Kialyn's journey into the unknown started back in June of 2017. Kialyn a healthy, loving, happy, 14 year old boy had his first seizure, which led to a bunch of testing in Rochester. This testing showed that Kialyn had multiple cystic lesions in the left cerebral hemisphere cortex of his brain. At this time they also found white matter in the left hippocampal formation, anteromedial left temporal lobe, and insula. The doctors at this time put Kialyn on Keppra to control the seizure activity. This appeared to help and things were good. Kialyn was enjoying his life as a teenager singing, playing piano, and making memories with his friends. Kialyn went on a mission trip and enjoyed spreading the word of the Lord and being involved in these awesome opportunities to help others. Kialyn was seizure free and things appeared to be great.
Then out of the blue in October of 2018 Kialyn had a serious seizure that put him in the hospital. With this seizure Kialyn had respiratory failure that led to him being intubated and needing further testing. This testing showed the same issues that were noted above. At this time they found that the cysts and matter in Kialyn's brain cannot be removed without compromising Kialyn's life severely and as a family and medical team they decided removal is not a good option. They stabilized Kialyn and he was eventually able to go home. After this scary situation Kialyn remained seizure free for about a year. Things were great for Kialyn at this time. He was enjoying life as a teenager. He was working, and making memories with his friends and youth group. He had the opportunity to go on a few more mission trips and have some amazing life changing experiences. Kialyn was finally enjoying life as a teen. He had got his license and was ready to conquer the world.
June 2020 came with a vengeance. Kialyn's seizures became problematic and were severely affecting his life. This led to an MRI. The MRI showed that the lesions, cysts, and white matter in the left hemisphere of his brain had progressed. There were more cysts and the previous cysts had grown. These findings are in favor of an extensive glioneuronal tumors, which are very rare. These new findings and the presence of seizures have caused Kialyn to not be able to work or drive, which are two things that allowed Kialyn some independence and joy. Kialyn despite all of this remains strong and finds joy in time with his friends and family.
October 2020 Kialyn went through prolonged EEG testing in the hospital where they induced seizures to try to find out more information and a plan of action for the issues he has going on. After this EEG testing they ended up deciding to do a biopsy of the tumors. This took place in December 1st, 2020. During this procedure they took 4 samples of the tumors so that they can diagnose them and figure out a plan of action. This surgery has left Kialyn with 16 staples on the side of his head, and he has 4-6 weeks of recovery from this procedure alone. One good thing is, the doctors are very confident that they will be able to diagnose the tumors and come up with a plan of action. Again removal of the tumors is not an option, as it would compromise Kialyn and his quality of life. So radiation and chemotherapy are the only options that have been discussed at this time. With these two things being the only option for treatment, there will be many many trips to Rochester in the near future.
So I am here asking anyone and everyone from the bottom of my heart, if you could please help this amazing family during their hardships. It would be greatly appreciated. As we all know, 2020 has been a rough year for everyone, and it has been extremely rough for this family. But through it all they have managed to keep the faith and push through everything that has been brought their way. But as treatments start and daily appointments in Rochester begin, this family will need help. Financially for anyone to go through something like this is tough, but to have to go through this during the holidays, a pandemic, and being a senior in high school is heart breaking. Kialyn's mom is remaining strong and keeping the faith, but she cannot do this all on her own. So I am praying and asking for help for them. They are such humble people who wouldn't want to be a burden on anyone or ask for help. But they need it and I am asking for them. Thank you in advance to anyone that is able to help. Also prayers are needed and appreciated through this trying time. Keep them coming as they need them as well. God Bless you for taking the time to read this and thank you for any and all help you provide this family, as it will not go unnoticed.
- Carrie Christenson
- Delores/ Robert Ferry
Organizer and beneficiary
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