Thursday, April 25, 2013
Prayer Quilt
Just wanted to take a moment and send a special thank you to our brothers and sisters in Christ at Poovey's Chapel. Their quilt group made Addison a beautiful prayer quilt. It was made with love and prayer. Each knot you see on the quilt represents a prayer that they sent up for Addison. Words can't express the warmth and blessings this has brought our family. If you know someone that is part of their quilt group please express our heartfelt thanks for such a meaningful gift.
North Carolina!
We made it back to NC and warm weather. Yeah! Surgery date is set, June 10th for Addison and June 13th for Micah. Prayers are greatly needed and appreciated as we prepare over the next month for this life altering surgery.
Headed Back to N.C. YEAH!
Well we are sitting in the airport in Minneapolis waiting to board our plane to Chicago then on to Charlotte. Can't wait to be back home. This trip has been overwhelming, information overload and yet a light to the end in sight. The people of the University of Minnesota Medical Center have been nothing short of amazing. They care about the girls and are as frustrated as we are with the medical community for not getting us this help sooner. Just got off the phone with Marie the Transplant Coordinator, she called to tell us the team of specialists met last night to discuss the girls and all are in agreement Addison and Bailey both need this surgery as soon as possible. She is calling back later today with a surgery date, we are hoping to do the last week in May or first in June. Bailey is quite overwhelmed trying to go to prom, graduate high school and get set to head to college in August so her decision is to see how freshman year goes and then revisit possibly doing surgery next summer. As always, continue to pray for the girls and our family as we get set to undertake a scary and long journey through transplant surgery and recovery. :)
Wednesday, April 24, 2013
Last Day of PreOp Workup
Bailey and Addison have both felt really crummy today so all this sitting and doctors visits have been tough. The team will meet this evening to discuss their cases and recommendations. Just having the PRSS1 genetic mutation we have it makes clearance for the surgery pretty much a given. The transplant coordinator will call us tomorrow with their recommendations and to schedule things.
Tuesday, April 23, 2013
Day 2 PreOp Consultation
Day two of doctor's visits down, one day to go. Another cold day here in the Twin Cities. Today's visits have been a little tougher because Addison has been having a lot of abdomen pain since last night and thus was medicated for today's visits. Tomorrow will be the final day of preop visits then we get to come back to North Carolina in Thursday, can't wait to be home! Continue to pray for us as we finish up this whirlwind visit and also as we travel back on Thursday.
Monday, April 22, 2013
Day 1 of PreOp Visit Minnesota
Wow! The people here are just amazing! It is so refreshing to finally meet doctors, nurses and other families that completely understand, not just empathize but sympathize. My only regret so far is not getting to these great people sooner , oh, and also the fact that its almost May and pouring snow here. Day 2 of doctor appointments start at 730 in the morning with Bailey having an MRI. Have felt nothing but opened doors, kindness and reassurance by being here. Thank you Lord!
Saturday, April 20, 2013
Here We Come Mall of America!!
Look out Minnesota...........I have two clothes crazy teenage girls headed your way to storm the largest mall in America.LOL Bailey has a softball game this afternoon then we are off to Charlotte to catch a plane to Minnesota. We have a week ahead of meeting a million doctors from a pile of different specialties to talk about Addison and Bailey's Hereditary Pancreatitis. We will meet with transplant surgeons, psychologists, endocrinologists, gastroenterologists, nutritionists, social workers, etc. to discuss the so called life they have lived with this disease. They will be having tests as well and then we will finalize and set a date for the surgery that will change our family's life. Pray for us as we travel. Pray for traveling grace and the kindness of man, thanks papa David :). Also, pray for the stores at the Mall of America cause my two girls are shoppers!
Saturday, April 13, 2013
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
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
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