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Handling a Terminal Disease the FWF Way?

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2/22/13 9:56 AM
PREFACE - Please don't flame me!
First, let me say that I'm completely surprised that I couldn't find an existing thread for these questions. That makes me think that either (1) I'm not very good at searching, or (2) these questions are frowned upon for some reason. I'm trying to limit the details of my situation to what I think would be relevant to the questions at hand, but only to keep things concise and as simple as possible. If more details are needed I am certainly willing to provide them.

DISEASE BACKGROUND - Some high-level details of my illness.
About two weeks ago I was diagnosed with a terminal, inoperable brain tumor. I am going to start radiation and chemotherapy on 02.27.2013. The current treatment plan calls for therapy five days a week for about six weeks - through 04.19.2013. We don't know how terminal the terminal part is, and we really won't until after those six weeks. Worst case is less than a year. Median is one to two years. I've got potential to be a fairly optimistic case - some folks are still going strong after eight to ten years.

FINANCIAL BACKGROUND - High-level details of our current financial situation
  • Married, three biological children (7 months, 3 years and 4 years) and one step-child (9 years)
  • Wife is a full-time stay-at-home mother. She has no work-from-home type income.
  • Wife does collect child support from the 9 year-old's father. We have a good relationship with him.
  • We closed on a new-construction home in mid-December - about two weeks before learning of the brain tumor.
  • We have a 30-year fixed rate mortgage at 3.25% through a USDA Rural Development loan. We put $10,000 down. The original loan amount was $283,500.00.
  • I am the only one on the mortgage note. My wife is not on the note. My wife and I are both on the title - I think it's "Joint Survivorship", but I could be mistaken if that sounds wrong.
  • The loan closed on 12.20.2012. Wells Fargo bought it from our broker less than 30 days ago (I think it was less than 30 days ago...)
  • We did not purchase any sort of mortgage payment protection, etc.
  • I am employed full-time as a software developer. My salary is $79,000/year.
  • I have up to 160 hours of paid leave at work. There is no distinction made between sick leave and vacation.
  • My employer has been extremely understanding (so far!). I am working from home. Because I'm salaried, and I work so many nights and weekends for product releases, they have told me there is no need to take any leave for my doctors' appointments, etc. at this time. I'm still putting in well over my 40 hours/week. If push ever came to shove, that could be verified by our VPN activity reports.
  • We have one vehicle financed through Navy Federal Credit Union - my wife's 2012 Ford Explorer.
  • I am the only one on the NFCU car note. My wife is not on the note. We are both on the vehicle's title.
  • I can no longer drive, so last week we sold the 2005 Volvo that we owned outright.
  • We have a few credit cards, but they have minimal balances. Mostly just recurring monthly charges to keep a rolling history on them. They could all be paid off quickly.
  • I do not have short-term disability insurance.
  • I do have long term disability insurance.
  • I have $50,000 of automatic group life insurance through my employer, plus I've done a buy-up of $170,000 for a total of $220,000.00.
  • I have decent health insurance for these times. I believe my deductible is $2,000 with an out of pocket max of $4,000. We also have a $2,000 FSA.
  • Our retirement accounts are fairly limited. My wife doesn't have anything in her name, and mine are meager and not vested (I know, I know...).

OTHER STUFF - We've had a fairly eventful financial past, and this info may or may not be helpful.
  • Purchased a home in 2008 - FHA loan.
  • A few months later my wife had to quit her job and I had to start working in central Virginia versus Washington, DC due to a medical condition for our now-four-year-old.
  • Our income dropped by about 50% ($60,000/year) overnight.
  • Mailed our keys to Wells Fargo within a few days and moved in to an apartment (this was just before "The Bubble" - no way we could afford the $2,400/month payment). House was foreclosed on within one to two months.
  • We filed Chapter 7. Our discharge date was 10/09/2009.
  • We had two cars financed at the time - one we reaffirmed, the other we turned in as a voluntary repo.
  • They're getting better all the time, of course, but both my wife and I have managed to get our credit scores in to the 680s.

