Gold vs. Pink, After a Link

First, update: Yesterday clinic was great. Much like last week, except that I remembered the numbing cream. Emma giggled through port access, which means that Becky is a great nurse and Emma is a brave girl to giggle in the face of needles.

That's a little creepy; but such is our new life.

Her ANC is a measure of just how much she is at risk of infections or illness. It was higher than it has been since diagnosis, which is really good. She ate Macaroni and Cheese while waiting for her chemo.

Today, the day after, she is totally tired. That is a pattern: tired after chemo and bigger swings in the big moody mood swing.

In other news, Emma is walking more and seems to be in less pain. This is incredibly good and positive nd joyful.

Second, I have a couple links that are encouraging to me today.

This article helps me hope that Emma will mostly forget the awfulness of cancer.

And this article, written by one of our nurses.

Third, September was childhood cancer awareness month. Gold, by the way. October is pink for breast cancer. I have joined a Facebook group of Cancer Mommas. There are some Mommas who are sad to see all the pink because the world didn't go Gold for our kiddos last month.

You see it: pink yogurt lids, ribbons on all kinds of products from oatmeal to clothing. Pink ribbons on airplanes, billboards, and NFL jerseys. Susan G. Komen is a busy, busy lady.

I am very close to a breast cancer survivor, and very close to a breast cancer victim that didn't survive. I can't be mad about the pink. I honor my dear, dear friends and I hope for better treatments and a cure for breast cancer.

I hear that Orange is for Leukemia. I haven't seen that official. I don't think Emma is any  less loved if you put on some pink today. Love grows as you give it away, so love the pink, and share a little extra love with your coworkers, friends, family, or roommates today in honor of Emma.

Second Clinic

We got to clinic and Emma weighed in 2 Kg heavier this week. That's 4 1/2 pounds of lasagna, chicken nuggets, enchiladas, and steroids this week.

We got our favorite nurse again, Becky. Becky was our night nurse twice while inpatient, and she also works the clinic on Wednesdays and Fridays. She loves, loves Emma, and we love her, too.

I had forgotten to numb Emma's port, so while we waited on the numbing cream, one of the Child Life gals came in and reviewed port access with Emma. She brought a doll and supplies, and Emma prepped and accessed the doll, put on a "sterile" dressing, then gave her medicine (Food-colored water.)

This is Emma's third practice doll, and this one she named Lizzy. Lizzy-doll got a lot of medicine and leaked right through her cotton skin. :) Don't worry, though. Leaky as she was, we love her enough to bring her home.

We talked with a resident and an attending oncologist about Emma's increasing limp, what hurts and why, and how to deal with it. We discussed her meds. We discussed all our concerns, her changes, and her labs.

Then we got her next dose of chemotherapy and we were cleared to go.

Hobbit Habits

Emma was up bright and early and hungry. I staggered into the kitchen and made her 3 eggs scrambled. She chattered away as I cooked and sort of woke up. I put the plate in front of her and went to brush my teeth.

By the time I returned to the kitchen, she had inhaled her eggs and wanted another plate, so I made 2 eggs. She finished those with some lemonade and got Lizzy up.

Lizzy and Tommy wanted french toast, and Emma asked for lasagna. She got the last square. She's been asking for lasagna and enchiladas a lot. I'm out of both, now. Gotta do some cooking, I guess.

So, she has had her second breakfast. I'm gearing up for elevensies and wondering if I can get away with just sandwhiches for that.

Subtle Changes and a Tweak

Steroids make a body bulk up a bit... which is why some bodies choose to use steroids. Emma's cheeks are getting a bit puffy as she takes on a bit of the leukemia look. Her steroids also make her a super hungry little person, so whether it's the steroids or the extra calories, we can detect a slight thickening around her belly.

She still has all her hair; but she knows she will lose it. Emma doesn't like to talk about it. Her aunt is making a hat, or maybe a few. Gramma Linda has sent a couple hats already that are awfully cute. Like I say, though, Emma doesn't like to talk about hair. She lets me brush it, but she doesn't want it even braided or put in a barette any more. Just hanging loose, while she still can.

She really doesn't want to walk. She will walk where she wants to go; but if we want her to come to dinner, to go to bed, or to be anywhere, then she wants to be carried. Discomfort can be tolerated on her own errands, but not on Momma's. Which leads us to Clinton spending today working from home with a tweaked back, sitting on an ice pack and being good friends with some Tylenol. Not just carrying Emma, but also carrying Tommy and Caleb, moving furniture at my behest, and being slightly stressed.

Emma is doing pretty well today. Took a good long morning nap and had energy to play really well with Lizzy and Tommy in the afternoon. She tried a new variation today with her steroid: instead of magic shell, we tried it with Caramel sauce. The verdict: also an acceptable mask for the medicine.

First Clinic

9:00 am we arrived for our clinic appointment. Check vitals, and since Emma's port has only been accessed once, and that under anesthesia, we had some kid learning for that. Then the access, for which Emma was  a super star. We met with a fellow and an attending doc. Doug also came by to see how we are doing.
Then we had her Vincristine and started a platelet transfusion.
At noon, the platelets were still running, but it  was time for the lumbar puncture, under general anesthesia.
The steroids are making her HUNGRY, so fasting until then made her a tad bit moody and unhappy. She went through 2 bags of cheetos, a bag of sun chips, grape juice, orange soda, and at least 5 cheeses.
Her heart rate was pretty rapid, particularly elevated for her last week, so we waited a couple hours on fluid before they were satisfied and sent her home.
Lizzy had meanwhile gotten home, gone to a neighbor, and gotten her homework done. That wasn't the plan; but it worked out. I am so grateful for excellent friends and neighbors. So that was our first clinic day.
I thought we were getting into a groove and kind of had this, and today proved that I have nothing at all under control. 

She Eats

Emma didn't eat a lot in the hospital. Like really not a lot. A few strawberries, half a chocolate milk, and a nibbling bite of PBJ provided it was cut in squares and not triangles. That's it for a day.
She is taking a steroid, day 6 now, that is likely to make her super hungry all the time. Also it may make her grumpy grumpy.

We started seeing the grumpy in the hospital; but no appetite.

This morning she's had a few glasses of milk with her two cheese sandwiches. While that isn't teenage boy appetite, it's fabulous to have her voluntarily eating.

There is a bit more energy in her this morning. Of course as a rule, good days interweave with rough ones. We'll probably use up a good amount of that energy in a trip to the lab for a blood draw this morning.