Friday, November 29, 2013

D-Day

Some recent pics:

Wrapped in toilet paper during kindergarten Halloween party
Holding Josiah, new baby brother
Getting ready for school!
Filling Josiah in on the details of how to get what you want from Dad.

Teaching Josiah the pledge of allegiance.
selfie


Trying to will Michigan to a miracle win.
side-busting

With Thanksgiving being so late, family in town, birthday parties, Black Friday, we are almost upon a very important day in our family's life.

We are coming up close to D-Day, or diagnosis day on Dec. 1. It's one of those seminal moments in life, right up there with wedding anniversaries, birthdays, day of salvation, etc. Remember with us that month of Dec with all the shock, fear, sadness, hope.

Neither Jeannie nor I will ever forget the details of that day. It was a Saturday, with unseasonably mild weather. I remember picking up Chick-fil-a for breakfast for the girls that morning. Soph had been sick for the past few weeks, but still had her appetite, and I thought that feeding her CFA and forcing her to rest would help her finally kick this flu. I wasn't too worried though, b/c Jeannie had taken Soph to the pediatrician, who examined her, even took labs, and everything came back fine. Watching Monsters Inside Me had raised my level of paranoia that she might have some sort of exotic bug, but with the blood work, my fears were temporarily eased. I also remember taking advantage of the weather to put up Christmas lights that Soph had been requesting for a few weeks.

Jeannie had previously made plans to go out with some girlfriends for dinner, so I remember playing with the girls, and getting ready to take them up for bath and bed early, since Soph was still sick. But I distinctly remember looking at her lying on the rug, miserable, and something just wasn't right. I texted Jeannie and asked her to come home, b/c I thought we should take her to the ER for more tests, or something. Something just wasn't right with Soph. She came back and took Soph to the ER, while I put Seah down for the night. After a few hours, the texts from Jeannie seemed a bit more serious, and I against my best judgment, left Seah sleeping, and went to CDH. After waiting 15 mins, the nurse came in with the look. You know, the look that makes you think that they have the wrong room, the white, ashen face, about to deliver the worst news anyone could imagine, that look. On the CT scan was a 5cm tumor in the back of her brain.

Off set a whirlwind of disbelief, as Jeannie & Soph were whisked away in an ambulance downtown, while I went home to wait for my mother-in-law to come house-sit. I won't forget that long drive alone downtown at 12:30am on Sat night, wondering what would happen to my lovely daughter. After more grave looks from the Lurie ER, and neurosurgeon resident on-call, it was determined that Soph would emergency surgery first thing on Sunday morning at 9am. You can read more about the rest of that first week in the archives, where neither Jeannie nor I got any sleep for 3 days. I lost about 5 lbs in that first week b/c I could not keep any food in or down, nor could I sleep. It was the worst period of our lives. 18 days in the hospital, not knowing what to expect or what the next day would bring.

As I think back, what a long, difficult, tiring, hopeful road it's been, this past year. From the 6 weeks of double-edged radiation treatments in Jan-Feb, to the 7 cycles (so far) of chemo starting in Mar, the weekly clinic visits, to the fever-caused unplanned visits, to the new world of home health and port care, to the non-eating and TPN, we have been thru a lot. It's sort of culminating now with Josiah's arrival, and seeing/nearing the last 2 cycles. It's almost surreal. I can't even imagine Soph with any hair. Looking back, she seems like such a different girl. But she's still the same feisty, smiley, sharp, beautiful daughter that I adore, just a bit more battle-tested.

As we reflect back on the past year, we could not have made it without all of you who read this. You have given us money, gift cards, food, listening ears, hugs, "likes", comments, messages, emails, texts, cards, calls, prayers. All have encouraged us, strengthened us, and carried us through the darkest days. You have no idea. Thank you.

The road is not yet over. We still have 2 more cycles to go (one this upcoming week, then Jan 14-15, the dreaded 'B' cycle), plus all of the clinic visits, fever trips in between. She'll have to be weaned off TPN, and the port will most likely stay in until the May 2014 MRI.

But we have hope. God has brought us this far, and we are cautiously hopeful for the days to come. Have mercy on us, Lord, and see us through the end of this season of life.

Tuesday, October 22, 2013

You are not alone

Dear friends,

Please keep our new friends, Mike & Anne Won and their 4-yr old daughter Ella Joy in your prayers. 3 weeks ago, Ella Joy was diagnosed with stage 4 non-Hodgkins lymphoma. It is heart-breaking to hear of another beautiful little girl afflicted with cancer. She has started treatment here at Lurie, and they have a long road ahead of them.

I did not know Mike & Anne personally, but within the Asian-Christian community, there are about 0.5 degrees of separation between most people. Jeannie knew Mike from growing up, and the 3 of them intersected at some points at U of I. Unbeknownst to us, they had been attending a community group at our church, Harvest, and very recently decided to attend regularly. When word of the shocking diagnosis got to us 3 weeks ago, some mutual friends connected our families, and we reached out. It's amazing to see how powerful a shared experience can be. It was as if we skipped over all the small talk, the typical questions of what do you do for a living, how are your kids, what's your story, etc, and there were instant hugs & tears of mutual understanding. Such a powerful connection. We visited for dinner to talk, get to know each other and ask some of those questions that we skipped the first time around. By the time we left, after 3+ hours, I felt like they were family.

