Sunday, January 25, 2015

Hospital Stay

It's been hard since Lilly's started maintenance, because we only find out once a month what her numbers are and whether she's "safe" to be around people because of her compromised immune system. Last Wednesday Lilly went to visit her class at school. She wore a mask the whole time and we tried to be as clean as possible. Well, she got sick. Just a cold. On Thursday I noticed she had a patch of petechiae on her back so I called our nurse Aubri and asked about getting a CBC ordered. We did the CBC on Friday and they called us and said her platelets are low, but not too low and just watch her close for more bruising and bleeding. We also stopped all of her oral chemo because her ANC is ZERO. It's not supposed to be that low during maintenance.

And of course, on Saturday morning she got a fever! Boo. We knew since her ANC was zero, she'd be admitted. The good part is since we already knew what her numbers were, we were able to avoid the ER and go straight up to the 4th floor. She's been getting antibiotics and tested positive for rhinovirus. I know she got sick from school. Too many germs for Lilly still. Maybe we'll try and go back after cold and flu season is over.

Last night after Lilly fell asleep her oxygen saturation levels dropped to 83. She required one liter of oxygen to keep her levels up. Her heart rate was also high in the night, running around 135-145 while she slept. This morning they did another CBC and she was low on blood. Her platelets were low, but not low enough for a transfusion. They also heard a murmur in her heart which can also happen when you're low on blood. It was their hope that once they gave her the blood, her heart rate would go down and her oxygen levels would go up.

While waiting for her transfusion, we decided to have a "spa day." Since Lilly's ANC is zero, she has to stay in her room EXCEPT if she decides to take a bath. It was fun to pretend we were at the spa. She played in the tub for a good hour. It was all fun and games until we tried to take the Avagard protector off her port. It's a plastic covering that prevents her port from getting wet. Well, it didn't work. Her port was pretty much soaked and she had to take all the tape off and deaccess. She was so upset! And then she was even more upset when they had to access her port again and the nurses struggled so they had to do it TWICE! Not a fun day! By the time the blood was finally ready, Lilly was ready to get her Benadryl and take a much needed nap.

It was so fascinating to watch the transfusion... As the blood was going in, her heart rate gradually slowed down and her oxygen levels gradually went up. We hope her oxygen levels don't drop back down again tonight, because we want to go HOME tomorrow.

Friday, January 2, 2015

Monthly Clinic Visit

Yesterday Lilly said, "I'm so excited to go to clinic tomorrow!" It's pretty sad when she gets excited to go to the hospital. But, that's where her friends are. That's where we spent a lot time of last year... We're hoping this year there will be a lot less hospital stays, but we love to see Lilly's nurses and doctors who have become part of our cancer family.

We didn't go to clinic around Christmastime, so Lilly took a few gifts with her today. She was so excited to give her gifts...

Ever since Lilly first met Dr. Doug, she has always said he looks like Prince Eric from "The Little Mermaid." We thought he should have a doll to remind him of Lilly's undying love! ;) We LOVE Dr. Doug, but Lilly still thinks he needs to shave his hairy face!!

Dr. Engel isn't Lilly's primary doctor, but we have grown to love him as well. We see him often and Lilly has decided that he kind of sounds like Mike Wazowski from "Monsters University." 

I love to see Lilly get so excited over giving gifts rather than always receiving. It makes my heart happy!! 

Clinic was good today. Lilly only had to get one chemo drug (Vincristine), and her numbers are where they need to be. She didn't have to have a spinal tap today - that was nice. She starts the dreaded 5 days of steroids again. It's good because she has an appetite and wants to eat, but it's bad because of the dreaded "roid rages." And believe me, they're REAL. But, we take it a day at a time because that's how we get through it. Happy New Year to everyone who's been following Lilly through this journey!! 2015 is going to be GREAT!