Latest / The Eye Believe Podcast / Eye Cancer Diagnosed at 13 , Presley's story of Inspiration Ocular Melanoma

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Eye Cancer Diagnosed at 13 , Presley's story of Inspiration Ocular Melanoma · The Eye Believe Podcast

• 0:00
  I am here
• 0:00
  with
• 0:00
  Presley and
• 0:01
  his mom,
• 0:01
  Stephanie,
• 0:02
  and they're
• 0:03
  from
• 0:03
  Woodruff,
• 0:04
  South
• 0:04
  Carolina,
• 0:04
  joining us
• 0:05
  on the Eye
• 0:05
  Believe
• 0:05
  Podcast
• 0:06
  to talk
• 0:06
  about
• 0:07
  Presley's
• 0:07
  diagnosis
• 0:08
  in honor
• 0:08
  of
• 0:08
  childhood
• 0:09
  cancer
• 0:09
  awareness.
• 0:10
  my name is
• 0:10
  Presley
• 0:11
  Jackson,
• 0:11
  and I was
• 0:12
  diagnosed
• 0:12
  with ocular
• 0:13
  melanoma
• 0:14
  in December
• 0:15
  of 2018.
• 0:16
  at the
• 0:16
  time,
• 0:16
  it was confusing
• 0:18
  and it was
• 0:18
  kind of
• 0:19
  like,
• 0:19
  shocking,
• 0:19
  like you
• 0:20
  had to take
• 0:20
  a second
• 0:21
  for it
• 0:21
  to sink in.
• 0:22
  And I think
• 0:23
  really it's
• 0:23
  just now
• 0:24
  sinking
• 0:24
  in, Im
• 0:25
  beginning
• 0:26
  to
• 0:26
  understand
• 0:27
  and
• 0:27
  reevaluate
• 0:28
  and live
• 0:29
  my life
• 0:30
  after this
• 0:31
  weird 3
• 0:32
  or 4 year
• 0:33
  gap
• 0:33
  thats been
• 0:33
  in between.
• 0:34
  I'm using
• 0:35
  it to,
• 0:35
  I guess,
• 0:36
  spread
• 0:36
  awareness
• 0:37
  to ocular
• 0:38
  melanoma,
• 0:39
  childhood
• 0:39
  cancer,
• 0:40
  and really
• 0:40
  using it
• 0:41
  to put
• 0:41
  my voice
• 0:42
  out there
• 0:42
  on YouTube
• 0:43
  and every
• 0:44
  other
• 0:44
  social
• 0:45
  media
• 0:45
  platform.
• 0:46
  So it's
• 0:46
  really,
• 0:46
  I guess,
• 0:47
  helped me
• 0:47
  find a
• 0:48
  footing
• 0:49
  an awareness
• 0:49
  for it
• 0:50
  Presley
• 0:50
  having
• 0:50
  been kind
• 0:51
  of
• 0:51
  following
• 0:51
  your
• 0:52
  journey
• 0:52
  as you've
• 0:53
  started
• 0:53
  sharing
• 0:53
  more on
• 0:53
  social
• 0:54
  media, it's
• 0:54
  been pretty
• 0:55
  amazing
• 0:55
  to see
• 0:55
  just how
• 0:56
  empowering
• 0:56
  it is
• 0:56
  for you,
• 0:57
  to start
• 0:57
  sharing
• 0:58
  more and
• 0:58
  to start
• 0:58
  being
• 0:58
  more aware.
• 0:59
  how would you say
• 1:00
  or when
• 1:00
  would you say
• 1:01
  that shift
• 1:01
  happened
• 1:02
  that you
• 1:02
  became
• 1:02
  more aware
• 1:03
  of of
• 1:03
  what your
• 1:04
  diagnosis
• 1:04
  was and
• 1:05
  kind of
• 1:05
  what that
• 1:06
  entailed.
• 1:06
  I guess
• 1:07
  I became
• 1:07
  more aware,
• 1:08
  really
• 1:08
  at the
• 1:09
  start of
• 1:09
  this year.
• 1:09
  So January,
• 1:10
  February,
• 1:11
  March of
• 1:11
  this year,
• 1:12
  I began
• 1:13
  to realize
• 1:13
  and,
• 1:14
  you know,
• 1:14
  become more
• 1:14
  aware
• 1:15
  and start
• 1:16
  spreading
• 1:16
  awareness.
• 1:17
  And it has
• 1:17
  played
• 1:17
  an effect
• 1:18
  into
• 1:18
  everything
• 1:18
  I've done
• 1:19
  since then,
• 1:20
  in the last
• 1:21
  5 or 6,
• 1:21
  seven
• 1:22
  months of
• 1:23
  my life,
• 1:23
  I've been,
• 1:24
  aware and,
• 1:25
  spreading it
• 1:26
  and
• 1:26
  using it in
• 1:27
  every
• 1:27
  aspect of
• 1:28
  my life,
• 1:28
  from school
• 1:29
  to sports,
• 1:30
  social
• 1:30
  media,
• 1:31
  every part
• 1:31
  of my life.
• 1:32
  So
• 1:32
  when you say
• 1:33
  you became
• 1:34
  aware,
• 1:34
  was there
• 1:35
  anything
• 1:35
  specific
• 1:36
  that that
• 1:36
  kind of
• 1:37
  triggered
• 1:37
  that, like,
• 1:38
  do
• 1:38
  you feel like
• 1:38
  like
• 1:38
  did
• 1:38
  you just
• 1:39
  have
• 1:39
  questions
• 1:39
  one day
• 1:40
  and
• 1:40
  you asked
• 1:40
  your mom
• 1:40
  what is my
• 1:41
  diagnosis?
• 1:42
  what is this?
• 1:43
  What does this
• 1:43
  mean?
• 1:43
  Or did
• 1:44
  you Google,
• 1:45
  what did it
• 1:45
  look like
• 1:45
  for you
• 1:46
  to kind of
• 1:46
  first
• 1:46
  discover
• 1:47
  more about,
• 1:47
  like what
• 1:48
  ocular
• 1:48
  melanoma
• 1:49
  was for you
• 1:50
  and how
• 1:51
  it was,
• 1:51
  you know,
• 1:51
  going
• 1:51
  to
• 1:51
  potentially
• 1:52
  or had
• 1:52
  already
• 1:53
  affected
• 1:53
  your life
• 1:53
  and how
• 1:54
  it would
• 1:54
  continue to
• 1:55
  affect
• 1:55
  your life.
• 1:55
  it was really
• 1:56
  a mixture
• 1:57
  of both,
• 1:57
  asking
• 1:58
  and my mom
• 1:59
  and then
• 1:59
  also
• 2:00
  doctors,
• 2:01
  therapists
• 2:02
  everywhere
• 2:03
  from
• 2:03
  coaches
• 2:04
  and sports,
• 2:05
  about
• 2:05
  how it's
• 2:06
  going to
• 2:06
  affect
• 2:06
  my life
• 2:07
  now,
• 2:07
  how it's
• 2:07
  going to
• 2:08
  affect
• 2:08
  my life
• 2:09
  5 or 10
• 2:09
  years
• 2:10
  from now,
• 2:10
  with
• 2:11
  driving,
• 2:11
  sports,
• 2:12
  school,
• 2:12
  etc.,
• 2:13
  etc., etc.
• 2:14
  and that's
• 2:14
  really how
• 2:15
  it started,
• 2:16
  how it's
• 2:16
  going to
• 2:16
  affect
• 2:17
  my life
• 2:17
  and how
• 2:17
  I can
• 2:18
  work around
• 2:19
  obstacles
• 2:19
  such as
• 2:20
  being blind
• 2:21
  in one eye
• 2:22
  and how
• 2:22
  I can
• 2:22
  continue
• 2:23
  living
• 2:23
  my life
• 2:24
  and making
• 2:25
  every
• 2:25
  moment
• 2:25
  count.
• 2:25
  I love
• 2:26
  that,
• 2:26
  and I think
• 2:26
  that's
• 2:27
  that's
• 2:27
  such a
• 2:27
  powerful
• 2:28
  way to,
• 2:28
  I think,
• 2:29
  kind of
• 2:29
  approach.
• 2:30
  Learning
• 2:30
  about this
• 2:31
  is learning
• 2:31
  about it
• 2:31
  as
• 2:31
  it affects
• 2:32
  you, and
• 2:32
  learning
• 2:32
  about it
• 2:33
  as you're
• 2:33
  kind of
• 2:33
  confronted
• 2:34
  with the
• 2:34
  different
• 2:34
  hurdles
• 2:35
  that
• 2:35
  you have
• 2:35
  to
• 2:35
  overcome.
• 2:36
  And like
• 2:37
  you said,
• 2:37
  the
• 2:37
  obstacles
• 2:37
  that
• 2:38
  kind of
• 2:38
  come in
• 2:38
  your way.
• 2:39
  so let's
• 2:39
  talk
• 2:39
  a little bit
• 2:40
  about like
• 2:40
  some of
• 2:40
  the
• 2:40
  obstacles
• 2:41
  that you've
• 2:41
  had to
• 2:41
  overcome or
• 2:42
  to kind of
• 2:42
  grapple
• 2:43
  with
• 2:43
  so far.
• 2:43
  I know you
• 2:44
  you
• 2:44
  mentioned
• 2:45
  you talked,
• 2:45
  in the
• 2:46
  little
• 2:46
  excerpt
• 2:47
  that you
• 2:47
  wrote,
• 2:47
  you talked
• 2:48
  about
• 2:48
  sports
• 2:48
  and how
• 2:48
  this has
• 2:49
  affected
• 2:49
  your
• 2:50
  pitching game.
• 2:50
  So talk
• 2:51
  to us
• 2:51
  a little bit
• 2:51
  about like,
• 2:52
  what are kind
• 2:52
  of the
• 2:52
  mindsets
• 2:53
  that have
• 2:53
  helped you
• 2:54
  in pitching
• 2:55
  to kind of
• 2:55
  overcome
• 2:56
  this and
• 2:56
  to keep
• 2:57
  working
• 2:57
  through it?
• 2:57
  Because
• 2:58
  obviously
• 2:58
  you love
• 2:58
  baseball.
• 2:59
  baseball
• 2:59
  is a
• 3:00
  huge part
• 3:01
  of my life
• 3:02
  and
• 3:02
  pitching
• 3:02
  is a huge
• 3:03
  part
• 3:03
  of my life.
• 3:03
  So
• 3:04
  to take
• 3:05
  that step
• 3:05
  back in,
• 3:06
  having to
• 3:06
  regroup
• 3:07
  because
• 3:07
  going up on
• 3:08
  to
• 3:08
  the mound
• 3:09
  with
• 3:09
  one eye,
• 3:10
  it messes
• 3:10
  with your
• 3:10
  depth
• 3:11
  perception
• 3:11
  and your
• 3:12
  reaction
• 3:12
  time.
• 3:13
  So it's
• 3:13
  scarier to
• 3:15
  go up there
• 3:15
  and have to
• 3:16
  compete
• 3:16
  against
• 3:17
  people
• 3:17
  who aren't,
• 3:18
  missing
• 3:19
  depth
• 3:19
  perception
• 3:20
  So I guess
• 3:20
  the mindset
• 3:21
  I go up
• 3:21
  there
• 3:21
  with is,
• 3:23
  nothing is
• 3:24
  impossible.
• 3:24
  people
• 3:24
  like to
• 3:25
  count
• 3:25
  people
• 3:25
  out and,
• 3:26
  say
• 3:27
  the odds
• 3:27
  are against you.
• 3:28
  But
• 3:28
  I believe
• 3:29
  the odds
• 3:29
  are never
• 3:29
  against
• 3:30
  you.
• 3:30
  And I guess
• 3:31
  I'm living
• 3:31
  proof
• 3:31
  of that.
• 3:32
  I was told
• 3:33
  2 or 3
• 3:33
  years ago
• 3:34
  that
• 3:34
  I wouldn't
• 3:34
  be able
• 3:35
  to pitch.
• 3:35
  And
• 3:35
  if I had
• 3:35
  to pitch,
• 3:36
  I'd have
• 3:36
  to wear
• 3:36
  like a
• 3:37
  helmet
• 3:38
  to go
• 3:38
  up there
• 3:38
  and pitch.
• 3:38
  And here
• 3:39
  I am,
• 3:40
  2 or 3
• 3:40
  years
• 3:40
  later,
• 3:41
  pitching in
• 3:42
  huge games
• 3:43
  that mean
• 3:43
  a lot
• 3:43
  to people
• 3:44
  and not
• 3:45
  having a
• 3:46
  difficulty
• 3:46
  doing it
• 3:47
  or the odds
• 3:47
  against me.
• 3:48
  So.
• 3:49
  The mindset
• 3:49
  that
• 3:49
  nothing
• 3:50
  is
• 3:50
  impossible.
• 3:51
  love that.
• 3:51
  tell me,
• 3:52
  you know,
• 3:52
  kind of
• 3:52
  what a
• 3:52
  school
• 3:53
  look like
• 3:53
  for you.
• 3:53
  Now,
• 3:53
  obviously
• 3:54
  you're in
• 3:54
  high school.
• 3:55
  I felt like
• 3:55
  it was
• 3:56
  an
• 3:56
  important
• 3:56
  period
• 3:57
  of time
• 3:57
  in my life.
• 3:58
  so
• 3:58
  talk to us
• 3:58
  a little
• 3:59
  about
• 3:59
  what has
• 4:00
  high school
• 4:00
  looks like.
