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1/24/2016 Latest post:
On 1/6/16 Doug took Koryn in for her annual eye exam only to find out that both of her optic nerves were inflamed. Our eye doctor recommended we see our PCP as soon as possible. We saw our doctor and she ordered an MRI for 1/9/16. Shortly after the MRI our doctor called to let us know they found a brain tumor and we needed to head to the ER at Children's Hospital to meet with a neurologist. The neurologist explained that Koryn had a tumor a little smaller than a baseball in the upper right side of her brain and it would need to be removed. He was hopeful by the look of the MRI that it was a common tumor they see in older adults called a Meningioma.
On Monday 1/11/16 we met with a neurosurgeon and Koryn was scheduled for surgery on 1/13/16. Koryn went through surgery with flying colors although that was the longest 5 hours for Koryn's family. Koryn recovered at Children's until 1/16/16 when they felt she was ready to leave. We were surprised with brain surgery that she would be coming home so soon but she was doing really well and we all wanted to sleep in our own beds. The doctors were hopeful about what they saw on her MRI after surgery and really felt this was a common Meningioma and that we had very little to worry about.
Koryn continued to stay strong while we waited for the pathology report which would take 5-7 days. Again, another long week to wait for the official results so we could all breath easier. Koryn had very little pain and managed it with just Tylenol and Advil after leaving the hospital. Another sign of how strong and tough this girl is.
On 1/21/16 we were scheduled to meet with the neurologist to go over her pathology reports. When the social worker walked in first Doug and Wendy knew this was not going to be the conversation we were expecting to have. The Neuro-oncologist, Dr. Foreman, explained to us that Koryn has a cancer called Intracranial Hemangiopericytoma that is so rare they have only seen it in three other kids at Children's. Less than 3% of the people who have Meningiomas would get this type of diagnosis. Of course, we were all shocked and scared to know what would lie ahead. We are scheduled for a PET scan on 1/25/16 to make sure the cancer has not spread to other parts of her body. We will also see a radiologist to discuss radiation treatment, although that is only an experimental treatment for this type of cancer. We were cautioned to not do a web search of her cancer type as there is hardly any information that is up to date and relevant to adolescents. We caution you all to do the same. Koryn has always done things her own way so we do not expect that to change now! She will fight this her own way no matter what research may say.
Koryn is doing really well and has taken all of this in stride. She rarely complains and continues to keep a positive attitude. She is not in pain and the scar from surgery is healing nicely and is hardly noticeable unless you know the exact spot on her head. They don't shave heads anymore for those of you wondering. That was our first thought when we heard she would have surgery as she has such beautiful long hair, but the doctor said that is only on TV. Ha! That's what we get for watching too much Grey's Anatomy!
We have such a large outpouring of support and love that our needs are currently being met. It is hard to know exactly what we need so if you have an idea of something you want to do just do it as we are grateful for everything that has come our way. If our needs change we will use this site to communicate that information.
This is the story that has been our life for the past three weeks. We will now focus on the best treatment team and care that Koryn can get as we gather information about her condition.