With cancer, you never know. With NF1, you never know. When doctors flood your body with toxic chemicals, then give you this drug to counteract that problem, and another drug to counteract the side effects of the first drug, and yet another to deal with problems caused by drug interactions ... you never know. You never know when a new wrinkle will appear.
In this case, this one is serious, but apparently manageable. They'll know more after Grace sees an endocrinologist next week. Here's the story, from their blog. Click on that link for some happy pictures, and the context of Grace's poignant exclamation: "Look, Mom! Like me, a long time ago."
On Wednesday, both Grace and Faith had appointments in Boston. Faith to check out possible influences of the JAK3 mutation. Grace for her annual Boston checkup.
They both got a lot of testing on their blood. Dr. Prockop was happy with Grace's appearance.
But on Thursday she emailed because Grace has hypothyroidism. She made me laugh because of the way she phrased that we didn't need to go to the ER emergently. Apparently, with numbers like Grace's, that would be the protocol, but since she had just seen her, she didn't think it necessary.
So Grace will go on thyroid medicine today and is supposed to be seeing a Dartmouth endocrinologist next week. We will get more answers then, but it appears that this is related to her NF1 medicine.
And there are other tests that don't have results until next week.
So please keep us all in your prayers as we navigate this new complication.
Permalink | Read 151 times
Category Pray for Grace: [first] [previous]