• 4:01
  you've
• 4:01
  basically
• 4:02
  gone
• 4:02
  through
• 4:02
  your entire
• 4:03
  high school
• 4:03
  career
• 4:04
  with this
• 4:04
  diagnosis.
• 4:05
  what
• 4:05
  started out
• 4:06
  and maybe
• 4:07
  what was difficult
• 4:08
  and
• 4:08
  what has changed
• 4:09
  since then.
• 4:10
  when I
• 4:10
  went to
• 4:11
  public
• 4:11
  school
• 4:12
  in
• 4:12
  high school,
• 4:12
  where it's
• 4:13
  seven hours
• 4:14
  a day
• 4:14
  and you're
• 4:14
  in the
• 4:15
  bright
• 4:15
  lights
• 4:15
  of the
• 4:15
  classroom,
• 4:16
  and really
• 4:17
  nowadays
• 4:17
  everything
• 4:18
  here is on
• 4:19
  the computer.
• 4:19
  So
• 4:20
  that would
• 4:20
  really mess
• 4:20
  with me.
• 4:21
  And I
• 4:21
  would have
• 4:21
  horrible
• 4:21
  headache
• 4:22
  and
• 4:22
  it would
• 4:23
  just really
• 4:24
  drain me
• 4:24
  of energy.
• 4:25
  So I would
• 4:26
  say
• 4:26
  sophomore
• 4:27
  year
• 4:27
  of high
• 4:28
  school
• 4:28
  was rough,
• 4:29
  but
• 4:29
  not like
• 4:30
  from the
• 4:30
  sports
• 4:30
  or friends
• 4:31
  wise.
• 4:31
  that
• 4:31
  part of
• 4:32
  high school
• 4:32
  was
• 4:32
  incredible
• 4:33
  and
• 4:33
  the events
• 4:33
  and the
• 4:34
  atmosphere.
• 4:34
  But I would
• 4:35
  say
• 4:35
  the work
• 4:36
  and the
• 4:36
  stress on
• 4:36
  my eye
• 4:37
  and
• 4:37
  the energy
• 4:38
  it took was
• 4:39
  really draining.
• 4:40
  And
• 4:41
  then I've
• 4:41
  made
• 4:41
  the jump
• 4:42
  to
• 4:43
  homeschool,
• 4:44
  which has
• 4:44
  really
• 4:45
  changed
• 4:45
  my life
• 4:45
  for
• 4:46
  the better.
• 4:46
  Now
• 4:46
  my schedule
• 4:47
  is on me.
• 4:48
  It's less.
• 4:49
  It's almost
• 4:50
  all paperwork,
• 4:50
  so I don't
• 4:51
  have to
• 4:51
  worry
• 4:51
  about
• 4:51
  the stress
• 4:52
  of
• 4:52
  computers
• 4:53
  or the
• 4:53
  lights
• 4:54
  going
• 4:54
  into my eye.
• 4:55
  And
• 4:55
  if I do have
• 4:55
  a headache
• 4:56
  coming on,
• 4:56
  I can
• 4:57
  take a
• 4:57
  break,
• 4:57
  take
• 4:58
  an hour off
• 4:58
  and then
• 4:59
  regroup.
• 4:59
  And the
• 5:00
  schedule is
• 5:01
  super
• 5:01
  flexible,
• 5:02
  so doctor's
• 5:03
  appointments
• 5:03
  are no
• 5:03
  longer
• 5:04
  affect
• 5:04
  my
• 5:04
  schedule.
• 5:05
  I'm no
• 5:05
  longer
• 5:05
  falling
• 5:06
  behind
• 5:06
  if
• 5:06
  I have to
• 5:06
  go to
• 5:07
  Philadelphia
• 5:08
  or wherever
• 5:09
  I have
• 5:09
  to go
• 5:09
  for
• 5:09
  doctor's.
• 5:10
  So
• 5:10
  I feel like
• 5:11
  the high
• 5:11
  school
• 5:12
  experience
• 5:12
  has gotten
• 5:12
  ten times
• 5:13
  better
• 5:13
  since
• 5:14
  switching
• 5:14
  to
• 5:14
  homeschool.
• 5:15
  The friends
• 5:15
  in the
• 5:16
  atmosphere
• 5:16
  are still
• 5:17
  just
• 5:17
  as amazing.
• 5:18
  I love my
• 5:18
  teachers
• 5:18
  as well.
• 5:20
  Okay,
• 5:20
  I love
• 5:20
  that.
• 5:21
  What helps
• 5:21
  you, as
• 5:22
  you are
• 5:22
  more aware,
• 5:23
  obviously,
• 5:23
  of your
• 5:24
  diagnosis
• 5:24
  and kind of
• 5:24
  the weight
• 5:25
  that that
• 5:25
  carries
• 5:25
  in your life,
• 5:26
  what helps
• 5:27
  you as
• 5:27
  you go
• 5:27
  into
• 5:27
  doctor's
• 5:28
  appointments
• 5:28
  for
• 5:28
  your eye
• 5:29
  for, for
• 5:30
  scans?
• 5:30
  do
• 5:30
  you have
• 5:31
  more of
• 5:31
  an
• 5:31
  awareness
• 5:32
  about like,
• 5:32
  kind of
• 5:32
  what,
• 5:33
  what can
• 5:33
  shift?
• 5:34
  And, and
• 5:35
  I guess
• 5:35
  maybe my
• 5:36
  other
• 5:36
  question
• 5:36
  would be
• 5:37
  has this
• 5:37
  affected,
• 5:38
  your
• 5:38
  general
• 5:38
  health
• 5:38
  in any
• 5:39
  other ways?
• 5:39
  I feel like
• 5:40
  my general
• 5:41
  health
• 5:41
  has gotten
• 5:42
  ten times
• 5:43
  better.
• 5:43
  I'm in
• 5:44
  better
• 5:44
  shape
• 5:44
  than I was
• 5:45
  in 2018.
• 5:46
  it's played
• 5:47
  a part
• 5:47
  in me
• 5:47
  getting
• 5:47
  healthier
• 5:48
  and staying
• 5:48
  healthier.
• 5:49
  the mindset
• 5:50
  going into
• 5:50
  doctor's
• 5:51
  appointments,
• 5:52
  because
• 5:52
  it is scary
• 5:54
  to go to
• 5:54
  doctor's
• 5:55
  appointments.
• 5:55
  You
• 5:55
  never know
• 5:55
  if
• 5:56
  something's
• 5:56
  going to
• 5:56
  change.
• 5:57
  So
• 5:57
  definitely
• 5:58
  praying and
• 5:59
  religion
• 5:59
  like that.
• 6:00
  And having
• 6:01
  the, backup
• 6:01
  of family
• 6:02
  and friends
• 6:02
  and the
• 6:02
  support of
• 6:03
  all of that
• 6:04
  really
• 6:04
  helps
• 6:04
  get
• 6:05
  through the day.
• 6:05
  I love
• 6:06
  that.
• 6:06
  Presley,
• 6:07
  seriously,
• 6:07
  it's been
• 6:07
  so amazing
• 6:08
  just seeing
• 6:09
  how much
• 6:09
  you've
• 6:09
  grown
• 6:10
  as a
• 6:10
  person.
• 6:10
  and, and I
• 6:11
  love seeing
• 6:11
  what you're
• 6:12
  doing.
• 6:12
  and
• 6:12
  I wanted
• 6:12
  to throw
• 6:13
  in one
• 6:13
  extra
• 6:13
  question
• 6:14
  you mentioned
• 6:14
  that
• 6:14
  you feel
• 6:15
  really
• 6:15
  strongly
• 6:16
  about
• 6:16
  spreading
• 6:16
  awareness
• 6:17
  now
• 6:17
  about your
• 6:17
  diagnosis.
• 6:18
  So can you
• 6:19
  maybe
• 6:19
  tell us
• 6:19
  the top
• 6:20
  three
• 6:20
  things
• 6:21
  that as a
• 6:21
  high
• 6:21
  schooler,
• 6:21
  you're
• 6:22
  currently
• 6:22
  doing
• 6:23
  to help
• 6:23
  spread
• 6:24
  awareness
• 6:24
  about
• 6:24
  ocular
• 6:25
  melanoma
• 6:25
  in
• 6:26
  your way?
• 6:26
  going on
• 6:27
  social
• 6:27
  media
• 6:28
  and saying
• 6:29
  that
• 6:29
  this is
• 6:30
  a cancer
• 6:30
  that is
• 6:30
  real.
• 6:31
  It's not
• 6:31
  a fake thing.
• 6:32
  And it's
• 6:32
  it's super
• 6:33
  rare.
• 6:33
  So to
• 6:34
  spread
• 6:34
  awareness
• 6:34
  that way
• 6:35
  on social
• 6:36
  media
• 6:36
  and
• 6:36
  platforms
• 6:37
  like that,
• 6:37
  and then
• 6:37
  in sports,
• 6:38
  I have
• 6:39
  armbands
• 6:39
  and cleats
• 6:40
  and stuff
• 6:40
  that has
• 6:41
  the ocular
• 6:41
  melanoma
• 6:42
  and
• 6:42
  the Cure on
• 6:42
  Sight logo
• 6:43
  to spread
• 6:44
  awareness.
• 6:44
  When I'm on
• 6:44
  the field
• 6:45
  talking
• 6:45
  to people
• 6:46
  and in
• 6:47
  school
• 6:47
  as well.
• 6:48
  I do a
• 6:49
  lot of work
• 6:49
  in school
• 6:50
  spreading
• 6:50
  the
• 6:50
  awareness
• 6:51
  for ocular
• 6:52
  melanoma
• 6:52
  and talking
• 6:53
  to people
• 6:53
  about it
• 6:54
  and in
• 6:54
  doctor's
• 6:55
  office
• 6:55
  So
• 6:55
  spreading
• 6:56
  the
• 6:56
  awareness
• 6:56
  in every
• 6:57
  category.
• 6:57
  you're
• 6:58
  doing such
• 6:58
  an amazing
• 6:58
  job.
• 6:59
  and I
• 6:59
  look
• 6:59
  forward to
• 7:00
  seeing,
• 7:00
  like,
• 7:00
  how you
• 7:01
  continue
• 7:01
  to thrive,
• 7:02
  as you
• 7:02
  go into
• 7:03
  your senior
• 7:03
  year,
• 7:03
  I believe
• 7:04
  is
• 7:04
  coming up
• 7:04
  next,
• 7:05
  right.
• 7:05
  that's
• 7:05
  going to be
• 7:05
  super
• 7:06
  exciting.
• 7:06
  And I just
• 7:07
  I'm excited
• 7:07
  to see
• 7:08
  how you do
• 7:08
  with
• 7:08
  as your
• 7:09
  baseball
• 7:09
  career,
• 7:10
  you know,
• 7:10
  continues
• 7:10
  in
• 7:10
  high school
• 7:11
  and maybe
• 7:11
  beyond.
• 7:12
  I hope it
• 7:12
  continues
• 7:13
  beyond
• 7:13
  come one.
• 7:13
  Let's like,
• 7:14
  put
• 7:14
  that out
• 7:14
  in the universe
• 7:14
  if you want
• 7:15
  that. okay.
• 7:15
  So
• 7:16
  Stephanie,
• 7:16
  we're going
• 7:16
  to move
• 7:16
  over
• 7:17
  to you.
• 7:17
  We're going
• 7:17
  to talk
• 7:17
  a little
• 7:18
  bit more
• 7:18
  about like
• 7:18
  the
• 7:18
  parental
• 7:19
  side of
• 7:19
  things.
• 7:20
  obviously,
• 7:20
  you had
• 7:21
  a 13
• 7:21
  year old
• 7:21
  when he was
• 7:22
  diagnosed
• 7:23
  and he's
• 7:23
  now 17,
• 7:24
  how
• 7:25
  this has
• 7:25
  changed
• 7:26
  for you
• 7:27
  because
• 7:27
  I know
• 7:28
  when
• 7:28
  Presley
• 7:28
  was first
• 7:29
  diagnosed,
• 7:29
  you guys
• 7:30
  didn't
• 7:30
  really,
• 7:30
  like,
• 7:30
  flood him
• 7:31
  with
• 7:31
  information.
• 7:32
  you
• 7:32
  let it be
• 7:33
  a little
• 7:33
  bit more
• 7:34
  vague
• 7:34
  for a
• 7:35
  little
• 7:35
  while.
• 7:35
  And and
• 7:36
  you would
• 7:36
  tell him
• 7:37
  what
• 7:37
  he needed
• 7:37
  to know,
• 7:37
  not
• 7:38
  everything
• 7:39
  or not
• 7:39
  all
• 7:39
  the scary
• 7:40
  statistics,
• 7:40
  not
• 7:40
  all of the,
• 7:41
  you know,
• 7:42
  not all of
• 7:42
  the details.
• 7:43
  so as
• 7:43
  he started
• 7:43
  asking
• 7:44
  more
• 7:44
  questions
• 7:45
  and wanting
• 7:45
  to learn
• 7:46
  more,
• 7:46
  what's that
• 7:46
  been like
• 7:47
  for you
• 7:47
  as a parent?
• 7:48
  So
• 7:49
  I would say
• 7:49
  for me,
• 7:49
  it's
• 7:49
  kind of
• 7:50
  the reverse
• 7:51
  than what
• 7:51
  he
• 7:51
  described.
• 7:52
  I think
• 7:52
  it's been
• 7:52
  much harder
• 7:53
  as he's
• 7:54
  gotten
• 7:54
  older.
