Wednesday, July 10, 2013

Paraganglioma Part 3

Sarah checked in to Primary Children's hospital yesterday for the third time--the charm. This time she was at full adult dosage of Amlodipine and Doxazosin which for the past three months have been pulling her high blood pressure down to normal levels. This time her blood pressure did not spike like the first two times and so the surgery went as planned. Surgery was scheduled for 9:30 with Dr. Earl Downey in charge. In our meeting with him he emphasized how serious this surgery could be. The three known tumors could be wrapped around large arteries (their best friends) that would make them hard to remove, blood pressure could jump or dive, and there was a probable cyst on her ovary and some suspicious activity that showed up on the PET scan that needed to be checked out. They wheeled her away at 10:30. It took an hour for Dr. Christine Chen, the anesthesiologist to get a central line inserted into her neck and down to her heart--which would be used to get medication quickly to the heart if her blood pressures started to spike or dive during surgery, and an arterial line into her arm for other meds. She was assisted by a resident whom she said would be a nice extra set of hands if things got dicey trying to keep her heart at acceptable rates. Surgery itself lasted for three hours. Dr. Downey started with an incision from top to bottom of her abdomen. Then they pulled out her intestines and laid them to the side in a protective bag. This exposed the tumor areas. They removed the two large-marble sized tumors near her kidney. They were not attached to big arteries and came out in "text book" fashion. The third tumor was much lower in the abdomen--which is an unusual place for paraganglia tumors. What was thought to be the cyst (as shown in one of Sarah's scans) actually turned out to be the third tumor (as shown in a different scan). It was adjacent to the fallopian tube and ovary which Dr. Downey at first look feared he may have to remove. But the good news (the result of faith and prayers of many) is that this larger-than-a-golf-ball sized tumor was not attached to its neighbors and was able to be removed without collateral damage. When Dr. Downey clipped off the last two small arteries leading into this last tumor, Sarah's blood pressured dived. Her body had been cut off from its more than year long daily supply of norepinephrine--the hormone produced by the three tumors that raised her blood pressure. Dr. Chen responded with a quick supply of that same hormone via the central line to her heart and Sarah's blood pressure stabilized. Dr. Downey then checked on the suspicious unknown matter and found nothing to worry about. He also sight checked for any other tumors or areas of concern and found nothing. A good sign was that with the removal of the three tumors her blood pressure dropped so dramatically which meant that there were very likely no more tumors. After getting things back into place and sewn up, Dr. Chen then insert an epidural so that Sarah would be more comfortable and in less pain for the first few days.

Sarah was then taken to the pediatric intensive care unit so they could closely monitor her blood pressure. Within an hour of the end of surgery her body had adapted its blood pressure and they were able to take her off of the norepinephrine that they were now giving her just in case her blood pressure stayed too low. The doctors were amazed at how quickly Sarah's body and blood pressure returned to its normal non-medicated (either meds to keep it low or meds to raise it up) state.

The surgery was a success but hospital recovery will take 5-7 days. Sarah is connected to many monitors and has many tubes coming from her body--central line, arterial line, catheter, epidural, two peripheral IVs and, her least favorite, a line running through her nose to her stomach to remove fluids (lest she vomit) until her bowels once again start to work. Luckily the mouth tube was removed shortly after surgery.

Resting two hours after surgery.

Blood pressure in red: 109/53. Hamdullilah! (Praise be to God)


One of the many ceiling tiles painted by former patients. This one was above where Marie and I waited (with a dozen other hopeful families with children in surgery) for over five hours. Cheerful children's art work is found throughout the hospital.

Three cheers for all the nice and talented people at Primary Children's Hospital (including nephrologist Meredith Seamon) who have helped with Sarah's diagnosis, surgery and care. 

Growing up I remember donating pennies (a penny for every inch of height) in Primary (the Mormon Children's Organization) for this hospital (back when it was LDS owned--now it is part of Intermountain Health Care and affiliated with the University of Utah Hospitals). My children still make similar donations in Primary today.


  1. Oh, praise the Lord, indeed! It sounds like everything went perfectly! Please give her a big hug from WomanStats!!!

  2. Oh, the power of prayer. So glad it turned out as well as it did. Kudos to Sarah for being so brave and to the medical staff for being so skilled and knowledgable. (Great report by the way. I think you should have been an M.D.)

  3. I have been a little slow to emails and blogs but so glad to hear Sarah is doing well! That was quite the surgery!!!

  4. Sarah I wish you a speedy recovery knew very well how you feel tough experience but you strong enough to fight cancer
    God will not forget us best wishes for You