I am positively sure that these past 3 weeks for them have been a roller coaster of emotions. I am sure, b/c we went thru the same ride earlier. There are differences of course, Soph had an immediate need for treatment with surgery and 18 days in the hospital, whereas Ella Joy had some time to decide upon the best course of treatment. 

Regardless, I am thankful that God has brought our families together, if only to remind each other that, you are not alone. This road can be awfully lonely. So many friends and family have supported us, helped us, propped us up, prayed for us, but at the end of the day, when we drive home from church or outings or events, it's a lonely place for Jeannie & I, and there are not many of can truly relate to what we are going through. I hope we can be ones who not only support, pray for, and encourage the Wons, but give them some sense of community, even in the midst of this unimaginable pain, heartache, and despair.

Please keep them in your thoughts and prayers. Read their story & follow their journey on their blog, http://annewon1.wordpress.com/. As they get their feet under them, I am sure there will be opportunities to support them financially, with meals, other favors etc. As I learn of them, I will pass along to all of you.

Blessings.

Wednesday, September 25, 2013

Shh...we're talking about finances

**Don't forget to "like" our facebook page, for more updates, pics.

I've been debating on writing about this for a while. Most people don't discuss their finances, on any level, anywhere. It's one of those taboo subjects, but everyone always wonders about how everyone else is doing financially, right? Don't get me wrong, I'm just like everyone else too and keep this stuff close to vest , but I also like be somewhat transparent in our situation, well, maybe more like translucent.

Anyways, if I were on the outside, and my daughter wasn't the one with a malignant brain tumor, I would wonder how the family would be doing financially. Do the health care costs bankrupt them? Does insurance cover everything? What extra costs do they incur? How expensive is this stuff? Maybe you wonder, maybe you don't, but I thought I'd shed a bit of light here.

Even on the FB support group for parents of children with medulloblastoma, there is little mention of finances, mostly just about treatments, emotions, progress, recurrence, etc, which is more important than money. In the back of my mind, I wonder how everyone else deals with the financial part of all this. Do they have regular fundraisers? Does their insurance cover like ours?

First, many of you have been so very generous to us, whether it was a direct checks to us, donations or meals via mealtrain, sending gifts, amazon/costco/target gift cards, etc. It has been extremely humbling for us to receive and please know that is has been very helpful. Thank you.

So you know how when you elect benefits for the following year, and you try to predict how much you'll use of your medical benefits next year? Maybe you're thinking of having a baby, or a non-urgent procedure that you can plan for, or something else? You wonder how much to put in your flex spending, b/c you have to use it or lose it! HSAs, you don't lose it per se, but you don't want to put too much aside either. Yes, well for us, we don't really have to plan or wonder about that anymore. We elect the max in HSA or flex spending, b/c we will use it all. As you might expect, we hit our deductible very quickly, and our out-of-pocket max is not far behind, usually all within the first month of the benefit year.

Specifically, family out-of-pocket max of $6,000 for 2012 was hit very quickly last Dec, as you can imagine, with 18 days in-patient at the hospital. The counter reset on Jan 1, and with daily visits for proton radiation, 2013's $6,000 came within that first month as well. That's $12,000 that we had to pay in a relatively short time period. Fortunately with the gifts, donations, and family help, it was not as overwhelming as one would have thought.

The middle of the year brought some unexpected windfall in the form of a higher-than-expected bonus from work, and a new job that brought a higher income. Along with that new job, our benefits did reset, but with some careful planning, it has not been an issue. The new job also brought a slightly lower out-of-pocket max, with a different nuance of individual family members having their own out-of-pocket max ($1800/each), and only being able to contribute partially to a higher family out-of-pocket max ($3600). Soph did her part for sure, now it's Jeannie and baby brother's turn (on his way, yikes!)

Ongoing, we've incurred a few extra costs. We go downtown a lot more these days, so our gas usage has increased, along with parking costs, eating out, etc. We probably end up spoiling Soph a bit more ($20 Disney on Ice spinning toy?!?!?!), but how can you say no to a 5-yr old girl who's been through all of this in the past 10 months?

All that to say, we are doing ok, financially. We'll see what happens with baby brother coming, but he (hopefully) won't cost us too much. Boys are cheaper than girls, right? We budget via mint.com, but are not super-stringent. I do still take pride in my money-saving ways, clip Target coupons (store, manufacturer, cartwheel!, etc), use/buy/resell gift cards, resell our junk on ebay/craigslist, maximize cashback, take advantage of some credit card arbitrage (not like the good 'ole days, though)

