What Does Spring Look Like at Your House?

Rick took this picture from our front porch this afternoon. This is what a spring day here in the Kingdom looks like. (I thought it was April?) Katie had a relatively good day. She spent the day a good portion of the day napping in our bed. What a beautiful girl...

I went to work today, where I was pleasantly surprised by positive reports from the sub who covered my classes. It's always a little scary to open the sub folder the day after I have been out, but it's clear that the kids had a good day in my absence. Maybe I should be out more often?

Joshua had a good day at school, too. They are working on addition facts, and he enjoyed making Flubber. (The flubber project appears to have been more exciting than the math facts...) We went out for ice cream after school today with Auntie Teri, and that was fun. I finally caved and bought Joshua the Spiderman Legos he has been coveting, so that was a treat for him, and I enjoyed some grownup conversation.

Poor Rick, on the other hand, spent the day washing Katie's car seat, and that cannot have been a treat given yesterday's vomitfest. The straps were especially disgusting. All the car seat's various parts are strewn about the living room, and I am sincerely hoping that I will not have to reassemble it; that sounds like a good job for gadget guy.

Katie appears to have recovered from yesterday's excitement, although she is complaining about pain in her legs this afternoon. That is easy to fix, and the Tylenol she just took should make it easier to give her a shot of cytarabine, too. The potential glitch, as we look at next week's treatment, is that Katie's liver enzymes are high, and she cannot continue with vincristine until those return to normal. We are hoping that Katie will not need blood or platelets until Wednesday or Thursday, but it is hard to guess what will happen. I would readily admit that my control freak self finds it difficult to accept that some (all?) of this is beyond my control altogether. The best laid plans of mice and men and all that. Oddly enough, I think this process is teaching me to roll with challenges outside my traditional comfort zone. Maybe I will finally "mellow out." Or maybe not. There just isn't enough room in my day for panic. Don't you worry, either. Katie will be fine. Katie will be fine. Katie will be fine. It isn' t a catchy mantra, but it works!

Joshua and Rick are planning to ski this weekend. Many thanks to Gigi Poginy, who found a very short pair of skis in her garage. Katie will be all set next winter if we can just find her some boots. I love looking forward to the adventures Katie will have once she has finished these aggressive treatment cycles. It's fun to imagine a day we can all ski together! Enjoy the snow, friends. (Or join me in hoping that it all melts and quickly! Happy Spring?) Have a nice weekend.

Home Again and Feeling Okay

Katie and Amy made it home by about 5:30 pm and a quick look at Amy's face told me just what kind of day she had had. Katie was subdued but happy and feeling alright for the moment She was just glad to be home.

The rest of the evening has gone pretty well, with Katie remaining comfortable but a little low on energy. Josh played video games with me and Katie watched some Dora and also watched us play a bit. Amy tried to get a little time by herself, even if it was just in the kitchen loading the dishwasher and putting away dishes.

We think we now know what was so wrong with Katie this morning. The doctors at Fletcher Allen, after listening to Amy explain Katie's symptoms, believe that Katie was displaying signs of a very low blood sugar level. We had been told that a diabetic-like inability to control blood sugar levels was a possible side-effect of the 6MP that she has been taking, but we had not seen any signs of it up until now. Apparently, we could have minimized the problem or even eliminated it this morning if we had just given Katie something sugary to eat or drink. Instead we gave her water and bland food so we wouldn't upset her stomach further. That, of course, didn't help to raise her blood sugar level at all.

At least there is an upside to this new side-effect - Katie now has a good reason to start her day with a little chocolate...

Quick Update

Katie has an ear infection and she is not getting a transfusion. Her numbers aren't low enough right now but the doctors expect that she will end up getting one early next week. She still feels horrible though and I could hear her crying and complaining that her "belly hurts" while I was on the phone with Amy.

They are done for the day at Fletcher Allen. Katie has another dose of Cytarabine in her and is headed home shortly, still in pain, still feeling sick. She will also be bringing home another antibiotic to clear up the ear infection.

Not According to the Plan

Apparently, last night's post was wishful thinking. Katie took a turn for the worst over night and woke up this morning complaining of ailments that her normal medicines did not help. She woke up crying because her stomach hurt and we gave her some Zofran. She complained of her head hurting and we gave her some Tylenol but became concerned because her headaches usually only happen when her blood counts drop. She was still in bed when I left for work.

Amy called me about an hour ago with her update. They were almost to Fletcher Allen and Katie had not gotten any better. She had vomited several times already which was very unlike her and she was still complaining that her head hurt and she just didn't feel good. Amy also told me that when she changed Katie out of her pajamas and into clothes for the day, she found many petechia.

Not surprisingly, I'm not pleased with the suddenness of the change and I'm worried about my little girl. I just tried to call Amy but go no answer, so I will try again after classes this afternoon. I'm assuming - no, I'm hoping that this means she will get a transfusion while she is at Fletcher Allen. Transfusions always make her feel so much better.

The Day Before Infusion

Things went well for Katie today. She slept a little bit better last night with fewer coughing fits and she was able to get up at a reasonable hour this morning. She lounged and played all morning and then snuck in a quick two hour nap just before we got home from school. When we arrived, she was primed and ready to go. She played hard for the rest of the night - dancing, singing, running, climbing and bouncing. She eventually bounced into bed and finally fell asleep a little later than we would like, but much earlier than she had been going to bed for the last few days. An earlier bed time is a very good thing for her since tomorrow morning she and Amy are heading back down to Fletcher Allen for infusion.

She gets Cytarabine and a check-up tomorrow and gets to bring home three needles for shots at home over the following three days. I don't recall whether or not we mentioned this last week, but the Cytarabine is administered in four consecutive doses, twenty-four hours apart. So instead of traveling to the emergency room on Sunday to get the fourth shot, we give the shot at home. If we have to give one shot, why not save a few more trips and give all three shots? That is exactly what we did last week and will be doing again this week. The shots at home are relatively easy when compared with driving to the doctor's office, seeing the nurse, calming Katie down, seeing the doctor, calming Katie down, seeing the nurse again and finally getting the shot and calming Katie down. At home, the whole process is over in less than two minutes. She is not a big fan of the shots, but she doesn't cry any more at home than she does in the doctor's office.

Happily, her blood cell counts still appear to be OK so we are hoping that she won't need a transfusion tomorrow. We don't know what her counts are for sure because her blood wasn't tested this week, but she isn't displaying any of the symptoms of low blood counts. Her skin looks good, her energy is good and all other symptoms are absent. With luck, Amy and Katie will be home again before it gets dark tomorrow evening.

Night Owl

Oh boy are we in for it now! Katie has become a bit nocturnal, sleeping until almost noon and staying awake until almost midnight. Josh described her behavior tonight as being like an owl and only waking up at night. You see, she has a cough again and it keeps her up at night. She will lie down to sleep and she might even doze off for a while. But sooner or later, a dry, non-productive coughing fit will wake her up. These coughing fits last up to 10 minutes and nothing seems to stop them. She does this on and off throughout the night and it has been going on for about three nights now. By the time morning arrives, she is so tired that her body finally stops fighting with her and she falls asleep deep enough to stop coughing. She laid around most of the day today, not wanting to do very much, but when we got home from work, she perked right up and hasn't settled down yet. It is just about 11:15pm as I write. She is snuggled in beside me, watching me type, but also wiggling incessantly. I'm willing to bet that I will be the first of us to fall asleep, lulled into unconsciousness by the soothing scent of Vics wafting off of her body.