Monday, May 30, 2011

Solid Pseudopapillary Neoplasm

That was the diagnosis we heard regarding a large tumor on my daughter's pancreas.  But let me back up...

At the end of March, my 21 year old daughter had what we thought was the stomach virus.  Thursday, March 31st, she had about 12 hours of severe vomiting but it got better and she was fine all weekend.  Monday afternoon, she called me from school that she was sick again and I told her to come home if she couldn't make it (she commutes 30 miles from home).  She vomited 5x on her way home and continued to vomit until around 3 am.  I had been ready to take her to the ER but she was feeling better so we let it go.  Thursday, April 7th found her vomiting again, waking me up at around 6:30 in the morning that she was sick again and now her right side hurt so I thought maybe it was her appendix so off to the ER we went.  She continued vomiting while we were there and it was after her CT scan that we learned more.  She had torn a hole in her esophagus from vomiting so severely and she had air in her chest.  She also had a hemangioma on her liver but that was most likely nothing to worry about.  Her gallbladder showed a gallstone and some sludge in it and the big issue was an 8.5 cm mass on her pancreas.  HUH?? WHAT??? MASS ON HER PANCREAS??  This was the beginning of a long road.

Our hospital is a decent local hospital but this mass was too much for them so they decided to transfer us to a larger hospital on Long Island.  However, since it was Thursday afternoon, it was really not worth transferring her at this point because they would do nothing on the weekend for her so it was decided that she would stay at our hospital.  This was a great blessing because the hospital was close to home (20 minutes away) and since she was just 21, they put her on the pediatric floor which was very quiet all weekend.  Another blessing was that a friend of mine was the nurse on overnight and I felt as comfortable leaving Lauren with her as if she was my own mom.  The whole time Lauren was at this hospital, she continued to be very ill with severe vomiting and they were giving her so much medicine to try to stop it so that her esophagus could heal and that she further wouldn't injure it.  They finally gave her ativan, which totally knocked her out but also knocked out the vomiting quite a bit.  This was her first period of time that she was her sickest.

As the weekend progressed, we really were getting a sense that we should do some homework and find her a good - no GREAT doctor.  We had no idea how to go about this but in the end, after speaking to people and doing online research, we decided we wanted her in New York Presbyterian.  We told the gastroenterologist and he did what he could.  We found out within hours that Lauren was accepted into New York Presbyterian and their Pancreas Center.  Praise God!!  Even the pediatrician on the floor let out a "YES" and pumped his fist when he heard this.  So it was just time to wait on a bed.  Within 24 hours, she was in an ambulance being transferred to the city and our time at New York Pres/Columbia Medical Center began.

We got there late - around 11 pm and quickly got settled in a room.  I ended up staying with Lauren because I just didn't know what was going on there yet and all through the night, I was getting info on Lauren's next step.  I met the gastroenterologist on Tuesday morning (she had been transferred on Monday night) and she went in for what is called an EUS (endoscopic ultrasound).  What they did was to do an endoscopy where they put Lauren to sleep and put a camera down into her stomach and from inside her stomach, they used a needle to get a few samples of the pancreatic tumor to find out what we were dealing with.  The gastroenterologist was pretty sure we were dealing with a solid pseudopapillary tumor but without the biopsy, we couldn't be sure.  After the procedure, the doctor came out and said "It's not what I thought it was.  I'm not sure what it is but I don't believe it's cancer."  We had to wait a few days to get the results of the biopsy but on Wednesday, the doctors were speaking of sending Lauren home because she was not ready for surgery.  You see, it seems that she had a reaction to the CT contrast which affected her thyroid which sent her heart rate through the roof (just moving in bed would send it to 170), and they were also not comfortable doing general anesthesia where they would have intubate her (put a tube in her throat to help her to breathe) and possibly further damage the esophagus.  They decided to send Lauren home on Thursday and we would follow up locally with an endocrinologist who could watch her thyroid levels and when she was stable, we'd go back in to the hospital.  So home we came with strict instructions for Lauren to rest.  It was great to have her home again but we still had to face the hurdle of the surgery.

One prayer we had during this time that Lauren was home was that she would be able to go back into the hospital easily because these doctors were not on our insurance and we would have had to try to get them to accept us going there again.  Well, Monday morning after Easter (about 10 days after she was released), Lauren woke me up at 2:30 in the morning with severe nausea and pain.  I figured it was probably the gallbladder and told her to try to make it through but finally at 3:30 am, we left for New York Pres.  It made no sense to go to our local hospital because I knew they couldn't do anything for her and ultimately, we wanted the doctors who already knew her history so it was a no brainer to go back to NYP.  After 14 hours in the ER, the doctor said that it WAS her gallbladder and that she could go home to continue recovering but then the surgeon and gastroenterologist stepped in and said WAIT!!!  We want her admitted so by 9:30 that night, she was in a beautiful room overlooking the Hudson and the George Washington Bridge.  Man, we had NO idea we'd be there for over 2 weeks!!

Tuesday morning, we saw the surgeon and he said that Lauren would have her surgery the next day since she was there and ready.  Wednesday, the surgery went well, although it took them 2 hours to get big enough IVs in her because she has such tiny veins!  They finally had to put in a central line (an IV catheter in the jugular vein) in order to do the surgery!  But the tumor and a few centimeters of pancreas were removed (the tumor was in the tail of the pancreas), her spleen and gallbladder were removed easily.  She lost very little blood - just 5 oz. according to the surgery report!!  She woke from the operation and did very well for the first few days.  Wednesday was still nothing by mouth, Thursday was clear fluids which she tolerated well and finally, Friday found her eating real food.  This was the beginning of "hell week" for her.

