Weekly Update

 I asked to take her picture and she looked up and said, "cheese." At least she cooperated.

We were back to the doctor yesterday and after having a 10 day break I have to admit I was a little anxious to have her seen.
Last week she had a number of days were she had little to no appetite and we were basically force feeding her. Just as I suspected her weight was down a few pounds. In talking things over with the doctor, though, everything is still ok. She gave us some ideas of what we could do to get more calories in her and she pointed out that we were not to the point that she would need a tube into her stomach. Despite the low weight she was still full of sass which made the doctor happy to see her so vibrant. She said a few times, "she's good, and you're ok!" David made her repeat it to me. I will admit I get a little "crazed mom" at times and I there's a chance I don't think straight. In my defense, this is hard! And it get's overwhelming. And someday's are just harder than others. On top of all of those feelings that have been swirling for the past week yesterday was my birthday. I tried so hard not to get hung up on the fact that I had to take my daughter for chemo on my birthday. That thought just felt so depressing. Fortunately David had the day off of work so he could come with us. It made a world of difference. And I was reminded over and over that everything is, and will be ok. It felt good to have those reminders. And yesterday I really needed them. Yet another tender mercy.
With the weight loss I knew we would be facing I also expected the results from her blood work to not look so pretty. I was anticipating spending the day getting every transfusion and infusion under the sun. But that was far from the reality. Her results were great. In fact after her chemo infusion we were out of the cancer center in under 3 hours. It might not have been but it felt like some kind of a record.

We celebrated by going out to lunch. As in taking her into a restaurant with other people. Granted we found a booth away from people but still it was a big step for us. She didn't eat much, but was very interested in my lunch. That seems to be a pattern, her stealing my lunch. Some days I think if I had lunch money on me she would steal that too.
And now we have another long break, two whole weeks. Although next week we do have to take her (locally) to have her blood drawn. In the meantime we will be working hard on getting her to eat and drink and filling her up with as many calories as we can.

Wishing you all the happiest of Thanksgivings!

Chemotherapy Update

I realize that an update is a bit over due.
Last week our appointment was on Thursday.
She had an appointment was for a sedated lumbar puncture. Which means we had to go to the hospital. We've gotten to know the nurses and doctors there (only a handful are "chemo trained" so the ones we can see are limited, which I think makes it easy to get to know people) so I'm quite comfortable. However that day it was cold cold so of course I couldn't find us a close parking spot. And sister wasn't going to walk no matter what I did or said so I heaved her and our stuff much farther than usual. Fortunately we all survived.
The procedure for a lumbar puncture goes something like this. They get her all hooked up (the thing that annoys her most) with the pulse ox, and heart monitor, blood pressure cuff, and her port accessed. Then they give her something to go to sleep. They use the same medicine, as she handles it so well, but it's one that the body becomes a little less sensitive to so each time they have to up the dose. But it keeps her asleep and as soon as they stop pushing it in she wakes right up, like crazy fast. The actual procedure goes pretty quick. They numb the area then stick a needle in, drain some spinal fluid, then push the chemo. Once it's done she has to lay flat for 30 minutes. She wasn't having that this time around, so I just applied pressure to the injection site to prevent spinal fluid from leaking out.
After that she had two different chemo medication infusions. One that lasted 30 minutes and the other 10 minutes. The nice thing about being at the hospital is that the nurses can order her some food. Her latest food request has been soup, and even though she doesn't ask for it she loves green beans, so I ordered her some of both. And while we were waiting she downed a bowl of cereal. She was much more interactive this time, albeit slightly grouchy, and the nurses and doctors were completely smitten by her. Understandably so. Even with cancer and full of chemo this girl is hard to resist.
As I mentioned the weather has turned cold cold here (thank you polar vortex or arctic blast or whatever you're called), which means that the air is much drier. Her lips and cheeks are red and chapped. I've been putting stuff on them like crazy and fortunately she is drinking really well for me. However I'm slightly holding my breath. She is already at risk for sores on and in her mouth and the the chapped and cracked lips are like a breeding ground for cold sores. On top of that Friday afternoon her nose started to run a bit. It's still fairly clear but I still have hawk eyes on her. She hasn't had too much of an appetite but will still drink. And so far no fever.
Have I mentioned before there is no getting comfortable with leukemia?
This week we have a week off. No chemo! But we're back to the doctor's office next Monday.
Happy Sunday to you all!

What's New

We are long over due for a new update.
Fortunately, though, there is not much new to update.
Mary continues to get her weekly chemo. We got so used to Monday appointments but the last few weeks they keep throwing in some Thursdays in there too. Once again, not getting comfortable.
She is handling the chemo so well, it's almost unreal. No vomiting, she still eats and drinks without too much encouragement and only has occasional bouts with diarrhea. The biggest thing we have been combating is her sore bottom. I know it could be so much worse, though. Her lack of any major complications from the chemotherapy is a true tender mercy.
Usually she'll have a few really good days, then have a chemo day, then be a bit grouchy for a couple of days. And then it starts over.
We are still working hard on building her strength and getting her walking. We're to the point that we can sometimes get her to walk just holding on to one hand. Although she often uses the other to steady herself on anything close by. Today she'll be getting orthotic braces to hopefully give her more support. She really is moving around more and even climbs up on the couch and comes down the stairs on her own. As usual we are on her timetable and trying hard to be patient.
Throughout this whole experience I've learned more and more about treasuring experiences. I think about Mary pre-leukemia, PL, and after. There is so much that she used to do that she just doesn't. Whenever I see a glimpse of her PL I hold on to it. One such experience happened the other night.
The girl PL would often wander throughout the house. She was quite content to play on her own, sometimes, and if she wanted something she would just go and find it herself. I always felt that these things were both good and bad. Bad because I would loose her. She has wandered out of the house before so there was always that fear. I started to teach her to respond when I would call out to her. I would say, "Mary, say hi mom!" She quickly caught on and I would hear a little, "hi, mom," coming from whatever corner she'd found. It wasn't uncommon for me to hear her saying hi from the pantry. She would go in, sometimes close the door, find a snack and settle down and dig in. Once she was found it didn't always end in her favor. At the same time it was often too adorable for me to get too upset.
The other day she was move around a lot more than she had been. I let her scoot free. She went in the living room and then into the kitchen then pretty soon I realized I hadn't seen her for a little while. I went looking and this is where I found her.

Once again I couldn't get over my excitement enough to take the chips from her. Considering how hard she had worked.