June update

It's been a long month for us. This 3rd cycle of chemo with the cytoxin has been rough. I can probably count on one hand the number of bites Sophie has taken of food since June 3. With the first 2 cycles, she would still eat a little bit, but with this one, she keeps telling us that everything tastes yucky. She is still getting TPN every night, which gives her what she needs, but what we would give to add some meat to her bones. I so wish I could transfer my excess to her!

Our time in between cycles is usually 6 weeks, but between the 3rd & 4th, 6th & 7th is only 4 weeks. So next week is cycle 4. Given last week's 3-night stay at the hospital b/c of her fever, we will have been at the hospital every 2 weeks in the past 6. Doesn't feel good. No one gets good sleep, we are separated as a family, and it just wears on you.

But we move forward. Soph's counts were super-low last week, ANC down to 5 from 6/17 labs (normal is above 1500), but from 6/24 labs, she was back up to 1445. It will go down again towards the end of next week, beginning of week of 7/8, but hopefully will rebound quicker than this past cycle.

We are looking forward to our CG retreat this weekend. It will be the first time outside of home or the hospital that we would be spending the night. I'm a bit nervous, but we'll figure it out. Soph will still get her TPN overnight, but the difference is we'll all be in the same room. Should be fun. We don't want this cancer to keep us from enjoying normal life. A weekend at my parents' in July is also in the schedule.

Seah has been in the terrible two's stage for a few months now. Doesn't listen, purposely annoys her sister, screams. The good news is that she turns 3 on 6/29, so hopefully she'll start to turn the corner. Sophie turns 5 on 7/1, so this weekend will be weekend of birthdays for the girls, though we'll be at the retreat.

Jeannie was able to get away for a weekend last weekend to NY, to visit with my sister. It was a nice break for her, and I survived. :-)

Please continue to keep us in your prayers. 21 weeks pregnant for Jeannie, busy at Elkay for me, and for Soph to start eating at least a little bit.

3 down, 6 to go

So it's been slightly over a week since we finished the 3rd chemo cycle. Usually the time in the hospital is uneventful, boring mostly, and Soph does well. No one gets good sleep, so we are all tired for a few days afterwards, but the actual administration of chemo is not a big deal.

It's the days/weeks following that are unpredictable. Again, with every 3rd cycle, Soph gets a different drug, Cytoxin, which is different than what she gets in cycles 1-2, 4-5, 7-8. So far, it's had more of an effect with nausea. She's been consistently vomiting every night or morning, even with the Zofran we've tried to give her. As a result, she has been eating about half a bite of food per day. Prior to this 3rd cycle, her appetite was picking up, and she was eating something like 5-6 bites of food. Isn't it sad that we measure her food intake by bites? Another undesirable result of this terrible cancer.

Thankfully, the TPN still gives her the 1000 calories/day overnight, but it'd sure be nice to have her eat a bit more.

Otherwise, no fevers yet, and we are entering the zone where her blood counts drop, so we are on alert for that.

Summer is here, and we are trying to balance a few programs/classes in between chemo cycles and on weeks that we anticipate that she won't be neutropenic (low blood counts). We want to limit some of the physical activities, since we know she may not be able to keep up and gets mad, so there's a few art classes teed up, along with some rehab sessions at Marianjoy.

Thanks for your continued prayers. Sophie is usually in good spirits, and we are hopeful for the best outcomes. With baby on the way, life will get busy and complicated, but we are holding on to the promise that God doesn't give us more than what we can handle.

P.S. We started a facebook page that anyone/everyone can visit and like to keep up with updates and pics (that will hopefully be more frequent than these posts).

http://www.facebook.com/feistyfightersophie

3rd cycle underway

Back at it.

We have somewhat of a routine when we get to the hospital. It might be funny/interesting to watch Jeannie and I when we first get to our room. Nurses are trying to ask us questions, while we're scurrying around trying to make this hospital room a home for 2-3 days.

