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My   wifes'   pregnancy   was   a   healthy   and   normal   pregnancy.   She   took   prenatal   vitamins,   ate   right   and   just   took   really   good   care   of   herself   and   the   baby inside. All of the ultrasounds looked like we had a healthy baby boy on the way. October   5,   2011   is   when   Gavin   came   into   this   world   via   natural   vaginal   birth.   Instantly   our   best   day   turned   into   our   worst   day.   Gavin   had   an   egg   sized tumor   on   his   stomach   and   another   on   his   back.   His   skin   was   discolored   from   his   upper   back   to   his   knees.   This   is   known   as   bathing   trunk   nevus.   We were   transported   from   SRMC   to   Women’s   and   Children’s   Hospital   five   hours   after   birth.   We   were   only   there   for   5   days   because   this   disease   is   so   rare no one knew how to treat. On   October   11   we   were   sent   to   UPMC   Children’s   Hospital   where   he   stayed   in   the   NICU   for 9    days.    The    doctors    there    had    seen    disease    before    and    called    it    "neurocutaneous melanosis"   with   accompanied   giant   hairy   nevus.   We   were   educated   on   the   disease   and   we came   home   on   Oct.   20.      A   week   later   we   went   back   to   Pittsburgh   to   have   the   egg   sized tumors   removed   and   the   tissue   is   now   being   grown   and   tested   in   Dr.   Miguel   Reyes- Mugicas' lab. A   few   weeks   went   by   and   we   noticed   Gavins'   eyes   bulging   out   so   we   loaded   up   and   went back    to    UPMC    Children’s    in    Pittsburgh.    We    met    Dr.    Regina    Jackaki    who    is    a    neuro oncologist   and   she   took   one   look   and   said   he   was   hydrocephalic   and   without   immediate surgery   he   would   not   make   it.   So   an   MRI   was   done   and   a   cyst   was   found   that   was   causing the problem. On Nov. 10 surgeons attempted to remove the cyst but could not. Instead we opted for a VP shunt.   This   allows   pressure   from   the   brain   to   be   drained   into   the   abdomen.   Somewhere between   the   first   two   brain   surgeries   Gavin   developed   a   massive   brain   infection   so   the   VP shunt   was   removed   from   the   left   side   of   his   brain   and   an   external   drain   was   surgically   put into Gavins’ brain to drain infection and blood.  After   10   days   of   antibiotics   another   VP   shunt   was   placed   on   the   right   side   of   his   brain   where it remains today. We got to bring him home on December 1 from the hospital. Our   next   MRI   was   in   April   2012.   The   results   were   not   good   and   Dr.   Regina   Jackaki   told   us   that   Gavin   is   terminal,   although   she   won’t   put   a   time   on   it she   says   "it   will   not   be   as   long   as   you   want."   So   we   ask   about   treatments   and   started   radiation   pills   for   a   month.   We   went   back   for   a   follow   up   MRI   in May 2012 and the disease had gotten worse again. By this time Gavin weighed 13 pounds and was not gaining weight because he quit eating.   To   sustain   life   we   opted   for   a   feeding   tube.   On   May   12   he   was   given   a   tube   that   goes   into   his   stomach   so   he   would   live.   That   visit   we   were   there   2 weeks.   We   then   started   an   experimental   chemo   therapy   called Temodar   that   he   takes   5   days   in   a   row   at   the   beginning   of   each   month.   He   also   gets   an injection called Peg interferon alfa-2b every Tuesday. When   we   brought   him   home   again   he   threw   up   constantly   so   every   week   we   drove   to   Pittsburgh   Children’s   Hospital   and   would   get   tests   and procedures.   We   would   stay   from   1   to   seven   days   with   each   visit   and   this   was   weekly   until   around   August.   The   day   before   my   DRO   VA   hearing   we again   had   to   make   an   emergency   trip   to   the   children's   hospital   because   Gavin   was   throwing   up   blood.   The   doctors   now   have   the   vomiting   under control   but   he   still   spits   up.   It’s   now   Nov.2012   and   he   weighs   17.8   pounds.   He   doesn't   crawl   but   scoots   on   his   bottom   to   get   around.   He   can   stand   up by himself and walk with a helping hand. The first Saturday of 2013 Gavin lost the use of his legs, bladder and partial bowel function. By the time we got him to UPMC Pittsburg he was paralyzed from the waist down. He received a large dose, 4 grey or 400 rad, concentrated to the tumor on his spinal cord. Within 10-14 days he regained feeling down to his waist but still very little bladder function, so we had to cath him every 6 hours. In   January   Gavin   was   given   six   months   to   live   in   but   passed   away   on   March   23,   2013   at      8:15   p.m.   surrounded   by   family   in   UPMC   Childrens   Hospital Pittsburgh   Pennsylvania.   He   had   two   tumors   that   rapidly   grew,   one   in   the   C-spine   area   and   one   at   the   brain   stem.   This   caused   the   brain   stem   to   shut down   and   after   4   agonizing   hours   he   stopped   breathing   and   lost   his   battle   with   NCM.   We   donated   his   brain   and   spine   along   with   the   rest   of   his   organs to   Dr.   Miguel   Reyes-Mugica,   chief   of   pathology   and   researcher   of   NCM.   Miguel   recently   gave   me   a   preliminary   report   and   told   me   that   they   have already   learned   a   lot   of   new   things   about   the   disease   in   just   14   days.   I   will   not   stop   raising   money   and   having   events   until   a   treatment   or   cure   is   found for this disease.

Gavin’s Story

By Travis Bailey (Gavins Dad) Published 2013
ABN: 23543860400
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