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, September 8, 2008

The official tomb stone

It's coming up on a year now that my sister got really sick. For some reason that's making me more nervous and anxious than any other of the milestone anniversaries this year. I guess because once it hits that point, it will be officially a year since I spoke to my sister and knew she understood me. Plus, those months she spent in the hospital are so hard to think about, when I knew she was in pain and suffering, and I couldn't do a thing about it here.

We finally had the tombstone for her gravesite finished. Ernie had to wait for a few months for the ground "to settle." But he decided it would be nice to have it placed on their wedding anniversary, which was in August. Ernie came up with the idea of what to put on it with my mom's help. A pen and open book seemed like fitting thing. The back side of the stone was all Ernie's idea and we all feel it is perfect.
This e-mail was sent to Jennie Sykes Schwenk on February 23, 2007. It is entitled "B flats and Senior Citizen Yoga." As always it's quite quirky, like my sister. I miss and love you, Jen.

I did yoga when I was pregnant. I rented a DVD from the library and it was mostly senior citizens do the yoga in the background. I remember one stance that I really liked. I think it was called "the mountain" where one feels their feet being rooted to the ground. I pictured myself on top of a mountain with my feet rooted firmly upon the rocky soil and surrounded by the glacier lilies that grow on the White Pine Trail. That one hour of yoga I did in the early days of my diagnosis really helped me to relax and feel peace, even if it was only for a few minutes.

I love ham, too. Did you use your slow cooker? I love ham that is cooked in a slow cooker until it is slightly overcooked but still very tender and it falls apart on my plate!

I heard on NPR that when one plays a b flat on a tuba to a throng of crocodiles that they go nuts and also that the frequencies emenating from black holes can be converted to music and guess what? it's a b flat. Not one word about Anna Nicole Smith or the freshly diapered astronaut -- who does NPR think they are?

I went to the Salt Lake temple yesterday since I was married there. I went with a friend that was visiting from Germany. The inside is so beautiful and all of the finish work was handmade and hand painted. We ate at the Joseph Smith memorial building in a restauraunt on the top floor. It has a pretty nice view of Salt Lake city (wow! Salt Lake is really ugly this time of year!).

I hope there is some leftover ham that you can have for lunch. Please put some in an envelope and send it to me (maybe you should wrap it in tinfoil first).


Katie said...

We were at the cemetery yesterday for my grandma's burial. We saw Jenny's headstone and I wanted to know her story. I found this blog and was glad to be able to find out what a 'Sultra' was! I'm so sorry for your loss and hope that your family is doing well :-)

Heath694 said...

Thank you for your comment. It's always amazing to me the people this silly little blog touches. I wish you could have known my one-of-a-kind sister.

On a sadder note, we are so sorry for the loss of your Grandmother.

Thanks again and best wishes.

Jen Vesper said...

That cracks me up that Jen listened to NPR. I do to once in a while and most people wouldn't know that about me either. *grin* The headstone is beautiful. I think I will go see it this week.

staceygriff said...

Ernie and your mom picked out a beautiful headstone. I love the open book and pen. Like I've said many times I only met her once but from her writing it does seem fitting to have that on her headstone. The back made me cry. You are great for doing this blog Heather.