Wednesday, June 23, 2010

Day 1 of Maintenance

Well we finally made it. We crossed the glorious bridge into long-term maintenance. I have many mixed emotions about this phase. It is long (16 months still) and she still gets a little chemo every single day of it. That is something like 500 more days of chemo ahead of us. It is not going to be a walk in the park, I know. She still gets steroids and methotrexate (she does not react favorably to this one)...but I am still hoping it is all easier on us.

She started the phase with a spinal tap. It didn't go very well. As soon as we walked into the room, her normal nurse said wow she seems really relaxed today. This is as she is laying on the table getting all hooked up to everything. And she did seem relaxed, I agree. You can just never tell with her. She fights the sedation so much. She NEVER actually goes to sleep, which makes it hard. As soon as Dr B started prodding around she was screaming. The needle wasn't even out yet, he was just using his hand. So when the needle went in, the screaming got worse. For whatever reason, he couldn't get the needle in the right place and had to stop. This makes me extremely nervous...I always am worrying that it has come back. He asked for the nurses to give her more sedation, which they did, and he tried again. It was still quite hard, but he got it and she was not happy about any of it. She finally went to sleep after the procedure was done (they invert her..head lower than feet....and make her stay that way for an hour) This allows the spinal chemo to travel up through her spinal fluid and get around her brain. She slept the whole time, but then woke up very crabby and agitated and saying she wanted outta there. (which was not an option at the time) She was also throwing up a little, which always seems to be the side effect that she gets. The agitation is a result of her getting extra sedation medication. It happens every time they give her "extra", but really not much we can do about that. It wears off eventually, and we get our regular Ally back. And the nurse who made the comment, whom we love, said ...sorry I jinxed you by making that comment about Ally being relaxed.

We got full lessons on all the medication we are giving her at home. It is A LOT of medicine. She is now getting five days of steroids every month...and it is now prednisone instead of decadron. They say the side effects are a little less with this one. But still it should cause her to eat extra, have trouble sleeping, mood changes, etc. We do not like steroids in our house. Every parent with a child with cancer dreads "steroid week" but then the other three weeks should not be as bad. She is taking 6-MP chemo every night...not allowed to have food anytime around this, so we wake her up to take it. She will also take methotrexate once a week. (another chemo) She also has other meds to mitigate the side effects. We have a pretty detailed calendar hanging on our fridge now to keep it all straight. The good news is that she only gets chemo through her port once a month! and a spinal every three months (not till September, woo hoo). We were told we don't have to be back to the hospital (barring any illness) until July 22. This is a very strange feeling. I don't have to be lining up the next babysitter upon leaving the hospital, etc.

So for now, we just pray and pray and pray and pray that her body responds well to this. That the cancer cells stay away. I am always reminded that it just takes one stray cancer cell. And it turns into 2 and that turns into 4 and that turns into 8....ugh.

I know I am sounding a bit crabby. It is all so hard to swallow. All in one day, this is what I dealt with:

Had the crappy spinal with Ally
Went to a funeral visitation for an 18 month old boy whom I loved
Found out another girl Ally's age, Skye, was told there was nothing more they could do for her cancer (kidney). "outta options"
Spoke to another friend whose daughter has been in ICU for a month with her blood pressure crashing and they don't know what is going to happen.

It is hard to just go to sleep and carry on with life when these things are going on. I feel guilt and sadness and anger and everything else. Sorry to lay it all out here, but it is what it is. We must keep walking through this valley and get to the other side. We must.


  1. I can sense the roller coaster dipping down a bit today and I suppose that is part of this "ride". This week has had a variety of dips, hasn't it? Pray for comfort, I will cntinue to do the same for you and yours.


  2. Well, I'll give you one light, 'our girl' here with Ewing Sarcoma was pronounced cancer free! She just finished her treatments, her port is out and her hair is growing back! She was at our pool last Friday, though Sam didn't recognize her. She had been in his first grade class and had hit so many of the things you're going through just months before Ally each time. It's possible, it's happening, and you are on your way. I love you, sweet, take care!

  3. I agree. It has been a tough week for our Dayton family. Not only is it extremely sad, but it puts you on edge with your own child and wondering...could we be next? I hope maintenance goes extremely well for you all. Enjoy your summer!

  4. Yes, you must keep walking, and you will. And if you can't, the Army will carry you. I just am getting caught up. So sorry for the loss of Lincoln. So very sorry. I can't find the words.

    Jared's post was great, and your photo compilation was too. Maybe if you check out those smiles, and your Pa's eyes as he looks at Ally, some of your sorrows will be gone. You guys can do it. I know you can. And I know you will.

  5. This is one of those nasty times, nothing seems to be going right, but it will change. Things will get better and the light will get brighter, just get through this one day, one day at a time. You are doing great and you will keep walking and we will all walk with you. Hang in there, good thoughts and prayers coming your way.

  6. Praying for you to have the strength to walk through this valley and get to the other side. It has been very low for you these past few days after all the highs of having your normal Ally enjoying all those things she deserves to enjoy. And you so deserve to see her enjoy. I'm so sorry your lives have dipped down again - will keep praying for better days for all of you.