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Ryan James Dobbie 13 April 2009 – 3 November 2010 Born: Cairns Base Hospital, Queensland, Australia Nevus Type: Bathing Trunk Nevus Primary Complication:  Malignant Melanoma  Treatment: None Ryan's Journey: It   was   Easter   Monday   when   I   went   into   labour   with   Ryan,   he   was   in   hurry   to   enter   this   world   as   the whole   labour   only   lasted   four   hours.      When   Ryan   was   placed   on   my   chest,   I   noticed   some   spots   on his   face   and   I   asked   the   midwife   if   he   had   a   mole   on   his   face.      Little   did   I   realise,   he   also   had   it   all   over his   back,   stomach,   genitals,   legs   and   there   were   lots   of   other   tiny   little   moles   around   his   body.   The nurse advised they had called for the doctor to come and see Ryan. We   were   told   that   they   had   sent   photo's   of   Ryan   to Townsville   where   they   advised   they   thought   Ryan's condition   was   CMN   (congenital   melanocytic   nevus)   and   that   is   was   very   rare.      They   also   advised   that due   to   the   nevus   being   on   his   spine   and   the   base   of   his   neck   he   would   require   a   MRI   to   see   if   there were   any   neurological   problems   and   because   he   was   a   baby   they   would   have   to   fly   him   to   Townsville so   they   could   sedate   him.      Luckily,   the   private   hospital   had   an   MRI   machine   and   they   decided   to   try and   do   it   there   first.      My   mother   went   with   the   nurse   to   the   private   hospital   as   I   was   still   recovering from   surgery   to      remove   my   placenta.      When   mum   and   Ryan   came   back,   I   was   told   he   was   a   perfect baby and just laid there and did not move and they were able to carry out the MRI. The   results   came   back   the   next   day   with   the   all   clear   and   that   he   was   fine   in   the   brain   and   spine,   but   we   still   had   to   see   the   paediatrician   as   we   still were not fully aware of Ryan's condition. We   were   allowed   home   after   6   days   in   hospital,   but   had   several   appointments   made   with   his   dermatologist      Leith   Banney   and   were   waiting   on   a   consult with   the   eye   specialist   and   were   also   awaiting   for   a   time   and   date   to   take   Ryan   to   the   Royal   Children's   Hospital   in   Brisbane   to   see   what   could   be   done for our beautiful little man.  Ryan   was   9   weeks   old   when   we   made   our   fist   trip   to   Brisbane   and   we   saw   a   couple   of   specialists   and   one   of   them   had   said   that   they   had   seen   cases like   Ryan's   before,   however,   his   was   the   worst   he   had   seen.     That   did   not   make   me   feel   very   good   and   I   burst   into   tears.      We   met   Professor   Kimble   who examined   Ryan   and   said   that   he   would   need   to   consult   his   peers   from   Australia   and   overseas.      We   then   went   home   to   Cairns   and   Ryan   had   a   cold which developed into RSV and he spent 7 days in hospital. Professor   Roy   Kimble   later   contacted   us   and   advised   that   as   Ryan   has   extra   skin   around   his   body,   he   would   do   some   serial   excisions   and   also   see how well his skin healed, so Ryan's first operation was booked in for when he was four months old. Surgeries: Ryan's   first   surgery   was   carried   out   with   no   issues   apart   from   not   being   able   to   find   a   vein   to   put   anaesthetic.      I   counted   17   needles   holes,   luckily   Ryan was   sedated   and   did   not   feel   any   of   those.      Ryan   was   off   heavy   pain   medication   straight   away   and   did   not   appear   to   show   too   much   discomfort   and   his wound healed really well. Professor   Kimble   ensured   that   all   the   anaesthetists   were   careful   for   any   future   surgeries.      He   also   took   some   of   Ryan's   skin   and   had   planned   to   try   and grow it in the lab. Ryan had four more surgeries after that one and we only had one wound that de hissed and had to fly back to Brisbane for it to be re-stitched.  Whilst   this   was   being   done,   we   were   advised   that   the   biopsy   from   the   surgery   came   back   with   one   of   the   removed   areas   being   postive   with   a   melanotic schwannoma   and   that   it   was   very   rare   and   not   found   in   children.      Professor   Kimble   said   that   the   biopsy   had   just   cleared   the   safe   margins   but   wanted   to ensure all of it was removed, so this was done with the wound that split open. In February 2010, an MRI was carried out and we were advised that Ryan had the all clear from this tumour and we felt so relieved. Ryan   had   another   surgery   after   this   where   he   had   lumps   removed   from   his   anus   and   was   given   a   new   little   bottom   as   the   lumps   bled   and   would   have caused   if   problems   in   the   future.      Only   a   couple   of   hours   after   his   release   from   this   surgery,   he   developed   diarrhoea   and   I   was   so   worried   he   would   get an   infection   and   he   was   re-admitted   to   hospital   for   a   further   week.      We   were   very   vigilant   with   cleaning   every   time   he   soiled   himself   and   kept   the   area clean with vasolene.  He had the diarrhoea for 3 weeks and did not get one infection and the would healed well. Diagnosis: Six   months   after   his   MRI,   Ryan   was   happily   playing   outside   and   fell   over   and   cried   a   little   bit.      He   then   got   up   and   continued   playing,   he   had   a   slight limp   but   wasn't   complaining.      The   next   morning   he   appeared   to   still   have   a   limp,   so   my   mother   took   Ryan   to   the   doctors   surgery   just   to   make   sure   he was ok. Dr   Michael   didn't   think   there   was   anything   untoward,   but   because   Ryan   had   such   a   high   pain   threshold,   it   was   decided   that   we   would   get   an   x-ray. This was   carried   out   the   same   day   and   results   sent   to   Dr   Michael.      