Addison's Story

How to tell our story as concisely as possible..........hmmmm?  Well, here it goes. We are the Land's from North Carolina.  We love our North Carolina Tarheels, Fastpitch Softball and our Lord and Saviour.  Our family is made up of mom(April), dad(Thomas), older sister(Bailey) and younger sister(Addison).  I(mom) have dealt with pancreatitis pain for the better part of two decades but only found out that is was pancreatitis causing my abdomen pain when my youngest daughter(Addison) began having severe bouts of abdominal pain and vomiting at the age of two.  From the age of two to the age of four, Addison was in and out of the ER and doctor's office with severe abdominal pain and vomiting.  We were often told, it's a virus, it's a stomach bug, it's psychological, it's this, it's that, but oddly enough no one else around her was getting sick.  Well, my older sister Dawn(Micah's mom) had been battling pancreatitis for a few years and her doctor at Duke told her that it could be a hereditary issue, as our mom had long standing pancreatic disease as well.  So, the next time Addison was in the ER (she was four at this point) I insisted they draw an amylase and lipase panel to check for pancreatitis.  Sure enough, her labs were through the roof, we fortunately and unfortunately finally had an answer, a name to the monster that had been tearing up our daughter's insides, fortunately because we knew there was something wrong and that it wasn't in her head and unfortunately because the diagnosis was devastating and scary. This at age four was her first admission to the hospital for pancreatitis and she was in for ten days and then transferred to Baptist for further testing.  I have to say I am very thankful for the physician's at Mulberry Pediatrics for being there for us, they were very attentive and eager to figure out why this was happening.  They researched and found out about rare genetic mutations that cause hereditary pancreatitis.  Upon them transferring her to Baptist Hospital the labs to check for a genetic mutation were drawn. However, at this point the pediatric GI specialist at Baptist was  still insisting it wasn't pancreatitis but instead cyclical vomiting syndrome, basically she was psychologically making herself sick.  Really??!!  Well it took about two months for the special genetics lab work to come back and guess what............she had a genetic mutation causing her to have pancreatitis.....Go Mulberry Pediatrics (Dr. Kunkle, Dr. Dravland and Dr. Dodds)!Boo you Baptist.   She had the R122H mutation of the PRSS1 mutations that cause hereditary pancreatitis. After Addison's labwork came back I and my older daughter were tested..........yep, you got it, we have hereditary pancreatitis too.  No wonder I have abdomen pain, nausea, etc. everyday. Duh.Well the last ten years since her diagnosis have been a roller coaster of hospital admissions, over 25 admissions and counting, with vomiting, indescribable abdomen pain, hard core pain meds, missed school, missed vacations, missed opportunities, missed sports, missed holidays, just MISSED LIFE. Don't get me wrong, she has had many periods of good health, she excels at school and loves playing all types of sports, especially softball, but always lurking waiting to rear it's ugly head at any given time is this evilness we call the "P" word at our house, pancreatitis. In the last 6 years my nephew(Micah) has since been diagnosed and been battling this horrible monster of pancreatitis and my oldest daughter (Bailey) has in the last 4 years began having acute attacks as well. Pretty much it's easy to assume on any given day someone in our family is dealing with the crippling pain of pancreatitis.So, here we are, it's April 2013 and we are approaching a light at the end of the tunnel, we have hopes for a new beginning, a new life in 2013, a life that doesn't revolve around the dreaded "P" word. The wonderful physicians at Mulberry Pediatrics referred us to a specialist at Duke for a possible pancreatic stent for Addison and Micah but after meeting Dr. Ulshen and his review of their cases, he put us in contact with the AWESOME people at the University of Minnesota Amplatz's Children's Hospital in Minneapolis.They are the pioneers and world leaders in doing an amazing surgery giving new life and new hope to children just like mine and my nephew.  They do a procedure called a Total Pancreatectomy and Islet-Auto Transplant.  The short of it is, take out the pancreas and salvage pancreas cells and put them back in the liver to try and prevent diabetes.  The hopeful end result is living without a pancreas but also living without diabetes.  The other positive of the surgery is that without a pancreas, you don't get pancreatic cancer, as the risk for it is astronomical just by having this genetic mutation. The surgery will take approximately 12 hours and will require us to stay in Minnesota for approximately 8-10 weeks, 2 weeks in pediatric ICU, 2 weeks in a regular room and 4 weeks on an outpatient basis before being able to return to North Carolina.  The surgery involves removing the pancrease, appendix, gallbladder, part of the intestines and more often then not the spleen as well.  While the patient is still asleep they dissect and harvest viable islet cells(the insulin cells) from the removed pancreas, and then transplant these back into a part of the liver.  In many patient's these transplanted cells will take and begin producing the insulin just like a regular pancreas would and can lessen the severity of the diabetes you develop without a pancreas or in some instances prevent it all together.We will fly up 1 week from today for a week of pre-op and meetings with doctors of all sorts to see if Addison, Bailey and Micah are good candidates for this life changing surgery and then the plan will be to set up the surgery for Addison and Micah for sure over the summer break.  Bailey is still in limbo about when to have the surgery as she will be starting college in August.  She is going for her pre-op appointment and testing so she can hear all the risks, benefits, etc. from the experts in Minnesota and not just her mom's version. LOL  From there she will make her decision about when it is right for her to have this major surgery. I am sitting here right now by Addison's bedside at the hospital, she was admitted yesterday due to off the charts abdomen pain, and I am thinking about what will life be like without the "P" word.As major and scary as the surgery that lies ahead seems, the hope of a new life without pancreatitis, without pain, without missed life moments seems like such a dream. Addison and Micah were just hanging out together a few weeks ago and they were sitting on a brick wall in the backyard talking for sometime.  When Dawn and I talked with each of them about what they were discussing it was heartbreaking.  They (a 13 year old and ten year old) were discussing this scary life changing surgery, the possibility of dying, what ifs, the pain they feel that no one else understands but them, the "P" word life they have so long lived and what would it be like to have the life of a normal kid.  Wow! That is some heavy talk for two kids to be having, to understand and to be facing.  They really aren't asking for much are they, to be normal. The Lord will provide and look after these precious gifts he has placed in our care.  We have prayed and sought His guidance and have no doubt that this surgery is what we are suppose to do.  Please pray for Addison, Bailey and Micah as we move toward trying to provide them something that most take for granted, a normal life. I know normal is a relative word and we all have battles and problems, I guess the normal we seek would be a life with less pain, less vomiting, less time in hospitals and more time with family, friends and teammates to make memories that don't revolve around The "P" Word. April Land