• 7:54
  I think
• 7:55
  that
• 7:55
  there was
• 7:56
  a bit
• 7:56
  of, peace
• 7:57
  or relief
• 7:58
  for us
• 7:58
  that he
• 7:59
  didn't
• 8:00
  carry that
• 8:01
  heavy
• 8:01
  burden
• 8:01
  when he was
• 8:02
  13, 14, 15.
• 8:04
  So you know
• 8:04
  what I
• 8:05
  mean?
• 8:05
  I feel like
• 8:06
  it's a lot
• 8:07
  to carry.
• 8:08
  And we all
• 8:08
  decided
• 8:09
  from his
• 8:10
  immediate
• 8:11
  family
• 8:11
  to our
• 8:11
  extended
• 8:12
  family,
• 8:12
  who had
• 8:13
  obviously
• 8:13
  looked
• 8:14
  into what
• 8:15
  ocular
• 8:15
  melanoma
• 8:16
  was,
• 8:16
  the
• 8:17
  statistics
• 8:17
  that
• 8:18
  that just
• 8:18
  was not
• 8:18
  something
• 8:19
  that we
• 8:19
  really focused
• 8:20
  on.
• 8:20
  And we
• 8:21
  we did.
• 8:21
  We
• 8:21
  purposely
• 8:22
  kept it
• 8:22
  vague
• 8:23
  and we
• 8:23
  kept it
• 8:24
  really
• 8:24
  positive.
• 8:24
  And
• 8:24
  he helped in
• 8:25
  that.
• 8:25
  I think
• 8:26
  I said
• 8:26
  the
• 8:26
  last time
• 8:27
  that one
• 8:28
  of the
• 8:28
  blessings
• 8:29
  I'm super
• 8:29
  thankful
• 8:30
  for is
• 8:30
  that kids
• 8:31
  are really
• 8:31
  resilient
• 8:32
  and kids,
• 8:32
  you know,
• 8:33
  they
• 8:33
  believe
• 8:33
  they're
• 8:34
  superheroes
• 8:34
  and can
• 8:35
  make it
• 8:35
  through
• 8:35
  everything.
• 8:36
  And that's
• 8:36
  amazing.
• 8:37
  And I
• 8:37
  wish that
• 8:38
  would
• 8:38
  always stay
• 8:39
  for
• 8:39
  everybody.
• 8:40
  And as
• 8:41
  he has
• 8:41
  gotten
• 8:41
  older
• 8:42
  for on
• 8:43
  my
• 8:43
  perspective,
• 8:44
  one of the reasons,
• 8:45
  we were
• 8:45
  so apprehensive
• 8:46
  to give him
• 8:46
  a phone,
• 8:47
  it wasn't
• 8:47
  because
• 8:48
  he's not
• 8:48
  responsible.
• 8:49
  He's a very
• 8:49
  responsible
• 8:50
  person.
• 8:50
  It was
• 8:51
  because
• 8:52
  the phone
• 8:52
  opens up
• 8:53
  social
• 8:54
  media.
• 8:54
  It opens up
• 8:55
  these
• 8:55
  different
• 8:56
  things
• 8:56
  that,
• 8:57
  you know,
• 8:57
  we knew
• 8:58
  it was
• 8:58
  time.
• 8:58
  He didn't
• 8:58
  have
• 8:59
  a phone
• 8:59
  till
• 8:59
  he was 14,
• 9:00
  and
• 9:00
  even at 14,
• 9:01
  he only
• 9:02
  was allowed
• 9:03
  to have
• 9:03
  Instagram.
• 9:04
  He didn't
• 9:04
  have
• 9:04
  anything
• 9:04
  else.
• 9:05
  So
• 9:05
  it was just
• 9:06
  within this
• 9:06
  last year,
• 9:07
  he was allowed
• 9:07
  to get
• 9:08
  a Snapchat
• 9:08
  and the
• 9:09
  YouTube
• 9:09
  to do
• 9:10
  some of
• 9:10
  his videos
• 9:11
  and the
• 9:11
  Polaroid
• 9:11
  project,
• 9:12
  and I
• 9:12
  didn't love
• 9:13
  the idea
• 9:13
  of that.
• 9:13
  I still
• 9:14
  sometimes
• 9:15
  don't love
• 9:15
  the idea
• 9:16
  of that
• 9:16
  he was
• 9:17
  able to
• 9:18
  research
• 9:18
  his time,
• 9:18
  and I just
• 9:19
  worried
• 9:19
  that you
• 9:20
  can get
• 9:21
  caught in
• 9:21
  that loop.
• 9:22
  You can get
• 9:22
  caught in,
• 9:23
  you know,
• 9:23
  everything
• 9:24
  that
• 9:24
  you read.
• 9:25
  And I think
• 9:25
  that
• 9:25
  he's done
• 9:26
  an amazing
• 9:26
  job.
• 9:26
  And I
• 9:27
  probably
• 9:28
  need to
• 9:28
  learn
• 9:28
  from him
• 9:29
  that
• 9:29
  he's done
• 9:30
  an amazing
• 9:30
  job at
• 9:31
  kind of
• 9:31
  keeping
• 9:31
  that in
• 9:32
  check
• 9:32
  and
• 9:32
  understanding.
• 9:34
  And I think
• 9:34
  on
• 9:34
  the other
• 9:34
  side of
• 9:35
  that, too,
• 9:35
  we've had
• 9:36
  to answer
• 9:36
  a lot
• 9:36
  of
• 9:37
  questions.
• 9:37
  People
• 9:38
  around us,
• 9:38
  loved ones,
• 9:39
  close
• 9:40
  family
• 9:40
  members
• 9:41
  maybe
• 9:41
  looked it
• 9:42
  up
• 9:42
  for a second,
• 9:42
  but
• 9:43
  they always
• 9:43
  seem very
• 9:43
  confused.
• 9:44
  We often
• 9:45
  get
• 9:45
  the question
• 9:45
  like,
• 9:45
  why is it
• 9:46
  that
• 9:46
  Presley
• 9:46
  rang
• 9:46
  the bell?
• 9:47
  Isn't
• 9:47
  Presley in
• 9:48
  remission?
• 9:48
  Because the
• 9:50
  childhood
• 9:50
  cancer
• 9:50
  cases
• 9:51
  around us,
• 9:52
  that
• 9:52
  our schools
• 9:53
  are
• 9:53
  unfortunately
• 9:53
  so familiar
• 9:54
  with our
• 9:55
  kids who,
• 9:56
  you know,
• 9:56
  go through
• 9:57
  a period
• 9:57
  of time
• 9:57
  of
• 9:57
  treatment
• 9:58
  and thank
• 9:58
  goodness,
• 9:59
  come out
• 10:00
  the other
• 10:00
  side and
• 10:01
  ring
• 10:01
  the bell
• 10:02
  and you
• 10:02
  have these
• 10:02
  celebrations.
• 10:03
  That's what
• 10:03
  our
• 10:04
  our school
• 10:05
  and
• 10:05
  our network
• 10:05
  of people
• 10:06
  were used
• 10:06
  to seeing.
• 10:07
  So
• 10:07
  they don't
• 10:07
  really
• 10:08
  understand
• 10:08
  it.
• 10:08
  They don't
• 10:09
  understand
• 10:09
  why he's
• 10:09
  always
• 10:10
  getting
• 10:10
  scanned.
• 10:11
  and we've
• 10:11
  heard
• 10:11
  comments
• 10:12
  from
• 10:12
  I mean,
• 10:12
  I heard
• 10:13
  somebody
• 10:13
  say to
• 10:14
  a friend
• 10:14
  of a friend
• 10:15
  like,
• 10:15
  why is she
• 10:16
  still
• 10:16
  continuing
• 10:17
  to post?
• 10:17
  And I
• 10:18
  don't
• 10:18
  think that
• 10:18
  they meant
• 10:19
  it mean
• 10:19
  spirited.
• 10:20
  I think
• 10:20
  they just
• 10:20
  really
• 10:21
  didn't
• 10:21
  understand
• 10:22
  that we're
• 10:22
  still
• 10:23
  getting
• 10:23
  scanned
• 10:23
  every
• 10:24
  three
• 10:24
  months.
• 10:24
  We're
• 10:25
  still
• 10:25
  seeing
• 10:25
  his ocular
• 10:26
  oncologist
• 10:27
  every four
• 10:28
  months.
• 10:28
  We still
• 10:28
  travel
• 10:29
  to
• 10:29
  Philadelphia.
• 10:29
  This isn't
• 10:30
  a, I tell
• 10:31
  people were
• 10:31
  in this
• 10:31
  long
• 10:32
  marathon.
• 10:32
  It was
• 10:32
  never a
• 10:33
  sprint.
• 10:33
  And,
• 10:34
  you know,
• 10:34
  I think
• 10:35
  a lot of
• 10:35
  people just
• 10:36
  don't
• 10:36
  understand
• 10:36
  that.
• 10:37
  I think
• 10:37
  that's such
• 10:37
  an
• 10:37
  important
• 10:38
  point
• 10:38
  to make
• 10:39
  is just
• 10:39
  that, that
• 10:40
  lack of
• 10:40
  awareness
• 10:41
  in the
• 10:41
  general
• 10:42
  public
• 10:42
  about how
• 10:43
  this
• 10:43
  diagnosis
• 10:44
  isn't
• 10:44
  something
• 10:44
  that,
• 10:44
  you know,
• 10:44
  you ring
• 10:45
  the bell
• 10:45
  at the end
• 10:46
  of,
• 10:47
  you know, a
• 10:47
  year of
• 10:47
  treatment
• 10:48
  or the
• 10:48
  week
• 10:48
  of plaque.
• 10:49
  I mean,
• 10:50
  let me
• 10:50
  be honest.
• 10:50
  I think
• 10:51
  we could
• 10:51
  ring the
• 10:51
  bell.
• 10:52
  We could
• 10:52
  ring
• 10:52
  the bell
• 10:52
  and be
• 10:53
  like, yeah,
• 10:53
  we finish this part.
• 10:54
  But like
• 10:54
  you said,
• 10:54
  like it's
• 10:55
  it's like
• 10:55
  a phase
• 10:56
  in the
• 10:56
  marathon.
• 10:57
  And, we're
• 10:57
  really,
• 10:58
  we're
• 10:58
  really
• 10:58
  all in this
• 10:59
  as like,
• 10:59
  I mean,
• 11:00
  it's
• 11:00
  kind of
• 11:00
  like a
• 11:01
  lifelong
• 11:01
  journey of
• 11:02
  figuring
• 11:02
  out how to
• 11:03
  navigate
• 11:03
  this
• 11:03
  I've talked
• 11:04
  to other
• 11:04
  people
• 11:04
  with
• 11:05
  different
• 11:05
  cancers
• 11:05
  and, cancer
• 11:06
  does still
• 11:07
  affect
• 11:07
  their
• 11:07
  everyday
• 11:07
  life,
• 11:08
  whether
• 11:08
  they've
• 11:08
  been in
• 11:08
  treatment
• 11:09
  or and
• 11:10
  they finish
• 11:10
  and they
• 11:10
  ring
• 11:10
  the bell
• 11:11
  and they're
• 11:11
  considered
• 11:12
  in
• 11:12
  remission
• 11:12
  or they're
• 11:14
  still
• 11:14
  actively
• 11:14
  fighting,
• 11:15
  like cancer
• 11:16
  is always
• 11:16
  going to be
• 11:16
  a part of
• 11:17
  people's
• 11:17
  lives
• 11:18
  when
• 11:18
  they've
• 11:18
  been
• 11:18
  diagnosed.
• 11:19
  It's just
• 11:19
  a matter
• 11:19
  of How
• 11:20
  much?
• 11:20
  space does
• 11:21
  it take up?
• 11:22
  And like
• 11:22
  you said,
• 11:22
  with with
• 11:23
  doctors
• 11:23
  appointments
• 11:23
  every 3 to
• 11:24
  4 months,
• 11:24
  like it
• 11:24
  takes up
• 11:25
  a lot of space.
• 11:25
  It takes up
• 11:26
  a lot of
• 11:26
  mental energy.
• 11:27
  It takes up
• 11:27
  a lot of,
• 11:28
  emotional energy.
• 11:29
  and that's
• 11:29
  something
• 11:30
  that,
• 11:30
  you know,
• 11:30
  as a
• 11:30
  parent,
• 11:31
  you carry
• 11:32
  and
• 11:32
  you also
• 11:33
  have your
• 11:34
  now older
• 11:34
  teenager
• 11:35
  who's
• 11:35
  carrying
• 11:35
  it too,
• 11:36
  like you
• 11:36
  said,
• 11:36
  carrying it
• 11:37
  in
• 11:37
  different
• 11:37
  ways,
• 11:37
  but it's
• 11:37
  still
• 11:38
  something
• 11:38
  that you
• 11:39
  continue
• 11:39
  to carry
• 11:40
  and carry
• 11:40
  at a much
• 11:40
  higher
• 11:41
  frequency
• 11:41
  than most
• 11:42
  people
• 11:42
  expect.
• 11:42
  So I think
• 11:43
  that's
• 11:43
  that's
• 11:44
  a really
• 11:44
  good point
• 11:44
  to just
• 11:45
  kind of
• 11:45
  bring
• 11:45
  awareness
• 11:45
  to that.
