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. 

Tuesday, April 23, 2013

Tropical Habitats

Both Will and Joel have had the same second grade animal habitat project at Brookside Elementary. It was assigned by their shared teachers: Mrs. Staples (science and math) for both and Miss Sahlin for Will and Mrs. Thomas for Joel (language arts). Students are assigned to creat a habitat for a selected animal and then write a research report about that animal. Both chose tropical animals that live in regions once visited by their dad. Last night Will completed his report and habitat. His assigned animal was the boa constrictor. Will was very hands on in completing the habitat. He selected the rubber snake from many on-line options, he chose the fake greenery (with Marie at Michael's) and then arranged it, he decided on the log and he helped select some of my photos from my 1994 visit to the rainforest of Ecuador (where boas live) for the background. (Notice Will's grass stained knees from his recess playing).

The river in the background is a tributary of the Amazon. In the distance are ripples from just surfaced fresh water dolphins.

Four years ago, Joel chose to study Orangutans (an Indonesian word meaning person-orang of the jungle-hutan). The back drop and forest floor for his habitat were selected photos from my 2005 trip to Borneo (Kalimantan Barat) where I was able to explore a national park where Orangutans live--never did see one.

Thursday, April 18, 2013


 A photo shoot by fashion consultant Will in which he tried to help Sarah with attractive scarf arrangements. (This was not Sarah's choice of a photo--she would have liked to remain anonymous).

Last summer during a visit to the doctor during a mean bout of pneumonia, a routine check of Sarah's blood pressure came back unusually high. It was dismissed as perhaps related to the pneumonia. Then in January, during a check up for the flu, her blood pressure was again abnormally high. The on-call physician recommended that we get her blood pressure checked so Marie made an appointment with our pediatrician Dr. Adams. He was booked for months, but once Marie explained the blood pressure concern we were bumped up.

At that February 25th appointment a surprised nurse took Sarah's blood pressure three times just to make sure she got it right, a second nurse then tested it and then finally Dr. Adams checked it multiple times. Each time came back high (around 155/110). Sarah runs regularly, eats well, is not over weight and does not consume lots of salt, so Dr. Adams suspected that something else was amiss. He referred us to Dr. Meredith Seamon at Primary Children's Hospital in Salt Lake City. She is a pediatric nephrologist (having to do with kidneys).

Prior to meeting with Dr. Seamon, Sarah had blood and urine tests and a renal ultrasound (which showed one of her kidneys a bit smaller than the other). After meeting with us for an hour, Dr. Seamon prescribed medication to bring Sarah's blood pressure down, the initial two medications (for normal blood pressure problems) did not work. Sarah then had to wear a blood pressure cuff for 24 hours which took readings every 20 minutes--beeping during both sleep and sacrament meeting. That information confirmed that the medications were not working and so Dr. Seamon dropped one medication and added another which after a few adjustments of dosages and timing have been doing the job. Dr. Seamon then scheduled a MIGB scan where radioactive matter was injected into her body and then tracked to see if it would attach itself to a possible tumor. That scan came back normal--no visible tumors. Next step was a 24 hour urine test. That test confirmed earlier blood and urine tests which showed that Sarah's body was secreting a hormone (norepinephrine) to try and rid itself of the mass and that hormone was adversely effecting her blood pressure. Next step was to schedule an MRI.

That happened yesterday. While lying still for nearly 90 minutes, Sarah got to watch Harry Potter 3 via special video goggles. This afternoon Dr. Seamon called with the results of the MRI. It showed two "highly suspicious nodular masses" each about 2 cm in length near her left kidney and her spine. The masses are referred to as paraganglioma. If they were attached to her adrenal glands then her illness would be called pheochromocytoma (what was originally thought to be the problem). Both illnesses refer to similar masses/tumors. The next step is to meet with a pediatric surgeon and then have the masses removed. Once removed it is assumed that Sarah's blood pressure will return to normal. Throughout the ordeal, Sarah has had no other symptoms or pain. The one concern is that according to Wikipedia (read more here), there is a 3% chance of the mass being cancerous. For now we will keep Sarah at the top of the prayer roll hoping for a successful surgery and no malignancy.

