Haley's Recovery from Encephalitis

On June 2nd, 2018, Haley was diagnosed with a rare disease called Anti NMDA Receptor Encephalitis. This terrifying illness is an autoimmune response that attacks the NMDA receptors located in the brain, causing severe inflammation. This can cause psychosis, hallucinations, agitation, violence, seizures, loss of consciousness, loss of autonomic functions, and leads to death without proper treatment.

For more information on this disease, go to http://www.antinmdafoundation.org/the-illness/what-is-anti-nmda-receptor-encephalitis/.
There is also a book (and movie adaptation on Netflix) by Susannah Cahalan called Brain on Fire, which may be a more entertaining way to learn more.  

Haley’s case started on Saturday, May 12th, 2018. She had a bad headache and tried to go in to work that evening, but got worse so I drove her home. On the way, the vomiting started. I took her to urgent care the next day, where they diagnosed her with a migraine and sent her home. Three days later, when she was still dizzy, had a horrible headache, and constant vomiting, I took her to the ER. They also agreed that she had a bad migraine, gave her some fluids, a couple prescriptions for her symptoms, and sent her home again.

She seemed to be doing slightly better for the next few days, until she called me to tell me she thought she was having a stroke. I arrived home at the same time as the ambulance, and while she was still walking, she had noticeable weakness on her right side, along with slurred speech and confusion. She stayed overnight in the hospital. They ruled out a stroke, but several tests later, they diagnosed her with meningitis (unknown cause), and sent her home with antibiotics for a possible tick-borne illness.

Again, she started doing better, and her headaches and vomiting stopped. However, the confusion persisted, and she began having terrible double vision. My mom and I took her to the ER again early in the morning for her confusion, nearly a week after being diagnosed with meningitis. Upon arrival, they said they finally got back the tests for a tick-borne illness, and she was positive for Rocky Mountain spotted fever. She was already on the antibiotics to treat that, so she was sent home for the last time. Less than 24 hours later, in the early morning hours of May 27th, Haley was admitted to the hospital, and has remained under hospitalization for the past 50 days.

Haley began experiencing severe psychosis, which prompted my mom and me to bring her back to the emergency room, although we were scared that she would be sent to a psychiatric hospital. Thankfully, she was (incorrectly) diagnosed with Rocky Mountain spotted fever, so they knew she had something wrong with her medically and not psychologically. Eventually, after nearly a week of vivid hallucinations and violence, they found the antibodies that were attacking her brain.

On June 6th, we were able to get her transferred to KU Medical Center. They had her hooked up to 24/7 EEG monitoring for seizure-like activity. She had been experiencing episodes of catatonia, and for several days was almost completely unresponsive, so they inserted a feeding tube. She had to be transferred to the ICU for a pulmonary embolism and deep vein thrombosis, which just added to her long list of ailments. Her treatment started with 3 days of steroids, 5 days of IVIg infusions, and 3 more days of tapering steroids.

On June 11th, they found a teratoma (dermoid cyst) on Haley’s left ovary. Teratomas are the cause of Anti NMDA Receptor Encephalitis in many cases, and thankfully, the removal of the cyst stops the production of the antibodies plaguing her brain. They removed her whole left ovary in surgery, and 3 days later she regained consciousness. She had internal bleeding after her surgery because she was on blood thinners, but after 2 blood transfusions, she was better.

Haley has slowly been making progress back toward her normal self. Over the next few weeks after her surgery, things were constantly changing. Little milestones excited us, such as echoing our words. The echoing evolved into talking, which evolved into conversation. She regained some control over her own movements, and was able to sit upright in bed, stand, and eventually took steps. With every milestone she hit, however, we would see a decline. Two steps forward, one step back. In this time of recovery, we still had incredibly violent or emotional moments, insomnia, hypersomnia, a terrifyingly bad nosebleed from her blood thinners, and persistent hallucinations.

She finally was approved to receive a mild form of chemo to suppress her immune system from attacking her brain. In the week after this medication, she started walking in the hallway of the hospital, eager to get in the wheelchair and explore outside her hospital room, playing Nintendo 64, and having real, meaningful conversations.

Her memory is 100% intact from before she got sick, and she is able to make new memories as well. She was transferred to rehab on July 11th, but returned to the hospital 4 days ago to receive plasma exchange treatments. Her strength is returning quickly, and I am finally able to see my sister being herself again. She is still very confused about why she is in the hospital, and has bouts of agitation and hypersomnia. Her plasma therapy is finished on Wednesday, and we don’t know where we are going after that (home, rehab, or staying in the hospital).

I know so many of you have been worried about Haley, and I apologize for taking so long to update. As you can see, this is a complicated matter that requires a lot of time to talk about, and at times I am just too overwhelmed to provide a response. We greatly appreciate everyone who has reached out or asked about Haley, even if I haven’t responded personally. I am sure you understand.

This fundraiser is mainly to help get Haley back on her feet when she is able to return home. Completely aside from any medical costs, this unexpected illness has placed a huge burden on the family. In just a week, the lease is up on my and Haley’s apartment. I have been out of work for almost 2 months to be in the hospital with my sister, and my mom is taking unpaid leave from her job to be with Haley as well. All Haley wants is to go back home to our own apartment with the cats. My only hope is to be able to provide Haley with a comfortable place to go home to when she finally gets discharged. Even after discharge, she will still need constant care for at least 6 months at home. My mom, dad and I plan to care for her in this time, but that also means taking time off work to provide that care.

Thank you all for thinking of us these last 2 months. She is getting better all the time, and although she has some bad days, we expect her to make a full recovery. We had several scary moments, but I finally feel comfortable making this update. Any and all support is greatly appreciated!

My name is Peyton Williams, Haley's sister/roommate and creator of this campaign. Haley lived with me in Lawrence, KS until her illness, and is currently living half-time with my mom in Garnett, KS, and half-time with me in our new apartment in Lawrence. Any funds raised by this campaign go directly to helping with Haley's living expenses, including food, rent, travel (for appointments) and medical expenses. I will be making any withdrawals associated with this fundraiser, and our mom and I will have sole access to all funds, since Haley's disease makes her very impulsive (and therefore not great with money!).