After eating a lunch of turkey and green beans, Lauren started vomiting.  Basically, she vomited steadily for the next week, not being able to keep anything down.  For a time she could keep liquids down but even that stopped staying down by Tuesday.  Many tests were done to try to figure out why she was having such a hard time but nothing showed up that would cause this sort of vomiting!  Tuesday was her worst day and everyone on the floor would come in to see if she needed anything - all except her nurse.  For some reason, that was the day we had a terrible nurse and I was sure to report her because there was just no excuse for how we were treated.  We were not treated meanly but were almost ignored and it was not a good thing at all.  So, anyway, by Thursday, she had kept nothing down for a whole week and it was decided to put in a PICC line (a "super IV" that has a catheter that goes in your upper arm and goes to a larger blood vessel near your heart) so that she could receive TPN (supplemental nutrition through the IV).  It was bad.  Friday morning, Bob called me and told me to get her to think about other things by playing the Bible on iPod or something but I told him that all she was doing at this point was sleeping (because she was now on ativan every night which makes one very sleepy) and he broke down.  He was so upset and worried that she might die so he decided he was coming in too.  Up until now, I was the one who was in the hospital most of the time and he would come in some days and would spell me on Saturdays so I could rest and get some things done around the house.  So he came in the late afternoon and told me that a friend was coming in as well and we'd pray over Lauren and anoint her with oil as per James 5.  Jim got there around 9:30 and we all prayed over Lauren and Bob anointed her and we said "goodnight".  I asked her to take a sip of some chamomile tea I had made for her but she said she was afraid because it would come up again.  That broke my heart.

Saturday morning, Bob went into the hospital early and walked in around 8:30 am to Lauren eating an Italian ice and having some juice!!  The doctor came in a short while later and said, "Something changed last night and we don't know what it was."  Lauren was doing MUCH better!!  The doctors were amazed and told me the next day (Sunday) that they have no idea why Lauren was better but she was.  It was so clear!!  They disconnected her from the TPN on Monday morning and by Tuesday morning, we just had to wait for them to remove the PICC line and she was released!!   Her stomach was still sensitive to things and she had to be careful, and we went home with prescriptions for the two meds that seemed to help her (reglan and nexium) but she was seriously better!  We came home Tuesday and Lauren vomited Wednesday morning when she took the reglan (an anti-nausea med) on an empty stomach and then she vomited again on Thursday morning when she ate too much oatmeal but that was the last time she vomited!

A week after she was released from the hospital, we went back in for her check-up with the surgeon and for her to get some innoculations she needed since she lost her spleen.  The doctor once again said that he had no idea why she got better and he felt that the vomiting issue was not part of the surgical issue but he still had no idea what it could be from.  She got a clean bill of health and she should no longer need to go into NYP.  We got her in with a local internist and I had her see the doctor on Thursday of that week so that we have an established relationship should anything happen.  If Lauren gets any infections, she needs to go on antibiotics quickly so having a doctor that knows what's going on is important.  In the future, she will need to have a yearly CT scan to make sure that there is no re-occurance and that she stays healthy.   The solid psudopapillary neoplasm - what the tumor was - is not benign but it's not yet cancerous.  From what we read, in the future it most likely would have turned into pancreatic cancer - probably the most deadly cancer out there.

So the question of the day is:  why all the vomiting??  I do believe that there was a two-fold purpose for that severe suffering Lauren experienced.  First off, without the vomiting, we would have never found out about this tumor.  Who knows how long it would have been before we found it?  When it was cancerous?  When it was risking a pregnancy?  We just don't know but it was a blessing that it was found when it could be treated - and treated by some of the top doctors in the country.  But then the tumor was removed so why did the vomiting continue?  Well, I certainly won't know the absolute answer until I'm standing with her Creator and can ask Him directly but I do know some further purposes it served.  One is that we had to fully rely on God and His comfort.  To hear one of the top pancreatic surgeons in the country say "I don't know what else to do", it's very difficult as a mom.  But we know God.  We know that He is good and we know that He loves Lauren even more than we do.  We so didn't want to lose Lauren but if we did, we knew it was God's plan and that Lauren would gain from it.  We were beyond ourselves during this time and had no place to go but God.  He sustained us through a very difficult time.  Additionally, who got the glory for this girl being better?  Not the doctors, even though they did a wonderful thing in operating on her.  But there is no question at all in anyone's mind who healed Lauren.  It was God.  Clear as day.  We were faithful to the Word of God and God chose to heal Lauren.  It's amazing to think that one Friday, Lauren was so ill that she couldn't drink and Bob was wondering if she was going to die and the very next Friday, Lauren was cleaning her room and arguing with her sister!!  God used that vomiting and severe illness to absolutely bring glory to His name.  What a humbling place to be!!

Since Lauren's illness, so many people have asked how she is.  She's doing great.  You would not know that anything at all was wrong with her if you saw her!  But what I find interesting is that I'm hearing from my friends who work at the hospital how the doctors and nurses are asking about her and they too will be able to hear the story of God's healing when it was beyond the doctor's reach.  We serve a truly amazingly awesome God!!


PamelaK said...

Ann -
What a great idea to put Lauren's story all into one single post. I am so glad she is doing SO well! It is truly God who healed her. He is so wonderful!

Me said...

A nightmare and beautiful story wound together as one. Wow.