Staying #LaurenStrong – Lauren’s Story

When did your pancreatitis story start?

It was in August of 2010, and I was 8 years old.  I have two younger brothers, and at that time my brother Cameron was 5 years old and my youngest brother Liam was only 10 months old.  My family and I were on a road trip across Pennsylvania in our motorhome heading to an amusement park, and then had stopped to visit family who lived about 3 hours away from our home town. I woke up in the early morning with a lot of pain in my stomach and my parents assumed I must just have a stomach flu.  They encouraged me to try to rest.  Unfortunately, trying to rest was impossible because I felt miserable and my parents grew concerned it might be something more serious.  I wasn’t getting any relief from the constant discomfort, and after vomiting the pain never improved and continued to worsen, so they decided to take me to the emergency room to be evaluated.

Did your doctors know it was pancreatitis right away? 

By the time we got to the emergency room, I couldn’t walk and was struggling to take a breath because the pain had gotten so intense.  The first doctor who saw me thought it might be appendicitis, but eventually when they got the lab results and they were so bad, they knew I had pancreatitis, but they had no idea why.  They reviewed everything we had done on our trip including amusement park rides, swimming in a lake and pool, rode bikes, and visited with family.  Nothing we had done explained why my lab results were so bad.  After 5 days in the hospital, I still was still not feeling well and when I tried to eat, I would vomit.  The doctors said I could be discharged and my parents could take me to UMPC Children’s Hospital of Pittsburgh for further evaluation.  We drove home to Pittsburgh and I was admitted for testing and they found a large mass in the area of my pancreas and determined it was a large pseudocyst that was almost the size of a softball.

To try to avoid surgery to drain the pseudocyst, they told me I would need a feeding tube to rest my gut or I could try staying on a restricted diet.  I really didn’t want a feeding tube, so a Nutritionist came up with a plan to sip small amounts of PediaSure throughout the day, and was able to get enough calories  to avoid the feeding tube.  Once I was able to show them I could do that, they discharged me after about 13 days.  School was starting just a couple days after I was discharged, so this meant though, that while I was in school, I was going to need to be able to eat throughout the day.  So my 3rd grade teacher made time that all the kids could have a snack or drink break and that way I didn’t feel weird being the only kid having something.  After being strict with the PediaSure only diet, the pseudocyst went away on its own and I avoided having to have surgery.  The doctors were shocked because they had told my parents it was unlikely that with the size of the pseudocyst it would go away on its own.

How often were your hospital stays?

The doctors had told us that they hoped it was a one-time thing and that I would never have another bout of pancreatitis.  Unfortunately, several  months later I had another and then everyone grew more concerned that maybe more testing was needed and diagnosed me with recurrent acute pancreatitis.  After that, it always seemed when we were getting our hopes up that maybe the last bout was it, I would have another bout of pancreatitis.  The one good thing for me was that for many years, I didn’t have constant pain.  I would go for months with no apparent issues and then I would just have a bout of pancreatitis again.  Every time I had a bout of pancreatitis I wanted so badly to be back in school and get back to soccer, so I would just push through pain and found getting back to normal life as a great way to distract myself until I started feeling better.

What was like life before your diagnosis?

I was a very active kid and loved to try different sports and dance.  My family and I loved traveling with our motorhome to lots of campgrounds and to the beach.  I also really loved boating on my Aunt and Uncle’s boat with my cousins, swimming, bike riding, and being with my family and friends.

What was the hardest part about having pediatric pancreatitis?

Other kids not understanding: The hardest part of having pancreatitis at such a young age was that other kids didn’t even really understand what it was or what I was going through.  I remember another kid saying, “I get stomach aches sometimes too”, but it would be hard to explain that it wasn’t just a stomachache.  It was also hard too when I would go back to school after having missed a few days being in the hospital and all my friends couldn’t understand why nothing could be done to make it better.  I struggled with that too because if you break a bone you can put a cast on it to make it better.  If you have lots of strep infections, you can have surgery to get your tonsils out.  So then when I would try to explain that I had to be on pain medications and rest my gut and wait for things get better, my friends didn’t understand why they couldn’t do anything else to help me.  Honestly, I didn’t know either.

