Today, Mollie participated in a "fun run" in honor of Veterans Day. The run was a mile- Mollie probably ended up doing a little more than half. We're really proud of her! Just consider what she's been up against recently: 1) a 2 week hospitalization for H1N1 flu & pneumonia; 2) 4 days of decadron (steroids); and 3) IV chemo this week (a major side effect of vincristine is foot droop and bone pain). This kid is a champ!
Tomorrow is her last day of steroids for this round; we're all looking forward to that. This round hasn't been too bad though. Last night, Lucy ended up throwing up all night and we tried our best to keep Mollie away from her. Lucy is better today and Mollie has not gotten sick (but I still have my fingers crossed). Mollie was sad about having to stay away from Lucy so she made her a special gift (a barf bucket full of washcloths, a stuffed animal, and a get well card). She's glad they can play together today and wants us to move Lucy's crib into her bedroom this weekend.
4-year old Mollie was diagnosed with pre-B cell acute lymphoblastic leukemia on June 17, 2008. This is her story.
11.13.2009
11.12.2009
Halfway through the steroids
Mollie went to school for half the day today. After she finally got out of bed this morning (a big challenge, especially when she is taking dexamethasone), she was very cheerful and looking forward to school. She was also really happy when I picked her up.
Afternoons are another major challenge during the steroid pulse. She started getting impatient when we went to pick up Lucy. Then she teared up, saying she wished she was still in pre-K because they got to play more and it wasn't so much work! She had a similar complaint yesterday and when I asked her about the "work" she said she was tired of doing so much "cutting and gluing!" She has a little more homework to do tonight, but I think I'll let her skip anything that involves cutting or gluing.
Oh no! Lucy just threw up...
Afternoons are another major challenge during the steroid pulse. She started getting impatient when we went to pick up Lucy. Then she teared up, saying she wished she was still in pre-K because they got to play more and it wasn't so much work! She had a similar complaint yesterday and when I asked her about the "work" she said she was tired of doing so much "cutting and gluing!" She has a little more homework to do tonight, but I think I'll let her skip anything that involves cutting or gluing.
Oh no! Lucy just threw up...
11.11.2009
Brief Update
Today was a pretty typical "steroid" day. We stayed close to home. Mollie wasn't feeling up to doing much, but she did manage to finish a lot of make-up school work.
Her leg/hip has apparently stopped hurting (yay!) and her ANC is 700 (low, but we'll take it). I'm planning to send her to school tomorrow for a half day since she does pretty well in the morning. In the afternoon, she can take a long nap and go to Daisy scouts if she's feeling up to it.
Her leg/hip has apparently stopped hurting (yay!) and her ANC is 700 (low, but we'll take it). I'm planning to send her to school tomorrow for a half day since she does pretty well in the morning. In the afternoon, she can take a long nap and go to Daisy scouts if she's feeling up to it.
11.10.2009
Clinic Update
Update: I checked Mollie's temp at home several times yesterday and it was normal. I still don't know what the official ANC is- I'll have to call clinic today.
Clinic went well today. We dropped Lucy off at school, then Mollie got her port accessed (easy, thanks to the very special nurses in hem/onc), then we went upstairs for my OB appointment. By the time we got back to hem/onc clinic, Mollie's chemo had arrived. So, she got her IV vincristine and we went to pick up Lucy.
Mollie is still complaining of pain in her thighs/hips. She can't pinpoint the pain, but it is making her limp slightly. It could be residual from the neupogen shots, but if it doesn't clear up in the next few days, we will go back in to clinic.
Counts:
WBC 2.4
ANC 1000 (machine count, still waiting for manual count- it's probably lower than this)
Hgb 10.0
Plt 352
If her ANC turns out to be lower than 500, we will hold her oral chemo this week. We return next Tues. for a count check. In the meantime, she starts her 5-day steroid pulse.
Our other concern is that her temp was 99.2. Not that high and the NP didn't think it was significant, but with her counts dropping from 2000 to 1000 in a few days, I worry that she's already picked up a bug of some sort. I wish I had some of those adhesive forehead thermometer strips so I could constantly monitor her temp! I think we will keep her out of school tomorrow as a precaution.
She had a great day at school yesterday (so it's hard to keep her out!) and was really happy to see her classmates. Hopefully, these concerns won't amount to anything and can resume a somewhat normal schedule soon.
Clinic went well today. We dropped Lucy off at school, then Mollie got her port accessed (easy, thanks to the very special nurses in hem/onc), then we went upstairs for my OB appointment. By the time we got back to hem/onc clinic, Mollie's chemo had arrived. So, she got her IV vincristine and we went to pick up Lucy.
Mollie is still complaining of pain in her thighs/hips. She can't pinpoint the pain, but it is making her limp slightly. It could be residual from the neupogen shots, but if it doesn't clear up in the next few days, we will go back in to clinic.
Counts:
WBC 2.4
ANC 1000 (machine count, still waiting for manual count- it's probably lower than this)
Hgb 10.0
Plt 352
If her ANC turns out to be lower than 500, we will hold her oral chemo this week. We return next Tues. for a count check. In the meantime, she starts her 5-day steroid pulse.
Our other concern is that her temp was 99.2. Not that high and the NP didn't think it was significant, but with her counts dropping from 2000 to 1000 in a few days, I worry that she's already picked up a bug of some sort. I wish I had some of those adhesive forehead thermometer strips so I could constantly monitor her temp! I think we will keep her out of school tomorrow as a precaution.
She had a great day at school yesterday (so it's hard to keep her out!) and was really happy to see her classmates. Hopefully, these concerns won't amount to anything and can resume a somewhat normal schedule soon.
11.09.2009
On the Bus
Mollie made it onto the bus this morning... as far as the rest of the day, we'll just have to wait and see. She was really complaining of pain in her hips and kind of limping around the house, but I wonder how much of that was just her being uncertain about going back to school.
It is so, so hard to tell when pains are really something to worry about (bone/hip pain can also be a symptom of AVN or relapse) and when they are just normal kid things.
We had a nice weekend. Mollie and Lucy played and played and played. Matt and I took turns running errands and hanging out with the kids. Yesterday, Mollie played at Bella's house (and I visited with her parents) all afternoon; Bella's parents brought her a Cinderella playset from Disneyworld and that kept the girls engaged for a quite a while.
My mother-in-law is undergoing hip replacement surgery today, so we are thinking about her and praying that it goes very smoothly. Mollie is looking forward to picking out flowers to send...
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