Tomorrow (April 9) is a big meeting with Grace's doctors to discuss how to move forward with her ear situation. The results of her biopsies were not great news. It gives one the ping-pong ball feeling: No worries, it's just fluid in her ear—Maybe it's a neurofibroma, we'd better do some testing—It might be a fibroma, but it's not causing her hearing loss, so we'd better do some more testing—Great news, it's not an NF1 fibroma at all, but we're going to take biopsies to be sure—Oops, the biopsies say it's definitely a plexiform neurofibroma, and the options for treatment are not pleasant.
As usual, Heather says it best. You can see some other news and pictures as well on their site.
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.
