You never know how strong you are, until being strong is the only choice you have.
By Becky Goins, from Harrison, Tennessee
I wish our family had never heard the word Gardasil. I had no idea a ‘simple’ vaccine could take so much from my daughter. We have spent years trying to help her regain some semblance of her normal life.
Savannah was always energetic and outgoing. She was happy, positive and loved being with her family and friends. She was very athletic with soccer being her sport of choice. She won many awards for the talent she exhibited on the field. Savannah lived and breathed soccer; it was her passion. We spent much of our time at games and tournaments. She had big dreams of one day earning a soccer scholarship and going to college. Savannah had many friends. Her weekends were usually booked with sleepovers, movies, shopping and other activities. She was leading a normal, happy teenage life.
May 2009: Savannah received the vaccines she needed for the seventh grade. She received the Gardasil vaccine, 2 other vaccines, and the flu mist. I was very nervous about her receiving the Gardasil vaccine since it was so new. I didn’t worry so much about the other vaccines since she had been given these vaccines before.
In the following weeks and months Savannah was sick with nausea, vomiting, and weakness. I remember it vividly because it always seemed to come on when she was active and it would hit her very suddenly. I remember several soccer games where this happened. I just figured she had the flu or a virus and didn’t think much about it.
I still had doubts about Gardasil though, so I didn’t rush to get the next dose. I even thought about not getting it at all. I had not heard about the adverse reactions some girls were having after this vaccine. It was just that Gardasil was still so new and enough time had not passed to really see what side effects it could have. I decided to wait awhile before getting the next dose.
October 2011: Savannah received the 2nd Gardasil shot. I had not heard anything about bad/adverse reactions to the vaccine so I decided to finish the series. I wish I had done more research. The only information I had seen was from Merck and it showed the shot was safe with the exception of a few minor side effects.
After Savannah received the 2nd dose of Gardasil everything in her life changed. Within one week she was very sick. We started seeing her primary care physician. She was experiencing nausea, vomiting, sensitivity to light, extreme migraine headaches, back and leg pains/spasms that would cause her to yell out for me in the middle of the night, weakness, extreme fatigue, dizziness, forgetfulness, irritability. What was happening to my daughter?
I slept with her many nights so I would be close when she needed me to massage her leg and back, assist when the nausea and vomiting hit, help comfort during an excruciating headache or just be there to reassure her she would be okay. She was so sick. Some nights I would lie awake and watch her breathing. What was happening?
On the few occasions she did sleep she was always restless. In the first several weeks of this sickness she could sleep 15 or more hours a day easily. As the sickness progressed she couldn’t sleep at all. She tossed and turned and wanted so badly to sleep so the pain would be eased and sickness forgotten but sleep just would not come. It seemed everything she ate made her sick. She was getting worse and worse. I wasn’t sure what to do.
During this time I began to put together a timeline to try to figure out what was happening. We also began seeing various doctors to try to figure out what was wrong.
Savannah’s Gardasil Timeline:
October 2011: 2nd Gardasil vaccine given at health department. Within 1 week, she started becoming nauseous, vomiting, tired, headaches, and started missing many days of school and soccer practice and soccer games.
There were a few times Savannah attempted to play soccer. She was literally crawling on the field. Her coach pulled her out. She had always played in the past and had always played the whole game. This was devastating to Savannah and upset her more than anything. Soccer was the love of her life. Her coach was very supportive of her during this time but he knew Savannah would literally push herself until she was even sicker. This coach is one of the biggest supporters Savannah had. He was one person who saw with his own eyes the devastating changes in Savannah and her health.
It was heartbreaking. Not being able to play soccer was the hardest reality Savannah had to deal with during this time. There were many tears.
January 2012: Physical at health department. Very sick with nausea, vomiting, tiredness, fatigue, body spasms. Still missing many school days.
Appointment with primary care physician for nausea, vomiting, tiredness, fatigue. He makes a diagnosis of “possibly stress related”.
Savannah is missing several days of school or the school is calling for me to pick her up due to sickness several times per week. We are struggling to meet the absenteeism policy, she is sick every day. We need doctor’s excuses but I can’t take her to the doctor every single day to get them. If the school nurse calls it’s excused so many days I have to take Savannah to school even though she feels very bad only for the nurse to call me to come right back and pick her up. This is affecting my job tremendously too. It’s such a stressful time for me and Savannah.
We finally talk to the primary care physician, who requests homebound instruction for Savannah for one month.
May 2012: Last visit at the health department. They will not see Savannah anymore due to her sickness but ask her if she wants to get her 3rd Gardasil vaccine dose at her last visit.
She says, “No, I feel too bad.”
(This is a moment that plays over and over in my head. What if Savannah had gotten that third dose?)
Appointment with primary care physician. Savannah is sick every day with nausea, vomiting, fatigue, spasms, light sensitivity, and often has migraines. Doctor makes another diagnosis of stress. Prescribes Phenergan.
June 2012: Appointment with a different primary care physician. Savannah is very sick while at this appointment, vomiting aggressively, feeling extremely bad. Has to take Zofran given by the doctor to get through the doctor appt. We tell her we have been dealing with this for 8 months. Primary care physician refers Savannah to GI Specialist and prescribes Zofran. She promises us she will figure out what is wrong.
Savannah takes the Zofran every morning and sometimes in the afternoon. She still has stomach pains, she is fatigued, sensitive to light, sweats a lot and easily. We have changed her diet, buying lots of organic fruits and vegetables, and other foods. She is drinking lots of water, V8, Gatorade. She’s still very sick. Not sure what to do. Zofran becomes ineffective the longer she takes it.
