Shh...we're talking about finances

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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.

3 down, 6 to go

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

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

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

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

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

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

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

http://www.facebook.com/feistyfightersophie

3rd cycle underway

Back at it.

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

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

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

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

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

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

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

Good night everyone.

Trying on mom's necklace

Doing some painting on the 17 North playroom.