
• 1:09:03
  but I
• 1:09:03
  think.
• 1:09:03
  Yeah,
• 1:09:04
  those it
• 1:09:05
  it is,
• 1:09:05
  really
• 1:09:06
  about,
• 1:09:08
  ways to
• 1:09:09
  feel in
• 1:09:10
  control.
• 1:09:10
  Have
• 1:09:11
  predictability,
• 1:09:12
  have
• 1:09:12
  enrichment
• 1:09:13
  in your
• 1:09:14
  life,
• 1:09:14
  quality
• 1:09:14
  of life
• 1:09:15
  oriented
• 1:09:16
  things
• 1:09:17
  because
• 1:09:17
  you are
• 1:09:17
  going to
• 1:09:18
  be
• 1:09:18
  dealing
• 1:09:18
  with
• 1:09:18
  this,
• 1:09:19
  this
• 1:09:19
  extra
• 1:09:20
  member of
• 1:09:21
  the family.
• 1:09:21
  So yeah.
• 1:09:23
  Well
• 1:09:23
  thank
• 1:09:24
  you.
• 1:09:24
  Sorry.
• 1:09:24
  Thank you
• 1:09:24
  for
• 1:09:25
  helping
• 1:09:25
  us.
• 1:09:25
  Just to
• 1:09:26
  see that
• 1:09:26
  it's
• 1:09:26
  possible
• 1:09:27
  to
• 1:09:27
  develop
• 1:09:27
  the
• 1:09:27
  skills
• 1:09:28
  to navigate
• 1:09:29
  this
• 1:09:29
  diagnosis
• 1:09:29
  as a family
• 1:09:30
  and that
• 1:09:30
  you can
• 1:09:31
  see your
• 1:09:31
  kids
• 1:09:31
  navigate.
• 1:09:32
  This
• 1:09:32
  diagnosis
• 1:09:33
  is
• 1:09:33
  doable.
• 1:09:33
  And it's
• 1:09:34
  figure
• 1:09:34
  out, even
• 1:09:34
  if you
• 1:09:35
  don't
• 1:09:35
  know
• 1:09:35
  all of
• 1:09:35
  the answers
• 1:09:36
  right
• 1:09:36
  away.
• 1:09:36
  I
• 1:09:36
  love what
• 1:09:37
  you said
• 1:09:37
  about
• 1:09:37
  just kind
• 1:09:37
  of
• 1:09:38
  learning
• 1:09:38
  and
• 1:09:38
  figuring it
• 1:09:38
  out
• 1:09:39
  as you
• 1:09:39
  go, and
• 1:09:39
  that
• 1:09:39
  you'll
• 1:09:40
  be
• 1:09:40
  willing
• 1:09:40
  to
• 1:09:40
  figure it
• 1:09:41
  out
• 1:09:41
  together.
• 1:09:41
  So
• 1:09:42
  hopefully
• 1:09:42
  this
• 1:09:43
  has been
• 1:09:43
  helpful
• 1:09:43
  for, for
• 1:09:44
  all of
• 1:09:44
  you
• 1:09:44
  who are
• 1:09:44
  listening
• 1:09:45
  and
• 1:09:46
  if you are
• 1:09:46
  listening,
• 1:09:47
  please
• 1:09:47
  make sure
• 1:09:47
  to share
• 1:09:48
  this.
• 1:09:48
  If
• 1:09:48
  you happen
• 1:09:48
  to come
• 1:09:49
  across
• 1:09:49
  someone
• 1:09:49
  who is
• 1:09:50
  a parent
• 1:09:50
  of a
• 1:09:50
  child
• 1:09:51
  with
• 1:09:51
  ocular
• 1:09:51
  melanoma,
• 1:09:52
  please
• 1:09:52
  share
• 1:09:52
  this
• 1:09:53
  episode
• 1:09:53
  with them
• 1:09:54
  and,
• 1:09:54
  make sure
• 1:09:55
  that
• 1:09:55
  they have
• 1:09:55
  the
• 1:09:55
  support
• 1:09:55
  and the
• 1:09:56
  tools
• 1:09:56
  and the
• 1:09:56
  resources,
• 1:09:57
  because
• 1:09:57
  we
• 1:09:58
  definitely
• 1:09:58
  want to
• 1:09:58
  make sure
• 1:09:58
  that our
• 1:09:59
  pediatric
• 1:09:59
  mommies
• 1:09:59
  and
• 1:10:00
  their families
• 1:10:00
  are not
• 1:10:01
  left
• 1:10:01
  kind of
• 1:10:02
  floundering
• 1:10:02
  in the dark.
• 1:10:02
  We want to support
• 1:10:03
  you guys.
• 1:10:03
  So
• 1:10:04
  thank you,
• 1:10:04
  Shari,
• 1:10:05
  again
• 1:10:05
  for
• 1:10:05
  being here.
• 1:10:06
  And
• 1:10:06
  we will
• 1:10:06
  see you
• 1:10:06
  guys next
• 1:10:07
  time.
• 1:10:07
  Thank you
• 1:10:08
  so much.
• 1:10:08
  It's my
• 1:10:09
  pleasure
• 1:10:09
  and