Phase 2

We're on Day 4 post surgery, and things are going well. Harper is getting up and walking around. They are slowly lowering her BP med dosage (having already reduced it to one med from two) and her pain meds are being lowered as well.

She has only had liquids to eat so far, but things are improving there too. The surgical team, when rounding this AM, indicated we could start her on soft foods. I'm thrilled, because even though she isn't begging for food yet, I don't want her albumin levels to get low like last time. Eating will help prevent that, I hope.

Once she's eating, and her GI tract starts to normalize, then I suspect we'll start talking about when we can go home. The surgeon said, before the surgery, she expected us to be here a week - and my guess is we'll be very close to that.

This surgery was HUGE on her road to beating the cancer. The kidney they removed was almost undoubtedly the "source" of the cancer, and was also the largest grouping of cancer cells in one place in her body. But we still have a long road of additional chemo ahead (lasting AT LEAST until Christmas). We're only halfway there (at best).

As we recover from the surgical procedure, we are thinking about what is next. We are focusing on planning for what happens after we get home. We are starting to think about phase 2.

To help offer some solace to her and to ourselves we've all along focused on the fact that you can easily survive and lead a very normal life with just 1 kidney. The surgeon, during our consult prior to surgery, said "For most things that are important, God gives you two." Harper quickly pointed out that he doesn't give you two hearts or two brains, which the surgeon conceded. That little girl is just too smart.

Then, after the surgery, we sat down with the nephrologist. We hadn't seen him since her last hospitalization, and he indicated that the hospital's medical records system was giving him trouble trying to pull up the detail from our previous hospitalization (thank you EPIC), so we had to refresh his memory. After that, he also reminded us that people live very normal lives with one kidney, and, in fact, that the remaining kidney will actually increase in size (very slowly) to help compensate and pick up the slack.

Then, he nicely told us the things to avoid... The things that posed a greater danger to her than to others. We started with drugs. Specifically, that there is one chemo drug we're using (cyclophosphamide) which is nephrotoxic. I don't think we'll stop using it (her current cocktail is showing good results) but we'll have to watch it much closer.

Then came "activities." Swimming is fine, but no diving. Soccer is okay, but no rugby. Running tack is ok, but no high hurdles. Riding a bike, with normal head protection, is ok - but no motocross - and no ATVs (handlebars are a big problem in accidents). Horseback riding is fine, but no jumping big obstacles. Basically, normal activities are fine - but things that have a higher risk of impact to her remaining kidney (which could leave her with NO kidneys) should be avoided.

Harper is like a cat with only 2 lives. And they just removed one of them. We have to be really careful to protect the remaining one. And that will mean saying no to some things that I'd much rather say yes to. Not today, of course, as we continue to help her back and forth to the bathroom. But there will be things that come that we will say yes to her sisters, and no to her. It's going to be hard.

When all of this has passed... When Harper is "cured", her hair is back, she's back in school, and life is back to "normal" (even a new normal) - there will forever be reminders of this experience. Long lasting impacts, some of which we can't even fathom yet. But I'm looking forward to getting there.

But for today, we focus on eating. Lets get some soft foods in her. Lets get that GI tract going. Lets get up and walk around. Let's get her home.

Let's stop sitting around (if we don't need to).

Let's get going on phase 2.