Expectations

So, just want to talk a little bit about what I expected when I found out Robin had Acute Lymphoblastic Leukemia.

I expected her to be bed-ridden. Tubes of poison hooked up to her and dripping into her all the time. I expected her to have to endure this without much interaction, that she’d be put into the machine and then more or less abandoned.

I expected her to endure long days of nothing, just waiting for her body to absorb and process the poison.

I expected that she could be cured, and then we would go into a preventive mode, and we could sort of move on.

I was right, but I was also wrong.

She spends a lot of time in bed, but not because she’s hooked up to half a dozen machines. She does it because she’s weak. She’s literally being poisoned, and her body is just weak.

She had an IV in her for about a week and a half, and then they removed it. They had to put her back on it because she caught a little strep infection, and her fevers spiked, but if that hadn’t happened, she would have been free of any machines.

Yeah, she’s alone in her room, but she rarely is left alone in there for more than 30 minutes. Someone is always in there, taking vitals, checking on her progress, getting samples. She’s surprisingly busy.

One of the things that surprised me is that she started having delirious dreams. Not really because of any of the medicines, but she was too weak to get out of her room and see other things. Her mind, craving some kind of stimulus, started to manufacture crazy dreams for her. After that, she made it more of a point to get out, or to at least watch some tv.

She’s weak. When she’s on the IV, she has to manage that machine, and it’s a pain in the butt, but even if she were off the IV, she moves slowly. She just didn’t have the energy to do anything.

There are the appetite problems. I expected that, but I didn’t expect why. Her taste buds are hyper sensitive, so strong flavors are hard for her. And because all of the new cells in her body are being destroyed by the poison, her body is reacting to protect the damaged tissue by producing a lot of mucus.

Our last cycle, probably one of the biggest curveballs was the spinal tap. She had very bad headaches from that, which also made her nauseous, and hard for her to eat. Sounds like we’re facing that for the next cycle as well, unfortunately.

But out of the last 3 weeks, she really only had a handful where she felt terrible. Most days, she felt pretty strong. It took time for the poison to impact her, so even though she was being treated, she felt good. It wasn’t until a couple of days later that she began to feel the impact of the drugs.

So the whole thing has been a lot more mundane than I expected. She’s bored, but she barely has time to be bored. She’s been sick, but not that much.

It’s exactly like I expected, except it’s not.

Well, Hello There!

Rory again, here to clear up your worries. ‘Cause that’s what I do.

The worry I hear most is how am I doing, or how are the girls doing. We’re fine.

I’m not just saying that.

We really are doing well. This treatment is going to take a long time: about 18 months. Yes, a year and a half. We started in January, so our new normal is going to last until 2021.

The most important thing we (meaning the girls and I) need to do is to find that new normal, and we are. We have a good routine. Everyone is getting where they need to be. Work is getting done. Grades are being maintained. Complaints are being registered about stupid people at school. Expect to see movie night this summer. We still walk downtown on weekends. We’re making our new normal.

We need to do that, because just waiting for Robin’s treatment to be done isn’t an option. Not for a year and a half. We have to figure out how to stand on our own during this period, both to keep ourselves happy and so we can better support Robin.

I know I sound unreasonably positive during this period. Again, it’s my role. I need to be positive for the girls, for Robin, and frankly for myself.

I’m not putting on a false face. I am truly positive about the outcome. We have grown, the girls have impressed me, Robin has impressed me, even I have exceeded my expectations. We’re doing well. All of us.

I truly appreciate all the offers of help I’ve received. It’s heartwarming. We appreciate it, and it makes us feel good that you care enough about Robin and us.

Thank you!

Every day I’m shufflin’

Rory again, stepping in for Robin.

She’s doing much, much better. Still complaining about some aches and pains, but she can eat, and she just sounds a lot more lively.

So her blood counts are going up. Rapidly.

That’s a very good thing.

And they’re talking about releasing her this week. Possibly as soon as Wednesday.

The downside is that she’ll be back for round two pretty fast, maybe as soon as Monday next week, so maybe only 5 days home.

But overall, very positive!

A little better today…

Robin had been having nightmares which made it difficult to sleep. The intern told her that’s a thing, and it’s probably the result of being cooped up in her room too long.

So yesterday we made her get up and walk, and we also suggested she watch some TV (she doesn’t watch much).

She did get out a little more, and had a better night, so mission accomplished. Little things.

Her hair is coming out and it’s annoying her, so the clippers came out.

Duh duh duh.

Girl A has been strangely excited to see Shaolin Mom.

So we settled down to work.

The reveal.
Personally I don’t care for the beanie

I brought her a fez, but she refused it. I don’t understand that, because Fez’s are cool.

We’re happy to see her getting around better today.

Visiting again…

Rory here.

We didn’t come down here last Sunday. The girls began to feel poorly, and we didn’t want to risk infection.

But we’re back down today. Robin had a rough week, the she’s recovering from the drugs and doing all the things she’s supposed to do.

In spite of that, she got a strep infection, and she’s been running fevers for the last couple of days. They’ve had to go back to putting her on a drip for fluids, and they’re giving her antibiotics and antivirals now.

She’s also just tired of being locked in a hospital room. She told me she had terrible feverish dreams last night, probably because she’s trapped in a small place with limited stimulation.

She gets headaches when she spends too much time on the screen, so that’s why you haven’t been hearing from her.

Our neighbor made her some bone broth, and we brought it down to her. Robin really appreciated it. It’s hard for her to eat because of the sores in her mouth, and her taste sensitivity.

So all of that sounds bad, I know. But it’s to be expected, and honestly I see some progress her. With any luck she’s going to feel better and will be able to update the blog again soon.

Right now we’re going to take her for a walk. Be right back.

We’re back!