Thursday, January 10, 2013

The R Word

Yesterday one of Mia's JIA friends posted a picture.  The picture was of her with a sign that said "remission", tears of joy for Jenna!!! Since the new year I've been thinking a lot about the R word and wondering if we will be able to post a remission picture.  160 more days seems like a long time to wait and wonder but I just can't help it, I'm so excited! Considering she's had this disease for around 400 days, 160 doesn't seem so far away.

Every time I think about how great Mia is doing my mind wanders thinking about the big party we are going to throw, announcing to everyone that my girl is a rockstar, baking cookies with pink "R's" on them for everyone who has helped us along the way, I just feel like we are so close!  Then I'm reminded that remission doesn't mean you're done with JIA, it means that for the time being you have no symptoms. We could throw our giant remission party and the next day she could wake up with swollen joints and a fever so why even celebrate? But then I say to myself, HECK YEAH WE ARE GOING TO CELEBRATE!!!! Even if it only lasts a day, she deserves some recognition for what she's been through and for the battle that's still ahead of us. On June 19th Mia won't be in full remission, just medicated remission.  She will still have a huge obstacle to overcome, weaning from methotrexate.  I'm not sure the timeline on when we are going to start weaning from that but I'm really hoping that by fall of this year she will be done.

Making sassy faces at Auntie Sissy
On the 22nd it will be a year since Mia started methotrexate injections, as much as I love the fact that this drug has helped her I wonder what the long term side effects of chemotherapy will mean. Will this pre-dispose her to cancer?  Will this make it difficult for her to have children?  Could this potentially affect any children she may have?  Could this shorten her life?  As Mia's biggest supporter I prefer to live in the moment and enjoy every day with her, but as her Mama I worry about how this will all affect her.

It's going to be strange to not have anxiety every Saturday "shot" night, I hate giving her shots. Counting the blood thinners I've given my poor girl around 230 injections, this is not what Mama's are supposed to do to their babies.  Mia is so tough, she doesn't even cry anymore.  What I am most looking forward to is Sunday's after we stop methotrexate. Mia is cranky and tired on Sundays because of her shot.  Sissy tells me it feels like you're hungover, tired, nauseous, headache, and just plain icky.

In my heart I have no doubt that my girl will make it to her remission date. She knows that Mama will bake her a special cake and let her eat it for breakfast that day.  Mia loves cake :)

1 comment:

  1. Love this post. You have an amazing spirit! Praying for Mia!