Wednesday, April 24, 2013

Paraganglioma Part 2 plus Gilgal Gardens

Yesterday Sarah, Marie and I met with Dr. Downey, a pediatric surgeon in Provo who is also an affiliate of Primary Children's Hospital. He showed us the results of Sarah's MRI from last week. Easily seen nestled next to the spine and below the left kidney were two small masses/tumors. He was surprised at how small they were. He was very good at explaining everything and answering our questions. We left with a plan to schedule surgery at Primary Children's Hospital on the next available Wednesday.We need to do it at Primary Children's because Utah Valley Hospital in Provo does not have a pediatric intensive care unit--which is needed for Sarah's operation. During the operation it is possible for the tumors to excrete extra nor-epinephrine hormones which could spike her blood pressure or once they are cut out and the hormones cease Sarah's blood pressure could dive--hence the need for an intensive care option. Primary Children's also has all the needed pediatric anesthesiologists, oncologists, and nephrologists.

This morning, Marie took Sarah to a 6:30 AM appointment--necessitating a 5:00 wake up--at the Intermountain Medical Center in Murray. There she had a PET scan which uses radioactive materials that identify areas in the body that are using high amounts of sugars like the brain, heart and tumors. This final test was done as an added precaution to make sure that all tumors had been found. After getting Joel and Will to school, I then met up with them at the new Trader Joe's in SLC where we bought some fun snacks--Sarah chose fruit leather and peanut butter cookies. At this stage of the game and after being so pleasant through so many tests and scans and blood pressure readings, I was game to buy her anything that she wanted. We then had an hour to kill before our next appointment so we went to visit Gilgal Gardens near Trolley Square. I have read about this unique sculpture garden on various occasions, but had never taken the time to find it or visit it. I  knew that Sarah would enjoy something quirky, artsy and relaxing. An added bonus was that it was a beautiful sunny morning after many cold and rainy April days. We all enjoyed our visit.

The official web pages click here gives this explanation:

Formerly the secret garden of Salt Lake, Gilgal Sculpture Garden is now a public city park, open daily for the enjoyment of all

Located at 749 East 500 South in Salt Lake City, Gilgal Sculpture Garden was envisioned, designed and created by Thomas Battersby Child, Jr. in the mid-twentieth century.

Tucked in the middle of the block behind houses and businesses, many are still unaware of its existence and enjoy a true sense of discovery when they visit the garden for the first time.

Gilgal Sculpture Garden contains 12 original sculptures and over 70 stones engraved with scriptures, poems, and literary texts. As a whole, Gilgal Sculpture Garden is significant as the only identified "visionary art environment" in Utah.

Wikipedia article click here

Here are my photos of the garden. 

A circle of twelve stones in commemoration of the twelve stones carried across the Jordan and placed at Gilgal by each of the Twelve Tribes of Israel.

Joseph Smith Sphinx

Swords into plow shares

A list of sacred places.

Next stop was the cancer unit at Primary Children's Hospital. What a touching, moving, hopeful place. Children and their parents coming and going--each, I'm sure, with a story to tell. In our waiting area were two young children with no hair. The area included a large hat rack with free hats (in all shapes, styles and sizes) for children to take if needed. Sarah endured yet another weigh in, height measuring (she always hopes it will show she has grown) and blood pressure measurement. She then cheerfully explained to a nurse, then a social worker and then the two oncologists about how she came to be there. The oncologists (Doctors Wright and Elderedge--both women) pulled up the PET scan images and explained that the bright spots were sugar consuming spots. They showed us the heart and the two known tumors--which were both quite bright. They then scrolled upward from the tumors to a medium bright area, not too big and not as clear cut. They explained that this might be another tumor, perhaps an extension of the other tumors or maybe part of a lymph node in the small intestine area. BINGO, the scan did its job. Now when Dr. Downey operates he will take a closer look and if necessary remove one more thing. This finding now means that the laparoscoptic option is less of a likelihood with a regular incision being used so that the doctor can see and feel the new whatever it is and then decide if it too needs to be removed. 

Stay tuned for an operation report and for a hopeful all clear diagnosis. Thanks to so many people for their continued faith and prayers. 


  1. We'll have to go to Gilgal Gardens sometime. What a felicitous choice.

  2. Wow! Sarah is such a trooper. And so are her parents and siblings :) despite all the doctors visits it sounds like it was an enjoyable day! Thanks for the updates.

  3. Still in our prayers, and adding my thanks for the updates. I'm all in favor of quirky gardens. I'll have to check Gilgal out for sure. Go Sarah!

  4. Prayers for a successful surgery go with Sarah and her family!