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

Monday, April 21, 2008

The Spongebob Devil Baby

When I was in Utah I stole some of Jenny's cd's and downloaded them onto my computer (don't call the cops). I haven't had time to go through them and categorize them until this week. I hurt my back so I've been taking it easy and this was a good time. Most of the cd's she had were mixes and not marked as to what was on them so I had to go through them one song at a time. Little did I know that it would be such an emotional roller coaster. I don't know how many songs I had but probably around 150. Jenny and I have always had similar taste in music. She had a more eclectic library, however. There were so many songs that remind me of her. So many songs from our childhood and teenage years. There were also a lot that I'd never heard before. Anyway, I was crying on and off for several days. We were taught to love music from an early age in our house. Our Mom is an incredible piano player and choir leader and my Dad is a terrific singer. Music was just a part of our lives and we were introduced to Neil Diamond and Simon and Garfunkle early on. I think Jen liked music because it could define a mood. I like it for that same reason. Sometimes I don't know how to get a feeling or emotion out and I'll hear a song that says exactly what I want to say. I love those moments. Jenny could write poetry and do this and she loved the poetry in music. Her music was another gift she left me. Thanks, Jen.

This e-mail was sent on February 13, 2007 and it's entitled "The Spongebob Devil Baby." Hope you like it.

I have had kind of a hectic week. I was able to go visit my best friend from high school, Jennie Sykes (Schwenk). She lives in Green Bay in a lovely old house that was exactly what I pictured her house would look like. I was able to meet her son, Alrick, who is Erin’s age and adorable! and to see Jennie’s husband, Charles again. They were both such wonderful hosts. Jennie and I mostly stayed inside (it was sooo cold) and I haven’t laughed that hard in a really long time. It was so nice to see her again – it was like absolutely no time had elapsed since she and I saw each other. She’s been such a wonderful friend and I was happy to celebrate her thirtieth birthday with her and her family and friends. I’m sending a picture of me at Lambeau Field.

We also celebrated Ernie’s birthday. He’s been working all hours of the night doing the finish work at the new house. I surprised him with his favorite, a German dish, Rouladen and
Spaetzle. I set up a table in the new house and had some music playing. I lit some candles, but we still had to have the work light on (what was I thinking?). It was meant to be a surprise, but he figured I was up to something. He’s 29 now and talking about how old he feels. I tell him he can’t complain about being old at 29 -- he needs to wait until he’s at least 79 to start complaining about that. It was a really wonderful experience and it was nice to just spend some time together and I really love spending time with him.

The house should be finished by the end of this month (fingers crossed). It’s such a wonderful feeling to know that Erin will grow up with the same view from her front porch as I did. I’m enclosing some pictures. Ernie did the finish work. I helped a little bit with the closets. He cut the boards and I glued and nailed the shelves to the wa
lls. It was a lot of fun and I can understand why powertools have such an appeal!

I got the results from my MRI today and everything looks great. The tumor is continuing to shrink – yea! I have to go back in two months this time because of a small dot they think is a small vascular rupture from the radiation. It’s perfectly round, so it’s most likely nothing serious. Julia is always very honest with me and she gave me no indication that this was very serious. Maybe this is the Lord’s way of keeping me humble. I’m learning so much about humility -- something I’ve always lacked in the past.

Erin and I have developed sort of a ritual at night when I put her to bed. I put her in her crib (she usually gets pretty mad at this point and starts screaming) then I pick up her “babies” (2 Carebears and a Spongebob dressed like the devil). They tell her how tired or cold they are and then Erin’s little heart gives in and holds each one and she stops crying. She gives them hugs and kisses and wraps them up in receiving blankets. When it’s time for me to leave I explain to her that I’ll be right outside the door if she needs me. She has learned that I keep that promise, so those words mean a lot to her. Sometimes she’ll call out for something, or reassurance, but most of the time she just wraps up her babies and then falls to sleep.
Last night in my prayers I thought about the importance of having someone there. If Erin is afraid because of the darkness or because she has had a bad dream, she knows she can cry out and that I’ll hear her and come and comfort her. I reassure her of my presence, and when necessary, let her stay with me through the night. I felt the Spirit as I made a connection between my love for my children and my Heavenly Father’s love for me and desire to protect me. When my life is dark and I can’t see any light, I can call out to Him, my Father. He will comfort me, and when necessary, stay with me through “the night”. He doesn’t make the darkness go away, but rather gives us comfort until the daylight comes once more – as it will for all of us that carry heavy burdens. . .“Come unto me all ye that labour or are heavy burdened, and I will give you rest . . .”

Happy Valentines Day!



Jen Vesper said...

Thanks once more for the updates. I have had an especially challenging week, really long story, but reading this just puts things back into perspective. I actually saved all her emails myself because they inspired me at the time, but never take the time to go back and read them. These updates remind me to read and even though I always end up in tears, they remind me of what is important. Then all the things that I thought were SO hard this week seem so small. Thanks.

Jeff said...

I was very saddened upon hearing the news of Jenny's passing. My thoughts and prayers go out to her family and friends.

I just needed to comment that this blog is a beautiful tribute to Jenny. Reading through the entries, I was very impressed by her courage, her faith, her love for her family, and her enduring sense of humor throughout it all. Jenny's unwavering testimony during this trial is inspiring to me and I'm sure it is to all that read this blog. Thank you for sharing it with us.

Jennie said...

In high school Jen and I would make mix tapes for each other and then with the advent of computers it became mix cds. It's really no surprise that the same talented girl that could perfectly scrapbook an hour of your life into a whole picture album would also create mix cds with handmade covers and little laminated ringed binders containing personal dedications and descriptions to each song. (The most I did was doodle on the cd surface with black magic marker.) The last mix Jen made me was entitled "A Taste of Armegeddon" and carried a Star Trek theme. The outside and inside cover both featured photos of Jen's favorite trekkie, Captain James T. Kirk. (There are two others with similar themes...) My brother saw it sitting out on the stereo the other day and didn't even have to ask who it was from. Jen had an ear for lyrics - There were many songs I already knew that would show up on those cds, but somehow hearing them through her made the lyrics sound different, better and more relevant. She also had a knack for finding little known tunes before the rest of the world knew them.And of course she appreciated the classics; the themes from "Xanadu" and "Wonder Woman" were ongoing installments. If Jen took the time to make you a cd, then you were receiving a gift straight from her heart. Years ago when I had first moved to New York and was going through a really rough time I received a mix tape in the mail from Jen and it honestly turned my whole world around. I must have played that thing until it didn't play anymore. The message was one of "Don't give up" and "You're smarter than that...Do better." She didn't even know all that I was going through at the time, but somehow she sent all the right songs.
Thank you so much for that last post, Heather. Once again, you've really tapped into what we all loved in Jen. That was such a wonderful visit - we literally just sat at my kitchen table and talked and talked. It brought me such joy to watch her interact with my son too. Jen and Alrick would make tunnels and little cities for his toy trains and Jen would refer to him as "The Master Architect" and call him "brilliant". Alrick just ate it up! For my 30th dinner party my brother and Jen and I all forced my dinner guests to listen to story after story about our time working on the Weber High Warrior Newspaper. It was a wonderful, wonderful, (albeit, cold!) visit.