• 11:46
  as a
• 11:46
  parent,
• 11:47
  as
• 11:47
  you've gone
• 11:48
  through
• 11:48
  this
• 11:48
  diagnosis,
• 11:49
  what
• 11:49
  have been
• 11:49
  some of
• 11:50
  the things
• 11:50
  that have
• 11:50
  been
• 11:50
  helpful
• 11:51
  and
• 11:51
  supportive
• 11:52
  for you,
• 11:52
  whether
• 11:52
  it's been
• 11:53
  your
• 11:53
  family,
• 11:53
  your friends?
• 11:54
  what are
• 11:54
  kind of
• 11:54
  the best
• 11:55
  parental
• 11:55
  supports
• 11:55
  that
• 11:56
  you've had?
• 11:58
  Both
• 11:58
  Presley
• 11:58
  and I,
• 11:58
  we do.
• 11:59
  We have
• 11:59
  the most
• 11:59
  amazing
• 12:00
  family,
• 12:01
  who
• 12:01
  literally
• 12:01
  from right
• 12:02
  when he was
• 12:02
  diagnosed,
• 12:03
  we were driving
• 12:04
  to
• 12:04
  Philadelphia,
• 12:05
  showed up
• 12:05
  at our
• 12:05
  hotel,
• 12:06
  and here
• 12:06
  came all
• 12:07
  three of
• 12:07
  my siblings
• 12:08
  from
• 12:08
  different
• 12:09
  parts
• 12:09
  of the
• 12:09
  country,
• 12:09
  showed up
• 12:10
  at the hotel
• 12:10
  and were
• 12:11
  there.
• 12:11
  We had
• 12:12
  people
• 12:12
  move in
• 12:12
  to take
• 12:13
  care of our
• 12:13
  other
• 12:13
  children.
• 12:14
  You know,
• 12:15
  we have an
• 12:15
  amazing
• 12:15
  family
• 12:16
  and
• 12:16
  they have
• 12:17
  done
• 12:17
  their due
• 12:17
  diligence.
• 12:18
  They all
• 12:19
  carry
• 12:19
  that
• 12:19
  weight.
• 12:19
  They know
• 12:20
  all about
• 12:21
  ocular
• 12:21
  melanoma.
• 12:22
  They are,
• 12:23
  all over.
• 12:23
  You know,
• 12:23
  they're
• 12:24
  very
• 12:24
  involved
• 12:25
  with
• 12:25
  the websites,
• 12:26
  are very
• 12:26
  involved
• 12:27
  in, funding
• 12:28
  and all
• 12:28
  these
• 12:28
  different
• 12:29
  pieces.
• 12:29
  So we're
• 12:30
  super,
• 12:31
  super lucky
• 12:32
  there.
• 12:32
  And I would
• 12:33
  really say
• 12:33
  the
• 12:33
  different
• 12:34
  that
• 12:34
  when we
• 12:35
  when he was
• 12:35
  first
• 12:35
  diagnosed
• 12:36
  literally
• 12:37
  at Doctor
• 12:37
  Bergson's
• 12:37
  office,
• 12:38
  a lady
• 12:38
  handed me
• 12:39
  a card.
• 12:40
  And on
• 12:40
  the back of
• 12:40
  it was
• 12:41
  the
• 12:41
  Facebook
• 12:42
  ocular
• 12:42
  melanoma
• 12:43
  page.
• 12:44
  And, I'm
• 12:44
  forever
• 12:45
  thankful
• 12:46
  for that
• 12:46
  card.
• 12:47
  Through
• 12:47
  that card
• 12:48
  we met.
• 12:49
  I mean,
• 12:49
  too many
• 12:50
  people
• 12:50
  to name.
• 12:50
  But,
• 12:51
  you know,
• 12:51
  that's how
• 12:52
  we learned
• 12:52
  about you.
• 12:52
  That's how
• 12:53
  we learned
• 12:53
  about so
• 12:53
  many people
• 12:54
  along
• 12:54
  the way
• 12:55
  who really,
• 12:56
  from the
• 12:56
  start,
• 12:56
  held
• 12:57
  my hand
• 12:57
  and said,
• 12:57
  go here,
• 12:58
  go here,
• 12:59
  don't
• 12:59
  go here.
• 13:00
  Don't
• 13:00
  do this.
• 13:01
  And then
• 13:01
  I was
• 13:01
  able
• 13:01
  to pass
• 13:02
  that along,
• 13:02
  because
• 13:03
  locally
• 13:04
  we didn't
• 13:04
  have any
• 13:05
  of that.
• 13:05
  And,
• 13:06
  his team
• 13:06
  of
• 13:07
  pediatric
• 13:07
  oncologist
• 13:08
  here are
• 13:08
  amazing.
• 13:09
  They are amazing.
• 13:10
  But
• 13:11
  they were
• 13:11
  very clear.
• 13:12
  They were very clear
• 13:13
  when
• 13:13
  we, our
• 13:14
  first
• 13:14
  appointment,
• 13:15
  none of them
• 13:15
  had ever
• 13:16
  heard
• 13:16
  of ocular
• 13:16
  melanoma.
• 13:17
  They had never
• 13:17
  treated
• 13:18
  innocuous
• 13:18
  melanoma
• 13:18
  patient.
• 13:19
  I think
• 13:19
  they
• 13:19
  had had
• 13:20
  one,
• 13:21
  retinoblastoma.
• 13:22
  Blastoma
• 13:23
  my saying
• 13:23
  that
• 13:23
  correctly.
• 13:24
  maybe one
• 13:25
  that had
• 13:25
  come
• 13:25
  through the
• 13:26
  entire
• 13:26
  practice
• 13:27
  and
• 13:27
  all these years.
• 13:28
  So
• 13:28
  they were
• 13:28
  learning
• 13:29
  along
• 13:29
  with us.
• 13:30
  So
• 13:31
  the way it works
• 13:31
  for Presley
• 13:32
  is when
• 13:33
  he goes
• 13:33
  and sees
• 13:34
  whether
• 13:34
  we're
• 13:34
  seeing
• 13:34
  Doctor
• 13:35
  Shields
• 13:35
  in
• 13:35
  Philadelphia
• 13:36
  or when
• 13:36
  we see
• 13:37
  Doctor
• 13:37
  Bergstrom,
• 13:38
  and we've
• 13:38
  got Doctor
• 13:39
  Sal
• 13:39
  involved,
• 13:39
  everyone
• 13:40
  develops
• 13:41
  this
• 13:41
  new plan
• 13:42
  that gets
• 13:42
  adjusted
• 13:43
  every 3 to
• 13:43
  6 months,
• 13:44
  but then
• 13:44
  go to
• 13:45
  the oncologist
• 13:45
  here
• 13:46
  and
• 13:46
  they kind
• 13:47
  of follow
• 13:47
  suit.
• 13:48
  so
• 13:48
  we've had
• 13:48
  amazing
• 13:49
  doctors,
• 13:49
  but that
• 13:49
  that can be
• 13:50
  frustrating
• 13:50
  too,
• 13:51
  because
• 13:51
  I think
• 13:51
  we often
• 13:52
  feel like
• 13:53
  guinea
• 13:53
  pigs.
• 13:54
  You know,
• 13:54
  we often
• 13:55
  feel like,
• 13:56
  God,
• 13:56
  are they going
• 13:56
  to are they
• 13:57
  going
• 13:57
  to know
• 13:57
  what to
• 13:57
  look for?
• 13:58
  You know,
• 13:59
  when I read
• 13:59
  your stuff,
• 14:00
  you know,
• 14:01
  are
• 14:01
  they going to
• 14:01
  know are
• 14:02
  these
• 14:02
  doctors
• 14:02
  that are
• 14:03
  local
• 14:03
  that aren't
• 14:03
  as familiar
• 14:04
  with this?
• 14:05
  Are they going
• 14:05
  to know
• 14:06
  what to
• 14:06
  look for?
• 14:06
  Are
• 14:07
  we going
• 14:07
  to know,
• 14:08
  you know,
• 14:08
  that those
• 14:09
  sorts of
• 14:09
  things,
• 14:09
  are what
• 14:10
  we've had
• 14:10
  a lot
• 14:10
  of support
• 14:11
  with what?
• 14:11
  What I
• 14:12
  as the mom,
• 14:13
  because
• 14:13
  that's
• 14:13
  what I
• 14:14
  think
• 14:14
  about.
• 14:15
  And I have
• 14:15
  a family
• 14:16
  that,
• 14:16
  you know,
• 14:16
  when
• 14:17
  it gets
• 14:17
  tough
• 14:17
  or when
• 14:18
  those
• 14:18
  things
• 14:18
  creep
• 14:18
  in
• 14:19
  typically
• 14:19
  around
• 14:20
  scan time,
• 14:20
  as I'm sure
• 14:21
  you know,
• 14:22
  at
• 14:22
  this point,
• 14:22
  I feel like
• 14:23
  my sisters,
• 14:24
  I don't
• 14:24
  even have
• 14:24
  to.
• 14:25
  Its on
• 14:25
  everyone's
• 14:26
  calendars,
• 14:26
  but it's
• 14:27
  gotten to
• 14:28
  the point
• 14:28
  where
• 14:28
  they're
• 14:28
  just like
• 14:29
  me.
• 14:29
  I can tell
• 14:30
  most of
• 14:31
  the time
• 14:31
  I'm
• 14:31
  really good
• 14:32
  about my
• 14:32
  schedule,
• 14:32
  but
• 14:32
  about a week
• 14:33
  before
• 14:34
  the scan
• 14:34
  week comes,
• 14:35
  I can tell,
• 14:36
  I can
• 14:36
  tell I'm
• 14:36
  getting
• 14:36
  a little
• 14:37
  bit on
• 14:37
  edge,
• 14:37
  or
• 14:37
  I can tell
• 14:38
  there's
• 14:38
  just a
• 14:39
  different
• 14:39
  vibe that I
• 14:40
  normally
• 14:41
  have,
• 14:41
  and my
• 14:42
  sisters
• 14:42
  know
• 14:42
  immediately,
• 14:43
  and I
• 14:43
  notice
• 14:44
  that text
• 14:44
  messages
• 14:45
  start
• 14:45
  coming
• 14:45
  more
• 14:45
  frequently.
• 14:46
  I notice
• 14:47
  things
• 14:47
  with
• 14:47
  Presley,
• 14:47
  like we all
• 14:48
  just rally
• 14:49
  during
• 14:49
  that time,
• 14:50
  so we're so
• 14:50
  lucky
• 14:50
  there.
• 14:51
  yeah,
• 14:51
  that's
• 14:52
  my answer.
• 14:52
  let's talk
• 14:53
  about
• 14:53
  the flip
• 14:53
  side of
• 14:53
  that.
• 14:54
  obviously,
• 14:54
  you guys
• 14:55
  have been
• 14:55
  on this
• 14:55
  journey
• 14:56
  for almost
• 14:56
  four years
• 14:57
  in the
• 14:57
  pediatric
• 14:58
  world,
• 14:58
  and like,
• 14:58
  I mean,
• 14:59
  smack dab
• 14:59
  in the
• 15:00
  middle
• 15:00
  of it,
• 15:00
  it's
• 15:00
  probably
• 15:01
  a totally
• 15:01
  different
• 15:01
  thing.
• 15:02
  And i know
• 15:02
  we have,
• 15:02
  Arjun
• 15:03
  across
• 15:03
  the world
• 15:04
  in the UK
• 15:04
  who he was
• 15:05
  diagnosed
• 15:05
  at birth.
• 15:06
  And I
• 15:06
  can't even
• 15:06
  fathom
• 15:07
  that.
• 15:07
  Like,
• 15:07
  that's
• 15:07
  absolutely
• 15:08
  insane
• 15:08
  to me.
• 15:09
  But like,
• 15:10
  I mean,
• 15:10
  Presley
• 15:10
  was
• 15:10
  diagnosed
• 15:11
  smack dab
• 15:11
  in the
• 15:11
  middle of
• 15:12
  childhood.
• 15:12
  what
• 15:13
  kinds of
• 15:13
  parental
• 15:13
  support?
• 15:14
  and just
• 15:15
  general,
• 15:16
  I guess.
• 15:16
  What
• 15:16
  do you feel
• 15:17
  like
• 15:17
  you have
• 15:17
  been
• 15:18
  missing
• 15:18
  where
• 15:18
  you wish
• 15:19
  you would
• 15:19
  had as
• 15:20
  you kind of
• 15:20
  went
• 15:20
  through
• 15:21
  this
• 15:21
  earlier on
• 15:22
  and, or
• 15:23
  or what
• 15:23
  would you
• 15:23
  advise
• 15:24
  other
• 15:24
  parents
• 15:25
  who are
• 15:25
  kind of
• 15:25
  smack dab
• 15:26
  in the
• 15:26
  middle
• 15:26
  of this?
• 15:27
  Like,
• 15:27
  what would you
• 15:27
  tell them
• 15:28
  to pay
• 15:28
  attention
• 15:28
  to, to
• 15:29
  kind of
• 15:29
  like go
• 15:30
  those
• 15:30
  kinds of
• 15:30
  things?
• 15:31
  I would say
• 15:32
  with
• 15:32
  regards
• 15:32
  to
• 15:33
  the care
• 15:34
  side of it,
• 15:34
  sometimes
• 15:35
  I feel
• 15:35
  like
• 15:35
  there's a
• 15:36
  lot of
• 15:36
  things
• 15:36
  missing
• 15:37
  if
• 15:37
  we're not.
• 15:38
  I feel like
• 15:38
  when we're
• 15:39
  in
• 15:39
  Philadelphia
• 15:39
  here,
• 15:40
  when we're
• 15:40
  in this
• 15:41
  community,
• 15:41
  I feel very
• 15:42
  well
• 15:43
  supported.
