My Sister Jenny

This story is about my sister Jenny Higley Lynch. Jenny is a 31-year-old mom who loves her family, the outdoors and making people laugh. In 2005 Jenny was diagnosed with Glioblastoma Multiforme, an aggressive brain tumor. The prognosis was not good. The doctors told Jenny that she would have less than 2 years to live. Although she was 4 months pregnant at the time, Jenny underwent brain surgery to remove the tumor and immediately began radiotherapy. Five months later, following the birth of her beautiful daughter, Phoenix, she began oral chemotherapy.

It has been more than two years since Jenny's diagnosis. Our family was optimistic since her health seemed to be surprisingly good. She wasn't too sick from the chemotherapy and she was even working again.It was a horrible blow when, after an MRI in July of 2007, we found out the cancer was spreading to other areas of the brain. We were unable to understand how she could seem to be doing so well, but still be so sick. We rallied our hopes and Jenny and her oncologist came up with a new game plan. They decided to have an Omaya reservoir implanted. This device is surgically inserted under the scalp for direct injection of chemotherapy throughout the spinal fluid. This surgery left her in pain and made her very sick for a couple of weeks, but she came through it and began the chemotherapy.

Almost a month later, in October of 2007, Jenny became extremely ill and was taken to the hospital where she was diagnosed with Spinal Meningitis. This illness took a huge toll on her and her family. Not only was it physically devistating, but it was an emotional roller coaster. She was put in a hospital in Salt Lake City which is about 60 minutes from Farr West where she lives. This made visitation, child-care and work for her husband, Ernie, and our mother a logistical nightmare. Jenny had to endure 3 or 4 surgeries (we lost count) to relieve intracranial pressure and to insert and remove shunts and drains. Finally, extremely weak and unwell, Jenny was discharged and sent home. She had less than a month to recuperate before the next phase hit.

On December 21 Jenny got another infection in her spinal fluid which caused a lot swelling in the area around brain. She was taken to the University hospital in Salt Lake City again. Within a matter of hours she lost all ability to speak and many of her motor functions. She was in the University of Utah Hospital for 4 weeks, where she battled infection, endured more surgeries and tried to get well. After this she was moved to Salt Lake Regional Medical center where she had 3 weeks of physical, speach and occupational therapies and more antibiotics.

Thankfully, Jenny is home now and in the care of family and friends. Although she seems peaceful, she has sustained considerable brain damage and needs 24-hour care. She cannot perform most every-day functions without a lot of assistance. Speach is minimal and somewhat confused, and we don't know how damaged her thought processes are. She has a hard time concentrating and understanding problems and she cannot yet walk on her own. Most of her time is spent sleeping, watching TV or watching her surroundings.

My dear sister is not the same active person I know and love. I don't know if she will ever fully recover. My family is in a waiting game. Ideally, Jenny will recover and be able to resume her chemotherapy. Meanwhile, her family is faced with a single insurance carrier that doesn't completely pay for all the care she has undergone this far, let alone the care she needs now. The cost for her hospital time alone is astronomical. There are two young daughters and a husband to consider.Our hope is that people whose lives Jenny has touched can help. Every dollar you give will go to provide Jenny care and her family support. Perhaps more important, it will provide Jen's family some of the hope they need to get through this difficult time. We know that God has a plan for Jenny and we are trusting in him. We know that he will bless you for your donation.Thank you.
by Heather Chamberlain
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Erin, Jenny, Phoenix and Ernie

