Sunday, March 28, 2010

Spring Break begins.

Ally finished up four STRAIGHT days at school on Friday. She got out of school a bit early for Spring Break, but 15 minutes after arriving home we were back into the car for chemo. This day was a little different, because we were taking her friend Joshua with us for the afternoon. I was thinking it would be a relatively quick one (two hours or so) and that she would enjoy having her friend there to pass the time and play some games. And she did. They played several games, did some sand art crafts, watched a little iCarly, ordered ice cream from the cafeteria, and showed Joshua all around the clinic. Dr Dole even came into to examine Ally and said " bout a free check-up?" to which he meekly said no thanks. Even though most of this seems like fun and games, she was there for one purpose only and that is to receive her chemotherapy. And to us, it is a quite normal, quite regular experience, but to Joshua I am sure it was not. We made it fun, but he still sat very still in the corner as the nurse accessed Ally's port with the needle. I told him that she wouldn't cry....she is well used to it by now. We went through our usual routine....take the shirt off, wipe off the emla creme, cleanse the port site with alcohol. Then, she lays back, Bobo right on her, and I grab both of her hands tightly while the nurse goes in for the prick. If I don't she gets kinda slappy with her hands and she knows this. It is just instinctive. When we were doing this, I looked over to Joshua and he had a small look of fear in his eyes. Then he put his hands over his face and just stopped watching. In a matter of seconds, it was done, and they went back to their regular business. I said "See, no big deal right?" But really, Ally's friends know very little of what she goes through when she is at the hospital. Luckily, most kids in America know nothing about it. But maybe today there is some small bit more of understanding as to what she does go through. And she is the bravest girl I know.

She got her final (FINAL) dose of chemo for this phase that was called interim maintenance. Be gone with you interim maintenance. BE GONE. This time they gave her a huge (the biggest yet) dose of methotrexate. It scares me really bad. The doctor came in and gave me a warning. He said...because of her counts remaining high, he had to give her an even higher dose of the mtx. He said it was a nearly toxic amount and not to be surprised if she ends up back in the hospital by Wednesday or Thursday. It takes a while to hit her, but it could bring about some more severe stomach and/or joint pains. This time he told me not to bring her down sooner rather than later if she is suffering and they could try to mitigate the effects. I have never really gotten a warning like this. I am not sure I like the word "toxic" when referred to the chemo they just put in her veins. The warning is scary and it has caused me to be up at night here the last couple nights with worry.

So, the kids sat and played their games while the machine infused Ally with the toxic stuff. It all appears very innocent. I tried to just pretend it wasn't happening, but that doesn't last very long. And now, spring break is upon us. Lots of people are traveling or visiting family or at the very least coming up with a list of things to do that might be fun or different. We are not. We are just going to lay low and hope that the warning does not bode true for us. And it might not. She has done amazingly well for the first 36 hours or so. No complaints yet.

Oh, and when Spring Break is over and the kids go back...well that is April 6th. But that same day, Ally is scheduled to start her last intense phase of treatment with a spinal tap at the hospital. This phase will last eight weeks and will also include 10 days worth of trips to Cincinnati where Ally will undergo cranial radiation. On top of some very intense chemo....they don't stop that either.

We are on about mile marker 23 of our intense chemo "marathon." Please give us the strength to cross the line into maintenance.


  1. Janel,
    Almost home. YOUR ENTIRE FAMILY is so brave. Sharing this journey with all of us has made us all that much wiser about Leukemia. When you reflect on what you have been through, you know that you all will get through the other side of this. Keeping you all in our thoughts and prayers. Praying that Easter will be at your home, but if it's not meant to be, I have your Dinner ready.
    Hugs to all :)

  2. I showed Joshua his picture and he asked me to read to him what you wrote. I did and then asked if he would go back to the hospital with Ally again. He said "Uh, yeah, of course I would", like I had asked him the silliest question ever. I know he doesn't understand the full extent of what she goes through (not even close), but I do like for him to see a tiny bit of it. He enjoyed the time with her.

  3. Like you say so often, keep your eyes on the prize. You are almost to the maintenance portion of this journey and no matter how yucky it has been, you are making it and are still strong . . . even if you don't feel that way. Hugs to the whole Barnett family. We are always thinking about you.


  4. Thinking of you all, always. Jenny

  5. Another milestone finished. That's really great that Joshua came too. What a good friend. And I'm hoping last 3.2 miles will hopefully be down hill right into the beer tent to celebrate the finish.