Halfway through consolidation (phase 2)

The waiting room in clinic is a whole new ballgame now that she's off steroids!  She could probably play in there all day...except she usually gets called back much quicker than she'd like.  Here's a picture of her in the boat she loves now, it rocks back and forth and is really cute!  There's also a child's computer with games and a little bench that she LOVES!  She's pretty much crazy about technology so it's perfect for her!  And of course as usual all the nurses and the anesthesiologist couldn't say enough about how cute Gracie is.  They all love her the second they see her.  The anesthesiologist said if our little boy is half as cute as Gracie is we'll have some pretty cute little family.  We of course agree with all of them and think she couldn't be an ounce cuter!  Although the anesthesia nurse did tell me I looked like I could have the baby any second...yikes I still have a month and a half and I look that big??  Haha!  We were lucky and Todd was able to come with us for the second time to clinic today!  It was nice to have the extra set of hands again for sure! 

Last night was the halfway mark with Gracie's oral chemo for this phase, and today was her third and final spinal tap for this phase, making it a grand total of 7 back pokes for my little angel.  She did pretty well overall, of course she hated them accessing her port again but the actual poke didn't seem to bother her just the face that someone was wiping the numbing cream and being held down by us as they did it.  But on the positive side it was a LOT less traumatic than last time b/c they didn't have to take the bandages off this time and I had put the cream with some glad press n seal on at home (yes, it actually works better than the dressings they had given us).  One piece of advice I was glad I paid attention to when we were inpatient the first week ( one of the nurses suggested it).  I think my emotions have become somewhat steeled at clinic because I remember the first time they sedated her and how awful it is to watch her go under then leave her on the table. (although I'm EXTREMELY grateful they let us be there to help distract and comfort her until she's under enough to not know we're gone).  I think my coping mechanism is to focus on distracting her and not think about it emotionally especially now that we have been doing it weekly.  Although I must admit I still usually feel emotionally drained after a day in clinic.  However, I think we're doing well and she is adjusting pretty well to lots of the treatments, they are becoming more routine and familiar with the Dr and some of the nurses and realizes that some things don't hurt like she used to think.  We actually got her vitals today without any upset today.  A huge accomplishmen!  Blood pressure, temperature, weight and height!  Today for the first time she was able to stand on the scale for weight and stand for height instead of laying in the infant one.  She did great, I am so glad she's able to stand to do that now and that she was calm enough as well.  She was walking all around the nurses station while we waited for the nurse, then Dr and then anesthesiologist.  One of them commented on how surprising it was to see her walking around and so happy after the first month being so rough for her.  We are so grateful for the improvements she's had in the past couple weeks and enjoy every second of her happiness.

Clinic stats

Weight: 31 lbs 

WBC: 4.1

Hemoglobin: 10.9

ANC: 1.7

Platelets: 419,000

  Her levels look great and the Dr says that means she's not too sensitive to the oral chemo (6MP) she's taking, which is good.  And which also means...do I dare say it out loud?  We get next week off of clinic since she doesn't need any treatment and her numbers shouldn't change much before she would start the next phase so they shouldn't need to check her counts before her next tx day the beginning of July.  So we're hoping to enjoy this week off instead of having her admitted for two days like last time and moving :)  Two more weeks of oral chemo and she finishes this phase the 4th of July!  I plan on celebrating big!!

I better throw this picture in for good measure.  I thought it was so cute from one of our walks last week!  Can't wait to get her pictures back we had taken last Saturday!!

SIDENOTE:  I hope i don't sound negative in these posts I just want to accurately portray for our family in the future what these years were like with the good and the bad.  We have seen lots of both and I hope to be able to remember accurately years down the road and be able to relate to Gracie how it was for her, and how truly amazing she is!