Monday, December 8, 2008

Up and down up and down

Phil took Lily in to the hospital last night for hydration before the chemo today. I have the girls' cold and we decided it was best for me to try and "rest" and try not to make Lily sick. Phil started packing and as soon as she caught on after dinner, her dinner made a reappearance on my carpet. A big case of nerves and I don't blame her. Lily's blood counts were low again this morning. That was expected since we stopped giving her the shots that boost her white cell production. Her kidney function was back up. So chemo was on then off then on ....finally they started around 4. So far she's peed through 3 sets of pj's and a blanky so I'm guessin she's hydrated. They know that she gets pretty sick the week after treatment so they will send us home with IV fluids to help keep her hydrated. We also are going to get briefed on different meds and things to try as soon as she feels warm to combat some of the neutrapenia problems. She's been placed on hydrocortisone to replace the cortisol her remaining adrenal gland is not producing due to the chemo drugs.


Another cancer patient on the ward turned 9 today and had a birthday party in the playroom. It's all relative since she too is neutrapenic- but all the nurses,docs, and other neutrapenic kids got to go. I had stopped by to visit with Lily and we were battling a big rough patch. I couldn't go to the party because I am sick and Lily did not want to go without me. A little ativan and the news that there were hot dogs, doritos, and ice cream at the party made my presence no longer necessary. The birthday girl- clad in fairy wings and tutu -loves chuck e cheese's. They go there every chance they get when her counts are up. I would not be so brave- because even my healthy kids puke after a CEC visit....but to each their own. Well Miss Julie knows this and arranged for Chuck E to come say Happy Birthday. Of course he had to be hosed down with germicide before he could come on the ward and he wasn't allowed to touch the kids and vice versa- but as usual- the first thing you see is kids running in all directions either grabbing onto Chuck E's leg or running away in terror. Now that's what I call entertainment.

2 comments:

  1. The smiles on Lily's and Daddy's faces are the most beautiful things the world. I understand what you meant the other day when you said when you see one of those smiles you remember why you are doing this. So keep it up!!! Love and hugs, Now I must go shovel. Looks like about 8-12 inches on the ground. Oh by the way. I watched the cartoon last night. "Granny Got Run Over By A Reindeer. Do you remember how much we all laughed when Uncle Tom and Aunt Kathy bought that record for great Grandma Connolly. If I remember she laughed more than anyone. Isn't that right Helen? Mom (Grandma)

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  2. Those smiles really are beautiful! Jen get better quick so you can give hugs again. We are getting Roberta's snow later today, I think. The morning rain is melting some of our 5 inches from last week. Sam has a brain MRI today re her migraines--this one has been 10 days so far. Her endocrinologist says her tests are normal, despite the symptoms and family history--so I guess that's good. Considering that Lily's doctor dismissed the leg mass in May, and Aunt Linda's doctors dismissed the lump in her throat that turned out to be thyroid cancer, I am ever vigilant. I went shopping last night to try to find Pooh and Dora stuff. The shelves seem wiped clean! Yet there are no shoppers? But I had fun playing with the musical stuff, one singing Grandma Got Run Over by a Reindeer! It's so cute. And there's a hippo with a Christmas scarf that sings I Wanna a Hippopotamus for Christmas. They are so fun! Check your e-mail every day for more fun. Love to all - Mom

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Lily Kay Monkey

Lily Kay Monkey
November 2008 Photographed by Shelley Detton (7 Layer Studio)