The last thing I'd like to leave you with...for now, we don't need extra donations, but if you feel compelled to give, have a few bucks to spare, or are looking for a reputable place to reduce your taxable income, here are 2 places that we really believe in. There are a gazillion organizations out there that solicit your $$ for good causes, some probably more effective than others, and I have no idea which one is the best/most effective. But these 2 have impacted our life directly, so please consider giving here, if you do give.
  • Ann & Robert H. Lurie Children's Hospital - we have mixed emotions with this place (b/c this is the site of some of our darkest days), but bordering/shifting to the better mix, since the people here care for our Sophie. Plus Bob Lurie is a Michigan grad. Wherever you go, Go Blue! Besides money, they take toy & gift donations, so get creative!
  • Ronald McDonald House near Lurie Children's - cannot say enough about this place. When we were here for 18 days last Dec, RM House was our home. A warm shower, hot meal, the ability to be together as a family, and timely hospitality were given to us in our lowest moments, and we are indebted to this place for that. Don't just click to send $$, but organize a group from church, work, neighborhood to sign up to provide a meal. Prep, cook, clean, and meet some of the families who could use encouragement, a hug, or just a good meal, outside of hospital food.

Tuesday, September 3, 2013

Kindergarten!

First day of kindergarten!
So school has started. Today was only Soph's 3rd time at kindergarten. She's on a Mon-Thurs schedule to start with, anticipating fatigue, and we kept her out most of last week (except Thurs) b/c her counts were low. She went today, even though her ANC is low, but it seems to be on the upswing (83 last Thurs, 95 on Mon). Speaking of low counts, we might avoid an unplanned hospital visit this cycle for the first time in 2-3 months (no fevers yet, and ANC is hopefully increasing) *knock on wood*

Soph's kindergarten start wasn't necessarily what we had imagined if you had asked us a year ago, with multiple meetings with support services like psychologist, social worker, OT/PT, speech, nurse, all culminating in an IEP meeting tomorrow. Part of me sees her every day, her drive, curiosity, memory, and aptitude for learning, and I want to just tell everyone that she's normal, that she just wants to fit in and not be treated special. On the other hand, I am thankful that there are services available for us to help her be successful. I'm hopeful for her to love school, and make great strides this year.

It's been 10 months since the diagnosis last Dec 1, and it's becoming harder to remember what life was like before cancer. Always being extra aware/cautious of Soph walking around, where she's going, what germs she might get. Getting so excited when she takes bites of food, and keeps it down. Waking up 3-4 times each night, not just to carry her TPN bag to help her go potty, but now to administer anti-nausea meds thru her port. This is our life. I'm not bitter, really, more just wishing, wanting to get thru this. I barely recognize what Soph looked like with hair, and some meat on her bones.

I know that getting to the 9th cycle of chemo doesn't mean this is over. The periodic MRIs are a nerve-wracking reminder that it's never over. We still also have to deal with the unknown late effects of radiation, which really just deflates me. Wean her off TPN, get her back on food, get her weight back, work on her coordination. All of these things I am looking forward to, but know it's going to be hard work all the way thru. On top of this, we'll have baby brother inserting himself in the middle of this. I have no idea how we're going to get thru this. Nov 1 is the due date, and we are getting closer and closer. How will we handle unplanned hospital visits, stress with my job, trying to have a "normal" 3-yr old life for Selah, and taking care of a newborn....it's all very scary.

Sept is Childhood Cancer Awareness Month. I sometimes get callous to all of the awareness months, like Asian Awareness, and every illness/disorder that has its own month. Obviously this one hits home for us, since we are very aware of childhood cancer. If you follow our facebook page (www.facebook.com/feistyfightersophie), you would have seen a link for a local charity called Aidan's Army, who are highlighting stories of childhood cancer each day this month. Like it, follow it, read it, and remember that there are families like us that live on the edge of those "worst nightmares." The one for today, Max's Story, really will crush your heart. It is the proverbial every parent's worst nightmare to lose a child, and it's heart-wrenching. No other way to describe it. I am at a place now with Soph, where I refuse to think or consider that worst nightmare, even though I know it's a possibility. Still more work to be done in my heart to "release" my lovely daughter to God's will, whatever that will might be.

Chemo #6 is later this month, 9/24-26. This one will be regimen B, again, with cyclophosphamide (cytoxan), which really threw us for a loop last time around in June. It cleared out the rest of the peach fuzz hair, dropped her ANC to near 0, and she had a fever for about 4 days, which resulted in an unplanned hospital visit. It was not fun. So we are not looking forward to this one. But it's one more step closer to finishing treatment.

Monday, August 5, 2013

Time's ticking

It's been a quiet, uneventful past few weeks for us in terms of treatment. Soph's counts are up, she eats a few grains of rice here and there. We have one week til our 5th cycle of chemo, next Tues/Weds. Then it's being on edge for another 2-3 weeks afterwards for low counts, warding off fever, possibly transfusions, all while trying to get her started in kindergarten on the 22nd!

So with the impending arrival of the 5th member of our family, it's been worrying me a lot these days.

Definitely was not intentionally planned, but don't most people say that? We are bit (a lot!) nervous, given our present circumstances, but I keep thinking of the 1 Corinthians verse where God will not give you more than you can bear. Granted that verse is in the context of temptation, but temptation can also mean trials/testing. I don't know what life will be like with Sophie's treatments and a newborn, but we have no choice but to trust in God and rely on Him for help. It will be especially daunting as Soph's 7th treatment will be right before the due date, and treatment 8 will be when the baby is 1 month old. Though Soph and I are buds, she definitely prefers mom when the going gets rough.

