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Plans for the future

Frankly, I had to put this picture up again because everytime Peyton sees it she gets a massive case of the giggles. Sort of looks like Diana Ross and Bo Bo the Clown had a baby, huh?

Today, Monday, was our treatment day. We went in early and got her chemo, just an IV push of a medication called Vincristine. It makes her unable to sleep well, kills her apetite, makes more hair fall out and to add insult to injury, causes constipation. Like if all the rest of it isn’t bad enough, she gets constipated….like salt in a wound! However, the actual medication isn’t a bad treatment day and that was the end of Intensified Consolidition. Yeah!!!! One more cycle down!

Enter Augmented Interim Maintenance. The next cycle starts off with a bang, the first week has a bone marrow AND a spinal tap. But she gets no shots in the leg during this cycle and visits are actually a little less often, the plan is to be there for chemo every 7-10 days. She gets 4 chemo meds during this phase of treatment, we’re back to the spinal injections twice during this period and then the rest are IV meds, so that’s a good and not so good.

Right now, it looks as though we’re going to get a nice little break in chemo though. Her ANC is 50 right now….yes, that’s right, I didn’t leave off a 0, it’s actually down to 50 (reminder, 500 is considered really low), so she’s close to the bottoming out of her immune system. They remind me that it’s up and down, it continues to rise and fall, and I’m getting used to it. Because her ANC has to be greater than 750 and her platelet count has to be at 85000 (it’s currently in the 70000 range) for her to begin her next cycle of chemo, they will hold off on starting until her body rebounds a bit. So, it can be anywhere from a week to a few weeks of going in for finger pokes to see what the counts are and waiting. I’m looking forward to letting her body get a little rest. Although she really does look and act great, it’s in perspective of what she could be. She’s bruised all over her little body, she’s terribly pale and she’s still on the downslope of the scale with no apetite. On the bright side, she hasn’t had hardly any nausea, her hair looks like peach fuzz where it’s starting to get longer in the spots it hasn’t fallen out and she’s still the cutest bald person in our house (sorry, Pete, love ya, but she IS!).

Tuesday morning we’re heading in so that Peyton can get a transfusion of red blood cells because her count was 7 (11-14 is normal for chemo patients) and that should give her a nice boost of energy and make her feel pretty good. We’re getting “Mr. Red” as she refers to it. She calls her platelet transfusion “Mr. Yellow”. Somebody asked me today how she can manage to be so good during her transfusions, when the red blood transfusions take around 4-5 hours total. I have no idea. I would never have thought this vivacious 2 year old would be able to sit and mellow while hooked up to a machine but she does it without fail (except for that one time she cut the blood tubing with her scissors, but the nurses make sure to keep all sharp objects away from her now).

She is so good, she watches movies, plays with puzzles, the staff does a great job of keeping her mind occupied and now she’s even able to get a nap in during those long stays. I’m taking a nap mat in so she can lay on the floor instead of squishing up in the seat of the lounger. She just knows, and is so careful of her “tubie” and how amazing is it that she can do that?

We continue to be positive in her treatment and thankful for the compassionate and wise hands that guide her through this illness. I ordered her a medical kit playset today so she can spend time indulging her interest in playing like the doctors and nurses. They are always amused at how she helps them, she pushes her own IV fluids when they will let her and she flushes her own port whenever she gets the chance. She’s got the blood pressure and temperature thing down to an art and has absolutely charmed the pants off everyone at the clinic. She’s a bundle of joy and they love her for it.

We have a busy week ahead with book reports, report cards, birthday parties to attend and just keeping the Mayhew ball rolling.

With Love

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