• 15:43
  I feel that
• 15:44
  the people
• 15:44
  that we're
• 15:45
  talking
• 15:45
  to, our
• 15:45
  very well
• 15:46
  educated,
• 15:46
  and because
• 15:47
  they're so
• 15:47
  well
• 15:47
  educated
• 15:48
  about
• 15:48
  ocular
• 15:48
  melanoma,
• 15:49
  they're
• 15:49
  empathetic
• 15:50
  about
• 15:50
  the things
• 15:50
  that
• 15:51
  they say
• 15:51
  and
• 15:52
  the things
• 15:52
  that
• 15:52
  they do.
• 15:53
  I feel like
• 15:53
  that's
• 15:54
  not always
• 15:54
  what we run
• 15:55
  into in our
• 15:56
  lives.
• 15:56
  and I don't
• 15:57
  think,
• 15:57
  again,
• 15:57
  it's done
• 15:58
  purposefully.
• 15:59
  I just
• 15:59
  feel like
• 16:00
  people
• 16:01
  don't
• 16:01
  understand.
• 16:01
  I think
• 16:02
  people
• 16:02
  in general
• 16:03
  don't
• 16:03
  understand
• 16:03
  a lot of,
• 16:04
  as you
• 16:04
  pointed
• 16:04
  out,
• 16:05
  a lot
• 16:05
  of what
• 16:05
  people
• 16:06
  go through
• 16:06
  when
• 16:07
  they're
• 16:07
  diagnosed
• 16:07
  with cancer
• 16:08
  or a
• 16:09
  terminal illness
• 16:10
  or any
• 16:10
  number
• 16:11
  of things.
• 16:11
  so
• 16:12
  I would say
• 16:12
  I
• 16:12
  definitely
• 16:13
  I feel like
• 16:15
  in our
• 16:15
  school,
• 16:16
  specifically
• 16:16
  in our
• 16:17
  school
• 16:17
  district,
• 16:18
  when he was
• 16:18
  diagnosed
• 16:19
  at the
• 16:19
  junior
• 16:20
  high level
• 16:20
  in seventh
• 16:21
  grade,
• 16:21
  we had the
• 16:22
  most
• 16:22
  amazing
• 16:23
  group
• 16:23
  of teachers
• 16:23
  at that time
• 16:24
  who really,
• 16:25
  really
• 16:25
  worked hard
• 16:26
  to learn
• 16:26
  about it
• 16:26
  and to make
• 16:27
  Presley
• 16:27
  feel
• 16:28
  included,
• 16:28
  because
• 16:28
  at that
• 16:29
  very same
• 16:29
  time,
• 16:30
  we had
• 16:30
  another
• 16:30
  child
• 16:30
  in his school
• 16:31
  that had
• 16:32
  been
• 16:32
  diagnosed
• 16:32
  with
• 16:33
  leukemia,
• 16:33
  and
• 16:33
  we had a
• 16:34
  little girl
• 16:34
  at the
• 16:35
  intermediate
• 16:35
  school,
• 16:36
  had been
• 16:36
  diagnosed
• 16:36
  with
• 16:37
  leukemia.
• 16:37
  So
• 16:37
  we had these
• 16:38
  three kids.
• 16:38
  And then
• 16:39
  about
• 16:39
  six months
• 16:39
  after
• 16:40
  Presley,
• 16:40
  another
• 16:41
  child
• 16:41
  all going
• 16:42
  through it,
• 16:42
  and
• 16:43
  the school
• 16:43
  did an
• 16:43
  amazing job
• 16:44
  of
• 16:44
  including
• 16:45
  Presley
• 16:46
  within
• 16:46
  that.
• 16:46
  As we've
• 16:47
  gotten
• 16:47
  older
• 16:48
  and
• 16:48
  the schools
• 16:49
  have gotten
• 16:50
  bigger
• 16:50
  and it's a
• 16:51
  bigger
• 16:51
  community,
• 16:52
  and
• 16:52
  it's not
• 16:52
  that same
• 16:53
  group of
• 16:53
  teachers
• 16:53
  that kind
• 16:54
  of
• 16:54
  remembers
• 16:54
  that.
• 16:55
  I feel like
• 16:56
  there
• 16:56
  is some,
• 16:57
  exclusion
• 16:58
  there.
• 16:58
  I
• 16:58
  definitely
• 16:59
  feel like
• 17:00
  we I saw
• 17:00
  something
• 17:01
  that
• 17:01
  other day
• 17:01
  and
• 17:01
  it wasn't
• 17:02
  specifically
• 17:02
  for
• 17:03
  our high
• 17:03
  school,
• 17:04
  but,
• 17:04
  you know,
• 17:04
  they were
• 17:04
  doing
• 17:05
  like
• 17:05
  pediatric
• 17:06
  cancer
• 17:06
  awareness,
• 17:07
  you know,
• 17:07
  cancer,
• 17:07
  childhood
• 17:08
  cancer
• 17:08
  awareness.
• 17:09
  And
• 17:09
  we weren't
• 17:09
  reached
• 17:10
  out to
• 17:10
  because
• 17:11
  I think it
• 17:11
  just
• 17:11
  kind of
• 17:11
  gets
• 17:12
  missed.
• 17:12
  And I
• 17:13
  feel
• 17:14
  like that
• 17:14
  to
• 17:15
  something
• 17:15
  as simple
• 17:16
  when we
• 17:17
  right
• 17:17
  after,
• 17:18
  I think
• 17:19
  it was 2
• 17:19
  or 3 days
• 17:20
  after
• 17:21
  Presley was
• 17:21
  originally
• 17:22
  diagnosed,
• 17:23
  I was
• 17:23
  sitting on
• 17:23
  my porch
• 17:24
  and
• 17:24
  I got a
• 17:24
  call from
• 17:25
  a make
• 17:25
  from
• 17:25
  somebody
• 17:26
  with
• 17:26
  Make-A-Wish,
• 17:27
  and I was
• 17:28
  livid.
• 17:29
  I was livid,
• 17:30
  and, of
• 17:31
  course,
• 17:31
  Presley
• 17:31
  being like
• 17:32
  a kid
• 17:32
  when I
• 17:32
  told him
• 17:33
  about this
• 17:33
  afterwards,
• 17:33
  he was
• 17:33
  like, what?
• 17:34
  Why
• 17:34
  wouldn't
• 17:35
  you have
• 17:35
  just said
• 17:35
  yes
• 17:36
  that day?
• 17:36
  But
• 17:37
  I was like,
• 17:37
  I don't want
• 17:38
  to be
• 17:38
  a parent
• 17:39
  that gets
• 17:39
  a call
• 17:40
  from
• 17:40
  Make-A-Wish.
• 17:41
  I don't want
• 17:42
  like,
• 17:42
  it was just
• 17:43
  too much.
• 17:43
  So then
• 17:44
  as we went
• 17:45
  through
• 17:45
  the
• 17:45
  treatment
• 17:45
  and again,
• 17:46
  you know
• 17:46
  how this
• 17:46
  goes,
• 17:47
  you know,
• 17:47
  for us
• 17:48
  what
• 17:48
  that look
• 17:48
  like was
• 17:48
  27 days
• 17:50
  in
• 17:50
  Philadelphia.
• 17:51
  You know,
• 17:51
  we and
• 17:52
  having
• 17:53
  our kids
• 17:53
  and
• 17:53
  everything
• 17:54
  it entailed
• 17:54
  for us,
• 17:55
  it was
• 17:55
  just crazy.
• 17:56
  This is
• 17:56
  crazy
• 17:57
  long five,
• 17:57
  six,
• 17:57
  eight
• 17:58
  months.
• 17:58
  So we were
• 17:59
  at like
• 17:59
  that six,
• 18:00
  eight, nine
• 18:01
  month lump.
• 18:02
  And I
• 18:02
  reached
• 18:03
  back out
• 18:03
  to them
• 18:04
  because at
• 18:05
  that point
• 18:05
  in time
• 18:06
  we were like,
• 18:06
  oh, we kind
• 18:07
  of caught
• 18:07
  our breath
• 18:07
  and I got a
• 18:08
  a letter
• 18:09
  back and
• 18:09
  they were
• 18:09
  like, well,
• 18:10
  we looked
• 18:11
  into ocular
• 18:12
  melanoma
• 18:12
  and
• 18:13
  he doesn't
• 18:13
  qualify.
• 18:14
  And I
• 18:14
  was like,
• 18:15
  really,
• 18:16
  really.
• 18:16
  And that's
• 18:17
  something
• 18:17
  like so
• 18:17
  minor.
• 18:18
  But it's
• 18:18
  those sorts
• 18:19
  of things.
• 18:19
  Like as
• 18:20
  the person
• 18:21
  in front
• 18:21
  row seeing
• 18:23
  what he
• 18:24
  what you
• 18:25
  as well as
• 18:26
  every
• 18:26
  other child
• 18:27
  I've had,
• 18:27
  you know,
• 18:28
  we go
• 18:28
  into
• 18:29
  clinic,
• 18:29
  we're
• 18:30
  literally
• 18:30
  their
• 18:31
  monthly.
• 18:32
  We go
• 18:32
  to these
• 18:32
  appointments
• 18:33
  every
• 18:33
  three months.
• 18:34
  We watch
• 18:35
  women
• 18:35
  holding
• 18:36
  their
• 18:36
  children
• 18:36
  with no hair
• 18:37
  and they're
• 18:37
  getting
• 18:38
  their
• 18:38
  chemo.
• 18:38
  We watch
• 18:39
  kids,
• 18:39
  we see
• 18:40
  the signs
• 18:40
  on the
• 18:40
  walls
• 18:41
  of kids
• 18:41
  that don't
• 18:42
  make it
• 18:42
  out
• 18:42
  of that.
• 18:42
  We see
• 18:43
  all of
• 18:43
  that.
• 18:44
  You know,
• 18:44
  that sucks
• 18:45
  for all
• 18:45
  of us.
• 18:45
  That sucks
• 18:46
  for you.
• 18:46
  That sucks
• 18:47
  for us.
• 18:47
  We watch,
• 18:48
  you know,
• 18:48
  even I
• 18:49
  like
• 18:49
  watching
• 18:50
  someone
• 18:50
  like you
• 18:51
  like, it's
• 18:51
  very hard
• 18:52
  to see
• 18:52
  your
• 18:53
  updates
• 18:53
  and think,
• 18:54
  that.
• 18:54
  You know
• 18:55
  what I
• 18:55
  mean? Dang.
• 18:56
  They're,
• 18:56
  you know,
• 18:56
  young.
• 18:57
  How is this
• 18:57
  happening?
• 18:58
  And
• 18:58
  see that
• 18:59
  there's
• 18:59
  little
• 18:59
  funding
• 19:00
  and see
• 19:00
  we'll go
• 19:01
  to
• 19:01
  something
• 19:01
  we try
• 19:02
  to attend
• 19:03
  as much
• 19:03
  as we can,
• 19:04
  and
• 19:04
  we'll go
• 19:04
  to.
• 19:05
  There was
• 19:05
  something
• 19:05
  not that
• 19:06
  long ago
• 19:06
  with
• 19:07
  regards to
• 19:07
  leukemia,
• 19:08
  and
• 19:08
  they had
• 19:09
  raised
• 19:09
  something
• 19:09
  crazy 30
• 19:10
  it was amazing
• 19:11
  and
• 19:12
  it was just
• 19:13
  incredible.
• 19:13
  And we both
• 19:13
  talked
• 19:14
  about it
• 19:14
  and I was
• 19:14
  like, can
• 19:15
  just
• 19:15
  imagine
• 19:15
  if we could
• 19:16
  figure out
• 19:16
  a way
• 19:17
  to do that
• 19:17
  for ocular
• 19:18
  melanoma.
• 19:18
  I just think
• 19:19
  that the
• 19:19
  numbers are
• 19:20
  so small,
• 19:21
  you know,
• 19:21
  kind of
• 19:21
  get put in
• 19:22
  that
• 19:22
  category
• 19:23
  that the
• 19:23
  numbers are
• 19:24
  so small
• 19:24
  that
• 19:24
  the funding
• 19:25
  is not
• 19:25
  there
• 19:26
  because
• 19:26
  we've had
• 19:26
  doctors,
• 19:27
  you know,
• 19:28
  I don't know
• 19:28
  what
• 19:28
  it would
• 19:28
  look like
• 19:29
  if one
• 19:29
  of
• 19:29
  Presley's
• 19:30
  scans
• 19:30
  changed,
• 19:31
  you know,
• 19:31
  and I
• 19:32
  don't think
• 19:32
  the doctors
• 19:33
  know
• 19:33
  either.
• 19:33
  I know
• 19:34
  I don't know
• 19:34
  where
• 19:34
  they put
• 19:35
  us, because
• 19:35
  one of
• 19:35
  the things
• 19:36
  we still run
• 19:36
  into now
• 19:37
  we're one
• 19:37
  year away,
• 19:38
  and that's
• 19:38
  what we've
• 19:39
  prayed for
• 19:39
  this entire
• 19:40
  time,
• 19:40
  is
• 19:41
  right now.
• 19:41
  At 17,
• 19:42
  he wouldn't
• 19:43
  qualify for
• 19:44
  almost
• 19:44
  anything.
• 19:45
  The injections
• 19:46
  that a lot
• 19:46
  of patients
• 19:47
  get
• 19:47
  in his eye,
• 19:48
  he doesn't
• 19:48
  get that
• 19:49
  he has
• 19:49
  to get
• 19:50
  a different
• 19:51
  steroid
• 19:52
  because
• 19:52
  it's
• 19:52
  not FDA
• 19:53
  approved
• 19:53
  for someone
• 19:54
  under
• 19:54
  the age of 18.