Diet and social settings: Something else that was difficult was, I really loved soccer and played for a club team that traveled for tournaments.  My parents always got nervous being further away from our doctors and on a couple of occasions I took a hard hit to my stomach during soccer games and we ended up coming home from a tournament and heading straight to the hospital and I was admitted with pancreatitis.  I also had to really watch what I ate because it seemed like anytime I ate higher fat meals, I would start to not feel well and eventually I would end up developing pancreatitis.  It was difficult because even going to team dinners if it was planned to have pizza or go for ice cream after a game, I couldn’t eat it because it was too risky that I would irritate my pancreas.  My team was great and they understood I couldn’t eat that stuff, so they would try to find places that had foods or treats that I could eat too.  I always felt bad though because I didn’t want them to go out of their way to change plans for me. Even at school when they had parties that included food, my mom would always try to send in something that I could eat that was as close to what everyone else was having so I didn’t feel weird about it.

Missing school: Sometimes, the bouts of pancreatitis would only last a short time and I would only have to miss a few days of school while I was in the hospital. I remember though in 4th grade, I was in the hospital for an extended time with pancreatitis and it was the first time I missed quite a bit of school.  My teacher would just set aside work and the pile would get higher and higher and by the time I was able to start working on it, it felt like it was impossible to catch up.  To get caught up, it meant I would have to be at school all day and work on catch up work all evening.  It was a struggle because I wasn’t feeling well recovering from the bout and I barely had time to rest trying to catch up.  I was 9 then, and that’s the first time I realized how much stress having pancreatitis was on my everyday life.  The school was great though and helped to develop a 504 plan for me to help outline how to help me go caught up and back on track at school after missing for illness.  It’s been harder to keep up as school work has gotten harder, but my school has always been good about planning meetings and talking about ways to help me get caught up.

Communication with physicians: It’s always difficult too going into an emergency room with pain as a primary complaint and explain that this is the same pain you’ve had during every other bout of pancreatitis and have doctors  say “it’s probably a just a virus” or “let’s do some X-rays to see what’s going on”.  We would spend a lot of hours waiting for the testing to only confirm simply by lab work, that yes I did indeed have pancreatitis again.  I started feeling like doctors weren’t listening and my parents starting worrying that the doctors were also ordering a lot of unnecessary testing.  Also, it took a long time to get the results so often I was suffering in pain and vomiting waiting for any medications to be ordered to help with the symptoms.  Things changed when I started working with a Pancreatic Specialist, Dr. Sohail Husain at UPMC Children’s Hospital of Pittsburgh.  He listened to me when I said that it was difficult going to the emergency room and he started implementing a plan for me so that if my symptoms were presenting like pancreatitis, I would get immediate labs ordered to check amylase and lipase, they would get fluids started and would give medications like Zofran to help with nausea right away and to help keep me more comfortable until the lab results came back.  It was better because a plan was in place so that treatment wasn’t delayed and only had the tests I needed.

How did your pancreatitis change as you got older?  

As time went on and when I was 13, I started to struggle more with discomfort and Dr. Husain decided to do a CT scan and see how my pancreas looked.  Unfortunately, it seemed my pancreas was deteriorating more than we thought, and a lot of calcifications had formed.  I also had a large calcification in my pancreatic duct that was obstructing the flow from the pancreas.  I was then told it looked like I had chronic pancreatitis.  I had been told many times that someday I could possibly be a candidate for a total pancreatectomy with islet autotransplantation (TPIAT), and it was decided then to proceed with that evaluation.  I completed the evaluation process with Dr. Abhinav Humar and Dr. Armando Ganoza, Transplant Doctors at UPMC, but before I could finish, I ended up admitted at Children’s Hospital with a lot of pain and vomiting.  Dr. Humar discussed with my family other surgical options that could be performed for the blockage in my pancreatic duct, but also that we could consider going ahead and proceeding with the TPIAT surgery.  It wasn’t typical to proceed with that surgery while actively sick and it was best to wait until things had calmed down, but I wasn’t getting any better and it seemed like options were limited to help me.  Dr. Husain presented all the information about my history and current status, and the transplant team discussed my case and decided to approve me to have the TPIAT.