Also, what will we do with the unplanned trips to the hospital? Jeannie has been doing the heavy lifting with those trips, arranging for care for Seah, while I've been tied up at work, or been traveling. I won't be traveling around that time, but I worry about being able to get out of work. They've been completely understanding at the new company, but it still being a new job, I'm hesitant these days to ask for too much flexibility.

Even these days, I just want to fast forward 6-8 months. Soph's chemo will be done. We are not naive to think that everything will be ok then. It will take time for her to wean off TPN, get some strength, gain some weight (hopefully!), and try to adjust to a non-chemo schedule. A big part of me is hoping that everything will be the way it was before, but I know that's not the case, and she will likely continue to have some challenges, some we will not expect.

Thank you all for your continual prayers, your help, your thoughts, etc. It's a long road.


Tuesday, July 2, 2013

Trusting in the person of God

Spiritually, the journey hasn't been quite as impactful as I would have hoped it to be. But we keep going, and see small windows of how God speaks to us and wants to shape us thru this.

Another message from Dr. Steve (beginning to see a pattern here) from a few weeks ago, hit home again. Dr. Steve references Luke 7:1-10, the story of the centurion's faith, and how Jesus was amazed at this great faith. I'm not going to pretend I remember all the key points, but what resonated with me was his illustration of how one of his daughters had a potentially serious heart defect shortly after she was born. He described receiving the news from the doctors, and the intense, never-before-experienced desire to want to see her be ok. But he had no control over this, he could do nothing about it.

Have you ever wanted something so badly, but had no power to do anything about it?

Have we ever bargained with God, or used spiritual merit as justification for comfort, ease of life? Do we feel entitled to a "good" life?

Have you ever prayed for something so hard, so much, but it didn't happen? Have you chalked it up to, "I need more faith?"

Romans 3 says:
11 “There is no one righteous, not even one; there is no one who understands; there is no one who seeks God. 12 All have turned away, they have together become worthless; there is no one who does good, not even one.
We have no leg to stand on when it comes to using any sort of merit to justify mercy.

The centurion puts his faith in Jesus, the person, not in any ritual, his own merit, but his confidence was in who Jesus was. Dr. Steve says faith isn't a code to crack, or a complex formula that we need to follow, or just really powerful positive thinking, but the confidence/faith in our prayers should be solely and only in God's sovereignty and His desire for what's best for us. It may not be the outcome we desire, but we need to trust that what He gives us is for our own good.

Wow, well this describes our situation  What we want so desperately is for complete healing and cure for Soph. We have no control over this; we've spent hours bargaining with God, promising that we'll turn to Him, asking, begging for mercy, but we may be missing the point, to some degree. God wants us to understand who He is, what His heart is, to believe that He is a loving God, who wants good for us, whether we think it's good or not.

We are not there. It is so difficult for us to release our precious daughter and put her completely in God's hands. I am so so afraid of a 'God asking Abraham to sacrifice his son Isaac' moment. I do not have the faith to be able to obey anything resembling that. I cannot help but to weep helplessly at night thinking of what life would be like if this cancer relapses and we lose her.

Would I still believe that God is good? Can I believe, thru the worst nightmare that I can imagine, that God is still working for our good? I don't know...

Lord, we don't have to be exactly like the centurion, or like Abraham, but help us understand what it means to have faith and trust in who You are, not in a desired outcome. Help us get there. Shape our small faith.

Thursday, June 27, 2013

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.


Thursday, June 13, 2013

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

Tuesday, June 4, 2013

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.

Saturday, June 1, 2013

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.

Sunday, May 19, 2013

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.

Wednesday, May 15, 2013

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.

Friday, May 3, 2013

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.

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.

Thursday, March 21, 2013

what not to say...

We've had a lot of conversations over the past 3 months since this night mare began. So many caring people have reached out to support us, and all of you have literally kept us alive with food, money, love.

There are a few things that we have come to realize in those many conversations, and it's hard to really explain in person. We find ourselves often holding back, or not giving the full story sometimes, not because we don't want to, but because we have to consider our audience. We know it's hard to find words to say to us, and sometimes there's nothing that can be said.

