Thursdays

I hope this blog post does not end up sounding too negative, but if it does, I am apologizing right here at the beginning. It was a rough day today. Not just for Ally, but more so for me. Ally was really really tired today. She did very little. She went to the blood lab this morning and I also got her outside for just a bit. She laid in the grass with her friends. But that was the extent of it. Played a few games inside, but she really couldn't even hold her head up while sitting at the table. I just don't know if this is normal or not. I try to push her a bit, like they tell me, but there is only so much that I can do. I can't drag her around or force her to do much. All that I can do is turn off the TV and present her with options of things to do. She really doesn't even talk much anymore. I think she is just fighting through this chemo and fatigue so much that she doesn't want to expend any energy. It is sad.

And from my perspective, I would love to do more. I would love to get a big jigsaw puzzle out and work it. I would love to play more games. But the fact of the matter is that I have two other kids here all day too. Someone needs something every single minute. And having an almost two year old...that really limits what we can do. A bead necklace? Nope, she will throw those beads everywhere. Jigsaw puzzle, not if you want to have all the pieces. Card game? Only if you want to play 52 card pick-up. We love our Carly girl, but we just can't do these things with her around. Frustrating. And I mentioned being in the bubble, not able to go anywhere...well it is really getting to me. I had ants running around my house today. But couldn't go out and buy ant traps. (thanks Nicki for the traps, BTW) Simple things. I can't do them. I know people will help me out, but the whole situation is just very hard. They don't want to be left. I don't want to leave them. But, oh yes, I do want to leave here.

I keep hoping that things will get better. One day at a time. They are not getting better anytime soon. I haven't yet mentioned her treatment plan. We have 27 months in front of us if we get the numbers we want. Otherwise, more like 31 months of treatment.

These are the very basics on her chemo....we also have lots of meds at home

Month One: Induction therapy...they hit her very hard with the chemo. We go every Friday for treatments. They are trying to get her into remission in the first four weeks. If not, they will extend her induction.
Month Two & Three: Consolidation. Basically they lower the dosages in that period. We will still go every Friday to the hospital (spinal taps every week), but she will also be getting little bits of chemo every day. Home health care nurses will come to our house for this and hook her up here .
Month Four & Five: Interim Maintenace: Another big heavy hit, like they did in month one. Increased dosages. Only two spinal taps in this month. They told me this is one of the hardest times. It is when most of the patients get infections and end up in the hospital. Blood counts all go down to zero. Unfortunately, this will be September when she is starting second grade!
Month Six and Seven: Standard Delayed Intensification...Still going once a week. They throw a couple of new kinds of chemo in there and also some more home visits.

Once we get through the first seven months, assuming she follows the path (and her bone marrow test tomorrow is less than 5%) she will go into a maintenance therapy for the next 20 months. She gets IV chemo once a month, a spinal tap every three months, and she takes a few more of the drugs (by mouth) at home.

So please, please, direct your prayers towards her bone marrow test tomorrow. The blasts (leukemia cells) must be less than 5% by tomorrow or she will have to have even more treatments than what I just outlined above. They indicated that she will probably have to do radiation if that happens too. Enough is enough. Jerad and I are just so worried about this. It is funny how I used to worry about little things. Birthday parties, a clean house, what to take for the teacher luncheon, organic milk?, whether they do alright in their sports, too much TV, too little vegetables, not reading enough to them....it is all so meaningless now. I started to change my thinking on all of this when my Mom was dying. And now, I am just done with it. Life is too short. So my new theory is this...one day at a time.

I will try to post her % tomorrow as soon as I know it. Probably won't be until late afternoon though. We are heading to the hospital at 7:30 am. Quite early for my girl who rises at 10 am everyday. (and did I mention she eats once or twice in the middle of the night too?...a result of her steriod...we feel like we have a newborn again) On that note, I better go pack her midnight snack.