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I am Kelly's mother and she is the oldest of 4 children. Kelly was diagnosed at the age of 21 with 2 AVM's. My husband and I had been married 22 years at that time. Kelly's illness has been hard on our family and our marriage. We have had extensive couples, individual and family therapy to help our family cope with this disease. Without the help of good counselors as well as friends and family, I don't think our family could have stayed intact. This is a picture of my daughter Kelly on her wedding day. Little did we know how all our family's life would change just one short month later. I love this picture because it shows Kelly's fighting spirit and her great sense of humor. Today, my husband and I have been married 42 years and we are very grateful that we had each other through out this difficult period. I know many families do not make it. We now have 4 beautiful grandchildren. The oldest is Kelly's biological daughter who has been adopted by Kelly's sister, our second daughter. The 3 other grandchildren never knew Kelly which is a great sadness for me. My goal is to keep Kelly's memory alive while not dwelling on the past. I talk about Kelly to them and share funny stories with them about her. I keep a photo album of her on my coffee table and they occasionally like to look at Aunt Kelly. It does my heart good to see that. Here is Kelly's story.
11 October 2008
It was a beautiful spring day in June 1987. Kelly was 21 years old and it was her 1 month wedding anniversary. Kelly had complained for about the last 6 months of migraine headaches and had been to several doctors about it without relief. She thought the headaches were the result of a car accident she had been in where she hit her head. That is when the headaches started. They were blinding with sharp pain. She didn't think the doctors believed how bad they were.
One Friday afternoon, she felt one come on. She was in her car close to the hospital when she decided to turn into the parking lot and go to the emergency room. As she was doing so, she stopped at a red light in front of the hospital, everything went black and her car gently rolled thru the intersection, bumped up over the curve and came to a rest in the grass in front of the hospital.
A man, who witnessed the entire thing, ran over, scooped her up and ran her into the emergency room. Next came a series of tests to determine what had happened. Once again, they sent her home telling her it was a migraine.
At home, she was very sick, vomiting, weakness, sweating and she kept saying something is wrong, very wrong. We took her back into the emergency room the next day where a very nice doctor took one look at her and ordered a spinal tap. The tap came out with pink fluid indicating bleeding. From there another series of tests, hospitalization, MRI's, exays etc. The final diagnosis, 2 AVM's; one located right on top of her brain stem. Inoperable they told us and it was large. This is the one they believed bled causing her all of these problems. The second AVM was located in her left frontal lobe where her speech center is located. It was operable but because it was not bleeding and because removing it would most likely take away her speech entirely, they wanted to leave it alone.
We had no idea what AVM's were. But we soon learned how devastating they were. They started her out on anti seizure medication and sent her home after a couple of days with a list of follow up appointments. At home, she seemed to get worse. Very lethargic and even confused at times. She also had an extremely high fever. It was spiking 105 degrees. She developed a rash and soon we could not wake her at all.
A quick trip back to the hospital, the first of dozens in her lifetime, with a new diagnosis this time. Along with the AVM, she had developed a condition called Stephens-Johnson Syndrome which in her case was a result of the anti-seizure medication they gave her. This condition is life threatening. She spent about a week in ICU covered with large pustules inside and outside her body. Her skin peeled away in layers like a severe burn exposing pink flesh. Her fever continued to spike while strong antibiotics fought to keep it down.
After recovering from this, she was still very lethargic. She was then diagnosed with hydrocephalous caused from the brain hemorrhage that she had a few weeks earlier. The firy shunts were put in to help drain fluid down to her abdominal cavity.
Throughout the next few years, Kelly suffered repeated shunt failures which required more surgery and replacement with different types of valves, different types of tubing placed in different parts of her brain. Some became infected and had to be removed while others got blocked with blood causing it to stop draining. She even had a couple of small strokes.
With each surgery, I felt we lost a little more of her. With each surgery it was like starting all over again. She had seizures and tried several different types of anti seizure medication. She lost her hair from one of them.
The doctors sent her to Harborview Medical Center to undergo an experimental procedure to eradicate her AVM on the brainstem. They called it Photon Beam Surgery. She stayed a month in Seattle for this treatment. Her side affects were many. She again lost her hair and was very sick, vomiting and dizzy from the treatment. Her shunt had to be replaced and she had a small stroke during one of her treatments.
Over the next few years, she had periods of time where she did well. She went back to college, she worked briefly part time. She continued with her life. She was very brave and kept a great sense of humor and hope throughout her ordeal. Kelly made everyone smile and worked hard to get a smile out of her doctors. She would say "I don't want anyone working on my brain that doesn't have a sense of humor". And she meant that.
One of my fondest memories of that period of time was right after one of her surgeries. Kelly had organized a group of 6 and 7 year cheerleaders for the local football team. She was determined to continue to mentor and coach this group of young girls. I can remember seeing her showing them a cheer. Her hair was gone and she had several fresh incisions on her scalp from shunt replacements. Her one eye was a little crossed, but she did not care. She just wanted to get out there and help these girls and be a role model for them. She wanted to be normal. I could not have been prouder of her.
The good times were short lived for Kelly. She frequently had to go back in to surgery for shunt replacement. Again each time she had to regain strength and sometimes regain physical abilities. It became too much of a strain on her marriage and it ended.
At one point in time, when things looked very grave for her, her doctor asked to do another experimental procedure to remove a portion of her brain to make room for spinal fluid to move and drain normally. They took a golf sized piece of brain from her left frontal lobe next to one of her AVM's.
