Spinal Tap Eve

We have not been having a good week. Not a huge surprise, but frustrating nonetheless. Ally has had a pretty bad cough all week. Putting this on top of her stomach pains, headaches, and other general ailments and it is making it rougher on all of us. She is still gimping around pretty good too...she has trouble getting up and down the stairs, in/out of the car, in/out of the bathtub, etc. She has only made it to school for that one hour or so on Monday....she wasn't feeling well and then the school called to inform me that the stomach flu is running rampant there. I certainly don't need that right now, so we just arranged for her tutor to come today and also on Friday. We are spending tomorrow at the hospital.

She is due in to CMC at 8am tomorrow morning. She has yet another spinal tap on her plate. She is also starting back on the 4 day cycle of ARA-C, so her port will remain accessed and they will come to our house for chemo on Fri/Sat/Sun. I am feeling about 90% certain she will need a blood transfusion as well. I believe this is the source of her headaches and she is also constantly cold. I think it is going to be a pretty long day again, and we are due for a snowstorm. I love the snow...so excited...but I would also like to get home safely from the hospital!

I was talking to someone the other day who's son had gotten a spinal tap and she told me that they did not go in to watch. She asked me if I did. I told her sure enough, I have probably now witnessed about 15 spinal taps. All of them equally nerve-wracking and filled with prayers as they insert the large needle into Ally's spine. You would think it gets easier, but every time I get nervous. Every time she comes out of the anesthesia it seems a little different, and there are always alarms going off on her monitors. Her heartrate is too high, her blood pressure is too high, her respirations are too low....agggghhhhh. The alarms just constantly go off and I think I stand about six inches from her bed with my fists clenched for about two hours. It wears me out. And then a few hours later...the doctor comes in with her report..."the spinal fluid was clear of cancer" and then I really breathe a sigh of relief. I always feel like we are just one minute away from bad news again...I think it is because I am scared of my bad luck streak. But I try, I TRY, to always stay positive.

This journey is filled with much stress and lots of prayers. That much is evident. I feel constantly on edge...checking over every last skin tab on her, noting every symptom, hoping that the doctors never miss anything. I spend all day trying to make her more comfortable, making sure she eats, trying to occupy her mind, and trying to protect her from god knows what. I faithfully read LOTS of other blogs of people in the same situation...trying to educate myself and make sure that I am not missing something that someone else has noticed with their child.

To be quite honest, I think I am finally wearing out. I added it up today. Eight months we have been battling this. It feels like eight years. I always try not to look ahead....one day at a time...but lately I have been looking ahead. I am thinking it is not such a good idea. But we really only have four months left. The really crappy part is remembering that when Ally was originally diagnosed, this "intense chemo" was only supposed to be six months. We would have been thru it! Done! But then her MRD number came back bad, and now here we are. We have to fight longer.

So I do feel worn out. I have given up pretty much everything in my life for this. My job is pretty much nonexistent (except for a few late nights at the computer)...I no longer volunteer at my kids school...I purposely haven't signed Evan or Carly up for anything as far as extra activities....I have gone out with my friends twice in the last 3 months...I haven't even gotten my haircut since September. It gets old and I feel trapped in here...and now it is the dead of winter and I will go days without seeing another adult face except for Jerad. These are just the effects that it has personally had on me...not even mentioning what it has done to my poor Ally or the rest of my family. I am really really trying to stay strong, but I just get so mad at this leukemia and all it has taken away from my family. I really long for simple things like seeing my daughter walk home from the busstop, or hopping in the car to go do something, and not having everything hinge on our current medical situation. I can remember being frustrated if my kids were sick for a week or two. And now I am going on my eighth month and ... well I guess that is enough venting for now. It is what it is and I have promised myself I will be honest on the blog. Someday I will look back and remember these days. Not happily, but I will remember.

If you are still here, after eight months, thanks for continuing to follow our story. I know the interest in it has waned and really it does seem to be the same story...over and over again. If you are still reading after eight months of the fight, then you have truly earned a badge that says Ally's Army! Quite frankly, I am running out of blog material! Or at least interesting blog material anyway. Someday I will be writing about FUN things that we are doing again or maybe our lives will be so boring there will be nothing to write about anymore. Normal is good. Normal is good. 90% of the people reading this are sitting happily inside of normal. Someday that will be me.