Tuesday, April 16, 2013

Standing Ovation

Marie and the kids with their cousin Isaac Pritchett prior to his leaving last month to serve a LDS mission in the New Hampshire, Manchester Mission.

Reading skills for Sarah and Joel came easy and came early. Will has been another story. Reading has been a challenge for him. Part of his problem has been his impatience at taking time to sound out long words. He can do it, he just doesn't like to do it.  Last week we started reading the Book of Mormon again as a family. Will always starts out by reading the first verse. As recent as just a few months ago, his scripture reading skills required significant help and promptings from his mom or dad. Happily his second grade reading skills have made remarkable improvement over the past few months.

Tonight, without even a stammer, he sailed through this verse:  "And it came to pass that when Laman saw me he was exceedingly frightened, and also Lemuel and Sam. And they fled from before my presence; for they supposed it was Laban, and that he had slain me and had sought to take away their lives also" (1 Nephi 4: 28). 

Will didn't even flinch at "exceedingly frightened"! Wow! I immediately gave him a high five and then Joel, followed by Sarah and finally Mom (who has been a tireless reading coach) gave him a standing ovation. Will sat on the couch and smiled. Happy day.

click here to see the illustrated story

Wednesday, April 10, 2013

Dutch Latter-day Saints in the Dutch East Indies

 On and off for the past 12 years I have been gathering information for a book I am writing on the history of The Church of Jesus Christ of Latter-day Saints in Indonesia. In the past year a whole new section for my book has emerged as I have learned about Dutch Mormons who lived in the port city of Surabaya from 1915-49. I have interviewed three of these Saints who lived as children in Surabaya while their fathers served in the Dutch navy. They have mentioned other Mormons and provided some information about them. If any readers of this blog recognize some of the names and can provided additional information I would be very grateful. Of particular interest is knowing more about Surabaya converts Grace Vermeulen and a daughter in the Mann family and the experiences of Gonda Steijn and Jan Schuitema.

Here is part of what I have written:

The deep water port of Surabaya (Soerabaja) on the northeastern coast of Java was the main center for Dutch naval operations. It was also the first place where Latter-day Saints congregated and held religious services. These saints were Dutch mariners and their families who were stationed in Surabaya during the final decades of the Dutch colonial era.
The first known Latter-day Saint to live in Indonesia was Dutch navy machinist Pieter Vlam. He converted to the Mormon Church in April 1911in the Netherlands at age 15, just months before graduating from high school and then entering the Royal Netherlands Naval College. After three years of naval training, Vlam began his first three year tour of duty in the Dutch East Indies in August 1915. Always a missionary, Vlam preached the gospel to friends in Surabaya.[1]
One of those friends may have been mariner Ari Jongkees whose first tour of duty in Surabaya began in 1917. Back in the Netherlands at the navy base in Den Helder, Vlam, who was now an ordained elder and president of the Den Helder Branch, continued, or perhaps began, to teach Jongkees about the church which lead to his baptism in 1923. Jongkees’ second tour of duty, now as a Latter-day Saint—lasted from 1924-26. Vlam’s second tour of duty in Surabaya, in which he oversaw the test-driving of the new K-10 submarine, was during this same period of time. It is very likely that these two friends and brothers in the gospel joined together for religious meetings during their stay in Surabaya.
In 1928 Arie, his wife Jacomina and their two children Paul and Els sailed to Surabaya for his third posting which would last five years. Daughter Jeannette was born in Surabaya in 1929.  Jacomina never joined the church and it was only later in life that three of the four Jongkees children joined.[2]

  Jacob and Petronella Hendrikse

In 1928, the family of Jacob and Petronella Hendrikse also moved to Surabaya for a six year posting. Petronella converted to the church while living in Rotterdam. When she married Jacob he was a widower with two young boys. Jacob’s grandmother was Mormon, but it was the influence of his wife that finally brought about his baptism. In 1927, soon after getting married and being baptized, Jacob was assigned to serve in Surabaya. Once there he realized that it was possible for his family to join him so a year later Petronella along with eight year old John and three year old Jacob Jr. sailed to Surabaya. 
Jacob Jr., Petronella and John Hendrikse