• 19:55
  And we face
• 19:56
  a lot
• 19:56
  of things
• 19:57
  along
• 19:57
  the way.
• 19:57
  We face
• 19:58
  issues
• 19:58
  with our
• 19:58
  insurance
• 19:58
  company
• 19:59
  because
• 19:59
  he's a kid
• 20:00
  and there's
• 20:01
  not many
• 20:01
  kids
• 20:01
  with it.
• 20:02
  And those
• 20:02
  are things
• 20:03
  that,
• 20:03
  you know,
• 20:04
  are beyond
• 20:05
  frustrating.
• 20:06
  And,
• 20:06
  I know
• 20:07
  that.
• 20:07
  I mean,
• 20:07
  that
• 20:07
  for sure
• 20:08
  makes
• 20:08
  sense.
• 20:08
  And I
• 20:08
  can't even
• 20:09
  I mean,
• 20:09
  like you
• 20:10
  said,
• 20:10
  like it's
• 20:10
  frustrating.
• 20:11
  It's
• 20:11
  frustrating
• 20:11
  for me.
• 20:12
  but it's
• 20:12
  frustrating
• 20:13
  to see it's
• 20:14
  I'm rare,
• 20:15
  you know,
• 20:15
  all of us
• 20:15
  are rare
• 20:16
  as far
• 20:16
  as this
• 20:17
  diagnosis
• 20:17
  goes.
• 20:18
  But Presley
• 20:18
  is rare
• 20:19
  among rare.
• 20:20
  I feel like
• 20:20
  if we do
• 20:20
  the
• 20:21
  statistics,
• 20:21
  he's
• 20:21
  probably
• 20:22
  like less
• 20:22
  than a
• 20:22
  person.
• 20:23
  Is
• 20:23
  the amount
• 20:23
  of
• 20:23
  percentage
• 20:24
  like that.
• 20:24
  He has
• 20:25
  a chance
• 20:25
  of even
• 20:25
  having
• 20:26
  gotten
• 20:26
  this.
• 20:27
  And yet
• 20:27
  obviously
• 20:27
  here he is.
• 20:28
  I can
• 20:28
  I can understand
• 20:29
  that.
• 20:29
  That would be
• 20:30
  that
• 20:30
  would be
• 20:30
  so
• 20:30
  incredibly
• 20:31
  frustrating
• 20:31
  to be
• 20:32
  dealing
• 20:32
  with the
• 20:32
  insurance
• 20:33
  kind of
• 20:33
  caveats
• 20:34
  and all
• 20:34
  of the ins
• 20:34
  and outs
• 20:35
  of that
• 20:35
  and
• 20:35
  what that
• 20:35
  looks like.
• 20:36
  And to have
• 20:36
  to kind of
• 20:36
  repeatedly
• 20:37
  explain,
• 20:38
  no,
• 20:38
  this is why
• 20:39
  this is
• 20:39
  necessary
• 20:40
  to have
• 20:40
  I mean,
• 20:41
  thank
• 20:41
  goodness
• 20:41
  you have a good team.
• 20:42
  You have
• 20:42
  a good care
• 20:43
  team of
• 20:43
  of all
• 20:44
  of these
• 20:44
  people
• 20:44
  working
• 20:44
  together,
• 20:45
  which I'm
• 20:45
  sure helps
• 20:46
  in kind of
• 20:46
  some of
• 20:47
  those
• 20:47
  battles
• 20:47
  with
• 20:48
  insurance,
• 20:48
  so to
• 20:48
  speak,
• 20:49
  but like to
• 20:50
  have to
• 20:50
  continue to
• 20:51
  repeat it
• 20:51
  and to be
• 20:51
  like, no,
• 20:52
  like we do
• 20:52
  need this.
• 20:53
  This is why
• 20:54
  there's all
• 20:54
  the doctors
• 20:55
  and say,
• 20:55
  why
• 20:55
  and like
• 20:56
  to just
• 20:56
  not be
• 20:57
  believed
• 20:58
  and to not
• 20:59
  have it
• 20:59
  stay with
• 21:00
  you
• 21:00
  because.
• 21:00
  Because
• 21:01
  like you
• 21:01
  said,
• 21:01
  like
• 21:01
  there's
• 21:01
  a lot
• 21:02
  of people
• 21:02
  who go
• 21:03
  through
• 21:03
  cancer and
• 21:04
  and they go
• 21:04
  through
• 21:05
  a year,
• 21:05
  maybe two,
• 21:05
  maybe
• 21:06
  three,
• 21:06
  and then
• 21:07
  they're in
• 21:07
  remission
• 21:07
  and
• 21:07
  they're like,
• 21:08
  they're in
• 21:08
  the safe
• 21:08
  zone.
• 21:09
  And,
• 21:09
  and they
• 21:09
  maybe have
• 21:10
  bloodwork
• 21:10
  or
• 21:10
  they have
• 21:11
  scans every
• 21:11
  year or,
• 21:12
  but it's a
• 21:12
  much lower
• 21:13
  frequency
• 21:14
  and
• 21:14
  it doesn't
• 21:14
  take up
• 21:15
  as much
• 21:15
  of their,
• 21:16
  their time.
• 21:16
  And so
• 21:16
  to have
• 21:17
  a cancer
• 21:17
  that
• 21:17
  behaves so
• 21:18
  differently
• 21:18
  and
• 21:19
  to have to
• 21:19
  be on watch
• 21:19
  for that
• 21:20
  as a,
• 21:20
  as a
• 21:20
  parent,
• 21:21
  as
• 21:21
  a family,
• 21:21
  I mean,
• 21:22
  it's
• 21:22
  a full time
• 21:23
  job.
• 21:23
  It's an
• 21:23
  absolute
• 21:24
  full time
• 21:24
  job.
• 21:25
  and so,
• 21:25
  I mean,
• 21:26
  I think,
• 21:26
  like you
• 21:27
  said,
• 21:27
  I think
• 21:27
  leaning
• 21:27
  into those
• 21:28
  kinds
• 21:28
  of supports
• 21:28
  that you do
• 21:29
  have,
• 21:29
  but I think
• 21:30
  calling
• 21:30
  attention
• 21:31
  to some
• 21:31
  of the
• 21:31
  things that
• 21:31
  are
• 21:31
  missing,
• 21:32
  that's
• 21:32
  I mean,
• 21:32
  that's
• 21:32
  a huge
• 21:33
  that's a
• 21:33
  huge thing
• 21:34
  to me.
• 21:34
  and I mean,
• 21:35
  I
• 21:35
  sincerely
• 21:36
  hope
• 21:36
  someone
• 21:37
  who has
• 21:37
  a connection
• 21:38
  with
• 21:38
  Make-A-Wish
• 21:38
  will
• 21:38
  share this
• 21:39
  with them
• 21:39
  and point
• 21:40
  out, like,
• 21:40
  hey, no,
• 21:41
  this was
• 21:41
  not okay.
• 21:42
  Like
• 21:42
  Presley,
• 21:43
  like
• 21:43
  whether
• 21:43
  or not
• 21:44
  he is,
• 21:44
  he is
• 21:45
  actively
• 21:46
  like has
• 21:46
  active
• 21:47
  known
• 21:47
  disease
• 21:48
  is
• 21:48
  irrelevant
• 21:49
  here.
• 21:49
  Like he's
• 21:49
  a child
• 21:50
  who has
• 21:50
  gone
• 21:50
  through
• 21:50
  cancer.
• 21:51
  I mean,
• 21:51
  sorry,
• 21:51
  Presley,
• 21:52
  I know
• 21:52
  you're not
• 21:52
  like
• 21:52
  a child
• 21:53
  child
• 21:53
  anymore,
• 21:54
  but but
• 21:54
  you know
• 21:55
  what I
• 21:55
  mean.
• 21:55
  at 13,
• 21:56
  like that.
• 21:56
  That
• 21:56
  would have
• 21:57
  been
• 21:57
  amazing.
• 21:57
  that would have
• 21:58
  been such
• 21:58
  a unique
• 21:58
  experience
• 21:59
  to be able
• 21:59
  to get to
• 21:59
  do
• 22:00
  something
• 22:00
  and to pick
• 22:01
  something
• 22:01
  that maybe
• 22:01
  you wouldn't
• 22:02
  have
• 22:02
  the ability
• 22:02
  to do
• 22:03
  otherwise.
• 22:03
  frankly,
• 22:04
  who cares
• 22:04
  if you're
• 22:05
  melanoma
• 22:05
  is small
• 22:06
  and
• 22:07
  and little?
• 22:07
  That
• 22:08
  doesn't
• 22:08
  mean that
• 22:08
  doesn't
• 22:09
  mean that
• 22:09
  it affects
• 22:09
  you
• 22:10
  differently.
• 22:10
  I think
• 22:11
  cancer
• 22:11
  affects us
• 22:12
  all in
• 22:12
  a universal
• 22:13
  way.
• 22:13
  and
• 22:14
  obviously
• 22:15
  some
• 22:15
  of the,
• 22:15
  the nuances
• 22:16
  of that
• 22:16
  look
• 22:17
  different
• 22:17
  for people.
• 22:18
  But I think
• 22:18
  it just
• 22:19
  goes
• 22:19
  to show
• 22:19
  that, like,
• 22:19
  you just
• 22:20
  never know,
• 22:21
  there are
• 22:21
  plenty
• 22:22
  of people,
• 22:22
  I mean,
• 22:23
  even
• 22:23
  outside
• 22:23
  of ocular
• 22:23
  melanoma
• 22:24
  who go
• 22:24
  through a
• 22:24
  cancer
• 22:25
  diagnosis
• 22:25
  and
• 22:25
  they don't
• 22:26
  look sick,
• 22:27
  you know,
• 22:27
  they don't
• 22:27
  they don't
• 22:28
  look like
• 22:28
  they have cancer.
• 22:29
  And
• 22:29
  not that
• 22:29
  not that
• 22:30
  Presley is
• 22:30
  sick.
• 22:30
  You're
• 22:30
  not sick.
• 22:31
  I'm
• 22:31
  not sick.
• 22:32
  We're
• 22:32
  all fine.
• 22:32
  We're
• 22:33
  healthy.
• 22:33
  But we have
• 22:34
  this
• 22:34
  underlying
• 22:35
  threat
• 22:35
  of illness
• 22:36
  that could
• 22:37
  show up
• 22:37
  or it
• 22:37
  could not.
• 22:38
  And
• 22:38
  we have no
• 22:38
  control
• 22:39
  over
• 22:39
  when or if
• 22:40
  that could happen.
• 22:40
  We have no way
• 22:41
  of knowing
• 22:42
  precisely
• 22:43
  when it could
• 22:43
  happen
• 22:43
  if it is going
• 22:44
  to happen.
• 22:44
  so
• 22:45
  the lack of
• 22:45
  control
• 22:46
  around that
• 22:46
  and just,
• 22:47
  I mean,
• 22:47
  like you
• 22:47
  said,
• 22:47
  living,
• 22:48
  living
• 22:48
  between
• 22:49
  scans,
• 22:49
  like all of
• 22:49
  these
• 22:50
  different
• 22:50
  things
• 22:50
  play into
• 22:51
  play into
• 22:52
  this.
• 22:52
  so, I mean,
• 22:52
  I think
• 22:53
  that,
• 22:53
  like you
• 22:53
  said,
• 22:54
  I think
• 22:54
  it's really
• 22:54
  important
• 22:55
  that we
• 22:55
  recognize
• 22:55
  that
• 22:56
  just
• 22:56
  because it
• 22:56
  looks
• 22:56
  different
• 22:57
  doesn't
• 22:58
  make it
• 22:58
  less valid
• 22:59
  and doesn't
• 22:59
  make it
• 22:59
  less
• 23:00
  worthy of,
• 23:00
  of being,
• 23:01
  you know,
• 23:02
  being known
• 23:02
  about.
• 23:02
  And if
• 23:03
  anything,
• 23:03
  I think
• 23:04
  it makes it
• 23:04
  more
• 23:04
  important
• 23:05
  that we,
• 23:06
  you know,
• 23:06
  continue
• 23:06
  to spread
• 23:07
  awareness
• 23:07
  for that.
• 23:08
  Yes, I
• 23:09
  agree, I
• 23:09
  agree
• 23:10
  completely.
• 23:10
  And
• 23:11
  with that,
• 23:11
  I didn't
• 23:11
  mean that
• 23:12
  to come
• 23:12
  across that
• 23:12
  we were
• 23:13
  complaining
• 23:14
  because
• 23:14
  I think
• 23:15
  basically
• 23:16
  the
• 23:16
  the root,
• 23:17
  we were
• 23:17
  already
• 23:17
  taking
• 23:18
  at that
• 23:18
  time is
• 23:18
  okay,
• 23:19
  there's
• 23:19
  a reason
• 23:20
  for
• 23:20
  all of this.
• 23:21
  And we
• 23:22
  we talked
• 23:22
  about this
• 23:22
  the last time
• 23:23
  we met
• 23:23
  with you.
• 23:24
  We had to
• 23:25
  I had to regroup
• 23:26
  because
• 23:27
  I like
• 23:27
  controlling
• 23:28
  a lot
• 23:28
  of things.
• 23:29
  And we had
• 23:30
  to regroup.
