Tuesday, June 25, 2013

Waiting for counts... Again!

Hey everyone. So low counts and a low fever has caused Jillian to be inpatient for the last two weeks. We are still up in Stanford waiting for her counts to get up to 500 so we can start her chemo again. Her numbers right now are at 120. She actually contracted a bacteria that has been giving her diarrhea for the last month or so. She has been on antibiotics for two weeks treating the bacteria but she is still showing symtoms. She's been going so much that she has lost some weight but we have managed to stop the loss and maintain where she is at right now. Which is good. She's still looking pretty skinny and its hard to see her like that but she's eating and that's all that matters. 

Her mood is great still. The last week has been just a waiting game in numbers so she's been very active in the room. Since she's in isolation she can't leave the room which is harder for me I think, but I have been keeping her entertained with activities and games. I didn't come as prepared as I normally do because this stay was so unexpected and we were ambulanced up. But we are managing with what we have! 

We are waiting to start re-induction 1b which consists of regular weekly chemo and a lumbare puncture that we will hopefully get done by the end of this week. She's still doing great with her chemo and still has managed to hold in to some of her hair. It's bizarre to see how far we have come and how well she is doing. We couldn't be happier! 

We have been at this for almost 8 months now. It's a little like what I expected but also so much different since I didn't really know what to expect. Being inpatient can be so depressing at times too. You can really tell the parents who are new diagnoses and I feel so bad for them. Even though its been only 8 months I feel like such a veteran when it comes to leukemia. I want to tell them that it gets easier and better but you can never predict that. We are just so lucky that Jillian is doing as well as she is. But at any time she could turn a corner and things can change so fast. I am always so grateful for her progress right now but can never rest easy. We have done the calculations and if her treatment continues to go on without any interruptions then we should be in maintenance on November 4th. Seems is long away but to be honest these last 8 months flew by! So keep those prayers coming. We need to make counts ASAP so we can start her back up on chemo. No more waiting game!! Thanks for being patient with me everyone! Hope you are all well. 








Saturday, June 1, 2013

Weekend fun

I wanted to share an amazing picture my sister captured of Jillian yesterday when we were at the park. We had such a fun day playing and being goofy all day. It's great to see her so alive and playful. We head to Stanford on Monday to get some chemo done and check labs. My wonderful oldest best friend forever April is coming with us so we will have someone to entertain us! :-) hope you enjoy the picture. Jill is having a great weekend!!