Wednesday, June 24, 2015
Sister Like Sister
I do not have all the answers yet, Oncology and Radiology did not have all the answers and are sending us out to Neurosurgery as soon as possible. We were supposed to see them today but the main surgeon was called into the OR and we were unable to see her before she left. After her consult I should have more answers but here is the run down from today,
- Yes, Gracie has an issue that developed from her issues around her birth. We are being referred to the Reginal Center for more testing. We will not share this diagnosis publically and ask that you treat her normally. It is a mild case.
- Gracie has the same optic nerve tumors as Emma in BOTH eyes but much smaller. We do not know if they have become cancerous or if they are NF related and noncancerous, we will be seeing her normal eye doctor to compare eye exams from her exam in January then taking her to a pediatric opthamologist for further testing. If anyone has a contact locally or in the Bay Area please let us know.
- Gracie will be having brain surgery very soon. This is the part that we do not have many answers yet. It may or may not be related to her NF issues but she has an issue that requires immediate attention.
So like I said, all bad news today. I feel overwhelmed and at a loss for words. Many of you have asked how to help...I really do not know. I do know that I will be very busy with more appointments and phone consultations so any help with meals or kid play, busy work is great. If anyone has connections on doctors that may be able to help please let us know. We are willing to travel if needed but local or LA area is preferred since that is where we have help. Positive distraction is great too. Honestly I do not want to talk about this much so if I bring it up we can chat but otherwise please just distract me. Let's talk about positive Bible verses, God's provision, kid's clothes, homeschooling, holiday plans, gardening, anything but cancer and brain tumors. Last, please do not ask me what this means for the future...I don't know and I can't think about it. I have to live in the now.
I will update when I have more info. Gracie did great today, she charmed all the nurses! A huge thank you to Katie for watching Emma today and making us dinner!