• 23:30
  Our family
• 23:31
  had
• 23:31
  to regroup,
• 23:32
  and
• 23:32
  we just
• 23:33
  made the
• 23:33
  decision
• 23:34
  with
• 23:34
  Presley
• 23:34
  kind of
• 23:35
  steering
• 23:35
  that ship
• 23:35
  that we
• 23:36
  were
• 23:36
  going to
• 23:37
  live it up,
• 23:37
  that
• 23:38
  we were
• 23:38
  going to do
• 23:38
  all
• 23:39
  we could
• 23:39
  to
• 23:40
  really get
• 23:41
  the most
• 23:41
  out of life,
• 23:42
  which
• 23:42
  I don't know
• 23:42
  if we
• 23:43
  would have,
• 23:43
  you know,
• 23:43
  everyone's
• 23:44
  life gets
• 23:45
  we were
• 23:45
  very much
• 23:46
  prior
• 23:46
  to this,
• 23:46
  a family,
• 23:47
  you know,
• 23:48
  these three
• 23:48
  boys,
• 23:49
  everybody
• 23:49
  in school
• 23:50
  and sports
• 23:50
  and running
• 23:51
  and this
• 23:51
  I feel like
• 23:52
  we were
• 23:52
  taxi
• 23:52
  drivers
• 23:52
  and running
• 23:53
  and
• 23:53
  everything
• 23:54
  was
• 23:54
  so fast.
• 23:54
  And this is
• 23:55
  definitely
• 23:56
  caused us
• 23:57
  to take
• 23:57
  a breath
• 23:57
  and
• 23:58
  a pause
• 23:58
  and, just
• 23:59
  be really
• 24:00
  intentional.
• 24:01
  And I'm
• 24:01
  and I'm
• 24:01
  forever
• 24:02
  thankful
• 24:02
  for that.
• 24:03
  But it's
• 24:03
  those sorts
• 24:04
  of
• 24:04
  little things
• 24:05
  that, it is
• 24:06
  it's awful.
• 24:07
  It's off.
• 24:07
  I mean,
• 24:08
  I really think
• 24:08
  that
• 24:09
  Make-A-Wish
• 24:09
  should take
• 24:09
  all of
• 24:10
  you guys.
• 24:11
  I mean,
• 24:11
  I just
• 24:11
  can't, Yes.
• 24:12
  I can't
• 24:13
  it's it's
• 24:14
  a hard.
• 24:14
  It's hard,
• 24:15
  it's hard.
• 24:16
  I know
• 24:16
  that it's
• 24:17
  hard for
• 24:17
  Presley
• 24:18
  at times.
• 24:18
  And I'm
• 24:19
  blown away
• 24:20
  often
• 24:20
  that it's
• 24:21
  as you
• 24:22
  know,
• 24:22
  I rarely
• 24:23
  see
• 24:23
  those times
• 24:23
  because,
• 24:24
  I mean,
• 24:24
  that's
• 24:24
  just a
• 24:25
  testament
• 24:25
  to him
• 24:26
  and his
• 24:27
  character
• 24:28
  and his
• 24:28
  soul with
• 24:29
  regards
• 24:29
  to this
• 24:29
  whole,
• 24:30
  you know,
• 24:30
  matter.
• 24:31
  And but,
• 24:31
  yeah.
• 24:32
  So, I mean,
• 24:32
  I, I agree,
• 24:33
  I think
• 24:33
  just seeing
• 24:34
  how
• 24:34
  you guys
• 24:35
  as a family
• 24:35
  have
• 24:35
  tackled
• 24:36
  this,
• 24:36
  and just,
• 24:36
  just how,
• 24:37
  like you
• 24:37
  said,
• 24:37
  like how
• 24:38
  you've just
• 24:38
  approached
• 24:39
  life,
• 24:39
  as a result
• 24:40
  of the last
• 24:40
  almost four
• 24:41
  years and,
• 24:42
  and the
• 24:43
  things that
• 24:43
  become more
• 24:44
  important.
• 24:45
  I think
• 24:45
  those are
• 24:45
  definitely,
• 24:46
  you know,
• 24:46
  those are
• 24:47
  those are
• 24:47
  just
• 24:47
  important
• 24:48
  gifts
• 24:48
  to recognize.
• 24:49
  they're not
• 24:49
  gifts
• 24:50
  we ever
• 24:50
  really
• 24:50
  would
• 24:51
  have asked
• 24:51
  for in
• 24:52
  the same
• 24:52
  way,
• 24:53
  like
• 24:53
  to have
• 24:53
  it happen
• 24:53
  the way that
• 24:54
  it happens.
• 24:54
  But but
• 24:55
  they are
• 24:55
  gifts
• 24:55
  nonetheless.
• 24:56
  That kind
• 24:56
  of extra
• 24:57
  presents
• 24:57
  the the
• 24:58
  circumstantial
• 24:59
  desire
• 24:59
  for
• 25:00
  being here
• 25:01
  and being
• 25:01
  in the now
• 25:02
  and to
• 25:03
  to not wait
• 25:03
  for doing
• 25:04
  certain
• 25:04
  things,
• 25:04
  things
• 25:05
  that are
• 25:05
  important
• 25:05
  to you.
• 25:05
  So on
• 25:06
  that note,
• 25:07
  I actually
• 25:07
  wanted to
• 25:07
  shift back
• 25:08
  and ask
• 25:08
  Presley
• 25:08
  something
• 25:09
  that
• 25:09
  I forgot
• 25:09
  to talk
• 25:10
  to you
• 25:10
  about. so.
• 25:11
  Presley.
• 25:11
  Sorry,
• 25:12
  Presley.
• 25:12
  your mom
• 25:13
  has
• 25:13
  mentioned
• 25:14
  the
• 25:14
  Polaroid
• 25:15
  project
• 25:15
  a couple
• 25:15
  times,
• 25:16
  and I know
• 25:16
  I've seen
• 25:16
  you talk
• 25:17
  a little bit
• 25:17
  about it.
• 25:17
  I've seen
• 25:18
  your
• 25:18
  social media,
• 25:19
  so
• 25:19
  I wanted
• 25:19
  to give you
• 25:19
  a chance
• 25:20
  to just
• 25:20
  to tell
• 25:21
  us, like,
• 25:21
  what is the
• 25:21
  Polaroid
• 25:22
  project
• 25:22
  and why
• 25:23
  did you start it
• 25:24
  this last
• 25:25
  few months?
• 25:25
  So
• 25:26
  the Polaroid
• 25:27
  project,
• 25:27
  it feels
• 25:28
  like a very
• 25:29
  simple
• 25:29
  thing
• 25:30
  is, capture
• 25:31
  memories,
• 25:32
  on film.
• 25:33
  it's an
• 25:33
  initiative
• 25:34
  to go
• 25:34
  create
• 25:34
  memories
• 25:35
  and then to
• 25:35
  capture
• 25:36
  them
• 25:36
  on film
• 25:36
  and say,
• 25:37
  hey,
• 25:37
  we have
• 25:38
  all these
• 25:39
  incredible
• 25:39
  memories
• 25:40
  from
• 25:40
  the past
• 25:41
  year and
• 25:41
  the next
• 25:41
  coming
• 25:42
  years.
• 25:42
  It's
• 25:42
  turning
• 25:43
  dreams into
• 25:44
  memories.
• 25:44
  that quote
• 25:45
  I like
• 25:45
  to say
• 25:46
  is die
• 25:47
  with
• 25:47
  amazing
• 25:47
  memories,
• 25:48
  not amazing
• 25:48
  dreams.
• 25:49
  So
• 25:49
  I feel like
• 25:49
  the
• 25:50
  Polaroid
• 25:50
  project
• 25:50
  just helps
• 25:51
  me
• 25:51
  make that
• 25:52
  happen.
• 25:52
  Make it
• 25:53
  reality.
• 25:53
  And it's
• 25:54
  been
• 25:54
  really cool
• 25:55
  seeing
• 25:55
  some of the
• 25:55
  I know,
• 25:56
  like over
• 25:56
  the summer,
• 25:56
  I feel like
• 25:57
  you went to
• 25:57
  all these
• 25:58
  crazy
• 25:58
  ghost
• 25:58
  places
• 25:59
  and like,
• 25:59
  scary
• 25:59
  places,
• 26:00
  like
• 26:00
  the most
• 26:00
  haunted
• 26:01
  places
• 26:01
  in your area
• 26:02
  and I'm
• 26:02
  sitting
• 26:02
  there,
• 26:03
  looking
• 26:03
  and I'm
• 26:03
  reading
• 26:04
  and I'm
• 26:04
  just like,
• 26:04
  oh, it
• 26:05
  gives me
• 26:05
  the creeps.
• 26:05
  Just seeing
• 26:06
  some of
• 26:06
  the places
• 26:07
  that you've
• 26:07
  gone.
• 26:07
  I'm like,
• 26:08
  oh,
• 26:08
  I can't,
• 26:08
  I can't
• 26:09
  even do
• 26:09
  that.
• 26:09
  But More
• 26:09
  power
• 26:10
  to you.
• 26:10
  but I think
• 26:11
  that's such
• 26:11
  that's such
• 26:12
  an amazing
• 26:12
  and
• 26:12
  powerful
• 26:13
  way of
• 26:13
  thinking of
• 26:14
  just
• 26:14
  that idea
• 26:15
  that, just
• 26:15
  don't
• 26:16
  live life
• 26:16
  waiting for
• 26:18
  the dreams
• 26:18
  to come
• 26:19
  eventually.
• 26:19
  take
• 26:20
  memories
• 26:20
  now,
• 26:21
  whether
• 26:21
  it's
• 26:21
  pictures
• 26:21
  or, you
• 26:22
  know,
• 26:22
  mental
• 26:22
  memories
• 26:23
  and just to
• 26:24
  really be,
• 26:25
  you know,
• 26:25
  be
• 26:25
  intentional,
• 26:26
  be present
• 26:26
  with what
• 26:27
  you do,
• 26:27
  and how
• 26:28
  you live
• 26:28
  your life
• 26:28
  and
• 26:29
  and don't
• 26:29
  just don't
• 26:30
  put
• 26:30
  everything
• 26:30
  on the back
• 26:31
  burner
• 26:31
  and wait
• 26:31
  for it
• 26:31
  to happen.
• 26:32
  because
• 26:32
  you just
• 26:33
  we never
• 26:33
  we never
• 26:34
  have those
• 26:34
  guarantees.
• 26:35
  And I
• 26:35
  think,
• 26:35
  if
• 26:36
  anything,
• 26:36
  this
• 26:36
  diagnosis
• 26:37
  helps
• 26:37
  get us
• 26:37
  that
• 26:38
  perspective
• 26:38
  that, like,
• 26:38
  nobody has
• 26:39
  a guarantee,
• 26:40
  at all,
• 26:40
  whether
• 26:40
  they have
• 26:41
  this
• 26:41
  diagnosis
• 26:41
  or not.
• 26:42
  And so just
• 26:43
  to be
• 26:43
  able to,
• 26:43
  to really
• 26:44
  be
• 26:44
  intentional
• 26:44
  with that,
• 26:45
  well, as
• 26:45
  we wrap up,
• 26:46
  is there
• 26:47
  anything else
• 26:47
  that either
• 26:47
  of you
• 26:48
  would like
• 26:48
  to share?
• 26:49
  I don't have
• 26:49
  anything
• 26:49
  specific.
• 26:50
  We
• 26:50
  definitely
• 26:51
  wanted to
• 26:51
  thank you.
• 26:52
  There's
• 26:53
  there's
• 26:53
  several
• 26:54
  people.
• 26:54
  I'm going
• 26:55
  to give
• 26:55
  Ashley
• 26:55
  McCrory
• 26:56
  a little
• 26:56
  shout out
• 26:57
  here.
• 26:57
  You know,
• 26:57
  when
• 26:58
  in the early
• 26:59
  she was one
• 26:59
  of the
• 26:59
  first
• 27:00
  or second
• 27:00
  people
• 27:00
  that had
• 27:01
  reached out
• 27:01
  to me
• 27:02
  amongst
• 27:02
  a whole
• 27:02
  bunch of
• 27:03
  people
• 27:03
  that had
• 27:03
  reached
• 27:04
  out.
• 27:04
  And we
• 27:04
  definitely
• 27:05
  Presley
• 27:05
  and I both
• 27:06
  watch her
• 27:06
  journey
• 27:07
  really
• 27:07
  close
• 27:07
  and
• 27:08
  especially
• 27:08
  because
• 27:08
  we're,
• 27:09
  you know,
• 27:09
  visiting
• 27:09
  a lot
• 27:10
  of the
• 27:10
  same
• 27:10
  places.
• 27:10
  And we're
• 27:10
  like, okay,
• 27:11
  we're
• 27:11
  going to
• 27:11
  look at
• 27:12
  what
• 27:12
  she did
• 27:12
  this last
• 27:13
  time.
• 27:13
  We're going
• 27:13
  to try
• 27:13
  to like
• 27:14
  it's been
• 27:14
  a good
• 27:15
  roadmap.
• 27:15
  And then,
• 27:16
  when you
• 27:16
  came along,
• 27:17
  it was like
• 27:17
  this great
• 27:18
  beacon
• 27:18
  of hope
• 27:19
  because
• 27:19
  anytime
• 27:19
  we see
• 27:20
  someone
• 27:21
  that I'm
• 27:21
  like, okay,
• 27:22
  all right,
• 27:22
  you know,
• 27:23
  she's young
• 27:24
  and she's
• 27:24
  healthy
• 27:25
  and she's
• 27:25
  got all
• 27:26
  this,
• 27:26
  you know,
• 27:27
  going
• 27:27
  and
• 27:28
  awesome,
• 27:28
  we're
• 27:28
  going to
• 27:29
  launch this
• 27:29
  whole thing.
