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Powered by LifeTypeOne year ago today, our older kids got to see a total solar eclipse, and Grace came home! These annual milestones are flying by this year, and we are thankful.
Grace's NF1/oncology doctor called Jon with biopsy results on Friday. It is the opposite of what we were hoping. Both biopsies indicate plexiform neurofibroma and it's really one big tumor that connects from the outside where we can see to the inside behind the eardrum. Surgery in this delicate area is not advised. We will have a meeting with the doctors Wednesday to discuss treatment. Some good news is that Jon has talked with other NF1 parents whose kids have done well on the medicine.
That news was a blow, but I am doing better after attending a prayer meeting on Friday and church on Sunday. I am holding onto the hope that God is still working and will heal her one way or another and in his timing.
Both Jon and I are going to the meeting tomorrow, so we can be clear on the options, side effects, pros, cons, etc.
Here is Grace with some presents from ladies at church:
And helping Daddy with his project:
I pray regularly for your little miracle, Grace! Won't stop. So sorry you've had to digest hard news. So thankful we serve the God of all hope!
I'm sorry to hear that the outcome of the biopsy was not as you had wanted. I hope your meeting tomorrow answers your questions and you can chart a path forward.
Grace is getting so big! I love all the colorful ponytails! Hugs to all!
Keeping all of you in our thoughts.
Love you all!
I am also sorry to hear the report. My heart aches with and for you, yet I'm hopeful with you knowing the Lord can and will hold you all through this and still heal Grace. He brings all His works to completion.
I/we love you all and will continue to pray.
I absolutely love the fancy hairstyle and how curious, willing to learn and help Grace is.
I'm so sorry to hear that the report wasn't good. I hope that the doctors at your meeting gave some good advice about the way forward.