This was a major surgery that took so much from her. The first time I saw her after this surgery, her head and face were at least 3 times normal size. She was in so much pain and could not communicate very well. She had to relearn how to swallow, to walk, to talk and to literally do everything all over again. I can remember feeding her the tiniest bites of soft food and telling her to swallow. She couldn't seem to swallow unless I told her to. Her weight dropped dramatically. Her eyes crossed and everything looked double to her. She could no longer cry. And she lost the ability to sweat like you or I. When she did sweat it was like someone drew a line down the middle of her head and body. One side would be dripping in sweat while the other was totally dry. Kelly had trouble sleeping and nights became nightmares. She would be up all night sometimes.
I prayed to change places with her. There is nothing more heartbreaking than to see your own child in such distress and pain. I could see the frustration in her eyes. But she never gave up and neither did I. I walked the halls with her, fed her, combed her hair, moved her feet to show her how to walk and brushed her teeth. And gradually she would come back to us.
It was music to our ears when the doctors told us her AVM on the brain stem was nothing more than a tiny hard pebble in her brain that would never cause her anymore problems. We didn't know if it was from the Photon Beam surgery, the multiple embolizations or the Stereotactic Radiosurgery she had. It didn't matter. What mattered was that it was taken care of. They said all blood flow to it had been stopped and we needn't worry about that AVM again. We were still on hold, watchful waiting on the 2nd AVM.
The biggest problem now was on-going shunt failures. They replaced it again and again finally just adding hardware to make it all work. I think at one point she had 3 shunts in place. This seemed to work for her. But she was still struggling towards normalcy. With each shunt failure and surgery we lost a little more of her and her life became more difficult to manage for her.
We started to notice a personality change. She was always good humored, tender-hearted, trusting of others, stubborn and very charismatic. She still had all those traits but it was like all those traits were now magnetized, making her very vulnerable to others who might take advantage of others. Her stubbornness helped her recover, but her tender-heartedness and the fact that she overly trusted people got her into trouble.
She was definitely a target for anyone choosing to take advantage of her. She had trouble seeing that she had any disabilities from this. She did not recognize her limits and she used very poor judgment in making decisions.
She could not hold down a job because she would lose all track of time and couldn't stay focused on her work. Kelly was impulsive and would act on those impulses inappropriately. Her memory was very poor even forgetting that she had just ate and would try to eat again. Eventually Kelly got involved with people who used drugs and she began using drugs.
Despite our efforts to keep her safe, she was rebellious and would not allow anyone to help her. She ran away from home and began using drugs. For the next 15 years, her life was one of chaos, illness and getting in and out of trouble. She experienced a very serious brain infection at one point and almost died. Still she continued to push her family away and in retrospect, I can see this was because she was trying to get her independence back and just wanted to live a normal life. She was far from that.
Kelly had periods of time where things would be good for a year or so, then would slip back into drugs and alcohol. She didn't feel like she fit in anymore. Even though she would push her family away, she always called to let me know she missed me and was ok.
In March of 2006, she was living with her boyfriend. When she got up that morning she did not feel well. When her boyfriend got home from work she told him something was wrong. She thought she was going to have a seizure and needed to go to the hospital. He helped her into his car and on the way, had to hit his brakes hard to prevent an accident. She did not have a seat belt on and hit her head on the dashboard of the car hard enough to fracture her skull. Kelly lost consciousness almost immediately.
The hospital called me and told me what happened. She was in a coma. The MRI confirmed that her AVM, the one on the brainstem that we had been told was just a tiny hard pebble had burst. I told him it couldn't have because she had so much treatment on it and the doctors told us there was no longer any blood running through it. He said there had to have been a small bit of life left in it because she had a massive bleed in that area and the AVM was gone and there was no hope of a quality of life for her. I will never forget the next thing he said. He asked me if I wanted to donate her organs.
There is nothing more devastating than to have to make decisions such as this or even worse, to take them off life support. We sat with Kelly for 4 days praying to for some sign of life from her. Her coma this time was very different. We knew she was gone and if for some miracle she would survive this, her quality of life would be so poor. We could not do that to her. She had suffered enough. We made the difficult decision to let her go and to be at peace finally.
Kelly had a difficult life with lots of challenges. Despite all that, she showed tremendous courage and determination. This disease consumed our family's life for almost 17 years.
My comfort since her death is knowing that she no longer suffers or feels like she doesn't fit in anymore. She is home again and at peace. I see things everyday to remind me she is with me in spirit and am grateful for that.
Knowing her has given me the ability to feel more. I have more compassion for those suffering, I give of myself more freely and I know that each of us may be gone in an instant and to cherish the times we have with each other.
I was very excited to find this website because we did not have a place to share our fears when Kelly was first diagnosed... No one had heard of an AVM and trying to explain the "mass of spaghetti" or "bundle of worms" description of an AVM to anyone was difficult. I would usually just say she had an aneurysm or a head injury. Most people know what that is. While Kelly's story didn't end well, it is a real experience that can happen to average ordinary people. If it can happen to our family, it can happen to anyone.
My struggle today is worrying about other family members. We have been told this is highly unlikely another family member would have an AVM. But I have heard conflicting opinions on this. I do know that a couple of older family members died of cerebral hemorrhages. I don't think they could diagnose AVM's at that time. But do wonder if those could have been bleeding AVM's.
My heart goes out to families who have lost their loved ones. It has been especially hard for Kelly's siblings. She was the oldest of 4 and they looked up to her. To see her suffer and her condition deteriorate through the years was heartbreaking. We all have some guilt for not being able to keep her safer but we also know we did our best. I think of her everyday and am blessed we had 39 years with her.
Discussion, comments, or questions: Denise Brown
© Copyright 2008 Denise Brown.
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