• 27:30
  So we
• 27:30
  as a mom,
• 27:31
  I've
• 27:32
  watched
• 27:32
  her journey
• 27:33
  very
• 27:33
  closely.
• 27:33
  And again,
• 27:34
  it's
• 27:34
  kind of
• 27:34
  helped me
• 27:35
  from
• 27:35
  the mom
• 27:36
  aspect,
• 27:37
  seeing just
• 27:37
  how real
• 27:38
  and
• 27:38
  vulnerable
• 27:39
  and
• 27:40
  incredible
• 27:41
  that
• 27:41
  you are.
• 27:41
  And it's
• 27:41
  been so
• 27:42
  very
• 27:43
  helpful
• 27:43
  for us.
• 27:44
  And we
• 27:44
  both
• 27:44
  Presley
• 27:45
  and I both
• 27:45
  watch you
• 27:45
  very
• 27:46
  closely,
• 27:46
  not
• 27:46
  Facebook
• 27:47
  stalkers,
• 27:47
  but just
• 27:48
  big
• 27:48
  Facebook
• 27:48
  fans.
• 27:49
  And and
• 27:50
  we
• 27:50
  appreciate
• 27:50
  it.
• 27:51
  We
• 27:51
  appreciate
• 27:51
  that.
• 27:52
  We
• 27:52
  appreciate
• 27:53
  seeing
• 27:53
  your journey
• 27:54
  and that
• 27:55
  there's
• 27:55
  people
• 27:55
  out there
• 27:56
  that are
• 27:56
  getting it
• 27:56
  out there.
• 27:57
  Because
• 27:57
  I really
• 27:57
  think
• 27:58
  outside
• 27:58
  of you
• 27:58
  and Ashley,
• 27:59
  I know
• 28:00
  there's
• 28:00
  a few
• 28:00
  other pages
• 28:01
  like that,
• 28:02
  but I think
• 28:02
  that's
• 28:02
  important
• 28:03
  because I
• 28:03
  literally
• 28:04
  I take
• 28:04
  Ashley
• 28:04
  stuff.
• 28:05
  I was taking
• 28:05
  your stuff
• 28:05
  and I send
• 28:06
  the things
• 28:07
  that
• 28:07
  you post
• 28:07
  and things
• 28:08
  that you
• 28:08
  write about
• 28:09
  that are
• 28:09
  things
• 28:10
  I've sat
• 28:10
  and thought
• 28:10
  about night
• 28:11
  after night
• 28:11
  after
• 28:12
  night,
• 28:12
  and
• 28:12
  I've not
• 28:12
  even
• 28:13
  written
• 28:13
  about,
• 28:13
  you know
• 28:13
  what I
• 28:14
  mean?
• 28:14
  It's hard
• 28:14
  for me
• 28:15
  to get it
• 28:15
  out there,
• 28:16
  and I think
• 28:16
  because
• 28:17
  it's
• 28:17
  my child,
• 28:18
  but I
• 28:18
  don't
• 28:18
  always
• 28:19
  want to
• 28:19
  put that
• 28:19
  out there
• 28:20
  sometimes.
• 28:21
  So it's
• 28:21
  been helpful.
• 28:22
  And
• 28:22
  I've taken
• 28:22
  things
• 28:23
  that both
• 28:23
  you and
• 28:23
  Ashley
• 28:24
  have
• 28:24
  written,
• 28:24
  and I
• 28:25
  sent that
• 28:25
  to my
• 28:25
  family
• 28:26
  members.
• 28:26
  I sent that
• 28:27
  to my
• 28:27
  closest
• 28:27
  friends.
• 28:28
  I sent that
• 28:28
  to some of
• 28:29
  his
• 28:29
  teachers.
• 28:30
  And so
• 28:31
  your words
• 28:31
  and your
• 28:32
  thoughts
• 28:32
  and your
• 28:32
  feelings
• 28:33
  have helped
• 28:34
  create
• 28:34
  the path
• 28:35
  that he's
• 28:35
  on.
• 28:36
  And and
• 28:36
  people
• 28:37
  having
• 28:37
  a better
• 28:38
  understanding
• 28:38
  of that.
• 28:39
  And that's
• 28:39
  so
• 28:39
  important.
• 28:40
  And
• 28:40
  I feel like
• 28:41
  there's
• 28:41
  been
• 28:41
  several
• 28:42
  people
• 28:42
  I could name
• 28:43
  along
• 28:43
  the way.
• 28:43
  But
• 28:44
  definitely
• 28:44
  you and
• 28:45
  Ashley
• 28:45
  have been
• 28:45
  a huge
• 28:46
  one in
• 28:46
  that,
• 28:46
  to
• 28:47
  just help
• 28:47
  put what
• 28:48
  I would
• 28:48
  love
• 28:48
  to say,
• 28:49
  but I just
• 28:49
  haven't
• 28:50
  gotten
• 28:50
  the courage
• 28:50
  yet,
• 28:50
  or taking
• 28:51
  the time
• 28:52
  out there
• 28:52
  that I've
• 28:53
  been able
• 28:53
  to use that
• 28:54
  so people
• 28:54
  can kind
• 28:55
  of
• 28:55
  understand,
• 28:56
  you know,
• 28:56
  what
• 28:56
  it's like.
• 28:56
  So
• 28:56
  we appreciate
• 28:57
  you
• 28:57
  more than
• 28:58
  you know.
• 28:58
  Well
• 28:58
  thank you.
• 28:59
  seriously,
• 28:59
  writing
• 29:00
  is probably
• 29:01
  one of
• 29:01
  my top
• 29:01
  ways of
• 29:02
  processing.
• 29:03
  So, full
• 29:03
  disclosure,
• 29:04
  if you do
• 29:04
  follow me
• 29:05
  on
• 29:05
  Facebook,
• 29:05
  I like,
• 29:07
  like
• 29:07
  Stephanie
• 29:07
  said,
• 29:07
  I don't
• 29:08
  I don't
• 29:09
  sugarcoat
• 29:09
  it.
• 29:10
  and I
• 29:10
  think,
• 29:11
  I don't
• 29:11
  know, it's
• 29:12
  just
• 29:12
  everybody
• 29:12
  has a
• 29:13
  different
• 29:13
  way of
• 29:13
  processing.
• 29:14
  And some
• 29:14
  people are
• 29:15
  a little,
• 29:15
  a little
• 29:16
  more adept
• 29:17
  and
• 29:17
  comfortable
• 29:18
  with the
• 29:18
  verbal
• 29:18
  processing,
• 29:19
  whether
• 29:19
  it's
• 29:19
  through
• 29:19
  talking or
• 29:20
  through
• 29:20
  writing.
• 29:20
  and other
• 29:21
  people
• 29:21
  internalize
• 29:22
  things
• 29:22
  differently
• 29:23
  and better.
• 29:23
  I
• 29:24
  can't keep
• 29:24
  things
• 29:24
  internal
• 29:25
  because it
• 29:25
  drives
• 29:26
  me insane
• 29:26
  and I go
• 29:27
  whacko.
• 29:27
  I tend to,
• 29:28
  like,
• 29:28
  kind of
• 29:28
  implode
• 29:29
  if I keep it
• 29:29
  inside
• 29:30
  and other
• 29:31
  people can
• 29:31
  handle it,
• 29:32
  and
• 29:32
  they can.
• 29:32
  They can
• 29:32
  navigate
• 29:33
  that
• 29:33
  differently
• 29:33
  and better.
• 29:34
  I think
• 29:34
  my husband
• 29:35
  is kind of
• 29:35
  like that.
• 29:35
  He can
• 29:35
  like,
• 29:36
  kind of
• 29:36
  hold on
• 29:36
  to things
• 29:36
  internally
• 29:37
  and not,
• 29:37
  not feel
• 29:38
  as stressed
• 29:38
  as I get
• 29:39
  if I don't
• 29:39
  like,
• 29:40
  talk
• 29:40
  about it
• 29:40
  or, express
• 29:41
  in some way
• 29:42
  like what
• 29:42
  I'm
• 29:42
  thinking,
• 29:42
  what I'm
• 29:43
  feeling.
• 29:43
  But
• 29:43
  I really
• 29:44
  I mean,
• 29:44
  I really
• 29:44
  appreciate
• 29:45
  that,
• 29:45
  and I'm
• 29:45
  sure Ashley
• 29:46
  does as
• 29:46
  well.
• 29:46
  she's
• 29:46
  definitely,
• 29:47
  definitely
• 29:48
  been a
• 29:48
  light
• 29:48
  of help
• 29:49
  in
• 29:49
  the community,
• 29:50
  I think, here
• 29:50
  as well.
• 29:51
  So.
• 29:52
  Well,
• 29:52
  thank you
• 29:52
  both for
• 29:53
  being here.
• 29:53
  It really
• 29:53
  means a
• 29:54
  lot to me
• 29:54
  to have you
• 29:54
  guys back,
• 29:55
  and just
• 29:55
  to be able
• 29:55
  to talk
• 29:56
  a little
• 29:56
  more
• 29:56
  in-depth
• 29:57
  about kind
• 29:57
  of how
• 29:58
  things
• 29:58
  have
• 29:58
  shifted
• 29:58
  this
• 29:58
  last year
• 29:59
  or so
• 29:59
  since we've
• 30:00
  talked.
• 30:00
  and, and
• 30:00
  I really
• 30:01
  appreciate
• 30:01
  you guys
• 30:01
  just for,
• 30:02
  for being
• 30:02
  a huge part
• 30:03
  of raising
• 30:04
  awareness.
• 30:04
  And, and
• 30:05
  I hope
• 30:05
  you'll
• 30:05
  continue
• 30:06
  to, like,
• 30:06
  just
• 30:06
  courageously
• 30:07
  show up
• 30:07
  in your community,
• 30:08
  even even
• 30:09
  when you're
• 30:09
  not
• 30:10
  initially
• 30:10
  recognized
• 30:11
  and just
• 30:11
  say, hey,
• 30:11
  we're
• 30:12
  over here
• 30:12
  to like,
• 30:12
  don't
• 30:13
  forget
• 30:13
  about us,
• 30:13
  because
• 30:14
  I think
• 30:14
  I think
• 30:15
  that's
• 30:15
  that's
• 30:15
  what
• 30:15
  happens.
• 30:16
  That's
• 30:16
  that's why
• 30:17
  something
• 30:17
  like breast
• 30:18
  cancer
• 30:18
  became as
• 30:19
  common,
• 30:20
  like,
• 30:20
  as commonly
• 30:20
  known as
• 30:21
  it is,
• 30:21
  is
• 30:22
  because
• 30:22
  more
• 30:22
  and more
• 30:22
  obviously
• 30:23
  people
• 30:23
  were
• 30:23
  getting
• 30:23
  diagnosed,
• 30:24
  but also
• 30:24
  people
• 30:25
  just kept
• 30:25
  talking
• 30:25
  about it.
• 30:26
  so,
• 30:26
  you know,
• 30:27
  I know
• 30:27
  it's hard.
• 30:27
  I know
• 30:27
  it's it's
• 30:28
  sometimes
• 30:28
  it's
• 30:28
  discouraging,
• 30:29
  you know,
• 30:29
  when you
• 30:29
  feel like
• 30:30
  people
• 30:30
  should be aware,
• 30:31
  they should
• 30:32
  know,
• 30:32
  like, okay,
• 30:32
  yes, it's
• 30:33
  been
• 30:33
  four years
• 30:33
  since
• 30:34
  he was
• 30:34
  diagnosed,
• 30:34
  but
• 30:34
  like, he's
• 30:35
  still a
• 30:35
  cancer
• 30:35
  survivor,
• 30:36
  you know,
• 30:36
  like to, to
• 30:37
  want that.
• 30:37
  and so
• 30:38
  if you're
• 30:38
  not getting
• 30:38
  that
• 30:39
  awareness,
• 30:39
  if you're
• 30:39
  not having
• 30:40
  those kinds
• 30:40
  of pieces
• 30:40
  happen
• 30:41
  in your life
• 30:41
  or anyone
• 30:42
  listening
• 30:42
  like, don't
• 30:43
  be afraid
• 30:43
  to go
• 30:44
  after it,
• 30:44
  advocate
• 30:44
  for yourself.
• 30:45
  Whether
• 30:45
  it's in
• 30:46
  the
• 30:46
  community
• 30:46
  setting,
• 30:47
  in the
• 30:47
  doctor
• 30:47
  setting,
• 30:48
  I think
• 30:48
  that
• 30:48
  those are
• 30:48
  powerful
• 30:49
  things
• 30:49
  that we can
• 30:49
  do.
• 30:50
  so anyway,
• 30:50
  thank you
• 30:50
  both just
• 30:51
  for
• 30:51
  being here
• 30:51
  and for
• 30:52
  taking
• 30:52
  the time.
• 30:52
  I really
• 30:53
  appreciate
• 30:53
  it.
• 30:53
  Thank you.
• 30:53
  Thank you
• 30:54
  for
• 30:54
  having us.
• 30:54
  We
• 30:55
  appreciate
• 30:55
  it.
• 30:56
  And we're
• 30:56
  always
• 30:56
  rooting
• 30:57
  for you,
• 30:57
  always,
• 30:58
  always.
• 30:59
  thank
• 30:59
  you guys
• 30:59
  so so much.