Highs and Lows

Going to the Disney store for the first time!

I haven't posted in a few months. There are moments when I think I should share something here, but it takes energy. I have to organize my thoughts, figure out if my words mean what I want them to mean, and then edit again. It's quite draining.

I still haven't fully grasped the fact that our daughter has cancer. Definitely not in a stage of acceptance or peace because we are only done with 2 rounds of horrible chemo treatments and there are 7 more. Jason and I realized that it's been more than 6 months since her diagnosis and surgery to remove the tumor, and there is a distinct feeling of life before cancer and after.  This time last year, Sophie began to ride her bike, started swimming lessons, gymnastics, and learned the rules of the road at this cool camp near our house with real train tracks and traffic signs to obey while riding a tricycle. Her hair was finally growing out to a length that was manageable. My favorite age for her so far was last year when she was 3 turning 4. No more terrible twos, she helped with chores around the house, loved playing with her sister, and was so much fun to be around.

Days are now filled with chemo treatments, waiting for her blood counts to drop, praying she doesn't get sick, and then tension easing when her counts trend upward. This is constant and not how I imagined her life 2 months before she turns 5.

Jason and I are at different places in this journey. He's looking at next year- January 2014 when all the treatments will finally be done and we can hopefully move on from chemo. Strange that it's worked out where I'm the anxiety ridden parent, full of stress and what ifs, while he is looking at the end goal and that Sophie is doing relatively well. Usually, I'm the more laid back one and he is not, but I'm thankful because only one of us can be crazy right now.

Slowly, the dark cloud has lifted though. Very slowly. I definitely was in a dark place for a long time and struggled with questioning everything. Why our family? Why our Sophie? Why is she going through this when she is so young? How did she get it? Is it because of genetics, her diet, environment, sin? My sin? Jason's?
Do people really have to stare at her for so long? What is it that they can't figure out? (A few weeks ago, we went to a local Asian grocery store-starts with H and ends in mart- and everyone couldn't stop gaping at her. Even when she walked past them and was several yards away, still stared at her. They'd look at her, at me, back at her.)

Those were questions that just swirled in my head. But when I started asking questions to God, it came from a place of anger more than curiosity. Reconciling in my mind His love for her and this cancer, it didn't make sense. There were many nights where I just asked God WHY? As I prayed for her, looking at pictures of her pre-cancer, I asked God, begged Him to look at her. Does He see her the same way I do? How strong and beautiful she was and how she looks so sick now and is not the same. I asked Him if really He sees her, all the pain, nausea, difficulty walking and going up and down stairs, how quickly she tires, her hair loss, her weight loss, inability to attend school and playdates like other kids and if this is what He planned for her. I pleaded with Him to take the cancer away so she wouldn't have to endure the chemo anymore. Over and over I screamed at Him in my heart how unfair it is and why her. For a long time, I held back because I thought I'm not supposed to be mad at God, but you know what? God can handle my anger and my questions. He hears my begging and sees my crying out. He can take my pain and devastation. Because I am so heartbroken and devastated still. Still.

This past week, we attended Sophie's end of the year school program and at the end they presented a slide show. Jason and I couldn't recognize the pictures of Sophie when they flashed on the screen because 1. she had hair, and 2. she wasn't so painfully thin. There are times these days when I can't remember Sophie before the cancer. How happy and rambunctious she was. It seems like a totally different child. It's only been 6 months, but I can't remember.

But a couple things give me hope. After the first round of chemo the doctor told us that whatever hair didn't fall out from radiation would definitely come out 6 weeks later. Not only did that not happen, but her hair is growing back.  And she still has some long hair on the side that she is able to use as her soothie. (This was a big prayer request.) When I see other kids at clinic, they don't have anything on their heads, but our girl still has some hair.

The other blessing is that we are expecting our third little one in November. A huge surprise to us, but the girls are so excited and cannot wait to change his/her poopy diapers. Selah wants a girl because "Girls rule and boys drool." Sophie wants a boy because she feels bad for Daddy as he'd be woefully outnumbered with so many girls. Jason says he wants a girl, but I'm sure he'd love brainwashing a boy with all things Michigan and sports. It's given us something to look forward to--celebrating life--and people have told us that God still wants to bless our family even through this nightmare. We will take it as that.

Bubble girl

So it's been a while. Life has settled into somewhat of a routine, albeit different than most other families. I'm 2.5 weeks into a new job, with more travel, lots of new things to learn, new relationships to build, etc. Jeannie is settling into this new world of setting up Soph's TPN every day, checking/monitoring her blood counts, and worrying/deciding what to do each day to keep her engaged, and somewhat "normal."

That's one of our bigger struggles these days. Cognitively/intellectually, Soph seems to have progressed normally; she has learned how to phonetically read, her memory is just as sharp as ever, and she demonstrates a curiousness and ability to process info as one might expect an almost-5 yr-old to do. So in that way, I am thankful.

Physically though, we are thru 2 cycles of chemo, of 9 total, and the first 2 cycles have brought constant worrying about her counts, whether to send her to school when her counts are low, or to keep her in a bubble. Our doctors have sort of left it up to us to use our judgment on maintaining a normal schedule, but we are afraid of her catching a bug that will be much harder for her to recover from than normal kids, b/c of her low counts. It's been such a relief when we get that call from the nurse saying that her counts are on the upward swing, but often it's 2 weeks of low counts where we have to lay low, avoid public places, avoid other children, etc. Otherwise if she catches something, it's at least a day or two back at the hospital to make sure it's not bacterial in nature. We have to go to the hospital anyway for multiple days each month for the chemo, we don't want to have to go more than we need to.

But is it realistic to keep her in this bubble until next Jan, her last chemo cycle? I don't know. As I mentioned, her cognitive skills are at par, and she's at that age where she needs social interaction with other children in order to continue to progress. I think she's bored at home, can only take so much of the TV, iPad, and other toys/games. I still believe in the adage, "everything you need to know in the life, you learn in kindergarten." But with her treatments, is it realistic for her to miss 2 weeks every month b/c her counts are low? Do we take chances and send her? Do we "redshirt" her for the year, and repeat kindergarten next year? All difficult questions we think about.

Oh, by the way, Soph was recently featured on the Pediatric Brain Tumor program at Lurie Childrens' facebook page. "Like" their page and keep up with the stories, people and place where Soph spends a lot of her time.

2nd chemo update (belated)

too hot for pants

Soph getting her nails done after discharge from the hospital

At the hospital, watching some videos, while Selah is causing trouble.

It's been a while since we've updated...

Soph had her 2nd chemo cycle on 4/23-24. It went well, very similar to the first one in March. It was the same cocktail of chemo drugs, and she handled it well. Not a lot of sleep, since the nurses come in regularly during the night, but she was in good spirits. 

Post-chemo, she's been ok. Some nausea here and there, but nothing major. Some extra fatigue, on top of her normal levels of tiredness. We typically do not see the effects of the chemo until 7-10 days after, and this past Tues labs showed that her ANC (type of white blood cell that fights infection) is a little over 500, very close to the neutropenia level of 500. This just means we have to be extra careful with germs, to keep her from catching anything, since her immune system is weakened.

But otherwise, all is ok with the Cho's. Seah is growing up more and more every day, and with that, causes trouble. She is refusing the title of "nicest person in the family," these days.

Soph doesn't eat much, if at all, but she's getting the TPN overnight, which gives her about 1000 calories, and everything her body needs nutritionally.

In the meantime, cycle 3 is June 4-6, with an MRI on June 3. MRIs are done every three months to make sure tumor is not coming back. Please continue to keep Soph in your prayers.

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!

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.

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.

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.