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.
11.22.2008
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...
11.16.2008
The weekend
Mollie had a wonderful weekend (and I didn't bust out the camera - so no pictures).
She went to Nadira's birthday party on Saturday. I didn't go, but from what she tells me, she had fun. I'm really proud of her because this was her first time seeing most of the children at the party since her diagnosis (and hair loss). She said it didn't bother her and one of the girls kept asking her why she didn't have any hair. Mollie said, "I tried to tell her it was because of my leukemia and my medicines, but she just didn't understand. And that's okay."
Today, Bella came over to our house to play for a while and then they both went over to Bella's house. I think they both got their fill of pretend play - house, princess and fairy godmother, ballerinas, and robots.
I think Mollie might be a bit anemic- she looks pale and seems a little more tired than usual. We'll find out at her next clinic visit on Tuesday.
She went to Nadira's birthday party on Saturday. I didn't go, but from what she tells me, she had fun. I'm really proud of her because this was her first time seeing most of the children at the party since her diagnosis (and hair loss). She said it didn't bother her and one of the girls kept asking her why she didn't have any hair. Mollie said, "I tried to tell her it was because of my leukemia and my medicines, but she just didn't understand. And that's okay."
Today, Bella came over to our house to play for a while and then they both went over to Bella's house. I think they both got their fill of pretend play - house, princess and fairy godmother, ballerinas, and robots.
I think Mollie might be a bit anemic- she looks pale and seems a little more tired than usual. We'll find out at her next clinic visit on Tuesday.
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