Paraganglioma Part 4

Mural of Christ and the children--including those who are to be healed--from the third floor lobby of Primary Children's Hospital. I think this was in the original building of the old PCH.


Each day at Primary Children's Hospital saw amazing improvements for Sarah. Tubes came out, she moved out of the PICU, juice and jello replaced occasional ice chips, and by Sunday evening she was ready to come home. She has spent this week taking it easy on the couch from where she reads, watches DVDs and TV shows, and consumes blueberries, raspberries and strawberries to her heart and stomach's content. 

On Tuesday Sarah’s surgeon (Dr. Downey) called with the biopsy report. It is good news. The synopsis is: “there is no sign of malignancy”

Paraganglioma tumors do not show cancer like most other cancers—where cancer cells actually show up in the tissue. The only way you can know if paragangliomas are cancer is if they grow in areas where they are not supposed to grow--like the stomach or liver. Sarah's biopsy confirmed that her three tumors were all in a normal and expected place.

For the rest of her life we will need to monitor Sarah’s blood pressure, if it gets high again we will look for more tumors (it is likely that more tumors may grow), and then we will hope that the paraganglia tumors are just like these three and not in some odd place like the liver or stomach which would then mean that the tumors have metastasized (are cancerous).

Thanks to all of the family and friends who have visited, sent cards and gifts, fasted and prayed.

I recognize that some people are uncomfortable talking about health issues, but part of my desire in blogging about this all is so that it might give hope and information to other people facing the same disease. Back in 2009 when I was diagnosed with prostate cancer I recalled that a former mission companion of mine had written in his family's annual Christmas letter about his bout with prostate cancer. That night I called him and he graciously helped me begin the overwhelming process of trying to decide what treatment options to pursue. I appreciated his openness and willingness to share. 

 Super heroes galore.

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.

The joy of teaching geography to future missionaries

This e-mail in my inbox this morning made my day. It is from Sister Carly Christiansen who is serving an 18 month mission for The Church of Jesus Christ of Latter-day Saints in Lansing Michigan. Several years ago she took my geography 120 (geography and world affairs) class at BYU and then she was an enthusiastic TA for that class for the past two years.

Sister Christiansen is on the right in red with her two companions (one of whom is awaiting a visa for Brazil) and with Bruce from Shanghai on the day of his baptism. She met him on her first day in the mission field. The photo is from Sister Chrstiansen's blog click to view http://lettersfromcarly.blogspot.com/

Hi Professor Emmett!

I've been wanting to write you since getting out here to Lansing, Michigan because it's been amazing to see how much geography has helped me on a mission!

I've always been obsessed with geography and knew it would help me somehow in the future. One of my favorite scriptures is D&C 88:78-80 because it talks about the importance of gaining a knowledge of countries so that we can magnify the mission with which we are called! I used to read that and think, 'Oh, one day I'll for sure get called on a mission to a foreign land and I'll be so grateful for my geography knowledge.' However, when I got called to Lansing, I kind of just thought, 'Oops, I guess that verse doesn't apply to a mission in my case.' I was dead wrong! 

I'm serving in a university ward in East Lansing and my area is the campus of Michigan State University. I have never met so many people directly from foreign countries as I have here in East Lansing! Apparently Michigan State is a big campus for international students and we've been able to see that here. It's rare that we meet someone who's actually from America. I've only been here for a month and so far we have taught people from China, Iraq, Myanmar, Uganda, Saudi Arabia, Yemen, Tanzania, Korea, Rwanda, Nigeria, France, Togo, India, Sudan, and Ethiopia! As a result, I have been able to use geography every single day here. Just last Friday, we met a man on the bus who wasn't giving us much attention. I asked him where he was from and he said, "Oh, it's a little country in the south of Africa, you've probably never heard of it.. It's called Zambia..." and I was just like, "Oh! How far are you from Lusaka?" He was so surprised and was suddenly so willing to talk to us (we got a return appointment!). It's amazing how knowing a little bit about where someone is from can really help them open up to you.

Another similar situation happened that made me directly grateful for your class in particular. We were teaching a less-active member who hasn't opened up to missionaries in a long time. Once again, I asked her where she was from (which seems to be my favorite question besides maybe the invitation to get baptized!) and she said she was from Nigeria. I asked her if she was closer to Abuja or Lagos, and she perked right up and excitedly said, "I'm from Lagos! You know Lagos?" Later on in the lesson, she was talking about how diverse Nigeria is and how it was hard to grow up there. I swear the Spirit blessed me with remembrance and brought something I learned from your class back to my mind. I was just like, "Oh yeah, aren't there like, over 250 ethnic groups in Nigeria or something?" She was so surprised and was like, "Yeah!!!" then went on to really open up to us about her life there. The best news is that she came to church that Sunday!