Jeannie came across a blog of a parent who lost her daughter to a brain tumor, and she posted a few useful/insightful posts that resonated with us. One of them is titled "What Not to Say to Bereaved Parents." Granted it's more geared towards the loss of a child vs. still having a child, but I've taken her list, and put some of my own thoughts/modifications:
  • "My mom/dad/sister/cousin/aunt/friend had cancer..."
    • Yes, cancer is age-indiscriminant and it's terrible for anyone, but there something about a 4-yr old having cancer that makes it seem worse than say, someone who's closer to the end of a long life with a cancer diagnosis. While we don't wish cancer on anyone, it's just different when it's your own child who's 4. Also, there are too many different types of cancers out there, and while all of them are devastating, brain cancer in a still-developing child has got to be one of the more jarring types/incidents. It's just not the same, and relating a story of an adult you know who has cancer doesn't particularly help us.
  • "Let me know if there's anything we can do..."
    • Most of the time, we don't know what we need, or what you can do for us. The 2 ways we have thought of, bringing/sending us meals, and donating money, are the 2 that are always available. If you can think of something, ask us, and we'll let you know. But honestly, even more than meals and money, right now, I think we crave friendship, listening ears, and fellowship. Set up some time with us, come over or we'll head over, and let's just be friends.
  • "I can't imagine what you're going through..."
    • Neither can we. At this point, sympathy is something we know everyone feels for us, but in and of itself, it doesn't really do much.
  • "You guys are so strong..."
    • We are not strong at all. We have no choice in this matter but to move forward. It's what every parent would do in our situation. Thank you for the encouragement, but we are no more special than any other parent who loves their child.
  • "Happy Holidays/Christmas/New Years/Birthday"
    • Again, it's not as much of an issue, but in general, our life is not as much about the weekends/holidays/vacations, as it is about Soph's next set of appointments and how she's feeling. Those will mostly be our milestones for the next year or so. But we will try to make birthday celebrations, Christmas as special as possible for the girls.
  • "It will get better..."
    • How do you know? It could get worse. What if Soph has recurrence? What if the chemo has a stronger side effect? I get the "let's have a positive attitude," but it's not easy.
  • "You guys (Soph) look great..."
    • We might look the part, but looks can be deceiving, and usually cover up the turmoil inside.
I don't want this list to discourage anyone from saying anything, that's not the point. It's just a glimpse into the impossible conversations we sometimes have in 2 minutes or less. We actually do need and want those conversations, interactions. It's almost like therapy for us. But we also know it's hard for people to know what to say or do. Just be our friends. Be there for us. Hug us. Cry with us. Celebrate with us. Talk to us.

Sunday, March 17, 2013

March madness

So my Wolverines flamed out in the BTT, but I'm still hoping for a 3 seed and favorable path to the Sweet 16!

So the first chemo has come, not sure it's gone, b/c the affects of it continue on. Soph was in very good spirits the time she was in the hospital. She kept busy with the iPad, DVDs, puzzles, etc. She didn't eat much, but had fluids in her the whole time. Jeannie and I were ok too. Selah stayed at RM house with my mom, and had a grand time eating and playing.

As suspected, the MRI came back NED (no evidence of disease). I asked our neuro-oncologist, Dr. Jason, which MRI should we be most worried about. It would seem to me that the first MRI post-radiation should be clear. And he confirmed, usually this first MRI is typically NED. He says 7-8 months down the line is the one where tumor signs would show up, if it were to recur. That takes us to about Nov/Dec of this year, when we pray/hope for NED.

The bigger issue in our household this past week/end, is that Jeannie and I are sick. I have the worst case of the flu that I can remember. 100+ fevers for 2.5 days. I barely left the bed yesterday, and I'm quarantined in the bedroom, so as not to get Sophie sick. Jeannie also has a cold of sorts, combined with brief case of food poisoning (we think). It's been a rough weekend for us. My theory is that it's from subconscious stress from the past week.

Soph is on TPN, which means she's hooked up to a nutrition bag overnight. It gives us peace of mind that we know that she's getting everything her body needs, albeit thru IV, not thru her gut. Jeannie and I have had to learn to administer, connect, clean her port and TPN. It's something you never thing you would have to do it, but here we are. Consequently she doesn't eat much during the day, except snacks and her anti-nausea meds thru juice.

The good news in all of this is that Sophie seems fine. She's been at home since Weds night, but doesn't seem to mind. She's in good spirits, and has been able to avoid sickness, so far. She's been smiley, happy for the most part. Selah is fine too. We thought she was getting a bit stir crazy, so we sent her off to church with friends this morning.

We'll have to go downtown again on Tuesday for her vincristine chemo push, b/c the hospital had some safety concerns with home health administering chemo. Otherwise we hope to kick this flu/cold out the door and move on.

Tuesday, March 12, 2013

1 day of chemo down!



Today was our first day of chemo. Here was the rough schedule:
  • Left around 7:45am, 30 mins later than we wanted to, and we paid the price with a 1.5 hr commute downtown. Originally wanted to get to Lurie by 8:30, but got here more like 9:15.
  • 9:15am - Audiology appt first thing, to establish a baseline b/c cisplatin will most likely affect her high-frequency hearing.
  • 10:30am - Clinic visit with our neuro-oncologist and APN, to discuss how she's doing, what to expect, etc.
  • 12:30pm - Move to the 17th floor to our room, where we'd be for the rest of our stay.
  • 1:30pm - Start the pentamidine (pneumonia vaccine) for 2 hrs
  • 4:30pm - Get her hydrated in prep for cisplatin/lomustin/vincristine
  • 5:30pm - Administer the chemo cocktail. Cisplatin is infused over 6 hrs, so she's still on it.
Overall, not a bad day. It went by somewhat quickly, and Soph was in good spirits for most of the day. She ate ok, not great, and was generally pretty agreeable to everything today. Much different than our 18-day stay back in Dec. The iPad kept her company, as did some sticker books, and her little sister who came between 4-6:30. Thank you all for your prayers, I'm pretty convinced they made a difference.

