By Tracy Andrews Wolf
Six years have passed since Alexis received three shots of Gardasil. Six years of suffering for no good reason. Now, I live in constant fear of what might happen during my daughter’s next seizure.
I wake up around 5am every morning in a panic. My heart is racing and I desperately try to stop my mind from thinking the worst, never knowing what to expect. Some nights she knocks on my door every hour because she is having so many seizures that she is totally confused. Some days when she gets undressed for her bath she has dark bruises, with no knowledge of how they got there. Sometimes she has knots on her head and doesn’t remember hitting her head. If she doesn’t have her mouth piece in while having a seizure, then blood pours out of her mouth because of grinding her teeth and they get chipped and loose. Every morning I awake in fear, wondering if Alexis is still with us.
Alexis and her younger sister used to be so close, I asked Kimber to write down her feelings about what has happened to her sister. This is what she wrote:
“Being nine or ten years old and watching your older sister slowly dissolve and someone completely different taking her place is simply wrong. It is pretty much the exact same thing as watching a hit man kill her before your eyes. It is – just knowing the fact that you will never see your sister again. The only difference is, through my experience, it was slower, I didn’t understand what was happening, and I didn’t know I was never going to see the real her, or should I say old her, ever again.
Today, six years later, I am used to it; her seizures, her way of life, just everything about her. It’s like I never knew her, like I’ve only heard about her. All I remember about her was a little bit of her personality. She was my only sister, my only sibling, my best friend. My sister lost all her friends. I held onto mine, but they never fully understood what I’ve been going through. So my friends do not come around here. I am actually embarrassed to have them come over because of how my sister acts. You never know what will happen and so many people just do not understand.
I miss her dearly. Whenever I see a couple sisters hugging or just hangin’ like a couple regular siblings, I get sad and think of all this. It’s not like I can’t hang out with my sister, it’s just not the same. She is what my mom calls, “a toddler, a little old lady, and a teenager combined.”
If my sister was “destined” to be injured, then I would have rather it had been not mental, but maybe a bad scar or a small part of one of her limbs amputated. Just something – anything besides what she has now. Now she is a shell of the sister I once had.”
Alexis heard me asking her sister to “write a story” so Alexis decided to write a story for me. This is her version:
“Once upon a time there was a girl named Alexis Raley Wolf. She has been sick for 6 years, way too long, right?! Also she has not slept, function, behaved in 6 flippin years. Way too long right my wonderful peeps. So what the hell are we going to do, huh? I hope there is a flipping cure really, really soon, you know what I mean??? Also I love that it isn’t so bad as 6 years ago, you know my wonderful peeps that I love so ever much….the end, Love Alexis Raley Wolf.
Dear Lord of my life, please, please, please, please, please, please make me better. I beg of you. That is all I really flipping want SO PLEASE for the love of God! Love Alexis.”
Along with her “story” she also drew a circle with “Gardasil” in the center and a bunch of lines through it. I have a large sack full of letters/stories that Alexis has written down on paper just like this over the years. They are always the same.
Our life before Gardasil:
Allow me take you back to 2007, when I was pressured into making the decision that changed our lives forever.
In 2007 Alexis was a very shy 7th grader. She worked so hard at school that she achieved honor roll status. She had been diagnosed with type 1 diabetes the year before, but took the diagnosis very well, choosing to use it as an opportunity help educate her classmates. She did many school projects on diabetes which not only helped her learn more, but also showed her classmates what it was like to live with diabetes. We were all so proud of her.
Her grandfather wanted to reward her hard work by having her come spend 4 weeks with him in Germany during that summer off from school. I was a little apprehensive but she was in control of her health and knew how to give herself the appropriate amount of insulin when needed.
We visited her Endocrinologist and she gave us the “thumbs up” to go on the trip. Next we saw her pediatrician to get her “thumbs up.” During that visit, they recommended the Gardasil series. They said due to Alexis having diabetes it was very, very important to get her vaccinated for EVERYTHING that came up because of her weakened immune system. I agreed.
I wanted to protect my daughter, doesn’t everyone? She was given the first shot and we were told to come back after Alexis returned from Germany.
Alexis had a great time in Germany and returned home 4 weeks later. When she returned I started noticing strange things about her behaviour. She never experienced “jet lag” and actually slept very little. When she found out our dog had passed away while she was gone she tried very hard to cry. She had never had to TRY to cry before….usually she could cry very easily. We went back to the Dr and she got the 2nd shot in the series. That is when things really started to get crazy.
Alexis’ personality changed so much. At first, I thought she was just coming out of her “shy shell” since she had just travelled to Germany.
Gardasil begins to take control:
The day after her 2nd shot, her heart started pounding so hard and fast we thought it was going to jump out of her chest.
We went back to the doctor and they sent us to a cardiologist. Alexis had to wear a heart monitor for 24 hrs. Her heart rate was fast but they didn’t think it was an issue.
Then Alexis started throwing up A LOT and for no reason. Then she would say that things looked scary and sounded scary. Back to the doctor we went. The gastroenterologist told me to give her Zantak and come back in a month.
She started 8th grade but was unable to sit still and always felt like throwing up. The teachers started putting a trash can near her desk. Teachers were calling me and telling me that she was disturbing the whole class and I needed to do more. I was taking her to doctor’s appointments all the time it seemed and no one could figure out what was going on.
Alexis started seeing and hearing things that were not there. She would get very mean and violent with me. Yelling at me and telling me that she wanted a new family. She screamed at me to take her to an orphanage so someone would adopt her and take her away. I was so scared. Heart-broken does not begin to describe what I felt.