The surgery was performed on January 26, 2016. Unfortunately, the doctors found during surgery that although I wasn’t diabetic prior to the removal of my pancreas, that my pancreas was in worse shape than what the testing revealed, and I had a lower than expected yield of islet cells to transplant into my liver.  The surgery was successful and I no longer have pancreatitis pain. I do require some insulin now over 3 years later, but it is a very small amount compared to most who are diabetic.  Unfortunately, after the surgery, I developed symptoms of dysmotility and intestinal failure of my intestines and stomach that appears to have been an underlying issue that I had been dealing with since I was a baby.  It probably became exacerbated by the major surgery involved in the TPIAT.  Since then, I’ve had 7 more surgeries for obstructions, feeding tube placements, etc.  I’m currently working with the Intestinal Care and Rehabilitation Team at Children’s Hospital of Pittsburgh and more recently have undergone motility testing with Dr. Leonel Rodriguez at Boston Children’s Hospital.  Dr. Rodriguez is working to develop a medication plan to hopefully improve my intestinal motility.  I’m currently on total parental nutrition (TPN), but the hope is that we can wean it over time and help me get back to eating again someday.

Any illness will take a toll on you mentally and physically.  For kids/teens that are living with pancreatitis as well, what piece(s) of advice would you tell them to help them get through this?  What would you tell patients?

My advice would be to never stop fighting and don’t give up hope that things will get better.  Also, find a passion that can help to inspire you to keep fighting and to get back to doing something you love.  I do believe my passion for soccer really helped to keep me well over the years of having pancreatitis.  I wanted to play so badly and be with my team, that my desire to play would push me to get out of bed even though I still wasn’t feeling well,  get back outside with my soccer ball, and get back to soccer field with my friends and coaches.  It was always concerning playing soccer because getting hit hard in my stomach would often result in me developing pancreatitis, so I found a shield to wear to lessen the impact and would even duct tape it to my skin so I could play.  Often, doctors would question whether or not I should continue to play out of fear that getting hit might be irritating my pancreas or that the intense workouts might have been too much.  Honestly though, I just loved it so much that it was a worse option to stop it all together and I did everything I could to continue to play.

Also, take advantage of the supports you have while admitted in the hospital.  Pain is such a hard thing to deal with and I’ve learned over the years of trying to cope with pain that distraction can really help.  I have an amazing Psychologist named Dr. Beth Logan who has really helped me to learn coping strategies for dealing with pain and also provided an outlet so I can talk about issues and how I’m feeling and coping with everything.  Also, Child Life Specialists offer so many things to help with coping and distraction on the units of hospitals, as well as help with events.  Making an effort to participate in those things as best as you can, is just another way I’ve found distractions from pain and nausea and continuing to push through tough times.

I remember when I was 9 and was admitted to Children’s Hospital of Pittsburgh and pet friends would come by and offer to visit with the dogs.  When you’re feeling so poorly, it’s hard to even want to do anything but shut your eyes and try to sleep.  I remember realizing how much a visit from dogs could help when a pet friend volunteer named, David Anderson brought his greyhounds that he adopts from Spain into the room to visit me.  I was truly feeling miserable and had not been out of bed for days and he offered for me to walk his beautiful greyhounds Layla and Gladys around the unit.  With some encouragement, I decided ok, I’ll try.  After a couple laps I realized that yes the pain was still there, but it felt good to move and I felt better just doing something fun and something that felt normal.  To this day after years of visits with him and his wife Marci Bodner, and their amazing greyhounds, they’ve become like family and are a great support for me while I’m admitted to the hospital, undergoing testing or at outpatient appointments.  I’ve gotten to know so many wonderful dogs and owners over the years and they truly have all become like family.

For you personally, what has helped you the most during your pancreatitis? 

