The Bichler Family
In February 2016, Shawn started experiencing discomfort in his groin area. He kept pushing it off, thinking it wasn’t anything serious. In June, he was finally convinced to go in and be checked out; as the discomfort and pain continued to get worse over time. Towards the end of June, he was diagnosed with Testicular cancer, confirmed by blood work and an ultrasound. He then had to be seen at urology. On July 7th 2016, Shawn went in for surgery to remove the left testicle, which was found at a Stage 1. After surgery, he was referred to be under active surveillance for the next few years; CT scans and X-rays every 6 months, along with blood work. So far, everything has been in the clear.
With Shawn’s battle still fresh in their minds, in October 2016, Sky started having tongue and facial twitching and even went unresponsive within a few days after that. It was later found that she was having seizures and was diagnosed with “Tuberous Sclerosis” at the time. Prescribed medication seemed to help control her seizures through most of November, yet Sky’s symptoms returned and grew more severe with 10+ episodes daily.
On December 7th, 2016, Sky was hospitalized for 7 days, at OHSU Doernbecher Children’s Hospital in Portland, Oregon undergoing several tests (MRI, EEG, EKG, PET scan, ultra sounds on her heart and kidneys, genetic testing, and several medication changes). Results on the EKG showed that Sky had developed a minor form of “Dilated Cardiomyopathy”. She was prescribed heart medication to hopefully heal her heart condition. After being examined by the epilepsy specialist and reviewing the MRI, results showed Skylynn’s brain had an abnormal growth which was causing her seizures. Maintaining a low carbohydrate Modified Atkins Diet for Epilepsy was recommended by the neurology team to help Sky’s body produce ketones instead of carbohydrates, in hopes that it would help reduce her seizures.
Sky had surgery January 3rd, 2017 to remove the abnormal growth, which was an 8 hour process. Sky was able to go home a couple days after surgery, but was admitted to the local hospital because she wasn’t eating or drinking anything the week following surgery. Eating and drinking again, Skylynn returned home to continue healing. Post-Op, Skylynn had left side weakness in her limbs; because of this weakness, she began physical therapy once a week in March 2017. After only 3 sessions with PT, Sky was no longer “eligible” because of her progress (though she was still unable to write or throw a ball with her left hand at that time). With therapy no longer available, the Bichler’s had to take it upon themselves to help their daughter’s physical needs, to the best of their ability.
Skylynn was improving well, even faster than most expected until Mid-April, when her seizures returned. Sky started having more weakness in her left arm and left leg and her leg started giving out on her at times. Towards the beginning of May, Sky had twitching in her left arm and leg, which made it difficult for her to walk. Then on May 31st, 2017 Sky went in for another EEG, which showed seizure activity happening again. At that time, they confirmed that it wasn’t “Tuberous Sclerosis” and planned on doing more tests, such as a lumbar puncture and another MRI.
On July 27th, 2017 Sky had an MRI and lumbar puncture. They are still currently waiting for the results. Sky will have to have another surgery in the near future, confirmed by her neurologist. At this time, Sky is still unable to walk much or even do her normal activities of daily living. Please keep this wonderful family in your prayers.