• I always put our family picture on the wall plate outside our room. Don't know that makes much of a difference, but I'm hoping that all of the staff who come into our room for Sophie will get a glimpse into the human side of her, not necessarily just the clinical or seeing her as just another patient.
• Jeannie unpacks the clothes, blankets, changes the pillowcase to Soph's pink one.
• I pull out the iPad, both laptops, chargers and find optimal spots for all.
• We wipe down commonly used surfaces one more time.
• Soph refuses to sit/lay in bed until bedtime, and takes her preferred place on the recliner. (Don't worry, Jeannie takes full advantage of the adjustable bed)

Of course we'd rather not be here, but since we need to be, we make it as homey and comfortable as we can.

A little hiccup this time around. I completely forgot to call ahead to RM House to reserve a room. I called yesterday afternoon in a panic, but was crestfallen to hear they had a waiting list. So unfortunately Selah didn't come downtown with us, and both of us will sleep in the hospital room. It's a bummer bc seeing Selah brightens all of our days, and it's nice for either Jeannie or I to get a decent night's rest at the RM House. The thought of spending 2 nights at the hospital was not fun, but we were surprised to find out that we will most likely go home tomorrow night! Originally, we thought this 3rd cycle would keep us for 2 nights, so it's a pleasant surprise.

In the other critical news, the MRI came back clean! Soph had been complaining of headaches & neck pain in the past week, so before Monday's MRI, we had painful flashbacks to Dec and a serious case of "scanxiety." But all is well for now, and we are thankful & relieved.

This is a new drug with this cycle, so we'll have to see how it goes, but so far so good. The bigger effects/fears of low blood counts usually happen 7-10 days after.

Thanks for all of your continued prayers. We are learning these days what it means to have faith in the person of Jesus, as opposed to a desired outcome. When you have faith in a person, the result is not as primary. We are not quite there get, as our hearts so desire complete healing & remission, but we know there is a truth that God wants us to learn about having faith in Him vs. a desired outcome.

Good night everyone.

Trying on mom's necklace

Doing some painting on the 17 North playroom.

26 Saturdays

26 Saturdays ago, on Dec 1, we got the worst news of our lives.

It's hard to imagine what life was like before then. One could definitely make the case that it was "better." We were a "normal" family living a "normal" life in the suburbs. Nothing special, nothing crazy.

Now, our life is full of monthly hospital visits for chemo, nightly TPN infusions, every 3-4 hr trips to the bathroom, germ/fever fear, low blood counts = hospital visits for transfusions, and the tri-monthly MRIs, the ultimate check to see if this monster has come back.

We do get a taste of normal here and there; Below is a pic from this morning's trip to Taste of Wheaton, where Soph loved the big slide, and the ferris wheel.

These are the memories that I want to continue to create, and hold on to. The squeals of joy when we go down a slide. Never mind the fact that it cost us $2.50, or that somehow we spend $24 on really greasy, really bad cheese fries, miniscule corn dog & hot dog, and artificial lemonade. (ouch, how did that happen?) Life is short. Hopefully not too short, but we have learned to live this way.

Next week is chemo cycle #3 of 9. It's regimen B, which is the first time we've seen this one. Chemotherapy cyclophosphamide will be the main cocktail this time, along with vincristine, which we've seen regularly. A quick glance at its wikipedia page states, "Cyclophosphamide is itself carcinogenic." sigh. There's that double-edged sword again. What can we do but trust the doctors, trust the treatments, and pray.

Others who have traveled this same journey speak of the cumulative effect of chemo, how it adds up, and gets more difficult to endure as you go along, more frequent blood transfusions. We do not look forward to these, but will take it as it comes. Soph has still been great thru all this, and though a lot of her positive attitude and disposition can be tied to childhood innocence and not knowing any better, there's something about this girl's strength, determination, and positivity that defies logic and cannot be easily explained.

26 Saturdays from now, we'll have a new member of the family that we'll be welcoming, and we'll be very eager to finish the final 2 cycles of treatment. Life will again be dramatically different, and we are looking forward to see what it will bring.

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.