Having supportive friends who have been there through it all and understand.  My friends have done everything from putting my soccer number on their hands when I couldn’t be with them at games, to visiting me in the hospital for some laughs.  My friend Megan Park has coordinated numerous things to lift my spirits during hospitalizations over the years.  Once, her and her mom coordinated our soccer team purchasing and wearing t-shirts that said #LaurenStrong and my soccer number 26 to wear at all the soccer games that I couldn’t be at during my recovery from the TPIAT.  Also, Megan coordinated recording videos and took pictures at school of teachers and students wishing me well after my TPIAT with a campaign she called #LaurenStrong.  They sent me the video and posted the pictures on social media during my recovery to encourage me to keep fighting to get better.  Megan also recently organized the #LaurenStrong 5K family fun Run/Walk to benefit the National Pancreas Foundation in my honor as part of her senior project.  Not only was it a great way to raise money for the NPF, it was also an amazing chance for me to get to see lots of friends and family all come together in support of myself and my family.

Megan Park: “Lauren has always been such a positive girl and she is always there for me, even when she is going through tough times of her own. It’s difficult when one of your best friends is going through so much and you can’t fix it. I just wanted to do something to show Lauren how inspiring her strength is and how much I appreciate our friendship. Lauren and I have been neighbors for a very long time. I think we became friends at age six. I never knew what pancreatitis was when we were little. I was so young and I just knew Lauren was in pain a lot of the time. Now that I’m older, and know more about it, I realize how much Lauren went through and what she continues to battle. No one her age should have to go through what she’s been dealing with.”

My parents and brothers have also been a huge support for me by being with me during hospitalizations and over the years we played many board games and watched movies and did anything to help distract me from pain during pancreatitis.  Also, my extended family has been a big inspiration in me continuing to fight to get better and offering help and coming to the hospital to celebrate many birthdays and holidays while I was admitted so I didn’t miss out.

Another thing that has really helped me is to work with the doctors that listen and make me feel supported.  I’ve learned over the years that some doctors don’t always listen, and it sets up a difficult relationship because if they aren’t listening to what I’m saying, then how can I trust that they’re making good decisions for my care.  I’ve found this to be the case a couple of times over the years with different specialists and what I’ve learned is that as soon as I separated myself from them and focused on working with a provider who listened, I’ve seen positive changes in my medical plan and improvement in my health.

How did you and your family learn about the National Pancreas Foundation?

Dr. Husain was always opening my eyes to opportunities to advocate and participate in NPF events.  One of my first experiences with NPF was when Dr. Husain invited myself and my family to attend a bowling fundraiser.  I turned the event into a team bonding activity for my soccer team, and encouraged all of them to attend and donate.  It was so much fun that we attended again the next year and raised even more money for the NPF.  Then, I was honored to receive the Hero of Hope award at the Courage for a Cure Gala on June 24, 2016 at Heinz Field in Pittsburgh, PA.  Megan Park attended all these events with me as well, and I believe it helped to inspire her to want to plan an event like she did with the 5k to raise additional money for NPF.  I’m thankful to Dr. Husain for opening my eyes to opportunities to participate in events with others who have had similar struggles and similar family issues dealing with and coping with pancreatitis and pancreas diseases.

What’s next for you now that you are living life (less) pain (and pancreas) free?  Do you want to keep on playing soccer?
As far as soccer, I’ve always wanted to play soccer someday in college, but with all the continued issues with my health, it’s not been possible to continue to play competitively. Luckily I still have my close friends from the school soccer team and I’ve become their biggest cheerleaders. I’ve also been asked to help keep stats for the soccer games of my high school girls soccer team so I can still be there with them. I also love to help my brother warm up for soccer games and play a pick-up soccer game from time to time with friends. Although I haven’t been able to continue to play soccer at the same level, I’m finding ways to keep myself involved in the sport I love.

With all the surgeries and continued medical issues that I’ve been battling, I have school work that I need to catch up on and graduation to look forward to. I hope to continue my education and become a Pediatric Nurse someday. During all my hospitalizations, the nurses at Children’s Hospital of Pittsburgh have been so loving and supportive through some really tough days. They’ve taught me that laughter is the best medicine, and I hope that I too can become a Pediatric Nurse so I can carry on what I’ve learned from them to help other kids like me battling illness.