Monday, November 30, 2009

It is done.

And so it is done. The chemo is back in her little body doing its job. She is starting a new phase today called Delayed Intensification I. It mimics what they did in month 1 and month 2 of her treatment. I love every time we start a new phase. It's a clean slate. Kinda like college, you start a new course, you are that much closer to being done. Except you really didn't want to be done with college, but anyway you get the idea.

So today we started with blood counts. And I didn't mention this yesterday, but we were so caught up in our "normalcy" this weekend that we actually forgot to do her bloodwork on Saturday. Yes. We forgot. Funny, huh? I think it is the first time I have forgot something throughout this process, but I did and I felt terrible. So on Sunday we talked to the dr on call and he said, no big deal we could just do it first thing today...otherwise we were gonna head down to the hospital on Sunday. So now I don't feel bad about it, because I saved my daughter a poke and I saved me a bunch of time. Anyway, her ANC today was 2600. Very good! Very strong.

We then waited patiently for three and half hours and Dr Dole did her spinal tap at 12:30. She never falls asleep with the sedation, but she did close her eyes today for a minute or two. She had some confusion, but overall did very very well with the procedure. For some reason, she never has problems when Dr Dole does it. Which is nice. She also got her monthly dose of IV antibiotics (pentamidine) which takes an hour to run through. And she got two chemo pushes (meaning they push it right into her port, no drip bag)...they were Vincristin and Doxurubicin. Doctor said they shouldn't be too bad on her counts..nausea is the main side effect. She will lose her hair again. :( It was just starting to really come in too. I was very proud that she didn't even cry when accessed and just a slight whimper when getting de-accessed. She is just getting to be so brave about it.

She is starting back up on the steriod Decadron. 7 days on, 7 days off, then 7 on again. Let me tell you that this is probably the #1 complaint across the board for most leukemia families. We have not done it since the first 14 days after her diagnosis. These little pills make the kids irritable, hungry, and unable to sleep. They are rough. Kids throw tantrums for no reason. I have heard stories of kids not sleeping for three days straight. These are the pills that made us pack lunches for Ally to eat in the middle of the night. She will wake up to eat meals now. I am hoping that the seven days is easier than 14. And I am glad that my Ally is by nature an even-keeled and pleasant individual. But these things can even make her quite whiny.

More big news: She gain 6 pounds in about 10 days. She is back up close to 70, which they say is her ideal weight for her height. Very happy about that! Still down from the 79 where she started, but better than the meager 63 she was at one point when they told me she fell in the bottom 10% of the population and was not healthy.

The biggest news it this: she is allowed to go back to school. At least for a few weeks. The flu and illness is at a low point right now. The hospital has even changed their visitor policy back to normal (right after we are done with it, of course). They don't think her counts will be super low until late December/January. So we will try it and see how it goes. Even if she just goes a few days a week...a few hours a day...something. It is important. The doctors keep reminding us that life must go on after this over. And you can't pause life completely. She has gotten to be quite lazy in her reading/work, etc. And I think it is time. Hopefully, I am not regretting this decision or dealing with 10 phone calls a day from the school. Worst comes to worse, I am ten minutes from school and I can come get her. And the people at the school will take such good care of her.

So I am letting her sleep a little tomorrow and then taking her in. That's the plan. We'll see.

She has to go back to the hospital on Friday for the PEG leg shots. These are killer. Two super huge shots right in her leg muscles and for this they do NOT sedate her. She knows they are coming and she knows they hurt and it could very well take the two of us to hold her down. And then her legs will hurt for a few days. And they will make her stop eating again. From now until then I will fret about them. They are just like getting your infant vaccinated, but times 10. I do hate them. It is gonna be a rough worry-filled week but we will persevere. We are plenty adept at living with worries around here.

More tomorrow on the big return to school. Please pray it goes okay for her. (and me!)


  1. Hey there Janel, I have been reading your posts every day but have been very lax about responding - I'm sorry. I'm so glad you had such a great family Thanksgiving even though you had to do another of the "first" holidays. Having Ally healthy enough to enjoy it was wonderful. Each treatment is one more closer to well days. Going to school even part of the day will be good.It is such a caring place. Praying for easier days ahead. Your strength is awesome.

  2. Janel,
    You are so great at conveying complex medical information, which I'm sure is something you'd rather not be good at, but I really appreciate it. Hopefully the steroids won't be too bad this time, and school goes well today. I'm so proud of you all for looking at school as a neccessity, even under these circumstances. And I was laughing that you missed getting her counts on Saturday. That makes my heart happy. Maybe this week I'll have a new baby to announce- a new member of Ally's army. Can I get an orange onsie?

  3. Janel,
    I had to laugh at missing the blood counts, that is awesome. I am also glad that Ally did better with the sticks, they can be nasty. School is a great place for both of you, especially since they take such good care of you. One less treatment to take and that is good. I am so proud of her that she has gained weight, it is amazing how kids bounce back. Her is hoping and praying for a good week, take care.

  4. glad you made it through the day yesterday. Our prayers are with you for school tomorrow, at least this tends to be a pretty fun time of year to be at school.