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

Friday, November 7, 2008

California Vacation

I've been thinking about Jenny a lot lately. The feelings I've been having are rather uncomfortable. It feels like I'm forgetting her. When Jen first passed away my mom and I talked one night. She was telling me that she doesn't want to forget Jenny. At the time I didn't understand very well, but I now know what she means. It's not that I don't miss her, I do. I guess I just feel like my life is going on even without her--and maybe I feel like it shouldn't be. It's a weird feeling. I dont' like it. I guess there's nothing else to do but go on, but I wish I could do it with her here.

This e-mail was written to Jenny's friend Jennie Sykes-Schwenk from California. It was a trip that Jenny initiated and the rest of the family just kind of showed up. I'm really glad we did. It meant a lot to her to have this time with the family. I remember the trip like it was yesterday. She talks about the "Tower of Terror" ride and I remember how much she liked it. I hate drop rides and refused to go on it but she finally convinced me to ride it too. She was scared also, but when we got off the ride she just got right back in line for it again. I was done but she loved it!

Oh, and "Jen n' Jen" is in reference to a column she and Jennie Sykes did in the High school newspaper that did movie reviews.

Yes, here we are in lovely downtown Anaheim staying at the luxurious Comfort Inn. It's not a bad place to stay and it was the cheapest of our options. On Saturday night we stayed at a place called "Whiskey Pete's" -- it's just outside of Las Vegas in a tiny little hole called Primm -- it's like the poor man's Vegas. I hated every second that I was there. The whole place reeked of cigarette smoke and I had to take my kids right through the casino to get to our room. Ernie told Erin to kiss a quarter that he was going to put in the slot machine. I guess the look I gave him was enough because he just smiled and put the quarter back in his pocket and never got it out again. We did eat Prime Rib for $6.95 (and it tasted really good with crack water). I was happy to leave Primm when the time came.

We went to Disneyland on Monday. Erin could have cared less and Phoenix just wanted to eat all the time (babies!). Erin started getting more excited on Monday when we happened to see a Jedi training show while we ate some $8.00 hamburgers in Tomorrowland. She would really rather be swimming in the hotel pool or coloring on a dry erase board and erasing it over and over. We took her on the Dumbo rides and on Peter Pan. She hated the Merry-Go-Round and never got to see Cinderella (Cinderella was always being mobbed wherever she went). I tried to discourage the whole princess thing at first, but Erin really loves Cinderella, so we'll be doing a princess party -- hopefully not at my house!

My platelets are really low. The chemotherapy was pretty hard on my poor, sticky platelets. I went from having 190,000 to 22,000. On Friday I had a platelet infusion. It's a little bit like getting a pedicure except it involves needles, tubing, and you don't get to pick the color of platelets they put into your blood stream. The volunteer asked me if I wanted something to drink and I requested diet Coke. He told me I couldn't have that (I think he thought I was joking?) If I can have coffee, can't I have diet Coke? So I had a grape juice, two tylenol and a benadryl (which knocked me out). Even after the infusion my platelets continued to drop. My PA wanted me to stay home from my vacation and I started crying. I told her I was going anyway and she arranged for me to have my blood drawn at a hospital here where she could monitor it. She told me to stay away from sharp objects and not to go on any roller coasters. I still shaved my legs and I went on ever roller coaster I could. I don't feel any different and my platelets started going up again on their own. I have to go once more on Thursday. On Friday we're headed up to Visalia to see the Sequoias (spelling?). I'm excited for that, too. Today we went to the Disneyland California park. They have a new ride called the Tower of Terror. It shot us up fourteen floors of this "hotel" and then dropped us. It did that twice. I thought I would hate it, but I loved it! Tomorrow is Sea World. I hope Erin sleeps all the way to San Diego so she isn't such a grouch!

The princess thing here is huge. I don't remember even thinking about princesses when I was younger. I really wanted to be an orphan like Annie and have friends like she did in the orphanage (a daddy warbucks would have been nice). I guess I never thought of myself as a princess and never liked pink. My mom bought me pink things, but if I chose to wear something it was rarely pink (until I saw those soccer shorts - I had to have them!). Have you seen Little Miss Sunshine, yet? The little girl in it was really funny and adorable. It has some tender moments in it. I recommend it. Maybe we could do another Jen n' Jen for old time's sake.

It was nice getting your email. I wish I could write more often!


1 comment:

Jen Vesper said...

I love that she went on all the roller coasters anyway. I always loved her defiant streak. I went on Indiana Jones when I was 6 months pregnant with Drew. *grin* I just held the seat belt out so it didn't squish me.