Well, Mollie is now off of steroids, but we are still feeling the effects in full-force! She ate two bows of pesto pasta for breakfast this morning (about 1.5 hours ago) and is now asking for grapes, chips, cheese, pretzels, and a tortilla! She has a bit of a "moon" face and is still very emotional.
And her hair is falling out again. She doesn't seem too phased by it- we have been talking about how it would fall out again for a few months. She is worried about her eyelashes falling out but I told her we could get her some sparkly false eyelashes if that happened; that made her feel better.
We went in to clinic for a CBC on Tues. and Mollie's ANC is 500. That's up a bit from last week, but still very low. It has to be 750 in order to continue with DI next week. I am hoping she makes the cut-off -I think we would all like to get this rolling before Christmas. Her platelets and red cells are low, but still sufficient.
Also, we were invited to participate in the radiothon next week. This fundraiser helps raise money for Children's Medical Center. I'll post the details in a few days.
This morning we talked about being thankful- here is Mollie's list:
my adorable little sister, Lucy
Isabella and Izzy
water
my toys
Thanksgiving
food, especially the kind they have at the hospital
my grandparents
mommy and daddy, a little bit
the doctors
church
food (again)
Happy Thanksgiving to all!
11.27.2008
11.24.2008
One more dose
of dexamethasone (steroids). Just tonight and that's it for a few weeks.
Mollie stared off the day with a two bowls of pesto pasta, but ate a bowl of tomato soup for lunch! Hurray for variety!
She is really miserable- tired, indecisive, and cranky. Coming off the steroids is even more difficult, but at least my parents are here. We go back to clinic tomorrow for a CBC- we're hoping her counts are up so we can go do some holiday activities this weekend.
Mollie stared off the day with a two bowls of pesto pasta, but ate a bowl of tomato soup for lunch! Hurray for variety!
She is really miserable- tired, indecisive, and cranky. Coming off the steroids is even more difficult, but at least my parents are here. We go back to clinic tomorrow for a CBC- we're hoping her counts are up so we can go do some holiday activities this weekend.
11.22.2008
Pesto pasta, on tap?
All I want for Christmas is... pesto pasta?
That's all that Mollie will eat or talk about. She said she even dreamed about it last night!
I have made at least four batches of it (and 1 run to the store to get more pesto- Contadina brand only!) in the last 2 days.
I wish our refrigerator had a pesto pasta dispenser.
That's all that Mollie will eat or talk about. She said she even dreamed about it last night!
I have made at least four batches of it (and 1 run to the store to get more pesto- Contadina brand only!) in the last 2 days.
I wish our refrigerator had a pesto pasta dispenser.
11.21.2008
It's all about the food
For breakfast:
1 Yoplait yogurt
1 bowl of mashed potatoes with gravy (yes, for breakfast)
1 dinner roll with butter
20 minutes later.... "Mama, when is it going to be lunchtime?"
Mollie was practically begging to go to the hospital today because she likes the food they have. The only thing that satisfied her was pesto pasta. For lunch, dinner, and a snack.
We barely left the house, but had a good day anyway.
1 Yoplait yogurt
1 bowl of mashed potatoes with gravy (yes, for breakfast)
1 dinner roll with butter
20 minutes later.... "Mama, when is it going to be lunchtime?"
Mollie was practically begging to go to the hospital today because she likes the food they have. The only thing that satisfied her was pesto pasta. For lunch, dinner, and a snack.
We barely left the house, but had a good day anyway.
11.20.2008
Better
Last night I wrapped up some stickers and hankies and left them in Mollie's room so she would have a little surprise this morning. I think it was just what she needed to start the day off right!
We were cruising until about 2 P.M. - that's when the roller coaster started.
The steroids zap Mollie's energy and wreak havoc on her emotions. She is good at articulating her needs and feelings when she's well rested. But when she starts to get tired, watch out! It is all tears, pouting, yelling. All she really wanted to do was "play with some kids." Any kids. Except Lucy. Or me, pretending to be a kid. And this was after a 3 hour nap.
We're definitely getting cabin fever around here.
Last night Matt mentioned flights to the Turks and Caicos Islands are $130 each way. Hmmm.....
We were cruising until about 2 P.M. - that's when the roller coaster started.
The steroids zap Mollie's energy and wreak havoc on her emotions. She is good at articulating her needs and feelings when she's well rested. But when she starts to get tired, watch out! It is all tears, pouting, yelling. All she really wanted to do was "play with some kids." Any kids. Except Lucy. Or me, pretending to be a kid. And this was after a 3 hour nap.
We're definitely getting cabin fever around here.
Last night Matt mentioned flights to the Turks and Caicos Islands are $130 each way. Hmmm.....
11.19.2008
Today was a long day...
Mollie wanted pancakes! for breakfast. So, I made pancakes, and she didn't eat them. (But Lucy ate 3 whole pancakes!!) All day she just had a hard time making decisions- this is typical behavior for when she is on steroids. Couldn't decided what to eat. Which pants to wear. Which shoes.
I planned to do a little prep for class tonight while Lucy napped, but she only slept for 30 min. So, I was pretty stressed and lost my patience a few times (and then felt guilty). These steroid days bite!
Still, we did enjoy a walk to the park and reading some library books about the constellations. I think we may need to go star-gazing one of these days- or maybe to the planetarium. Some catalogs came in the mail and we had a fun time looking at those, too. I remember how much I loved getting the Christmas catalogs when I was little!
When I got home from teaching tonight, Mollie was sacked out on the sofa with big, dark circles under her eyes. Poor kiddo! She woke up long enough to take her medicine and then I tucked her into bed in her clothes.
I planned to do a little prep for class tonight while Lucy napped, but she only slept for 30 min. So, I was pretty stressed and lost my patience a few times (and then felt guilty). These steroid days bite!
Still, we did enjoy a walk to the park and reading some library books about the constellations. I think we may need to go star-gazing one of these days- or maybe to the planetarium. Some catalogs came in the mail and we had a fun time looking at those, too. I remember how much I loved getting the Christmas catalogs when I was little!
When I got home from teaching tonight, Mollie was sacked out on the sofa with big, dark circles under her eyes. Poor kiddo! She woke up long enough to take her medicine and then I tucked her into bed in her clothes.
11.18.2008
ANC=300
Clinic went smoothly today. Mollie's ANC is 300 (500 is considered neutropenic with a serious risk of infection), so we will keep things low key this week. She got her chemo (doxorubicin and vincristine) and started another steroid pulse, so her counts should trend upward. No chemo next week, just a CBC on 11/25.
Mollie's next spinal tap is scheduled for Dec. 2, but they will only go ahead with the procedure if her ANC is above 750. Beth, the NP, seems dubious that it will be that high. The spinal tap (delayed or not) will start the second half of delayed intensification. She will get 3 new drugs- an infusion of cyclophosphamide on the day of the spinal tap, oral thioguanine for two weeks, and 8 shots of cytarabine. Then, her little body will be allowed to recover and it's on to long term maintenance (LTM).
That's the plan anyway...
Mollie's next spinal tap is scheduled for Dec. 2, but they will only go ahead with the procedure if her ANC is above 750. Beth, the NP, seems dubious that it will be that high. The spinal tap (delayed or not) will start the second half of delayed intensification. She will get 3 new drugs- an infusion of cyclophosphamide on the day of the spinal tap, oral thioguanine for two weeks, and 8 shots of cytarabine. Then, her little body will be allowed to recover and it's on to long term maintenance (LTM).
That's the plan anyway...
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