Day 29 on Delayed Intensification

Tomorrow is count dependent and Avery's ANC needed to be at least 750 and platelets needed to be at least 75. I was secretly with Avery when she kept saying: I hope my counts are low, I hope my counts are low. It's crazy they understand what all this count business is about. Her ANC is 800 and platelets were 160 so that means we head back up for another trip to PCMC. Tomorrow she gets these chemos: Thioguanine (TG) it's a pill she'll take days 29 to 42, Cytoxan chemo, a IV over 30 to 60 minutes, Cytarabine (ARA-C) IV over 15- 30 minutes, she'll take this chemo the next 4 days, then 3 days off, then on for 4 more days. Lastly, tomorrow she has another Lumbar puncture where they put Methotrexate into her spine. She can't eat after 9:00 in the morning until about 2:00 when the procedure is done. Sometimes this isn't a big deal, but the steroid hunger is still present so it makes it tough when she wants to eat. It's going to be a long day, but we are half-way through this phase!

UPDATE FROM OUR TRIP (Oct 14th)

We survived another trip at PCMC. Catie (Jed's wife, Avery's Aunt) went with us to help with the baby and to experience a glimpse of what Avery has had to go through. We appreciated her coming. I tell people it's an experience you'll never forget. All these children, under different circumstances, having to overcome so much.  It changed the trip up for us and she is always so helpful and thoughtful.

Avery took awhile to wake up from her LP. I'd like to try the lighter sedation method some time, but they don't offer it on Friday's. After she got her chemo's (Cytoxan and Ara-c) we had a hard time explaining to her about how much better it would be to stay accessed for the next 4 days. It made her upset and she throw up all over me, her, the blanket and wheelchair...good times (Note to self: Seriously start remembering a change of clothes) She hated the thought of the needle being left inside her similar to her feelings when we had to talk to her about her port. (okay that was a lot more difficult)  I try to say it's just a tubie (some mom's use that terminology instead of needle) but she's too smart and informed me it was a needle not a tubie. It was a little rough Friday and Saturday, but by the third day she started thinking... this isn't so bad I at least don't have to get poked everyday. She had it taken out on Monday (17th) for a 3 day break then back accessed for the next 4 days. It's amazing all the hurdles we have to get over. We have only kept her accessed one other time and after 5 hours of hating it I was just about to call the home health nurse to see how I could take it out. She ended up not making counts so I had to go remove it anyway. At the hospital, I told her she didn't have a choice the first 4 days, but I would let her choose for the second round of  4 days staying accessed or getting a poke everyday. She choose staying accessed. I know she could do it!

I wish I would of taken a picture of Cait and Avery at the hospital, but I guess there was too much going on. Here's a picture of Avery playing doctor with her sister. I think it's good therapy for her to have someone else being the patient:)

 One of our home health nurses, Kristy giving chemo. She does a great job!