4-year old Mollie was diagnosed with pre-B cell acute lymphoblastic leukemia on June 17, 2008. This is her story.
7.12.2008
If you were a fly (or flea or waterbug or ant) on the wall in our house this weekend, this is what you would hear:
"Mama, can I have some cheese?" In a little while.
"How many minutes?" About 120. You just had cheese and turkey.
"Mama, is it dinnertime yet." No, it won't be dinner for 2 hours.
"And then I can have cheese?" Yes. We have a good movie to watch tonight.
"Can we have popcorn?"
Clearly, the steroids are kicking in. Mollie's gone from craving pesto pasta, to Doritos, to cheese in 48 hours. Now we're on to ham and turkey. The 28 day induction ends on Thursday so then I think we'll get some respite from the steroids.
And it sounds like someone is sending us a stroller. Thank you in advance whoever that is!
7.11.2008
Mollie was discharged today after lunch with strict instructions to eat bananas and limit fluid intake. So that's that-- they are just going to monitor her closely for the rest of the induction period.
Also, I want a double stroller and I think the only one that's going to work for us is the Maclaren twin stroller because it has a high weight limit. My friend N (the super deal finder) is on the lookout for a used one but I figured I would just put the word out there. The more eyes the better, right?
The Joovy company gave me a discount on their sit/stand stroller. It is wonderful for getting to doctor appointments and I really appreciate it. But, it won't really work or longer trips because Mollie can't lay back in it. I don't want Mollie to do TOO much riding around in a stroller, but I know some days she won't feel up to doing anything. I would rather have her ride around in a stroller than sit in the house all day.
Also, I want a double stroller and I think the only one that's going to work for us is the Maclaren twin stroller because it has a high weight limit. My friend N (the super deal finder) is on the lookout for a used one but I figured I would just put the word out there. The more eyes the better, right?
The Joovy company gave me a discount on their sit/stand stroller. It is wonderful for getting to doctor appointments and I really appreciate it. But, it won't really work or longer trips because Mollie can't lay back in it. I don't want Mollie to do TOO much riding around in a stroller, but I know some days she won't feel up to doing anything. I would rather have her ride around in a stroller than sit in the house all day.
7.10.2008
So we're in the hospital again. Mollie went in for chemo today and I had noticed last night that her eyes were looking funky- there was a slight discharge and they seemed yellowish. We pointed that out to the docs, they did some blood tests, and her bilirubin levels are high. This means her liver is being affected by the chemo (not uncommon) so they are giving her some meds to help breakdown the bilirubin and watching her closely. Her plasma salt levels are low and she is retaining water so the nephrology team is on that too.
I guess it is par for the course. She's doing fine, but is a little grumpy about being in the hospital. And they held off on her dose of vincristine for today so I don't know what that means for the rest of the induction treatment plan.
We got a lovely package of homemade chocolate chip cookies in the mail today (thanks Jen and Jason) and a delicious homemade Thai noodle salad in person (thanks Michelle and Isabella). I know you guys didn't know we were coming to the hospital this afternoon (neither did we), but your timing was impeccable!! And we devoured everything!
For those of you who are local, Mollie can have visitors (as long as they are not acutely ill and are up to date on immunizations). Dr. A said we should expect to be in here for a few days, possibly through the weekend, depending on how Mollie's body responds. Just give me a ring if you plan to stop by...
I guess it is par for the course. She's doing fine, but is a little grumpy about being in the hospital. And they held off on her dose of vincristine for today so I don't know what that means for the rest of the induction treatment plan.
We got a lovely package of homemade chocolate chip cookies in the mail today (thanks Jen and Jason) and a delicious homemade Thai noodle salad in person (thanks Michelle and Isabella). I know you guys didn't know we were coming to the hospital this afternoon (neither did we), but your timing was impeccable!! And we devoured everything!
For those of you who are local, Mollie can have visitors (as long as they are not acutely ill and are up to date on immunizations). Dr. A said we should expect to be in here for a few days, possibly through the weekend, depending on how Mollie's body responds. Just give me a ring if you plan to stop by...
7.09.2008
Can you say Turks and Caicos Islands? Seriously, I really want a vacation.
Okay, here is my selfish post. I am missing out on some career opportunities. We spent our 7th wedding anniversary in the hospital. We canceled our big summer vacation (the one we've been looking forward to since we got home from Tahoe last summer).
Between Mollie and Lucy, I'm getting up 3-4 times a night (between midnight and 7 a.m.) and I' am tired. I'm tired of not having any sleep, I'm tired of the heat and humidity, I'm tired of looking at our dirty carpet, I'm tired of Noggin, I'm tired of spending so much time in our house, I'm tired of bad moods.
I would like to be instantly transported to the beach for a few days. With Matt and a certified massage therapist.
Whine over.
Okay, here is my selfish post. I am missing out on some career opportunities. We spent our 7th wedding anniversary in the hospital. We canceled our big summer vacation (the one we've been looking forward to since we got home from Tahoe last summer).
Between Mollie and Lucy, I'm getting up 3-4 times a night (between midnight and 7 a.m.) and I' am tired. I'm tired of not having any sleep, I'm tired of the heat and humidity, I'm tired of looking at our dirty carpet, I'm tired of Noggin, I'm tired of spending so much time in our house, I'm tired of bad moods.
I would like to be instantly transported to the beach for a few days. With Matt and a certified massage therapist.
Whine over.
7.08.2008
I know that Mollie is not having a good day because she asked me to pick out her clothes.
I convinced her that it would be fun to go to the library.We got all the way over there and she wouldn't get out of the car. She had fallen asleep on the way and said she just wanted to go home and take a nap. I let her sleep in the car a little while I nursed Lucy, thinking she might change her mind if she got a little rest.
No luck. We've been home 2.5 hours and she just now woke up from her nap.
I convinced her that it would be fun to go to the library.We got all the way over there and she wouldn't get out of the car. She had fallen asleep on the way and said she just wanted to go home and take a nap. I let her sleep in the car a little while I nursed Lucy, thinking she might change her mind if she got a little rest.
No luck. We've been home 2.5 hours and she just now woke up from her nap.
7.06.2008
Mollie is taking a lot of medicines now. At least 4 different meds, twice a day. The majority of them are aimed at reducing the side effects of the chemo- mouth washes, antacid, etc., and then, of course, there's the steroid, dexamethasone. We call that the "icky" one. Mollie doesn't like it because it tastes terrible. I don't like it because that's the one that causes the moodiness, fluid retention, and fatigue. Fitting that it is the only one that tastes bad.
This weekend the fatigue seemed worse. Mollie tried to do an echappe (a ballet step) and almost fell down because her legs were so weak. It just about broke my heart and left her feeling pretty bad too. But then we went online and played some games-- Care Bears and Super Why-- that lifted her spirits. So did our tea party and watching a movie with daddy (especially the popcorn).
I got out of the house quite a bit this weekend to drink wine with my neighbor and meet my coworker's new baby girl. And I went to the market for the first time in 3 weeks to buy groceries- it was actually kind of nice! For an update on Lucy, see my other blog.
This weekend the fatigue seemed worse. Mollie tried to do an echappe (a ballet step) and almost fell down because her legs were so weak. It just about broke my heart and left her feeling pretty bad too. But then we went online and played some games-- Care Bears and Super Why-- that lifted her spirits. So did our tea party and watching a movie with daddy (especially the popcorn).
I got out of the house quite a bit this weekend to drink wine with my neighbor and meet my coworker's new baby girl. And I went to the market for the first time in 3 weeks to buy groceries- it was actually kind of nice! For an update on Lucy, see my other blog.
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