10 days left of steroids!

Gracie playing with her xylophone yesterday.

Playing with Grandma after she got here. 

The surprise of all surprise she stole Grandma's birthday ice cream cone (yes we celebrate big here these days) of course before grandma had tasted it or she wouldn't be able to have it.  Yes she is licking an ice cream cone for the first time in weeks despite our best efforts to encourage her to eat ice cream!  She hasn't wanted anything sweet at all but has branched back out a little bit and actually had a few licks as well as some applesauce and yogurt (as long as we put it in her macaroni and cheese bowl and switch off every couple bites!)

 Pictures from clinic today.  She was playing with her PICC line for a minute after they drew her blood.  We had her pre-op appt for the placement of her port they are doing June 7 to take the place of the PICC line.  It was the first time I had to fill out a questionnaire about her and mark yes for cancer, a little bit of a sobering moment for a mother.  We spent an hour down there then headed up for her regular clinic visit.  Her counts were looking better today!  Stats for the day:

Weight: 33 lbs (we only gained about a pound this time instead of 2 1/2 lbs)

ANC: 300 (up from 200)

Hemoglobin: 8.5 (stayed the same)

Platelets: 254,000 (jumped from 140,000!)

No transfusions again!  Yay!!  The Dr says she doesn't anticipate any drops in her levels for the next month probably so we should be able to avoid transfusions for a while we hope!  We could have gotten away with a fairly short day and been out of there by about 11:30 if it weren't for my other two errands that took several hours after.  Instead we didn't leave til after 3 pm.  Thank heavens Grandma was there to watch Gracie so I could leave her safely on the oncology floor while I ran around the dirty hospital for her sedation appt and trying to figure out the pharmacy/insurance issues again.  Everyone in the clinic knows us by now and they all love Gracie.  They are so amazing to work with, they will do everything they can to make things go as smoothly as possible and I feel very lucky to have such wonderful nurses and dr's working with us to get her through this awful process.  She has been more irritable and uncomfortable the past two days and we've had to give her oxycodone regularly to help with the pain.  We have tried multiple drugs to try to help her sleep and they are effective sometimes but didn't seem to work well last night.  So we got some Ativan to try (but they don't have it on hand so we are hoping it will be in tomorrow) it has seemed to help her relax in clinic a few times for different procedures. 

Tonight we got her to stand next to the coffee table for a minute or two and play with some toys!  May seem small but it's so wonderful for us to see!  After over 3 weeks of not walking.  The Dr said today we need to start trying to encourage her to stand and hopefully she'll start walking again without needing physical therapy.  She's still pretty miserable from the steroids so it's hard to want to make her do anything.  I used to be ok at tough love when I needed to, but it's never been more difficult than now.  Every once in a while we get a smile or a laugh out of here it's pretty rare from the steroids and it's usually when she throws something like her binky on the floor :)  I guess she delights in us washing them again for her!!  She's still our sweet little Gracie, but we can't wait for 2 weeks when she should start acting more like herself after these steroids wear off!