Tonight might be rough though. They have to monitor her urine very closely b/c that darn cisplatin also could negatively affect her kidneys. I found it ironic that they kept saying we have to flush the cisplatin out, but I was thinking, then why are we putting it in her? It's to get it to do its job, which is to kill rapidly dividing cells, like any cancer cells, but try to get it to avoid good rapidly dividing cells. They do not have a good answer for that, which explains things like hair loss, lower white blood cell count (all rapidly dividing cells).

Tomorrow is mostly a monitor/hydrate day. We do not anticipate she will have much of an appetite. In fact, we've made the decision to put her on TPN (total parenteral nutrition), which will give her everything she needs thru her port. This will be 12 hrs/day, given at night. Means she will be hooked up to a pump overnight . Getting her to eat has been the single biggest daily/hourly/minute challenge, and this will give all of us a break of sorts.

We hope to be discharged late in the afternoon. Soph has been asking about RM House from back in Dec, so we will try to get her over there after discharge so she can check it out and play a bit. We'll probably be home early-mid evening, assuming no complications/delays.

Thursday, March 7, 2013

Looming

Looming. That's a good word to describe what's to come next week.

On Monday, March 11, we'll go downtown for a full brain and spinal MRI, which will check to see if there's any sign of cancer cells. This is where we cross fingers and pray that for NED (no evidence of disease). It's what keeps many parents on edge. Hopefully we'll get back in time for the Chick-fil-a for the Cho's event at the Wheaton CFA. Please come anytime between 5-8, eat dinner there. Proceeds from the event will go towards our medical costs.

Then on Tues, March 12, Soph will be admitted to Lurie Children's for 2 days for her first maintenance cycle of chemo. She'll receive Regimen A of the lomustine and cisplatin over 6 hrs that first day. Tuesday will be a long day, and Soph will get restless for sure, being confined to her bed and connected to an IV.

Hopefully we can get discharged on Wednesday, if everything goes as planned. She also has a hearing test on Tuesday (as one of cisplatin's side effects includes loss of high-frequency hearing), and a dose of pentamidine (pneumonia vaccine).

Selah will join us downtown and stay at the Ronald McDonald house on Tuesday with me and my mom, who'll come to help. We think Selah being around will be a positive influence with Soph, and us too. I remember back in Dec, how the youngest and most naive of us Cho's, was able to lift our spirits with her warm, happy personality. (She's the nicest one in our family, btw)

Please pray that there will be no complications, for Soph to not get too annoyed/mad/restless, and for us to trust that God wants the best for Soph.

These past 3.5 weeks or so of no treatment, no hospital visits has flown by. Life feels somewhat normal, with work for me, Soph back in school full-time (she didn't want to just stay for an hour!), but it's not normal.

People ask us all the time how we are doing. Mostly out of habit; most conversations respond with a "fine" and everyone moves on. We are not really fine, but sometimes we say fine, to spare the other parties of the difficult realities of our situation.

Cancer is one of those things that doesn't go away with time. You could be sick, with a cold, or maybe something more serious, like mono, break a bone, and most of those things get better with time. Cancer doesn't. One could argue that with chemo/radiation treatment, it does get better by killing those cancer cells, but the terrible side effects from those treatments always leave a cloud above your life.

We have still yet to fully accept our reality, and try to move on with completely positive attitudes. It's not easy, but we know there is power there that can help Soph, and for sure help us.


Sunday, March 3, 2013

Chick-fil-a for the Cho's on 3/11

From Sophie's end of radiation celebration on 2/12/13
Our good friend Samantha has setup a Chick-fil-a for the Cho's night at the Wheaton Chick-fil-a. If you plan to eat dinner on Monday, March 11, and are within reasonable driving distance to the Wheaton area, please come and EAT MOR CHIKIN from 5pm-8pm. Soph has an MRI scheduled for that day, but hopes to stop by and grab some nuggets. I might try to be there for a bit separately; it will depend on the schedule, which we'll find out later this week.

Wheaton Chick-fil-a
301 East Loop Road
Wheaton, IL 60189
630-668-8350

Here's the message from the facebook event:

Who loves Chick-Fil-A?!?!?!?!

In honor of sweet Sophie, Chick-Fil-A is hosting a Spirit Night on
Monday, March 11th 5-8PM in Wheaton (by Whole Foods).

4 year old Sophie was diagnosed with medulloblastoma (pediatric brain cancer) and she's tackling this ugly thing like one tough cookie.
Let's rally together in support for Sophie & family and show this cancer what she's made of!

**Bring your families & EAT MOR CHIKIN on this special night to cheer our Sophie on!!**

A percentage of sales from this event will be presented to the Cho Family.
PLEASE MENTION SOPHIE when ordering.

A $1 Spinning Wheel (everyone wins) will also be set up to win free Chick-Fil-A YUMMIES! All proceeds from Spinning Wheel go to the Cho's!

LET'S PACK THIS PLACE!!!