PRIMARY QUESTIONS - These are my primary questions, but I'm sure I may be missing some important ones that I don't even know to ask.
  • Are there any obvious steps I need to take to protect my family?
  • Are there any major implications of our mortgage situation?
  • Are there any major implications of our vehicle loan situation?
  • Are there any major tax implications outside of the obvious ones (like keeping receipts, etc.)?
  • Is anyone aware of any programs/grants/etc. for which I should attempt to apply?
  • Is there anything special I should do to protect myself in terms of my relationship with my employer?
  • Is it too late to apply for some sort of payment protection (or similar) on the mortgage?
  • Are there any semi-shady contractual terms that I should know about (e.g., if a creditor is unable to recover from my wife for an unsecured debt only in my name after I die)
  • Is there anything my wife needs to start doing now from a financial standpoint (e.g., paper trails, histories of saving - or not saving, etc.)
  • I have every intention of continuing to work. We've been told that I am virtually guaranteed to get full disability from the SSA, but that once I do I really can't go back to work. We've also been told that I can't apply for disability until I stop working (makes sense to me) and that I won't see any payments for at least about 5 months. If I have to stop working to collect disability then my wife and I see no reason to do that now. I like to work, I'm able to work (from home), and I make much more money actually working than I would get in disability benefits. I've also got pretty good health insurance. I plan to work until either (1) I can no longer work and I've used up all of my leave or (2) I get fired for performance reasons (I can't really see this happening, to be honest, but I'm not sure that it would make a functional difference in terms of disability compared to the first scenario).
  • Anything else obvious that I'm missing?
CONCLUSION - I have no subtitle for this.
I'm not trying to milk this situation. That being said, the safety and security of my family is incredibly important. If there are any saavy or calculated [legal] moves that I can make that will help make my family more secure I'm all for it. We have always tried to follow whatever "Golden Rule" we can with our financial dealings - for example, we could have squatted at our first home for quite a long time, but we felt that we did was the "right" thing to do, in ethical terms. We'd like to stay as ethical as possible, but where ethics become murky, but the law is still clear, we'd err on the side of protecting the family.

I should have mentioned it originally - my wife and I are currently in the process now of updating our wills, preparing our living wills, making arrangements for guardianship of our kids, etc.

Thank you everyone for your input so far - this is all really and truly helpful.

I'll update the OP, but I'll add it here since it's been the topic of many replies - I just created account over at the SSA website and checked my benefits status. I also ran through the online calculator using my old tax records and got a fairly similar result.

Survivor Benefits - Child: $1,492
Survivor Benefits - Spouse: $1,492
Total Maximum Family Benefits: $3,481

While it would certainly be a thorny subject, we do have a very good relationship with my son's bio-dad (as I call him). The child survivor benefit is greater than the child support payment, so it would normally be advantageous to my wife. That family maximum makes it a moot point, however. She'll max out her benefits before his benefit would be considered.

I don't know what makes that max benefit change over time, but from the light reading I did it doesn't sound like it would move too significantly in the near future.

Many of you have asked - I'm 30 years-old.

Also - wow - I've got to say again how truly touched my wife I are with the show of support. I expected (and hoped) to get some cold, calculated advice from the FWF crowd - and I did. But we've been really touched by the abundant and vocal support that everyone has shown. I'm going to keep responding to questions/comments. I'll also keep updating our progress. Although I hope no one will need to reference this post, hopefully it will help someone if they do.

I'll update the OP as well, but I'll list it here as well...

We're Treating With
UVA Health System / Dr. Schiff

We've Consulted (and Vetted)
Duke / Dr. Friedman
Mayo Clinic
Cedars Sinai
Johns Hopkins

I'm 30 years-old. I don't have a glioblastoma - I've heard that's both a blessing and a curse. I have a diffuse brain stem glioma, focused in the medulla. We're not sure whether it is a low-grade or a high-grade glioma because a biopsy is really not a viable option for me.

I also posted this in the thread, but adding it here as well:

Hello all - long overdue update post here. I've been a crap communicator the last several weeks, mostly because I'm just so darn exhausted.

I researched clinical trials as best I could. I couldn't find anything for my specific diagnoses - again, it's pretty unheard of in adults - but I did consult with my Neuro-Oncologist who said that, based on that rarity, in his experience treating reasonably now wouldn't necessarily bar me from a clinical trial down the road several years if one opens up. He said that any clinical trial that deals with my specific diagnosis wouldn't be able to get any participants if it excluded folks who had completed their "best guess" for treatment. That may be BS, but given that there aren't any current trials it sounded good to me.

I also looked in to the Ketogenic (spelling?) diet. We consulted with a few doctors and nutritionists. We learned that itís a very difficult diet to get right, and that itís an all-or-nothing affair. We were also warned of some long-term side effects or pursuing the diet. Ultimately we decided to eat bacon and be happy.

My therapy regimen calls for six weeks of radiation treatment, five days a week (Monday through Friday) along with nightly doses of chemo every night (including weekends). Iíve got seven days of radiation left, and therefore nine days of chemo with it. I must say that I feel very lucky to be weathering this face of treatment as well as I am. I get completely exhausted around 5:00PM or so (it was initially not until 9:00PM or 10:00PM), and I can definitely feel the radiation starting to catch up with me physically (tooth sensitivity and the like), but Ė Iím still working [from home] full-time, able to get my treatment sessions in during my lunch break, and able to put my four kids to bed each night. From what Iíve heard and read it could be a lot worse right now.

