Hailey Sampsel: Today marks my one year of being sick. My one year of pain, hospital stays, infusions, doctor visits, tears, hope, and love.

One year ago, I went into surgery healthy, pain free and came out not so healthy, not so pain free. If that doesn’t show how unpredictable life may be I don’t know what does. Life in short…sucks. It’s unfair, unforgiving, and random. We can hold onto all the things that suck about life or we can remember all the good parts of it.

I choose to look at the good- everyday I choose to look at the good (although some days I feel like giving up). I am still choosing to kick POTS (Postural Orthostatic Tachycardia Syndrome) butt!  I will NOT let my illness win. I choose hope. I hate what this illness has done to my body but I am happy for all of the people I have met through it- without them I don’t know where I’d be. They are all so strong, inspiring, loving, and everyday show me that I am not alone in this medical journey. ?

Amy Sampsel, Hailey’s mom, shares as well: Today marks the one year anniversary of my daughter Hailey’s ankle surgery and when her constant pain began. With this anniversary, we still have so many unanswered questions:

What went wrong during surgery?

What is causing this awful migraine?

Will I ever be able to look into my daughter’s eyes and not see her pain?

Will her dreams of returning tumbling and running every happen?

Can we find a doctor somewhere who can end this torture…this nightmare?

How much longer can she endure this lifestyle?

At this one year mark, I have been going through all of my memories of what Hailey, I and my family have been through. I made a promise to her on the night of her surgery as she was crying and so scared. I told her that when this surgery was over she would be back on that mat tumbling and doing what she loved. I told her she would thank me for not letting her back out of the surgery. I have never been thanked and I have SO much guilt. We could have kept her ankle wrapped and let her just continue on the trampoline (tumbling was too painful). We could have kept her as a carefree teen and had her just hang out with her friends….and enjoy her teenage years! She eventually would have needed the surgery to prevent arthritis but we had time.

Hailey had such a fun personality. She always wanted to try new things. We actually had to limit her as there was not enough time to fit in everything she wanted to do. She had lots of friends and classmates gravitated towards her. Just prior to surgery, she had been voted to be a student body officer at her school. Due her migraines, Hailey missed almost all of school last year. She never really got to do anything with the officer role. The guilt is overwhelming and the tears and prayers for help for my dear daughter are constant. I also want so badly to take the pain from her.

Hailey was a very healthy child prior to this surgery. On her first admittance, they had to teach her ow to swallow pills. She had never had her blood drawn or an IV. Now, she has blood taken and IV’s often. Hailey had a PICC line placed with no sedation. She also laid so still for her spinal tap because she was hoping with the pain there would be answers and help. Her spirit is slowly being crushed as we can’t find anything to take this pain away. Will she ever be out of pain? One year with a migraine is so exhausting physically and emotionally. Hailey spends most of her time in her room in the basement laying in the dark and quiet. I have heard her on numerous occasions sobbing in pain. All I could do is lay beside her and tell her how sorry I am. I can’t even hug her when the pain is high as her skin is so sensitive to touch. All I can do is hold her hand. Hailey is a fighter. She’s an athlete. I know she’s still in there. I have seen Hailey riding her recumbent bike trying to help the POTS with her head in her hands as it causes the pain to soar off the charts. We recently started fibromyalgia water classes and they exhaust her and make her head hurt. She is trying to be brave. She guzzles Pedialyte and adds a sickening amount of salt to things in the hopes that she can get rid of the horrible dizziness she always experiences.

Hailey still wants so desperately to return to tumbling. In the beginning, she told me she would put her leotards on in her room so she could still have hope. I recently found all of her tumbling stuff hidden. It was too painful for her to have a constant reminder of something she wanted so badly and didn’t know when and if she will ever return. A couple nights ago, she had me get them out again. Hailey talked about how unfair it was that everything was taken from her when she had worked so hard for it all. She wants to be back on the tumbling team. All I could do is agree that it wasn’t fair and promise her that I would keep doing everything I can to get her back tumbling and pursuing her dreams. Some, somewhere HAS to help her. Please.

We spend so much time going to doctors and different therapies. We are praying that something will take the pain away. My younger daughter doesn’t understand why Mom had to stay with Hailey in the hospital and why I am often not home to be with her. When I am home, I spend lots of time on the computer looking for anything that will help Hailey. I am only able to work a very part-time job, a couple hours and days a week, so that I can take Hailey to her appointments. The bills keep coming in. My husband told me how hard it is to see his daughter in so much physical pain. It’s hard to watch his daughter, who was previously so active, now struggle to even walk.

Since my last blog, Hailey met with the one specialist we were so very hopeful for and excited to meet. She had lots of blood drawn and was given a sweat test and a tilt table test. It confirmed that Hailey had POTS (Postural Orthostatic Tachycardia Syndrome). The doctor also told us that the head pain is too sever to be just a side effect of POTS. She didn’t believe her POTS was just from deconditioning and that something else had to be causing it. After all of our efforts to get into this specialist, she told us that she can’t be Hailey’s doctor because she only treats patients 16 years and older. Hailey will be 15 years old in a month. So, this doctor will only “be in the loop” but will not continue to treat her. Her suggestion was for us to return to the Neurologist and facility that Hailey has already been inpatient at for 36 days. They gave up on getting rid of her head pain and tried to rehabilitate her to live with it. To say that this was a disappointment was an understatement!

Every single minute of every single day is a struggle for Hailey. She has difficulty going to school for two hours a day and misses it often. Hailey went from the honors math and an excellent writer to now getting special education in both. The pain has made her not able to remember the things she has already learned. This week, a teacher from school is going to start coming to our home to work on math homework. At school, the noise and the lights make it impossible for her to concentrate. It is exhausting for her to try to look normal when she is in such physical pain. Hailey does not hang out with friends but instead has to force herself out of bed just to accomplish daily living activities including showering sitting in a shower chair since the dizziness won’t stop. We are now searching to find a doctor somewhere that can help us end this medical nightmare. We are desperate for answers. We just want our daughter to be a teen enjoying life again.

Gina Szajnuk: I spent a few hours with Hailey on Wednesday night. When I looked into her eyes, I saw Ava two years ago. She looks as in much pain as Ava did when she went six weeks with a subdural hygroma. Hailey has had this migraine for a year!? Her eyes told the truth. Her eyes told me, “Help me. Gina, please help me. I cannot take the pain anymore. Why won’t anyone help me?!” 

I looked at Hailey and promised to find a doctor that will rescan her and make sure there isn’t something else going on. Hailey’s last MRI was in November, 2014.  Her current neurologist ordered a MRI and a MRA. We are hoping she has them done this week. Amy gave me permission to discuss Hailey’s case with any and all doctors. I sent an email to both my team and Ava’s team of neurologists and neurosurgeons here in Utah. We are waiting to hear back from them. We are even willing to take Hailey anywhere in the country! We just need someone to help her. As Hailey’s Rare Advocate, please help us. Please help Amy as well as Hailey. I was Amy two years ago. Ava was Hailey two years ago. I fought for answers for Ava. I am desperate to fight for answers for Hailey. To see Hailey’s tumbling video that was taken in January, 2014, please click on the link below to their previous blog.

This is Hailey’s dream. To be able to get back to her tumbling team. Please pray that Hailey keeps fighting the pain. We do not want her to give up. We love you Hailey. – Your RUN Advocate

Christina’s Story by her mother Tava Wilson