Just like yesterday, he was concerned that Phoebe now has more lymph nodes growing in her neck and that her face is starting to swell again. He is also really concerned that they keep recurring on the same side of her neck.
The pain she is experiencing is also cause for concern. Sometimes she wakes up at night screaming because the pain is too much for her to handle. The pain could be in her neck, or in her stomach. He asked if we ever did imaging of her abdomen, and immediately ordered an ultrasound when I told him no.
Her weight is down a pound, so we are still watching that. With her appetite being lousy for the past few months he was expecting some weight loss but he is quite happy that it hasn't been more than what it is.
He agrees that we should be in no rush for surgery since she is only 6 weeks out of her last one. He feels that all we would be doing is treating a symptom and not the underlying issue. He does not want Phoebe to keep having surgery after surgery to take out the growing nodes without having other options. But on the other hand, with her nodes showing hyperplasia and continually growing, he knows it would not be the safest to leave them in so surgery is pretty likely in each case.
Since we ruled out the FAS form of ALPS we are in the rarer of the rare category. He feels that since he is not sure how to best proceed we should go to another doctor who may have access to what we need. When I told him I was ready to drive across the country to find someone who could help he suggested we see his former colleague at the Philadelphia location of CHOP.
CHOP said this doc did not usually take new patients and didn't know when she would open her schedule, but if she did it might not be til October so they would call me if that happened. Not willing to wait I took matters into my own hands.
I called Cincinnati Children's Hospital, spoke to the triage nurse of immunology and to an immunologist. I explained Phoebe's history, the tests we have had done, the results we have gotten and she said she thinks they can help Phoebe!! She told me they see a bunch of patients with ALPS, and since they have testing that isn't available anywhere else in the country that it would be best for me to bring Phoebe out there to them. I should be getting a call next week to set up the appointment so fingers crossed we might be able to go in August!
The only thing she wanted me to be aware of is that insurance could be a pain and might not cover the visit or the tests they need to do. Story of our lives! And considering what insurance is still pulling, I'm sure it's going to be a fight!
Photo: Phoebe's spirits are up