Mary's New Diagnosis

We just got back from Egleston. Mary saw Dr. Vega-Fernandez this morning. From the door to the back, we saw 5 different people, answering lots of questions, many of the same repeated. By the time Dr. Vega got to us, I was ready for a nap and so was Mary. LOL Lots of thinking and talking going on...makes my brain tired, especially right now. There is so much going on and we aren't getting nearly enough sleep at night. I'm exhausted.

I really do like Dr. Vega though. She does a full physical every visit, and today was no different. She knew where Mary was in pain just by looking at her and then she could tell where she hurts in places that weren't hurting today, just by feeling her joints.

I didn't even know that Mary's left knee, leg and ankle were swollen as badly as they are, until I saw her in those exam shorts sitting on the exam table. Her left knee is really big from the swelling. Her big toe too. She is hurting so badly in her big (left) toe, the heel of her foot and her achilles tendon, that she's having trouble walking. I have my suspicions that she will be back in the wheelchair by the end of this week. I think that her going back to public school is causing some irritation as well. A lot of walking going on everyday now.

So Mary's new diagnosis is JIA/Psoriatic Arthritis. Her left wrist and hand are starting to show signs of possibly becoming like her right wrist and hand, as well as her left foot and big toe. Her right wrist and hand have muscle atrophy. So they are referring her out for Occupational Therapy and have switched her medications to now include Enbrel. She will be getting two shots a week for at least the next 3 months. She wasn't happy but she got to choose between Enbrel and Humira, the difference being two shots every week (Enbrel) and a shot every other week (Humira), but Humira stings worse than Enbrel. She picked the more frequent but less painful meds.

She was very upset that she had to have a Flu shot today. Not a happy camper. I think she wanted to throw down with Dr. Vega on that one. LOL But she did it and now it's done. She's good until next year, I hope.

I am terrified of this medication. I won't try to lie and be brave at all. I am worried sick. It lowers her immune system leaving her susceptible to infections, viruses and possible cancer and death. But it's the only thing to slow down this process and possibly keep her from becoming completely immobile before she's even had a chance to experience life.

I am a little emotional over this right now, y'all. I thought it was bad that she lost the use of one hand, but to possibly lose both hands and her left foot? This is just too much. It's crazy, right? She's 11. Eleven years old!! She still has to get her driver's license, dance at her Prom, walk her Graduations, walk down the aisle at her wedding, run marathons, climb mountains, cook! (She wants to be a chef for goodness sakes!)...her entire life is still waiting for her. She has to be able to move through it.

I am ready to crawl out of my skin and hide my head under a rock. Cancer? Really?? This medication can lead to Cancer? Am I even doing the right thing by allowing them to put her on it? Cancer is not a joke. It's not something to just try to dodge the best you can. Right?

I don't know. I don't know if I am making the right choices for her. I hope I am. I hope I can go against my own better judgement and let go and trust this doctor. But what if that's the wrong thing to do? What then? I lose Mary? Well, that's just not acceptable.

Please pray for her. For us. Please please just keep her in your thoughts and remember her name when you talk to God. We need everyone lifting her up right now.

Overcomer