Wednesday, September 25, 2013

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, 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


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'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 (, 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.