One last experience that made me especially grateful for your class was with an investigator we have named Rooney. He told us he was from Iraq and was talking about how the conflict there was really rough and how he felt like his people were always being attacked. I wasn't sure who he meant by "his people" so I asked him what part of Iraq he was from. He said northern so I took a leap of faith and asked him if he was Kurdish. He got so excited that I knew who the Kurdish people were. After that, he started tearing up and sharing with us some of the experiences he'd had in war. It really helped him open up his heart to the gospel and he has been progressing ever since!

Sorry for the long stories, but I just wanted to thank you for being such a great professor. You can tell your class that if they ever wonder if they'll actually use geography, they no longer have to doubt! I feel like I'm bearing my testimony or something but I just have such a strong conviction that a knowledge of geography blesses our lives so much. The main thing I've been able to see here on a mission is that it helps me connect to people. I hope all is well at BYU and with your geography classes. I miss being a TA so very much but I love my mission! 

Have a great week! Thank you so much for all that you've taught me and all that you do!

Sister Carly Christiansen

Tueller Reunion

 On July 1, 1953 Blaine Carlson Tueller and Jean Marie Heywood got married. To celebrate the 60th anniversary of that union their ten children and their families all gathered in Brian Head, Utah for four days of fun. Family members came from Venezuela (in route to Switzerland), Kuwait, Nepal (in route to Massachusetts), India, Taiwan, Japan (in route to Utah), Hawaii, California, Arizona, Washington, Wisconsin and Utah. That gathering has been going on for a few weeks so even before the official reunion there were plenty of get togethers.



On Friday, June 28th the Emmett family joined with some of the clan for a trip to the Mormon Miracle Pageant in Manti, Utah.

Marie and three of her siblings enjoyed running into their cousin Jack Bickmore (center)

 We left for the reunion on Sunday after church. Will did all of his packing for the trip and did so by laying out all of his outfits (soccer jerseys) for each day.

Monday morning many of us went on a wonderful hike (led by grandson-in-law Mike) along the rim of Cedar Breaks National Monument.

Wild flowers were at their peak, including one of my favorites--lupine

Lots of dead Sub Alpine Firs

The group that made it all the way out to the Ramparts Overlook (a four mile round trip hike).

Aunt Diane photo bombs the jump photo

Blooming blue bells cover the hill side.

An ancient bristle comb pine

More favorites--blue columbine

That afternoon some of the young boys and their parents went on a Chad lead treasure hunt hike under the beginner lifts at Brain Head. 

We had hoped to find cell phones and large amounts of money that had fallen out of skiers' pockets when they fell, but all we found were 2 quarters (Marie found one) and a dime.

At the base Will and cousin Lamont (barefooted) from Hawaii enjoy that last remnant of snow.

That night and every night we enjoyed dinner and visiting in one of the three rented cabins.

Monday night--on the actual day of the anniversary--everyone gathered on the deck of "Cabin Sweet Cabin" where the Emmetts, Jim Tuelleers and Krumpermans stayed for a very entertaining talent show. Here are some highlights (for more photos of the whole show go to Tueller Reunion on Flickr): Leading out was oldest sibling Jan and family who sang some favorite songs from their many years of car trips in a variety of cars.

)

A surprised Matt (currently serving as US Ambassdor to Kuwait) smiles as four of his five grandchildren emerge from the cabin to take on their duty as his "official" bodyguards.

Blaine and Jean are all smiles.

Jim, a history professor at BYU-Hawaii, when given a random year from the last millennium, would  tell us what happened in that year, while his family acted out the event.

Aunt Rachel's talent was blowing bubbles with the help of some great-nieces.

Betsey and family, just returned from Nepal, sang about their adventures there.

Matt's daughter-in-law Ayae shows some of the pre-swim lesson exercises her daughter Yuna learned in Japan this last year.

Diane and husband Lant (and Asher) doing some Gangam style dancing.

The teen cousins singing the song "fabulous" from the Disney TV show Phineas and Ferb.

Last week while viewing the super moon I tired to sing "I See the Moon and the Moon Sees Me" which my mother always sang on night time drives home through Sardine Canyon. I couldn't remember it all so we googled it and found a different, but very delightful version (lyrics and tune ) that Marie really liked. She learned it on her guitar, Sarah made our head dresses to go with the lyrics (moon, lark, oak tree, ocean, mountain) and we all sang.

Cousin Emma's (smiling center bottom) talent is yoga so she invited people up to do yoga with her. Her Aunt Martha joined in but chose to do a more elementary routine.