I got zero help from her father (my husband). He would only yell at me and tell me what to tell the doctors. I felt like I was losing my mind.
About that time, Alexis started running out of the house and knocking door to door telling everyone that she hated her family and wanted a new one. Obviously people called the police and we had to explain all of this to them when it didn’t even make sense to me.
The holidays came and went…it was the worst Halloween and Christmas ever.
A third Injection of Gardasil – the final straw for Alexis:
Then in January of 2008, I took Alexis back to the doctor and she got the 3rd shot in the series. I asked if Gardasil could have anything to do with all her crazy symptoms. I was told “No, but if she didn’t finish the series then it could cause more problems.” So Alexis got the 3rd shot.
For the first time in her’ life Alexis was telling me she hated me and didn’t want to be part of my family. It hurt so bad, it seemed I was crying all the time. I would cry and she would just look at me with such hate and then as if a switch was flipped on she would look at me and say “don’t cry mommy.”
The vomiting and hallucinations kept getting worse. We had seen so many doctors at this point I was finding it hard to keep up. No one ever gave us any answers.
Within 2 weeks of the 3rd shot Alexis was hospitalized. The doctor was concerned about her diabetes and weight loss. They ran tests and told me “There is nothing medically wrong with your daughter.” I told them they were wrong.
Since they thought Alexis was just acting out and being a teenager they sent her to a children’s behavioural hospital. What a horrible place! They treated Alexis like an animal. I visited every day. She was there for 5 days, and on the 4th day they called me to tell me that she was eating her vomit out of the bucket they gave her to throw up in!!!!!
The next morning they called and told me that she was stable and I needed to come get her. She was far from stable! That day I called and begged her doctor to help – to do something! She was able to get her into another children’s hospital.
When we arrived, the staff told us, “I can see that her issues are not behavioural but we will try to get her to sleep over the weekend.” They gave her high amounts of Trazadone to help her sleep and it never worked.
The following Monday when the doctor came in, I told her everything that was going on. She said it sounded like Alexis was having seizures!!!
She ordered an EEG done and there it was!!!! Alexis was having tons of seizures in the frontal lobe of her brain. The next 6 months consisted of tests, tests, and more tests. Alexis remained in the hospital from March to July. All tests done (over and over) came back normal except for the EEG’s.
Finally, after her 2nd spinal tap, they determined that Alexis ‘must have been exposed to a virus’ that had caused encephalitis, TBI (traumatic brain injury), brain damage and a seizure disorder. She underwent IV therapy, Plasmapheresis, surgery for a port to be put in her chest for the plasmapheresis, and then surgery for the port to be removed. She spent her 15th birthday hooked to a machine.
There were times when I went to visit my daughter and she was strapped to the bed because of something she had done to a nurse or sitter. Alexis had to have someone with her at all times. She would try to take and eat food from trash cans. She would scream foul language, try to punch or kick people, spit on people, flash people, throw things…….my sweet, shy child had become someone I didn’t recognize. Do you have any idea how hard it is to visit your child in the hospital, go to their room and find them 4 point restrained to their bed???
She begged to come home and then would beg the nurse to take her home. She would tell me that I wasn’t her mother anymore because she found a better mom (usually a janitor or a sitter or someone who didn’t know how to respond to her).
When UNM Hospital didn’t know what else to do with her they made arrangements for Alexis to go to Austin Texas to their neuro rehab. She was only able to stay for 2 months because our insurance would not pay anymore. I was told to contact Social Security and medicaid. I was told to get her signed up on this waiver and that waiver and things I had never even heard of before…..what did all of that mean?
Here we are 6 years later, what happened to my child????
Alexis will be turning 20 in June of 2013. Mentally she is at a 3rd grade level. She cannot be left alone because of her violent seizures. She has been on anti-seizure meds this whole time, many different kinds and nothing seems to work.
In 2010 she got a VNS implant in her chest. It is a device similar to a pacemaker. It is implanted under the skin in the chest area between her right breast and her shoulder and a lead is attached to her vagus nerve and sends off continuous impulses in hopes of stopping the seizures. It really doesn’t seem to work either. She gets it adjusted (strength of impulses) every month but have yet to see any big changes in seizure activity.
Alexis has to wear adult diapers because she cannot always control her bladder or bowels when she has a seizure. She has upwards of a hundred or more seizures a day, some very big and violent; some where she is stuck in a long stare with lots of facial twitching. She has lost one tooth due to a violent seizure and now has to wear a mouth guard at all times. Several other teeth are chipped because of seizures. We have to keep all food locked up at all times. If things were not locked up especially at night she could eat herself into a diabetic coma. When a seizure has finished she thinks that she is starving, even if she had just finished eating a meal. All of her friends left her far behind. No one wants a friend that has seizures, throws up and has to wear diapers….at least not any of the friends she used to have.
Alexis had big plans of going to college and becoming a special needs elementary school teacher. Sadly that will never happen.
She and I had to go before a judge in court to grant me guardianship since she is now over 18 and cannot make any adult decisions for herself.
Here are some other things that Alexis will never get to do, thanks to Gardasil:
- graduate from high school with her class
- get married and have a family of her own
- get her driver’s licence
- go to prom or homecoming
- go on a real date
- have a job
- take a shower without someone else being in the room
- hang out at the mall with friends
- move out and get her own place
- wear normal panties……and the list goes on and on…
Gardasil changed everything! Our perfectly normal lives have been forever transformed into a living nightmare.
Please, learn from our story. Do not let your child become “One More Girl” like Alexis because of Gardasil.