~Please SHARE & pass along to friends, neighbors, co-workers in this community!!!

For More Information on our Sophie:
http://feistyfighter.blogspot.com/p/about-sophie.html

Wednesday, February 27, 2013

I Miss Her



I dream about her. Her beautiful hair flying in all directions as she runs. Her bright smile beaming at me and her sister. Her legs carrying her as fast as they allow. There's no shakiness, weakness, nor uncertainty. She's just free.

I miss her. I miss her shouting, "Mommy, higher!" on the swings and running circles around me. I miss her volunteering to get things with ease. I miss hugging her without fear of hurting her. I miss her pulling Selah in the wagon. I miss how busy she was all day long. I miss her running ahead and waiting for me. I long for her contagious giggles because she knows she can't be caught by anyone. This confidence and fearlessness I miss. These days, I can't get over the fact that it'll be a long time before she is back to this girl. Every playground is a reminder of what was, as are kids running at church and school and the grocery store and the library and the mall and...

It's become a tradition for Big S and Little S to sing and dance for me on a self-made stage at every playground we visited. I must have the same song recorded a dozen times at different places with different outfits. My girl is so happy and carefree in these videos. What I wouldn't give to have that back. I know I can't trade places with her, but I would. I would give my arms, legs, eyes, anything to have my daughter be free of this cancer. As a parent, some basic principles are that you want your kids to be healthy, happy, normal. I want her to be healthy, but now we have to worry for the rest of her life whether the cancer will come back and what side effects will surface from the treatments--and there will be many. Is she happy? I don't know. She's become more emotional and easily upset and frustrated. Normal? I don't even have to see people staring at her, I feel it. Everywhere we go. I just want to scream she has cancer, she is NOT a freak. 

From the beginning, I enforced a rule that no one is allowed to cry in front of Sophie. She is not to think that she did something wrong and I don't want her upset seeing others cry. But I've broken that rule a couple times now and it's harder not to do so. Each time she lays her hand on me and I know she understands why I'm crying. Last week, I kept telling her that I'm so sorry she has to go through this, I'm sorry that she has all these owwies in her body as I rocked her in my lap. But she's getting medicine to get rid of everything and we are praying that she feels better soon. I tell her everyone is praying for her and I list the people by name. Because that helps me too. To know we are not alone in this fight and that people do care and love our family.

Jason and I know we have to adjust our expectations for what kind of life Sophie will have in the future. Learning disabilities, hearing loss, attention issues, endocrine issues, obesity, special education classes, etc. are all real possibilities for her after this year is over. There's something like 27 "later effects" as well. People keep telling me that it's our "new normal." I just want to say, I love Oprah, but this phrase is such a disservice to families who suffer. This is definitely a new situation and direction that we have to go through, but never is it going to be normal. It's not normal that a 4 year old girl has cancer and has to undergo radiation and chemo treatments. It's not normal that the same girl loses weight and doesn't want to eat. And it's not normal that she loses her hair in 2 days and then has to hear comments about it from others. She's no longer running and walking or chasing her sister like before. Again, the norm is none of those things.

A friend emailed a parent's job description recently based on a book called Grace-Based Parenting. According to the author, it's not the parent's job just to clothe, nurture a child, or make them happy, secure, successful, athletic, popular, or the like. But for those parents who love the Lord, it's to teach them how to love Jesus and to love and help people. I agree with these points. Sophie's character, her true worth, will not come from what this cancer is doing to her body. It will come from what Jesus says--He is with her, she is made in His image, He will never leave her or forsake her, He protects her, He loves her, nothing can separate her from His love. Nothing.

Monday, February 25, 2013

Alternate treatments

One hot topic these days for us is alternate treatments. Everyone from family, friends, other acquaintances are giving us lots of different ideas on homeopathic methods, supplements, and whatever else is out there they have heard from friends, friends of friends, infomercials, internet articles, etc.

Our current treatment plan, ACNS0331, is one of the standard treatments in the US to treat standard-risk medulloblastoma, with a combination of surgery, radiation therapy & chemotherapy drugs. We also know that both radiation & chemotherapy has long-term, significant side effects, that are very difficult to think about. I'm stating the obvious here, but cancer isn't one of those ailments that one can "heal" from or even cure. Sophie is undergoing these terrible treatments, (it's still gets us that the warnings for the chemo drugs sound so dire, so hazardous, yet it's going into her little body) to kill the cancer cells, but the effects of these things are so deflating to think about. I so wish there was another way.

 There are so many different things out there that people swear by. CoQ10 (my dad), Vitamin D, antineoplastons (Burzynski), organic food, vegan, juicing. ok fine, so some things are legit, but part of me can't help but to think that some of these things are just a product of people overthinking, and/or opportunistic entrepreneurs preying on people's fears.

