November 25, 2009

I wish I had taken a picture. Lily, Tanner’s friend who also has ALL, was at clinic today. She, Tanner, Sara (the child life specialist), and two other little girls sat around a table in the middle of the clinic and played UNO. Tanner and Lily were accessed, with tubes hanging out the bottom of their shirts. One of the other kids had an IV pole. It was such a normal scene in the middle of an abnormal situation and was testament to the fact that kids will find a way to be kids, no matter what is going on with them.

When we were getting ready to leave, Tanner and Lily sat next to each other in infusion chairs to remove the sticky patch placed over their ports to keep the needle stable. Lily casually said, “Tanner, do you need some Remove? I have some you can use.” Tanner took the little packets and then both of them pulled up their shirts and began rubbing the pads along the patch to try to loosen the sticky stuff. They each worked for a couple of minutes getting the patch off, then Lily unceremoniously pulled her own needle out and handed it to her Mom while Tanner asked if I would take hers out instead of waiting for the nurse. She looked so impressed that Lily took her own needle out and I told her it must be because Lily is eight. “Ohhhhh,” Tanner said, as if that made perfect sense. It was hilarious and reminded me that there are good moments to be found in even the most challenging circumstances.

We were so hoping to find out Tanner’s neutraphil counts had risen to at least 750 today so we could spend Thanksgiving with John’s family, but it just didn’t happen that way. Tanner’s counts had gone up just 60 points since last week and were at just 440. Anything below 500 is considered severely neutrapenic and as Tanner’s nurse said, “I wouldn’t risk it if it were my daughter.” That was all I needed to hear.

Tanner was really disappointed. She burst into tears right there in the clinic and cried several times on the way to the car. But, as always, she found a way to be happy. She and I are going to cook Thanksgiving dinner together tomorrow – something we have never done and she is very excited about. Anyone who knows me knows I don’t “cook” so much as “heat,” so cooking with Mommy is a real treat.

As always, people are so kind to us. Lauren, in John’s office is bringing us a fried turkey, my friend Kim is supplying a pumpkin pie and Ashley is giving me some of her cranberries. That leaves a couple of side dishes for Tanner and I, which I am capable of.

Hopefully, Tanner’s counts will continue to rise and we can start Long Term Maintenance next week. It wasn’t really expected that they would be any higher than the were today; this is just part of this phase of treatment and why they give the kids two weeks off chemo for counts recovery. She probably bottomed out on Sunday or Monday and has just started to climb. No big deal if they aren’t up high enough to start next week, we’ll just wait another week. But, the sooner we start, the sooner she will get to the point where we can have a little more freedom. Freedom is more valuable than gold and diamonds to us right now.

I’m off to blow the dust off a cookbook or two.

Love,
Beth