Reassurance

I did a last ditch effort to see if there was any point in holding off moving to a biologic.  To be clear, I have no intention of standing in the way of my child's treatment, that't not an option.  But obviously, the biologics are the big guns and Phoebe has a very long journey to go, and if there was any point to saving them, we would.

Last Friday, I called Dr. C's office to see if Phoebe could get her eyes looked at before May 3rd. Dr. C has no openings until August, except, I guess, for emergencies.  They left her a message and then called back to say nope, she was only interested in seeing Phoebe for her May 10th appointment, after she has started Remicade.

So that was kind of disappointing.  I guess it would be mainly for my parental reassurance that we are doing the right thing, but I can't help wondering if in the three weeks since her last eye exam, has there been any change?  With 3 more shots of mtx, are her eyes any better? Or are they worse, because we have been tapering steroid drops?  I feel like I just don't know.  And if her eyes are better on May 10th, who's to say they weren't already improving?  Anyway, I was really let down that I couldn't get an answer.  I felt like it wasn't an unreasonable request and it's frustrating that these doctors are so booked up.

After the weekend, I was still reconciling myself with sticking with the plan, so Monday I also emailed Dr. B about all this, because it's just so much better when you can email with your doctor.  Her response was very reassuring-- that 3 more weeks of mtx probably would not have made a significant change with how severe Phoebe's uveitis is and that tnf inhibitors will just be a much better therapy for her.  She said I was doing a good job advocating for Phoebe, which is what I'm just trying to do my best at.  Sigh.

I love you, Phoebe and I am going to be with you and hold you through everything we go through tomorrow.  I can't promise that I won't cry, but we can cry together, and still be strong, my baby.