Tuesday, May 6, 2008

As I said last week, Jenny's birthday was on April 26th. She would have been 32 years old. I live in the Seattle area so I was not able to be home on that day. I told you all about how I spent the day, but I talked to my mom and sister about how they spent the day. They planted a tree in the front yard of Jen and Ernie's house that she had mentioned she wanted to do. Then they all took balloons and flowers to the cemetery where Jenny was buried. At this cemetery (where my maternal grandparents are buried) the owner and management allow not only flowers but other tokens of love to be placed permanently or semi-permanently on the grave sites. My sister Amy brought a small little wind chime that had a sun and moon on it (Jenny loved sun, moon and stars memorabilia). My other sisters, mom and Ernie and his girls left balloons and flowers. My mom mentioned how hard it was to leave those balloons floating in the wind behind them as they drove away. In my minds eye I can see it and I would have liked to have been there. After the cemetery the family all met up at Ogden's best pizza spot "the Pizzeria," where Jenny ate often and where the family frequents. All in all, I heard it was a good day. I'm glad; I was worried it would be very difficult for them...Now we just have Mother's Day and Phoenix's birthday to look forward to. Phoenix was actually born on Mother's Day in 2006. Boy, I think this year is going to be hard!
I slyly procured a copy of a letter Ernie wrote about Jenny from a source which shall remain anonymous. It is so beautifully written and touching to me that I had to add it to the blog. Ernie and Jenny were more similar than I had thought. I hope he doesn't disown me for posting this!! Just kidding....I wish I had more pictures to put with this but my scanner is not working--Sorry.

Dear Friends,

It isn’t often in life that you get the opportunity to meet someone who will manage to forever change your life for the better. Jenny was one of those people for me.
She was my niece LaCher’s teacher when LaCher was in the 7 and 8 year-old class in Primary. My sister Cheryl knew that Jenny had gone to Germany on her Mission, and was very impressed with her, so she went about getting her number for me. I can’t remember what I said during our first conversation, but the date we went on was to LaFerrovia, an Italian restaurant on 25th street in Ogden. (I always went there on my “first date, because everything on the menu is good, so if she ordered what I usually got first, I’d still be able to enjoy the backup meal.)

When I picked her up, I noticed a sign by the front door that said, “Martha Stewart does not live here…” I knew right away that the family had a sense of humor.
While at the restaurant, we talked a lot about Germany, and tried to see who had the most hair-raising rejection experiences…I think we tied there. I soon found out that Jenny was someone I genuinely liked being with, could talk about anything with, and who noticed some of the unconventional things in life like I did. She had it all: Smarts, charm, and good looks. I wasn’t sure at the time, but from the first moment I saw her, it was “love at first sight.”

Our second date started out a little on the fishy side…I pulled up to her house, and she came running out before I even set foot on the pavement, jumped in the car, and said, “ok, let’s go!” When I asked her if everything was ok she just said, “Oh my family‘s all in there and I don’t want you to meet them just yet.” Not sure of what to think of that, I just started driving.

We went to the Galaxy Drive-in that used to be on Harrison, and she asked me this totally off the wall, but serious question: “If you were stuck in the wilderness, hundreds of miles from civilization, totally out of supplies, and had no other hope of survival, and someone in your group died, would you resort to cannibalism?” Totally thrown off guard, I decided that the truth was the best answer in this situation, and said, “It depends…” I won’t go into details, but apparently, I was the only person she had dated that didn’t just give a yes or no answer when she asked him that question. We then went to Some Dude’s Playground to exert some energy, and have some fun.

A few days after our very odd second date, I was sitting around my house trying to come up with something interesting to do on our third date, when she actually called me up. When she asked if I wanted to come over to show her how to change the oil in her car, I knew my days as a single man were numbered…
We married in the Salt Lake Temple on August 14, 2001. It was a brisk 104 degrees in the shade, and will always be remembered as one of the happiest days ever in my life.

The wedding reception was held at Jenny’s Parents house, because Jenny wanted to have a more “personal” reception where we didn’t stand in a line, but went around, actually talking to the people who came. I loved the idea. We took Polaroids of everyone who signed the guest book, and had a very lovely, casual, and unique event that will always be special to me.

Our Honeymoon was unconventional as well. We both have always wanted to go to Washington, D.C., so we went there. We both loved going through the museums, and seeing the architecture of the different monuments. Jenny was always a History Buff too, so our marriage could not have started out any better.

Our first residence was an apartment near the Roy Fire Station. The upstairs was inhabited by a tribe of shoeless rhinos that would “stampede” until around 2:30 a.m. making the windows rattle, so we exited immediately after our lease was up.

