Conflicted

This isn't the best picture of Rylee, kind of a fake smile going on, but that's beside the point. As I was flipping through recent pictures, this one caught my eye. I was like, "Oh my gosh, Rylee had hair-like pony tail hair." It might sound weird, but at times I forget what it was even like. What she looked like with it, how it was to fix it, etc. This picture was taken only 4 months ago.

At the first of July, Rylee had treatment, along with her every 3 month spinal tap and the same type of thing hit me, "Rylee has cancer." Like her hair, sometimes I forget what we're dealing with. Funny how your new normal sets in and stuff hardly phases you anymore. Do they call that resilience?

I've talked before about our sometimes bizarre reality, but from time to time, I'm reminded of it again. Like when a nurse or someone is asking us the typical health history questions: has she had trouble with XXX, history of ear infection or whatever. The answer to most questions is no, yet she's got the mother of all diseases: Cancer. The last question is always something along the lines of "So..would you say that she is overall a healthy child?" Um...yeah, if you don't count the cancer?!?

None of the above:
Another instance, along the same lines is one I faced with her Dr. this month. Rylee has to take an anti-pneumonia medication and we've tried a couple of things. Her Dr. was asking me which one we wanted to do. Here were my choices.

1) Septra- Oral at-home med. Taken 2 times/day, twice each week about 4 mls. (Rylee started out on this, then it caused her to have terrible body rashes all over her arms, chest, down to her leg- it itched her to death and she was miserable, so we discontinued use. Why deal with a body rash when you're already dealing with cancer?).

2) An IV med that gets pumped through her line once a month. (Sounds simple enough. We went to this option for the past few months- the trouble is, besides the fact that it is very expensive, it takes about an hour for them to get the med ready, another hour to pump it through and Rylee hates to stay hooked up to stuff. It always ends up turning our already 5-6 hour treatment day even longer and let's remember that she's only 2. She wants to be out doing kid stuff just as much as the next kid. And.... as a parent, I have 2 other children and other responsibilities. The longer I spend at the Dr., the less time I have for them.)

3) Dapsone- Oral at-home med. This one you take only once/week but it's 15 mls. each dose (that a fat syringe and a half people!) Oh, and the side effect is that it could turn her blue- it has something to do with the way it effects the oxygen in your body. Great. Sign me up.

So, since we already know #1 is not an option, I didn't feel like staying another 2 hrs. at the Drs. office (we had started our morning at 6:30 a.m to the hospital for spinal tap, stayed there until 10 a.m., had office visit and chemo at 10:30 (but waited nearly an hour in the waiting room), after that got over it was already 1 p.m. and we needed to call it a day- the kid needs lunch and a nap).

I picked #3. I'll let you know if we end up with a little smurf.

I wish there was a #4 that was none of the above instead.

Speaking of which..... there is nothing worse than sending your 2 year old off alone with a complete stranger (nurse) back to a bright, cold operating room where everyone in the room is masked and wearing funny blue scrubs and caps. She must be terrified. Talk about out of your comfort zone.

She's crying and looking back for you to save her....and you can't.

I felt very conflicted this month at treatment. I cannot believe at times what we're giving consent to do. If you read through the list of possible side effects for the drugs they put inside of her, you'd understand the conflict. Yet.. .in the end, what other choice do we honestly have? Even if we wanted to decline treatment, we really wouldn't have a choice. We'd be taken to court and the court would order us to have this done. It's a conflicting feeling considering the magnitude of the decisions we make every.single.day.

How could I ever possibly forget this battle we're fighting?

Conflicted. Good news is that we are down to only 5 more spinal taps and 17 more hits of chemo.