Tuesday, October 6, 2009

Delayed Intensification Day 28/56, picking up where we left off

Maren had her big day at clinic. We left our house at 7:50 am and left the hospital around 3:20 pm. One long day. Her ANC was 1600 - a pretty darn good starting point for this phase. The LP went off without a hitch although she did require more sedation than usual. I guess some children develop a tolerance to the sedatives. She needed about 5 hours of fluids before she could get the Cytoxan.
Maren was so good while we were there. She had a few outbursts, but for being 2 years old and having parents who were trying to force her to stay in one place and not touch anything for fear of germs she was a real trooper. Dr. Ritchey, her attending physician/head honcho, stopped in to tell us that he tells all parents in this phase to be prepared for an inpatient stay - not necessarily in the next week or two, but by the third or fourth week. Talk about being the bearer of bad news. Ick. I'm still holding out hope for no hospital stays or inpatient visits. Ever.
Our little sweetie is in bed now. We still need to give her 6TG (she gets it every night for the next 2 weeks). It's another tricky one. She needs to go 2 hours without eating before she takes it, and one hour without eating afterwards. And she can't take it with milk or have any dairy during the three NPO hours. It wouldn't be such a problem if she weren't so attached to her milk. Tonight my plan is to wake her up and give it to her with juice and hope she goes back to sleep without crying for "milky." I'll need to figure out something because starting in January we'll do this every single night for 2 years with a drug called 6MP. We just got our delivery of ARA-C and the sharps container to go along with it. The home nurse will visit Wed, Thurs, and Fri. to push these meds through her port IV. One more day down. 27 more to go.


Laurie B. said...

Praying for you Emily. Sounds like you are the trooper here! Maren is along for the ride and you are the one shouldering all the burden and all the worry. Praying that things go smoothly this phase and you don't have to be inpatient at all. You are so strong! You amaze me every day (thank you for updating us) with your wit and your strength in this. May God continue to bless you all with "feel good" days.

Lynn said...

There isn't much to say after your post and the eloquent and very accurate words of your friend Laurie B.

We will continue to pray for as smooth a road as possible for little Maren and for extra strength and peace where needed.

Blessings to you and your wonderful little family.

Becky said...

You can do it, guys. Hang in there. We're praying and thinking about you all the time. Love you.

Watkins said...

So glad that her ANC was high enough to keep going. You are all amazing! I'm praying that she will get through without that impatient stay despite any odds.

Ms. Mama said...

Isa ended up in the hospital for Fever and Neutropenia. BUT, I believe that if we had pretreated her with benadryl and tylenol before receiving blood products, then she wouldn't have been admitted.

She had no culture growth either time. Her fevers went from high to low and never went up again, with the tylenol.

Just a thought. Now, that being said, an infection could be scary. Good luck!