On Thursday Emily & I went for her port consultation. I suspected that we would make the 2+ hour drive only to have a 15 minute appointment. I was right. It's a nice drive, but it is long!!! On the way up I told her to think about any questions that she may have. I explained that, since it's her body and her appointment, she needed to speak up whenever she had something to say. I purposely held back :) She did very well!!! They first asked why she wanted the surgery. She explained that her veins roll, it takes a lot of pokes, and she's tired of being anxious. So, we have a date! September 27th. I'm not 100% sure of the details yet. I know that sometimes insurance won't cover a med if it's a day early, and she'll technically not be due for her infusion until the 28th. The said that if insurance won't cover it a day early, they can admit her overnight and do her infusion the next day. If all goes well, the weekend right after that we should be going on a family weekend camp out. I'm keeping my fingers crossed on that one. I realize that everything is up in the air with my mom and her treatments. She hasn't had her appointments with her oncologist yet, so it may be that I am needed to help my dad, but we'll see. That's a whole other blog ;)
Otherwise, things are reasonably great with her. She's been taking the stairs more often than not at school! She really credits the Rituxan. She says that she can feel it working almost immediately. Maybe it's psychosymatic, but who am I to tell her otherwise? I'm just so happy that she's finally feeling some energy. I'm happy that school is back in session. It gets her moving more often than what we've been able to do for her. We had her 2nd loading dose of Rituxan last week (I think). We've been at the hospital almost every week. At this point, I forget what we've done when. She shouldn't need another dose for another 3 months! That said, after this Wednesday's infusion, we should have a 4 week break!!! Oh, I so need that! I'm quite sure that she does, too. I'm so grateful that we had such a great summer to make up for all of the torture that she's had. Not that it's easy to watch; it's horrible!!! But at least there's an end in sight. We have a doctor's appointment for her on Wednesday when we're there for her infusion. I hope to update more then.
Oh, and one last note. My son, who has psoriasis. He has been fighting it since 2008, just after Emily was diagnosed with JA. Now his jaw is clicking. It is likely TMJ. I plan on asking our pediatric rheumy about it on Wednesday, too. One of my biggest fears is that his psoriasis will turn into psoriatic arthritis. I'm hopeful that this is just TMJ!!!
*My 13 yr old is an old lady that turns purple* My 13 yr old daughter has Mixed Connective Tissue Disease, (Lupus) which means multiple overlapping autoimmune diseases. She has Dermatomyositis, & Juvenile Arthritis. Yup, arthritis. She turns purple when her hands and feet get cold, which can happen from A/C. She was first diagnosed at age 6. My 11 yr old son has Psoriatic Arthritis. All of these are Autoimmune Arthritis. We share so you can learn!
Sunday, August 28, 2011
Subscribe to: Post Comments (Atom)
Post a Comment