Thursday, August 10: Our lives changed forever
After Lea’s balance and coordination became significantly impaired over the last few days (among other very concerning things) we took her to our doctor who suggested we go right to the Yale ER for tests.
Lea went in for a MRI on Thursday, which showed an inoperable brain tumor.
Friday Lea had surgery to biopsy her brain to determine exactly what we are dealing with so we know how to treat it.
She has been through so much over the past few days and is truly the most brave girl we know.
Wednesday, August 16: The unimaginable
Thank you for your continued support and prayers. They are the only things getting us through the past week.
We wish we were delivering better news to you today. Yesterday we met with the team who told us Lea has a high grade gleoma called DIPG. This is very rare and only about 300 cases across the country each year. There is no known cure for this tumor and it is fatal.
While chemotherapy is not an option for this type of tumor, we are moving forward with radiation in hopes of some short term symptom improvement and to buy us some time with this amazing girl. Radiation will run for about 6 weeks at which time we will look to experimental, clinical trails for hope.
There are various clinical trails around the country trying to find treatment options for this type of tumor. None have shown long term success, but what is being learned through these trials provide hope that a treatment can be found.
Right now we are taking it one day at a time and enjoying every minute we get to spend with Lea.
We are praying for a miracle, but also making peace with our situation
Please continue to keep our family and Lea in your prayers.
Our faith is still in a mighty God. We know He has a plan for our lives and we trust in Him, yes even now, even with this.
The outpouring of love and support has been incredible. The Tuff Girl/FMA community mobilized and we feel so loved and supported by you all. We can not express with words how much your support and prayers mean to us.
We will be returning to the gym probably sometime next week and we need you there. We need to see your strength and power. We need your hugs and hi-fives. We need you.
Please understand that we cannot discuss details of this situation at the gym. We need to draw on your strength as you do from us.
This past week has certainly provided perspective on what is truly important in life.