Lily’s Story

Site created on May 23, 2018

Friday May 11 we got the news that Lily has a brain tumor. She will be having surgery at the Mayo Clinic on Friday May 25 (rescheduled from May 30). She checks into surgery at 8 AM.

Around May 4 Lily complained about having double vision. We took her to open clinic at the pediatricians on the following Sunday - mostly for the convenience of not missing work or school. She had no real other symptoms and we were referred to an eye specialist. We had an eye appointment Thur. May 10 and her eyes were perfect. To be cautious the eye specialist ordered an MRI which we got the next day, Friday May 11 and later that evening we received the news. 
What we understand is that the tumor is in the fourth ventricle of her brain. Being that it is small, it hasn't blocked flow of fluid around the brain and caused typical symptoms. 

Based on the collective meetings  we have had leading up to the surgery we feel at ease with our understanding of the situation and the next steps in this process. Our access and help from our pediatrician and all the doctors is open and direct - unbelievable! We are so grateful for everyone involved. They anticipate 5 days in the hospital. Follow-up  treatment is uncertain until after surgery and will be based on tumor type and if they can fully remove it.

We are overwhelmed and so grateful for all the prayers, concern, and kindness from all our friends and family. Everything from devotions, texts, calls and visits has been so meaningful to all of us, especially Lily. Thank you to everyone for keeping us in your thoughts and prayers. 

Newest Update

Journal entry by Erika Kringen

Lily had a follow up appointment today with the oncologist, Dr. Rao and received great news! Lily's tumor is very slow growing and will not require further treatment at this time. We will go for MRI's every three months for the next year; our first check will be a week before school starts in August.

Dr. Rao was a bit more conservative about returning to normal activities, suggesting 3 months. Lily is steadily recovering and feeling better every day. She is off most medication and starting to eat more normally. Yesterday she returned to school to bring pizza for her lunch table, clean her locker and say hi to her teachers.

We are all looking forward to moving ahead with a fun-filled summer with family and friends, having the surgery and uncertainty behind us.

This short but difficult journey in our life was manageable with the love, support and prayers of all our dear family and friends. We thank each of you for everything you have done for Lily and our family. Gods blessings to you all.

With love and appreciation,

Lily, Brian, Renae and Carson
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