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 7, 2008

Phoenix's Surgery and BBQ chippies

Many of you may or may not know that Ernie and Jenny's daughter Phoenix was born with a condition called Craniosynostosis. It is the premature joining of the bony plates that fuse to enclose and protect the brain. Normally the plates close during the first two years of an infants life, but Phoenix's had already fused. The abnormal shaped skull that results in Craniosynostosis is due to the brain not being able to grow in its natural shape. Instead, it compensates with growth in areas of the skull where the cranial sutures have not yet closed. So when Phoenix was about 3 months old she had to undergo surgery to her skull, something Jenny knew quite a bit about, ironically. Thankfully, Phoenix will not have any lasting effects from the condition. She just has a scar that is not detectable underneath her hair.

I also wanted to tell you the reason Jenny and Ernie chose Phoenix's name. When Jen was first diagnosed she was almost 4 months pregnant. The doctors thought it would be best if she terminated the pregnancy. It was an agonizing choice to make, but Jenny had an oncologist who had faith enough that the baby would be fine and that treatment could continue during Jen's pregnancy. But ultimately, the decision was Jenny and Ernie's. They prayed and exercised great faith. Christmas Eve night, when our family all got together at my mom's house, Jenny announced the baby would be born as planned, and that the name they had chosen was Phoenix. If you are not aware, a Phoenix is a mythical bird that rises out of its own burned ashes. You see, Jen felt like out of the "ashes" of her sick body, a beautiful creature could be born. We all thought it was a beautiful idea but were a little unsure of such a unique name. However, as soon as Phoenix was born we could not think of a better name for her. What a legacy her mother has left for her even in just a simple thing as her name.

Now that you have some background on our sweet little Phoenix here is Jen's e-mail she entitled "Phoenix's surgery and Barbecue Chippies" dated August 31, 2006.

It’s been a long time since I’ve had a chance to sit down and write. I hate that I sometimes let myself get caught up in everything else and forget to do the things that will really matter one day (like writing in my journal). We’ve had a busy summer and I feel like we’ve finally “moved-in” in Ogden. Most of the boxes are unpacked and I’ve gotten used to less space. We’re really lucky that Netty and Marcus are letting us live here.

Right now the air is pungent with the smell of bbq chips. I can’t even remember where they came from or why they were in my house, but Erin saw the little bag of chips this morning and is currently devouring its contents with gusto. Her greasy hands seem to be touching everything and I have to decide whether it’s worth it or not to wash her face and hands because that means no more “chippies” and a screaming two year old. Phoenix is resting, so I feel like a little potato chip grease on the rocking chair is a small price to pay for my little baby’s slumbering bliss. It’s also the reason why Erin is walking around with snot dried to her nose. Normally I’d pin her down and wipe it off, but that is usually followed by about five minutes of shrieking and screaming – so the snot stays.

Phoenix’s surgery was on Monday. We drove down to Primary Children’s Hospital in SLC on Sunday to have some labs done. On the door of the lab the techs had funny pictures of themselves as children on the door and a poster board with the heading “Who would you marry” on the door with a picture of Han Solo in one column and Chewbacca in the other column. There were names scrawled under each picture. I chose Han Solo in my head (although Chewbacca is a wonderful conversationalist), but I wasn’t able to write it on the board – I think they would have found that a little cheeky.

(Erin is offering me one of those revolting potato chips – I’m holding my breath – I am happy that she is sharing).