Jeanne and family singing the Root Beer song that our kids also like to sing.

With only one practice a few hours earlier Aunt Diane leads a family chorus. Joel joined in and Aunt Diane (a high school choir teacher) was able to help him figure out how to find the same notes everyone else is singing. She and he succeeded!

Sarah read with nice dramatics a humorous essay from her English class last year that describes her quest in life to figure out who she is by what she reads.

Grandma Jean, with a "blue bird on her shoulder" as a symbol of how happy she was to have everyone gathered, reminds her posterity to always look for the good and to speak kindly

Jean's lovely "sermon" prompted spontaneous singing (a common occurrence in the family) with all ten children of "Jesus Said Love Everyone" 

The final act was a family trivia game by Aunt Martha and her boys.

Marie smiling when everyone realized she was the one who was shot in the butt by brother Matt and his bb gun.

"It hit me right here."

Singing Grandma's favorite song "Families Can Be Together Forever" and grandpa's favorite "The Lord My Pasture will Prepare."

Next morning we all drove to Panguitch to Grandma Jean's childhood town. I was made DB (put in charge) of the family photo (it is a rare thing for an in-law to be appointed to be the DB-designated boss). Knowing that it was a large group, as we drove through town I scouted it out for any type of incline or bleacher we could use to make it easier to see everyone. We didn't find much to go on so while we waited at the cemetery for everyone to come I walked out and around the perimeter looking for any possible place for a photo. Then I saw it. The lone house to the east of the cemetery had built two berms on either side of the lot and recently planted trees atop them. They looked perfect. I went and knocked on the door and asked the father if we could use his hill/berm for a family photo. He was a bit concerned about the recently planted trees, but when I told him that it was my in-law's 60th anniversary and my mother-in-law's parents were buried next door and we would not touch the trees he willingly consented.With the help of my dad's tripod that I inherited and the timer on my Canon camera we had a fairly successful photo shoot--which includes all 10 kids, 26 of the 30 grandkids and all 12 of the great grand children. While we were posing, the family was nearby rounding up a few calves that had escaped from the corral.

 
 Family photo, Venezuela, 1972. It is a rarity because it includes all 12 children.

Here is a recreation of that photo, with the same ordering (except a reversal of Jeanne--on dad's lap in the original and Rachel--on mom's lap).

The Matt and DeNeece Tueller family

The Jan and Win Lowman Family

Panguitch in the distance

Jean Marie Heywood Tueller's great grandfather was Joseph Leland Heywood who was baptized in 1842 in the ice covered Mississippi River by Orson Hyde. Joseph Smith, who taught and converted Heywood on the first day of his visit to Nauvoo, helped cut the ice for the baptism and then confirmed Heywood. He and his fourth wife Mary Bell both crossed the plains with the Mormon pioneers. They then met and married and settled in Panguitch. They had 12 children together.

Their son David Leland Heywood and his wife Kate DeLong



 Their son Leland DeLong Heywood and his wife Marie Evans.

Their daughter Jean Marie Heywood Tueller, who was born in Panguitch, with her daughter Marie Tueller Emmett and a granddaughter Marie Amara Tueller (Matt's eldest daughter). Four generations of Maries.



Jean's younger sister LuDean who only lived 19 days. She contacted the flu from the delivering doctor who came to the Heywood home to deliver her after treating a person with the flu.
 

To introduce these and other ancestors buried in the cemetery the kids went on a treasure hunt to find tombstones. Once found they returned to the pavilion where Grandma Jean told them stories about those they had found. 

That afternoon we enjoyed boating (thank to uncle Lant's new boat) eating and visiting at Navajo Lake. 

Joel (in lime green) helping his cousin Katie (same age but a foot taller) ashore. She broke her foot the day before the reunion while swimming with cousins at Aunt Diane's.

After dinner that night there was a spontaneous singing song fest of all of the family favorites sung over the years wherever the Tuellers lived: Ireland, Austria, Morocco, Venezuela, Panama, The Philippines, Spain and the United States.

Next day on the drive home we stopped to visit Utah's first territorial statehouse in Filmore. Brigham Young hoped this new, but short-lived, capital would encourage more southward settlement.

A few weeks ago Sarah's (playing in the former statehouse) doctors finally felt that her blood pressure was at a safe and stable point for surgery. They originally wanted to operate on June 26th, but that would have meant that Sarah, who will need about a week in the hospital to recover, would not be able to attend the reunion. At her request we asked if we could postpone surgery so that she could attend the long awaited reunion. The doctors agreed and it is now scheduled for July 10th. In the meantime Tueller gatherings (swimming, BYU soccer game, fireworks) continue.