In their home in the Darmo area of Surabaya, Petronella made sure that Sunday services were held. Jacob had not yet been ordained to the priesthood so he was unable to bless and pass the sacrament to his family. At some point, the Hendrikes family linked up with Ari Jongkees and when he was in port he was able to officiate in the ordinance of the sacrament. Jacomina Jongkees did not attend the services and neither did her children. At some point during 1928 in the home of Jacob and Petronella Hendriske the first known LDS Sacrament meeting was held in the islands of Indonesia.[3]
  The Hendrikse family
Arie Jongkees noted in his journal that during this time the Mann family also met with them for services and that he baptized the Mann daughter. This girl is most likely the first Latter-day Saint to be baptized in the land of Indonesia.[4]
The Hendriske family returned to the Netherlands in 1934. That same year, Pieter Vlam returned to Surabaya for his third tour of duty. Following his second tour in the East Indies, Pieter was assigned to work in a Swiss factory overseeing the manufacturing of machinery for Dutch submarines. He was encouraged to take the assignment in Switzerland by the Dutch mission president who told him he might meet his wife there. That he did. She was Hanna Gysler, the branch organist who at age 14 had joined the church with her mother. A few years later, when Pieter was assigned again to Surabaya, he was allowed to bring his wife Hanna and their two young children, Grace age three and Heber age one.
For the next four years, the Vlam family held church services every Sunday in their home at Bengawan Street 29 in the Darmo district. 
 The Vlam home

Brother Vlam would administer the sacrament and Hanna would play the piano. The couple also taught a Sunday School class for their two children and invited the children of several other Dutch navy friends to attend with a promise from the Vlams that they would stick to teachings from the Bible. In addition to this Sunday School class, Pieter also taught the Vlam children separately so that they would know how Mormonism differed from other Christian sects. One of these lessons about baptism and the proper authority to baptize made quite an impression on young Grace. Not long after this lesson, the Sunday School class had a lesson from the Bible about the baptism of Jesus. Afterwards, Grace (around six years old) expounded a little more on the topic of baptism and told the other Dutch children that they could not be baptized unless it was by the right authority and only her dad and the Mormon Church had the right authority. She must have been quite persuasive in her preaching for the children went home and told their parents they wanted to be baptized into the Mormon Church! The parents were not as accepting of this baptismal challenge and accused the Vlams of going against their word. Things were soon sorted out when it was discovered that young Grace was the one doing the missionary work and all was forgiven.[5]
The one baptism that did occur was that of Grace Vermeulen on May 2, 1937, by Pieter Vlam.[6]
Grace remembers this time in the East Indies as “golden.” Her father liked it too and tried to extend his tour of duty, but because of a superior officer, who “hated Mormons” and who worked hard to destroy Vlam’s career, the Vlam family, now including baby Vera who was born in Surabaya, felt that their only option was to return to the Netherlands. Luckily, they were granted special permission to return the long way via Salt Lake City where they were sealed in the Salt Lake Temple in June 1938.[7]
The Vlam family sailing across the Pacific en route to the Salt Lake Temple

That same year the Hendrikse family returned to Surabaya for another tour of duty. Jacob Senior had spent the previous year in Germany to learn about propeller making. There he witnessed firsthand the growing militarization of Germany. When he returned to Holland he jumped at a chance to go back to the East Indies to get out of the brewing European storm. They again set up house in the Darmo district, but then eventually moved south to Lawang which was up in the hills and therefore much cooler. By now two more sons Johannes William (born in Surabaya in 1930) and Cornelius had joined the family. The one other Mormon in the area at this time was Sister Gonda Steijn. Her husband (also with the Dutch Navy) was not a member.
The Hendrikses were still stationed on Java when the Japanese invaded in March 1942. Oldest son John had joined the Navy in 1937 and Jacob had joined the Marines (the only military branch that would accept a 16 year old) in 1941. Jacob was taken prisoner at the battle of Jombang. He was on the last line of Dutch defense before being over-run by the Japanese. John was stationed on a destroyer that was sunk during a battle on the Java Sea. He was picked up by an allied ship and returned to Surabaya. From there he went back into battle on another destroyer. That ship was sunk near Bali and John was also taken prisoner by the Japanese. Jacob Senior, whose job it was to keep the propellers operating on PBY sea planes, was taken prisoner in Cilacap—from where Dutch soldiers were attempting to sail to the safety of Australia. 