We arrived at Primary Children’s on Monday morning. We were late (as usual) but so was the surgeon (as usual), but Phoenix was really good, especially considering she hadn’t had any formula since midnight and only Pedialyte at around 5:30 AM. They weighed her and examined her to make sure she was healthy enough for surgery. Her surgeon wasn’t extremely friendly, but I guess that’s what nurses are for. He came and explained the surgery again and the anesthesiologist came and explained what he was going to do. Fifty percent of babies that have this surgery require a blood transfusion, but Phoenix came out not needing one. We waited in the waiting room for about two hours. I brought a David Sedaris book to read (Dress Your Family in Corduroy and Denim) but I couldn’t concentrate on it so I watched Ellen (a show I’ve never really cared for because of the screaming audience and the dancing) but thank heavens Dennis Quaid was the guest, I really like him. Then I fell asleep and was awakened by Ernie calling my name and motioning me into a room. I was so out of it that I just sat there for a few moments trying to remember where I was. The surgeon explained that everything went fine and that one of us could go to the recovery room and be with her. I got the lucky job of going (I think if I hadn’t I would have wished that I had). She was crying a hoarse little cry. The nurse was a big guy who told me that he had given her some morphine and was monitoring her heart rate and her breathing. I felt sick when I saw the jagged, oozing incision on my little babe’s head. There was a tube coming out of her head that was draining into a tennis-ball sized receptacle. I felt useless standing there. It was overwhelming and I felt my stomach knot and my head start to spin. I sat down on a chair at the end of the crib and put my head between my knees. I felt like a moron when all the nurses crowded around me and started shoving apple juice in my face (I don’t like apple juice, bu
t it was cold so I drank it). They asked if I wanted Ernie to come in and relieve me, but I wanted to be with Phoenix so I sucked it up and was able to be there for her a little bit.

They moved her to a room on the fourth floor. All they could give her the first day was morphine and she was really sore and crying a lot. Ernie stayed with me until my parents came at around 4:00 PM with Erin and Ernie took her home. I stayed the night in the hospital on a chair that folded out into a bed. I was so tired I could have slept any where. Another patient was admitted to our room. I think he was a little bit less than a year old. His parents kept leaving for smoke breaks so I had to endure a lot of screaming and crying from a baby with a much larger set of lungs! His parents didn’t come back that night, but I was tired so I was able to sleep through a lot of the screaming. Phoenix slept alright and would have slept more, but they had to take her vital signs often. By Tuesday morning she had eaten for the first time and was able to have some Loritab (I hope she doesn’t become a junkie). She was able to rest much better and I think the Loritab managed her pain a lot better.

(I just had to stop Erin from slamming all the doors in the house. It’s her new thing and she’s almost as compulsive at this shutting doors thing as she is at putting on everyone else’s shoes).
I went to work after Ernie came to the hospital on Tuesday. Erin stayed at Stephanie’s house (she loves it there) and I went to work. I thought about Phoenix the whole time. I felt bad that I wasn’t able to be there with her, but I think it gave her some special bonding time with her daddy. Grandma and Grandpa Lynch visited her that afternoon. Steve was really excited about an antique clock on display in the lobby of the hospital. They came right when the nurses were removing the drain from Phoenix’s head. Ernie said it went in about five inches. I’m glad I wasn’t there for that. I could never be a nurse! Ernie stayed with me on Tuesday night. On my way down I stopped at the Gateway and bought a bear for Phoenix. I know she’s just three months old, but I thought she might appreciate it later. I sprayed it with some of my perfume and put it in her crib. She also had a Care Bear blanket from home which seemed to comfort her a little. They moved the other baby and his parents to another room, but one of us still had to sleep in the rocking chair. I decided that I could do that. It’s was kind of like sleeping in the car during a long road trip. I would wake up with kinks in my neck. Ernie gave me the bed around 4:00 AM and I slept until around 8:00 AM. We were finally able to check out on Wednesday afternoon.

Phoenix is doing great. She’s getting better every day. She sleeps a lot and Erin has, miraculously not bothered her at all. (She’s currently trying to put one of her diapers on her Care Bear). Thanks for all of your prayers and all the support that you’ve given us. We appreciate it a lot. I’m enclosing some pictures. I made one black and white because the color version would have been a little too much for some of you! It was for me when I opened it this morning on my computer.

We’ve been so blessed. I feel the power of the Lord working in our lives every day. I don’t know what He has in store for me and my family, but I trust Him. I think a lot about the scripture in Matthew 6:28-30:

“. . . Consider the lilies of the field, how they grow; they toil not, neither do they spin:
29. And yet I say unto you, That even Solomon in all his glory was not arrayed like one of these.

30. Wherefore, if God so clothe the grass of the field, which to day is, and to morrow is cast into the oven, shall he not much more clothe you, O ye of little faith?”


1 comment:

Jen Vesper said...

Here I am thinking that I am all ok with everything now. Then I read her words knowing that I couldn't send an email back telling her how brilliant she is and it brought me to tears. So I looked up to the sky and said, "You're brilliant Jen" and then left this note. Thanks for keeping the posts coming Heather. Love you!