I   received   a   telephone   call   to   say   that   I   needed   to   go   the   surgery   to   discuss   the   results.      I immediately   knew   there   was   something   wrong.      Dr   Michael   asked   if   there   was   any   previous   injuries   and   I   advised   no   and   that   he   would   have   been aware of them if there was.   As   I   had   a   paediatrician   appointment   for   two   days   time,   I   asked   Dr   Michael   to   refer   the   report   to   Dr   Elena   Mantz   and   I   took   the   film   in   with   me.      When Elena   examined   Ryan,   she   didn't   notice   a   limp   when   he   walked,   however   she   could   see   it   when   he   ran.      The   ortho   surgeon   was   paged   and   was   not available, so Elena said she would refer the report to the ortho and get back to me. The   next   day   whilst   I   was   taking   my   daughter   to   school,   I   received   a   phone   call   from   the   hospital   advising   they   had   booked   an   MRI   at   Brisbane   for Monday   and   I   would   have   to   fly   down   on   Sunday.      I   said   no   as   Ryan   was   booked   in   for   surgery   on   the   Wednesday   and   they   could   do   it   then   or   on   the Tuesday   when   we   were   due   to   arrive.      Not   long   after   I   received   a   phone   call   from   Dr   Elena   Mantz   advising   that   it   was   important   and   that   we   should really go, so I agreed. I   then   got   a   phone   call   from   the   oncology   social   worker   who   was   booking   my   flight   and   accommodation.     As   soon   as   I   heard   oncology   social   worker,   I knew immediately that cancer was suspected, however at worst I thought Ryan may loose his leg. Monday   came   and   Ryan   had   his   MRI,   the   hospital   was   only   going   to   do   his   sore   leg   and   I   asked   why   weren't   they   doing   all   of   it.     They   said   they   may   do all, but weren't sure.  The MRI took hours.  Ryan came out of it fine. It   was   only   hours   later   and   I   was   called   into   the   Oncologists   room   and   I   knew   then   the   results   were   not   good   and   asked   Peter   Wilson   to   get   my   mum   to sit   in   on   the   results.      He   asked   me   what   I   thought   he   was   going   to   say.      I   said   it   is   cancer   isn't   it.      Peter   confirmed   this,   but   said   it   was   really   bad   and was   melanoma   that   has   already   spread   through   Ryan's   bones   and   liver   and   that   there   was   no   treatment   available   and   that   he   didn't   have   long.   He   also said   Ryan's   leg   was   actually   broken   as   the   tumour   was   quite   big   in   his   leg   and   were   amazed   that   he   was   still   walking   on   it.      Peter   advised   the   cancer was aggressive and had only been in his body for about six weeks. My   world   was   just   shattered,   I   broke   down   and   cried.         I   then   had   to   ring   my   husband   and   tell   him   the   news.      He   and   my   daughter   were   on   the   next available plane the following day to be with us. Ryan's last weeks: The   palliative   care   team   were   wonderful,   they   provided   us   with   loads   of   support,   information,   medication   and   family   day   trips.      We   went   out   and   bought a   video   camera   and   spent   some   quality   family   time   together   and   trying   to   be   happy   for   our   beautiful   boy.      We   went   to   Sea   World, Australia   Zoo   and   he loved every minute. When   we   went   home   to   Cairns,   we   had   a   party   for   Ryan   and   had   a   merry   go   round,   zoo   to   you, jumping   castle,   face   painting,   balloons,   food   and   all   of   it   was   donated   by   our   friends   and   wonderful people   from   around   Cairns.      We   got   some   wonderful   photographs   from   dear   friends   and   Ryan   had   a ball. Ryan   was   very   brave   and   never   complained.      He   still   walked   with   a   removable   caste,   but   couldn't   in the   end   and   I   would   have   to   carry   him   or   put   him   in   his   pram.      He   kept   his   sense   of   humour,   even when his little belly swelled with the tumour and his body got hot with temperatures.  You   could   see   he   didn't   understand   why   he   wasn't   able   to   do   some      things   any   more   and   I   couldn't   tell if   he   was   in   too   much   pain,   this   is   something   I   will   always   wonder   about.   We   were   told   of   what   would happen   to   Ryan   like   going   jaundiced,   sleeping   more   and   loosing   his   appetite.      Ryan   did   none   of   these things   except   he   couldn't   walk,   got   uncomfortable   and   I   would   have   to   pick   him   up   and   then   put   him down.      He   developed   lumps   in   his   skull   and   were   painful   to   touch   as   he   would   push   my   hands   away from him.  Ryan   passed   away   at   home   11   weeks   after   his   diagnosis   and   we   were   shocked   at   how   quick   this cancer took hold of our little boy.   We were absolutely devastated and still are today. Ryan   was   an   energetic,   mischievous   and   funny   little   boy.   He   was   brave   and   never   complained   about anything.      He   loved   being   outside   and   taking   his   sister   to   school      He   would   yell   at   people   if   they walked    passed    him    without    them    saying    hello    to    him.    Ryan    changed    our    answering    machine messages   and   locked   us   out   of   our   mobile   phone.   Ryan   always   had   a   smile   on   his   face   and   his beautiful blue eyes sparkled.

Ryan’s Story

By Lyn Dobbie (Ryan’s Mum) Published 2013
ABN: 23543860400
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