Monday, April 22, 2013

New beginnings

So things have been relatively quiet with Soph these days. No major issues. A runny nose here and there, and it took a while for her to shake the cough, but her ANC count is back up to normal. That tells me that the chemo is mostly out of her body, hopefully did its thing by obliterating any cancer cells. She's not even taking any medicine these days. No nausea, so no zofran

But we head back for cycle 2 tomorrow. Should be (hopefully!) very similar to the March cycle. Check in on Tues, get an audiology check, then get admitted for about 30 hrs, hopefully leave for home on Weds. Soph did very well last time around, no issues or complications.

The other big news is that I gave my 2 week notice to Bel on Monday. Most of you might be thinking that it's  probably not the best time to make a move, given Soph's situation, but this was one of those things that unexpectedly popped up, and all of the stars seem to align. The company is called Elkay, and they make sinks and cabinets, much different than the food industry where I've spent the past 12 years! The biggest appeal is that it is located in Oakbrook, which is 15-20 min drive from home. Getting almost 1.5 hrs back in the day is invaluable.

At the same time, leaving Bel is so bittersweet. Yes, it's not a perfect place and has its issues, but I'll really miss the people and relationships. It sounds cliche, but that's what it's really about. From the people in Chicago, to the good folks at our 2 plants in WI/KY, to my international colleagues in France, I will miss the interactions with most of them. 

This is my last week, less 2 days for the chemo visit. It will be filled with transitions and goodbyes as I close the Bel chapter for now.

Thank you to all for your continued prayers. We'll need them again this week!

Thursday, April 11, 2013

A brief scare...

Starting from mid-last week thru the weekend, Soph spiked a fever anywhere from 99.2 to 100.5. Lurie has told us if she has two consecutive fevers of 100.4 or above an hour apart, that we'd have to come in.

We were really close last Weds, but her fever went down to 99.2. But on Saturday, she was up to 101.6, two hours in a row. So Jeannie and Soph were off to Lurie downtown, while I stayed home with Seah. I wanted to go, but we figured if all of us went, I'd really just need to get to RM house to put Seah down, and it'd be much better for her to sleep at home.

Soph went to Lurie ER on Sat night, and waited almost until 1am to get to her room. Needless to say, it was a long night for both of them. Seah and I headed over first thing on Sunday morning to keep them company.

The big deal with a fever is two things:
  1. Chemo kills rapidly dividing cells, which include the cancer cells, hair cells, and blood cells. This is why we have to keep track of her blood count weekly. The past 2 weeks, her ANC (absolute neutrophil count) has been very, very low. ANC is a measure of a type of white blood cell that fight infection. This is why we have to be more careful around sick people, germs, etc.
  2. Related to the above, is that we have to rule out a bacterial infection. If her fever is caused by a virus (common cold), then she'll need to fight it like the rest of us. It'll be harder b/c her white blood cell count is probably lower than the rest of us, but it's ok. But b/c she has a port, it's basically an open line into her body. If that port or any part of it gets infected with bacteria, we are in trouble. That's why we have to go in, get cultures, and see if any bacteria grows.
Fortunately, there was no bacteria, but she did have to spend a night in the hospital. She was discharged on Sunday afternoon, and probably slept almost 15 hrs from Sunday afternoon to Monday morning.

Otherwise, she's still in good spirits, battling the cold (we think) with some persistent coughing. Her ANC has rebounded from around 300 last week to almost 1100 this past Monday, so she is getting better.

The crappy news in all of this is that we have to go in for the second course of chemo the week of 4/22, so all of this starts over again. More chemo will kill off more blood cells, and we will have to be on high alert.

This is our life for the next 9 months at least.

Friday, April 5, 2013

Out of the mouths of babes

We've settled into somewhat of a different night routine these days. I take Seah, Jeannie takes Sophie. Mostly b/c Jeannie has the most experience with Soph's TPN, but also b/c at the end of the day, literally and figuratively, Soph wants mom.

Seah is fine with it; we've developed our own special routines and fun things.

One thing we both do near the end of the night is to pray with our girls. My faith is not rock-solid, but I'm realizing a bit more every day, that regardless of my actual or perceived proximity to God, I have little to no choice but to trust in Him. Medicines, doctors, treatments are important, vital, but after all of that, our fate and outcomes are only in God's hands. I know that isn't a ringing endorsement of complete faith in God, but it's where I am today.

Anyways, last night Jeannie prays with Soph, and after praying for our family, she prays for a few of our friends who are sick or might have to undergo some further testing b/c of unknown diagnoses. Afterwards, Soph asks,

S: does, Ms. _ have owwies?
J: Yes, Ms. _ might have some owwies.
S: but I have big owwies, umma.
J: Yes, you have big owwies.
S: I have brain cancer, umma.

What do you do with that?

In the almost 5 years that we've had children, I have learned that children know and understand a lot more than we think or give them credit for. I'm sure a lot of you have found the same. As such, I've always spoken to my girls as people, explaining things even in "grown-up" terms (within reason & tact, of course). Much of the time, I don't expect much, but I still try to give a thorough, complete explanation. Who knows how much of it sticks, but they always surprise you, don't they?

Throughout this whole thing, I've been upfront with Soph about her condition, why she has to go to the hospital, rehab, get a port, get TPN, change her needle weekly, etc. Most of the time she doesn't have much of a reaction, probably b/c she thinks I'm crazy, but that conversation last night with J really hit us hard. We don't know how much she understands, but she knows a lot more than what she lets on.

Please continue to keep us in your prayers. 4 months after diagnosis, it's still hard for us. Hard for us to believe, hard for us to see, hard for us to be positive.

Monday, April 1, 2013

What is normal anyway?

Easter egg hunt from this past weekend
Troublemaker, capital T
Sorry it's been quiet on the blog front. There hasn't been too much going on. It seems to be settling into our new normal. We've talked about that term before, and to be honest, it's not something we like to use, but it's probably the most accurate way to describe our life at this point.

Sophie is doing ok. She doesn't really eat solid food, b/c of her TPN. It's a 12-hr infusion overnight, where she's connected to a small pump and bag of TPN, which contains all of her nutrition, vitamins, lipids, etc that she needs. Most days she will drink a bit of juice (with her Zofran, anti-nausea), and perhaps a bite of food. The past 2 days she's been munching on microwave popcorn, of all things. She doesn't want anything else that we offer except popcorn (in a Michigan Wolverines bowl!). We took a trip to Jewel yesterday, and she also wanted Danimals smoothies, so I got that for her, and she downed one when we got home! It's a bit odd now, though, that there are only 3 mouths to feed in the house. Not that Soph ate that much, but most of our grocery shopping for the past 3.5 months or so was centered around what Soph would eat. Now, not really an issue. We just have a whole bunch of Pediasure in the closet. If anyone needs Pediasure, hit us up!

But otherwise she is most always in good spirits. Her gait has gotten better, but she still walks with a limp. We are sending her to preschool 3 days/wk, just to keep her engaged and occupied. Last week was Spring Break, and she was pretty bored. iPad can only keep her occupied so long, and she's mastered all the jigsaw puzzles in our house. I bought a bunch of sticker books, which is also one of her favorite things to do, but Selah keeps putting the stickers on the wrong pages when no one is looking.

The home nurse comes once/wk to change the needle on her port. Jeannie has become an expert now in administering the TPN, disconnecting from Soph's port, etc. It's not something a parent would ever think to be doing, but then again there's been too many things/thoughts/events in the past 4 months that we could never have imagined.

Next chemo is April 23-24. It will be the same drugs and process as the one in March. Soph handled that well, so we hope for the same in 3 weeks.