Initial visit with GI Specialist. He schedules endoscopy with 3 biopsies.
July 2012: Have endoscopy with 3 biopsies done. Results all normal. Doctor prescribes Pinactin to take every night.
Follow-up appt. with primary care physician. I speak with the doctor about a possible link between Gardasil and Savannah’s sickness.
She says, “I’m not sure, but you never know, it could be.”
She will do some research, call some people and get back to me. She doesn’t get back with me and when I ask her at our next visit she says she hasn’t had time.
August 2012 – July 2013: Savannah begins to see a naturopath/chiropractor. I was skeptical, but out of options. Many of the parents I had read about who were dealing with sick children after Gardasil had success with naturopathy. It was something I had not tried. When a friend gave me the name of a good naturopath and told me the doctor had helped her with many issues I decided to try it.
The naturopath gave Savannah blood tests to determine what her body was lacking. She saw him twice per week for 3 months, then once per week for 3 months, then once every 2 weeks for 3 months, then once a month for 3 months. He gave her P5P, Calcium, and Magnesium drops, adjusts her back/neck each time we go and does numerous muscle tests. The tests determine what her body has too much of, or needs more of.
Over the next year the doctor gives Savannah many types of supplements to help her with various issues. He starts her on a detox regimen and cold laser therapy treatments.
My skepticism slowly turns to hope. Savannah very gradually begins to improve and feel better. She starts having some really good days after 6 months of homeopathy treatment for the first time since her second shot of Gardasil in October 2011. She was still struggling in the mornings getting up and eating was hard for her but overall a huge improvement. She was regaining her energy and her overall appearance was better.
August 2012 – July 2013: We do continue to see the primary care physician too and she asks if the naturopath is helping to which I respond “More than anything else we have tried”. She says if it’s working keep doing it.
The nurse tells me she doesn’t know how Savannah manages being so sick, she says she would have a hard time managing it and would be extremely depressed. I tell her Savannah is a very strong girl.
July 2013: We are out of money for now, so we must discontinue the naturopath treatment. It’s expensive and insurance doesn’t pay for it. I’ve scraped the bottom and there is just no way to come up with the funds I need. This scares us.
Savannah takes what supplements she has left. She says she feels she is doing better except for feeling sick in the mornings as usual and stomach problems when she eats certain foods. She is still tired a lot, but can sleep in the mornings since she is doing on-line high school this year. She still has a hard time sleeping at night, has back/leg pains, major digestive issues but overall she has made some progress.
August 2013 – September 2013: Savannah is doing pretty well. She seems to have some energy. She is eating, not very much but some. She eats very small amounts several times per day. She said this works best for her. She drinks a lot of water. We buy organic meat, veggies, and fruits as often as we can.
Mornings are still hard; this is just to be expected in her life now. She has some bad days but more good than bad.
Savannah joins a recreational soccer league and attempts to play. She plays three games but just doesn’t have the energy to continue. The soccer activity seems to set her back a little bit. She was happy just to be on the field. She comes to the realization that she probably won’t be able to play soccer again. She is sad but still hopeful that one day she will play again.
October 2013: Savannah is becoming sick again with nausea and throwing up frequently. She is barely eating anything at all. She says she thinks she needs to go back to the naturopath. We will as soon as we can come up with the money.
I will start looking into ways to possibly get Savannah a diagnosis. Besides the naturopath I’m not sure what to do or where to go. I will make another appointment with her primary care physician.
I would like to take her somewhere that can diagnose her. Where would this be? Vanderbilt Hospital? Mayo Clinic? Do I need a referral? I’m not sure but I will find out.
Summing up our Gardasil journey
This experience has been the most difficult thing Savannah and our family have ever had to face. Her childhood has faded into oblivion.
Savannah deals with long days of sickness and restless nights. She still has leg and back pain. She is sick every morning which is the hardest time of the day for her. We have adjusted her life to avoid mornings.
Public school was no longer an option; Savannah now participates in an on-line high school. It is the only way she will be able to finish. She makes good grades and is proud of herself, I’m proud of her too.
Savannah misses her school friends so much. Most of them don’t understand her sickness – why she has to come home early, cancel plans, or feels bad when she attempts to go somewhere. She tires quickly and becomes very irritated by loud sounds, bright lights, or busy, crowded activities.
I talked to Savannah about adjusting life when it’s necessary. She adjusted as best she could. She got a job at a burger restaurant. She works 2-3 days per week for 2-3 hours a night and is doing well. She has almost been fired since her supervisors do not understand her morning sickness and that she cannot work in the morning. Sometimes they schedule her for morning anyway. Savannah always tries to do it but she just can’t. Mornings are a big struggle for her.
Savannah has been so strong through all of this. I watch her closely because she doesn’t want to worry me and will try to keep things to herself even when she feels bad. I know if she says she’s not feeling well, she’s really feeling bad. She goes through her struggles quietly when she can. She is an inspiration to me.
Savannah has a favorite quote which is:
“You do not know how strong you are until being strong is the only choice you have.”
Savannah doesn’t talk about her sickness very much; she doesn’t want people to see her as being sick. She did write about it in a paper for her on-line high school. The paper was about the most influential person in her life. She wrote about me and this journey we have been through. It seems that is all there is at times but through it we have developed a strong bond that will never be broken. The paper is the first time Savannah has really expressed how she feels.
This is the battle Savannah and I have fought for two years. If I could take her pain and sickness upon myself, so she could be whole, I would. We won’t give up this fight and I’ll be by my daughter’s side and help her get through this.
I hope one day we find answers; I hope one day we find a cure.