Trying to Decide...

Trying to decide what to do...do we put our young son on methotrexate and steroids? Do we just do the methotrexate, do we just do the naturopathic stuff...what should we do?

This was what we struggled with in December. Christmas was fast approaching, so we decided to put all the medical stuff on hold. I was feeling stressed out by the decision...especially since I had filled the prescription for the chemo and when the pharmacist came out for the consult with me, she was really concerned about the age of our son. She pulled open the package and had me read the side effects. It was scary! Especially the part where it said it could result in death! Nice! And when the pharmacist looked at me with tears in her eyes and asked me to keep in touch, I knew we really needed to find an alternative.

So we tried to go on with life and pretend that all was well. We wanted the kids to have a nice Christmas without the underlying stress that was permeating our home. Jeff and I had our annual Christmas party with all our friends, and truly had a great time. But at the same time we had nothing to talk about since our whole world was consumed by Hank's illness and we weren't ready to talk about it. Besides, who wants to come to a party and talk about that kind of stuff?

Christmas and New Year's were great and we were able to have a few weeks of no doctor's visits and enjoy our family. But probably every conversation I had with Jeff was about whatever research I was finding about treatment, etc.

On New Year's Day I received an email from a woman who also has a 7 year old son with PRS. She asked if she could call me. I sent her my phone number and she called right away. We talked about our experiences and compared notes. She asked if I had considered surgery or if I had read about Dr. Siebert. Since the rule of thumb is to perform reconstructive surgery after the disease "burns out" or slows, I had not looked into it. We want to stop the progression, not let it "run its course"! I had glanced at Dr. Siebert's article on the PRS Resource web site, but quickly passed over it.

She told me to look at it again. That he doesn't wait for the disease to stop...it's not reconstruction...it's intervention. What? Hello? New word? New idea? An alternative? That is the moment that things changed for us. I went back and read what Dr. Siebert had to say. I scrolled down and looked at the before and after photos. It seemed to good to be true! A new year... a new hope!