Jacob Jr., John and Jacob Sr.

Following the fall of Java, Petronella and the two younger boys who were still living in Lawang were taken by the Japanese along with Gonda Steijn and her two children. These two Mormon women and their children were held for the rest of the war in a civilian prison camp on Java. While never talked about, Petronella experienced physical beatings that left her nerves damaged and severely restricted her ability to walk in later years.[8]

The Steijn Family 
Jacob Sr. spent the rest of the war in a Japanese camp in Palembang on Sumatra. Young Jacob Jr. sailed on a “Hell Ship” to Singapore where he coincidentally ran into John. The two brothers were then sent to Burma where for over two years they worked together on the Japanese railroad made famous in the movie “The Bridge on the River Kwai.” During this time John died (age 23) of what Jacob thinks was a combination of malaria, malnutrition and beatings. Jacob then spent time building airstrips for the Japanese in Thailand. With the end of the war, the Hendrikses all returned to the Netherlands where Jacob befriended and then eventually married the fiancĂ© of his deceased brother John.[9
 Jacob Hendrikse Jr.
While the Hendrikse family was dealing with Japanese internment, back in the Netherlands Pieter Vlam was arrested by the Germans and interred in several German prisoner of war camps.  During his captivity he openly talked about his religious beliefs which resulted in several conversions, including Paul Jongkees who as a child in Surabaya had known Pieter Vlam. Another POW who liked what he heard was Jan Schuitema. After an early release due to illness, Schuitema returned to Holland where he was baptized. After the war, he moved to Surabaya with his wife Ingrid and their children where services were once again held in a Mormon home. Occasionally a fellow Dutch solider named Adrian VanderHoeven would travel from Mojokerto to meet with them on Sunday. He had joined the church in the Netherlands in 1947 along his brother Ludy (who would later serve as the first branch president in Jakarta). During his posting on Java, Vanderhoeven “again experienced the anguish and cruelty of war.”[10] The Schuitema family left Surabaya in1949 when the Dutch withdrew from Indonesia thus bringing to a close a two decade long presence of Mormons in Surabaya.[11]

[1] November 29, 2012 letter from Grace Vlam, based on a three page typewritten resume of her father Pieter Vlam.
[2] Jeannette Jongkees Koning interview. July 3, 2012.
[3] Jacob Hendrikse interview, February 18, 2012
[4] Jeannette Jongkees Koning interview. July 3, 2012.
[5] Grace Vlam interview, May 14, 2012.
[6] November 29, 2012 letter from Grace Vlam, based on a three page typewritten resume of her father Pieter Vlam.
[7] Michael De Groote. Finding faith in Stalag 371. Deseret News, January 29, 2009.
[8] For an excellent description of a Dutch girl’s experiences in one of these camps see Kitty De Ruyter’s As I  Have Loved You (Covenant Communications, 1994). Following WWII, Kitty moved back to the Netherlands where she joined the LDS Church.
[9] Jacob Hendrikse interview, February 18, 2012
[11] Grace Vlam interview, June 28, 2012

Tuesday, April 2, 2013

Popcorn popping on the apricot tree

I looked out the window, and what did I see?
Popcorn popping on the apricot tree!
Spring had brought me such a nice surprise,
Blossoms popping right before my eyes.
I could take an armful and make a treat,
A popcorn ball that would smell so sweet.
It wasn’t really so, but it seemed to be
Popcorn popping on the apricot tree.

Easter morning.