Our first “home” was located in Syracuse, and we loved it there. All of our neighbors were nice, we had a cute house, and we had peace and quiet. Too quiet, in the beginning. It actually creeped me out the first few nights to sleep so well. I wondered if my alarm would even wake me up to go to work.

Erin blessed our lives with her arrival shortly after that on October 27, 2004. She was born within minutes of the Boston Red Sox winning their first World Series in 96 or so years, on a Blue Moon and the night of a Lunar Eclipse. We chose the name Erin because it is the Irish name meaning Peace. Her middle name, Piper, was chosen, because we wanted her to have a sassy/fun side as well. It seems to fit her well. She is the spitting image of Jenny when she was Erin’s age: Big bright eyes, and beautiful, thick, blond hair. They even ride tricycles the same way!
Shortly after that, we were blessed with the news that we had another young one on the way, but this is where the trouble started.

Jenny was having double vision, and some really bad head-aches while trying to finish up her teaching certificate. We thought her sickness was just related to her pregnancy, but decided to take her in to see a doctor to make sure we knew what was going on with her.

On December 7, a “day that will live in infamy,” they found a tumor growing in Jenny’s brain, and we were forced to make some of the most difficult decisions people can make in life. Jenny was about 15 weeks pregnant at the time, and every doctor in the country who deals with cancer like this one, recommends the patients to have an abortion to make treating the cancer the primary focus…Somehow, we were “lucky enough” to stumble onto a brain surgeon who had done some research on removing tumors in women that are pregnant, and was willing to do all he could to protect the little baby growing inside Jenny. Not much was known about how to accomplish this, it’s extremely rare, and the odds are about 100% for us, but 1 in 300,000 for everyone else, so the information on “success stories” was almost non-existent.

The surgery went as well as it could have gone, and it was on to radiation therapy. Being pregnant complicates the things here as well. One of the beams that is used to shrink the tumor bed area is shot directly down through the body, which would potentially do significant damage to the baby…Again, we were “lucky enough” to stumble onto a Radiologist who had done some research on that too, and was willing to try reconfiguring the radiation program to reduce the exposure to the baby. He and his engineer even constructed a lead shield that Jenny could shimmy into that covered her belly to protect the baby even further, and treatments went very well. They had a monitor on Jenny’s belly that took radiation measurements, and never had any reading turn up.

We chose the name Phoenix Jenny Lynch, because of the symbolic meaning of Phoenix being born out of the ashes of Jenny’s body. It seems to fit her as well. She can be a real ball of fire sometimes. The only problems she has had so far have been Stenosis. (Her soft-spot bones were already fused at birth) that we had taken care of at Primary Children’s Hospital when she was 3 months old, and knowing that she is cute enough that she can get away with “almost” anything.

Jenny rose to every one of these challenges, and so many more. It was amazing to me to see all that she was able to accomplish, with all that was going on in her life at that time. She was always so strong, active, and doing something productive. All while taking care of the kids, doing house-hold chores, working a full-time job, taking chemo, finding time to scrap-book, cheering her heart out at Ute game, toting the kids around at Lagoon, going on family trips all summer, and many other things. She was the happiest spending time with Erin and Phoenix.

If you imagine our troubles as a big rock that you have to push up a hill, Jenny’s kept getting bigger, and bigger with all of the problems that she had to go through. Every step along the way, I watched her dig just a little deeper to keep pushing that rock up the hill of life. I was a witness to how precious this life is, and how important it is to have a body, and how hard our spirits try to hold on to this precious gift. In watching her, I feel like I caught a brief glimpse of her “true self,” and the nature of her very soul. Not only did she not give up the fight for life; she never even let up to try to catch her breath…

Her obituary says, “She lost her final battle to cancer…,” but from what I saw in that small glimpse was that cancer wasn’t strong enough to beat her. Nothing was…I think it was a little closer to her being pulled from this life kicking and screaming the whole way. That’s just how she was. My Best Friend, Eternal Companion, “Soul-Mate,” and Hero…. Jenny.

Thank you so much for all of your love and support during these troubled times. It is deeply appreciated.
Ernie Lynch

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