It's tough, of course we want to do the absolute best for Sophie, and reduce toxicity as much as possible. But we don't have the energy or time to explore every single option or treatment out there either. This is why we more or less trust our doctors. It's a balance, we can't always just take their word for it, and we need to be Sophie's strongest advocates. Also we know that people's suggestions most always come from genuine concern and good intentions. I read a lot about other parents of kids with medulloblastoma and they seem to spend hours on hours doing research into supplements, causes, cures, ideas, everything. Sometimes I feel bad b/c I don't have the desire to do all of that, perhaps due to laziness, partially due to the fact that I don't want to know more about this terrible disease than what I already know. Maybe we put too much faith in our doctors. Maybe there will be a time in the future when I dig deep into what's out there, and aggressively seek information and/or changes to Sophie's standard treatment.

Back to some of these alternatives...my thought with most of these is that if these alternate treatments were that effective, wouldn't they be more mainstream? And wouldn't the effectiveness be proven in randomized, placebo-controlled, double-blind, clinical trials? Sure it seems like the time to bring a drug or treatment to market is years, not months, and there are many hurdles. But isn't that the way it should be? If we don't have a cure for cancer, why would we want to mess with treatments or drugs that are unproven? For sure, I would not want to "experiment" with any drugs for Sophie, even if there's a promise that it might reduce toxicity or pain. A few anecdotal stories on how this or that worked wonders for someone is not enough for me to believe it's a cancer killer.

So those legit things like organic food, juicing are ideas that cannot hurt, but other supplements or drugs are a bit more unknown, and most likely things that we will stay away from.

Your opinions are always welcome. We know everyone has good intentions in all of this. Please understand that it can be quite overwhelming for us, and hopefully this will give you a peek into our thoughts. Please continue to email us, message us, tell us what you think.

Monday, February 18, 2013

Exhaling

So we are entering our period of "rest." No treatment or hospital visits until March, 3/11 to be exact.

Sophie is very happy to be "tubey"-free. She's still not eating a ton, but she is eating. We are trying to fatten her up before chemo starts. Her constipation is minimal these days, and she is generally in good spirits, except the occasional (frequent) sister-on-sister battles that occur over the iPad, puzzle, books, etc.

We don't have a whole lot planned or going on until early March when chemo starts. Just want to take it easy, be normal, and enjoy our time as a family. Here are our next few milestones/events:

  • Wine Tasting/Food Pairing on 2/23: Still have about 30 spots remaining for the wine tasting event for this Saturday. It will be in the city, Creative Studio Space, 2939 W. Belmont. There is a facebook event page, but you will need to purchase a ticket thru this wepay link to confirm your attendance. It will be a fun outing with catered food, professional wine tasting, photobooth, and some info on Sophie and pediatric brain tumors. Sophie will not be there, but we'll have pictures, video, and some extended family there to represent us. If you cannot make it, there is also a spot for donations thru the wepay link. Use the occasion as a date night!
  • Family photo session on 2/23: The Gold Hope Project is a non-profit that provides portrait sessions for pediatric cancer patients and their families. Not quite sure how the session will go, but we're going to give it a shot, and hopefully capture some good photos.
  • MRI on 3/11: Sophie will get an MRI on Mon, 3/11 to check her brain & spine. We are hoping for the NED (no evidence of disease) news. The biggest ongoing fear is that the cancer will come back. This first MRI post-radiation is a big deal to ensure that the cancer has not returned, especially after the intense radiation treatment.
  • Course 1 of chemo on 3/12-13: We'll head downtown to be admitted for the 1.5 day stay at Lurie. Soph will get a cocktail of chemo drugs (lomustin, cisplatin, vincristine).
We are nervous for chemo. We survived radiation, but are afraid of the side effects of chemo and the toll it will take on Sophie. We know appetite will be suppressed, and she will probably not be in very good moods, but we are hoping for the best, as always.

Otherwise, we are trying to move forward. I keep thinking of the Kubler-Ross model, or the 5 stages of grief. I think I am still in denial, and Jeannie might be more in anger. Of course we have experienced the range of emotions, and every day is different in and of themselves. One day at a time is not just a cliche for us, but the only way.

Please continue to pray for Sophie, for us. For peace, hope, and for the cancer to never come back. 

We appreciate all of your emails, messages, facebook comments, texts, meals (both home-cooked and delivered), packages, cards, and financial help. We still have the meal train & donation site up, if you would like to help us in that way.

Tuesday, February 12, 2013

A good day

Today was a good day. One of the few really good days from the past 2.5 months. Not all of you are on facebook, and may not see as many pics, so here are a few from today. Feel free to find us on facebook and friend us, for more frequent updates.

Family photo with the cow at CFA.
Dear friends who have prayed for us, fed us, kept us upright. Thank you.
Girls having fun. So nice to see.
Selah having fun with Uncle Peter.
Soph showing some love to the CFA cow.
Coming out of her treatment session to balloons, cameras, lots of people!
More friends coming to support Soph. Thank you for loving our family.
from Target! Thanks Sam! You are the best!
Soph and her big girl friend Zoe!
Tickling her little sister.
Sign that Zoe and Jordan made. Thank you, guys.
Sophie's sticker chart. 31 stickers! Can't believe we got thru this. The chart seemed so daunting in the beginning.
Next to Sophie's handprint. All the kids put their handprint on the wall when they finish treatment.
Taking the opportunity to showcase Bel products!