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.

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.

Shh...we're talking about finances

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

https://www.facebook.com/feistyfightersophie

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.

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.

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.

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.

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.