Day 3

Today was an okay day.  Unfortunately one of Paige's meds has a history of turning kids into "monsters" (the Dr.s choice of words not mine).  In other words she's extremely moody!  It's like we hit the teen years early!  What's hard is knowing how hard a line to take with her.  I mean I don't want to let her get away with everything because she's sick, cause how do you change back once she's well again.  But at the same time, she doesn't really have any control over this behaviour.  So we're doing a lot of distraction.  And when she starts her very loud "whah, whah" we've found ignoring her is sometimes the only thing that works.  But we're learning fast.  This evening when she kept punching me no matter what I said, I gave her a pillow and told her to punch that.  It put a big smile on her face. But it is emotionally draining.  The sad thing is I know she doesn't want to act that way.  If she actually hurts me, she's just devastated.  She says sorry and just breaks down crying.  Breaks my heart everytime.  But how does a kid deal with these things?  She just doesn't have that much life experience to know how to cope with her feelings of anger and frustration. So Todd and I will have to teach her.  A hard lesson to learn at 4, something else she shouldn't have to be going through.  But the fact that she still laughs with me gives me hope that emotionally she'll get through this and still be the same Paige.

Otherwise today was an uneventful day.  She takes her meds, usually in applesauce or pudding.  I think they're going to lower her IV rate soon, which will be nice.  She goes through 3 pull ups a night, and still leaks, so I feel like a hotel maid, changing bed sheets everyday!  Fraser Health runs a pediatric oncology program in Surrey.  I guess our Dr. referred us because one of the Dr.'s from there came to see us today.  He was super nice and spent a lot of time explaining leukemia to us!  At first I was unsure of taking her anywhere but BCCH, but he really impressed me!  I found out that we all have leukemia cells in our body.  But our immune system kills them off before they can multiply.  But kids like Paige have a defect in their "reading" system that identifies these cells.  Then they get a cold or something, and when the body sends out extra white blood cells to fight off the infection, these leukemia cells get released as well, but in greater numbers.  And since their body doesn't identify them, they are left in the blood to multiply and migrate all over the body.  He figures in ten years they'll figure out why some kids  "reading" system doesn't work.

He says that once kids are on the maintenance portion, you can't even tell they're sick.  He says more than likely her hair will grow back during this time.  So we'll just have to wait and see.

Tomorrow Paige can have a bath!  It's been a long time. First she had to wait 48hours after her bone marrow aspiration, and then she had to wait over 24hours after her operation.  So it'll be nice to get the sticky jam out of her hair, and the pee smell off her body.

The IV is out of her hand.  They're just using her port now.  She still cries now and then thinking she's going to get a poke, but calms down once we reassure her they can just use her port.

For all my nurse friends I have copies of Paige's CBC's and I will post them, maybe tomorrow in case your interested.  The Dr.'s are very happy with how she's responded to the transfusions.  Her platelets are at 120 which is excellent, even though "normal" is supposed to be >200.  Her hemoglobin is 77, but they're just holding off for now to see how she does.  Apparently kids can stand a lower Hgb more than adults.  So as long as she's coping okay, they'll carry on keeping an eye on it.  If it gets much lower she'll need another RBC transfusion.  She gets a CBC done every morning.  And her lytes are done every evening.  They're teaching us the side affects to watch for.  Not only from the medications she's on, but the disease process itself.  Apparently the break down of all these cells can cause things like a rash on her bum and sores on her mouth.

We look forward to a weekend full of lots of visits for us and Paige.  They really break up the day, we can't thank you all enough.  If you have any questions please leave a comment asking us, and if we don't know the answer we can find out while we're here.  You  might be thinking of something that Todd and I haven't considered yet, so ask away!