Our Millie Girl

Our Millie Girl

Tuesday, November 26, 2013

Well, shoot...

It's been six weeks since Millie has been off of Prednisone and on Methotrexate only. I've been nervous with the weather getting colder and with no steroid that she's been hurting. Every now and then she is slower in the mornings and definitely more moody than usual. She complained twice about going into a squatting position and her physical therapist noticed her struggling to step up onto a stair step with her right leg. I haven't noticed any inflammation though.
When we had her Rheumy appt last week I was expecting to hear that she looked good and that it was normal to have joint pain now that the weather has cooled down. I did not expect to hear that her arthritis was back. But that's what happened.
I was so shocked. Dr Ede said that both wrists and her middle finger on her left hand had the arthritis present and they were flaring. He then told us our options. First option being to do nothing and continue the chemo as we have and hope nothing gets worse. Second option is to do the joint injections into the three joints and hope it takes it away and hope no other joints flare. Third option is to add another weekly injection on top of methotrexate (Enbrel or Humira) to help get rid of the arthritis that's present and to help prevent future arthritis.
All of these options are a 50/50 chance. They either work or they don't. We decided to meet in the middle and do option number two. She'll get the joint injections in her wrists and one finger and we will just hope for the best as we have since she's been diagnosed. Her procedure will be Dec. 12th at Phoenix Children's Hospital.
This time around the news has hit me differently. In the past when Dr Ede would check her, I always expected to hear that the arthritis was present. I could see it, notice it, and others could tell too. It was affecting us every day. So it wasn't ever a surprise. Then we went three months of having no arthritis and I began to feel as if her disease was a thing of the past. At least when it came to symptoms of it. So as we sat there and I saw him notice it and saw Millie react, my heart sunk.
I had to leave the appointment early to head for work (as a temp). I had no time to take it all in, or to talk to Steffan about it. I just had to keep moving. And I was angry.  At myself. How did I not know? How long has she been hurting? Was it my fault? There's probably so much I could've done differently to help prevent it. I am so sorry Millie. I wish I could go back and change things.
But I can't. We just need to continue to be strong for our Millie girl. She is always so brave and I know she can handle any trial that comes her way. I am always amazed by her strength and I am so thankful for what she teaches me.
Thanks to everyone who continues to reach out and be there for our family and little Mills. And thanks for the prayers and good vibes ;) It means everything to me. I'll keep posted on the joint injections...

Saturday, November 2, 2013

"Millie has stritis"

I found this video from September 18. Millie is in a silly "looking for attention" mood and I ask her about her scar: