Posted on March 16, 2018
There are a couple of recent Facebook posts from Kristin that I wanted to share:March 14:
Not the update that we wanted to post.
Here it is - it’s back for a third time.
It’s everywhere 5 or 6 new spots including her spine and her only adrenal gland and her arm and her legs. She progressed on DFMO - we will talk to Dr. Scholler tomorrow and try to get home as fast as we can. Our goal is to keep her comfortable till the end - maybe a few weeks, maybe a few months. Sometime before her birthday they assume.
As God as my witness I will never stop fighting for these kids! Cancer didn’t win - God wins and love wins!
They did a lymph node biopsy today and it is most definitely relapsed / recurrent neuroblastoma.
We will try to get the infection under control as well and do an MIGB scan next week. Dr. Sholler is doing some genomic sequencing of the lymph node today and will look for targeted therapies but that keep her out of the hospital and are easy on her.
We are going to have to make some tough decisions because of the lack of healthcare in the desert they want us within 30 minutes of a hospital with a hands on pediatric hospice team. I don’t know what that looks like - I don’t know anything. I only know that my precious daughter and us have fought the good fight and will continue to seek out God in all of this. Pray for my tender heart, it is most certainly broken into small little pieces.
You know it’s bad when the oncologist cries with you.