Weíll follow-up with my Neuro-Oncologist again three weeks after the completion of my treatment (with the final day being next Thursday, April 11th). At that point theyíll do a repeat MRI and see where I am and where I might be down the road. Still being realistic, planning and preparing for the worst, and hoping for the best.

Weíve got our updated wills and living wills, etc. underway through our attorney. Weíll be investigating putting as much in to trust(s) as possible Ė Iíll admit I donít know a whole lot about that bit of planning, but I do know enough to know that Iíll be looking in to it.

I did take the suggestion of another poster and more pro-actively work towards setting up a passive revenue stream for our family for the time when I am unable to work, or no longer living to work. I set up an LLC with my wife as the sole owner and registered that business with the Apple, Android, Windows Phone and Windows 8 App stores. Nothing release yet, but Iím on track to crank out a good 20 or so apps within the next week or two. My target scenario is free ad-supported apps that someone will keep on their phone and open from time to time. Iíve done some preliminary math through several of the ad platforms and even a conservative number of downloads/views, without even many click-throughs, would provide meaningful income for my family.

There are other items that have been surfaced in this thread that I still plan to look in to Ė insurance strategies, timeshare strategies. To be honest, Iíve been trying to get some of these core items tackled the last several weeks. That, combined with the fact that Iím trying to keep family time as a major focus, and how tired Iíve been getting, has made it difficult to get as much stuff checked off as Iíd like. Iím optimistic that once my treatment takes a break Iíll have a bit more energy to tackle these other questions. Hopefully Iíve picked wisely what I focus on at the present time.
2/22/13 9:56 AM
Donations sent to Kashisti and his family. Thanks for your kindness, everyone.
2/22/13 10:08 AM
Wow - you're in my prayers, brother. You seem like a really stand-up guy, too, from what you've said about not wanting to hose the companies and still do right by your family. I don't know what to say other than be there as much as you can for your wife/kids right now. Someone smarter than me can chip in on the FWF side of the house.
2/22/13 10:08 AM
First, let me offer my condolences for your terminal diagnosis. Your head must be reeling. I wish you the best of luck in your treatment and I hope the best for you and your family.

May I ask what medical condition your four year old has that required your wife to quit her job?
2/22/13 10:09 AM
My condolences for your illness. Sorry I don't have any advice - best of luck to you and your family.
2/22/13 10:09 AM
In some ways, you have posted too much information. Let's boil it down

1. How much liquid cash will your wife have should you die at the earliest date? (IRA, 401K,life insurance, doesn't matter). This will determine whether your wife needs to be working and for how much. My guess is she does. She needs to get a job right away, probably. You / she may need to sell the house to have lower monthly costs. The sooner you do this the better
2. What will your wife / kids do for medical insurance? Unless you have some sort of survivors plan from work, she will likely have to back to work for this as well
3. Make sure your assets are titled correctly to go directly to your wife so you avoid probate
4. What happens to your kids if your wife dies when the kids are still young? You need to deal with this now while you are both still healthy
5. If you make it to the start of the next plan year at work, max out LTD, STD, and Life insurance. Adjust your medical insurance as best you can to meet your treatment needs/ These are probably your only options at this point

These, and perhaps something I missed are the big things. The rest is refinement (people will suggest you sign up for Credit payment protection, which is fine, but in the end it won't necessarily have the major impact hat that the above have
2/22/13 10:13 AM
The main thing that comes to my mind is the television-advertised insurance that says "no medical questions/you can't be turned down." Now that may be because they'll charge you too much to even consider it, but it may be worth a shot.

Secondly, I'm so very sad to read of your situation. Central Virginia is a somewhat vague area, but if you are near Lynchburg, I am down the street. PM me. Seriously. You can vet me and I'll be glad to help in whatever way I can. Blessings to you...
2/22/13 10:14 AM
ETA, medical expenses are deductible over a threshold (2% I think)

You need to make a decision on how much treatment you can afford. Sounds heartless I know. But your wife will want to spend everything to extend your time, leaving her destitute. Is that what you want?

1) if she is not financially savvy, knows how to invest and how to be frugal, she needs to learn right away or get help
2) you need a will, an Advanced Medical directive, at the right time - a DNR, and a durable power of attorney. Your wife if she is level headed, someone else if she is not.
2/22/13 10:15 AM
My condolences.

You won't be able to get payment protection, or additional life insurance, due to the diagnosis. If your buy up is less than two years old, the insurance company may try to wiggle out of it. Your wife needs to get a job. SSA won't provide you with health insurance, so keep your job as long as you can.
2/22/13 10:17 AM
turtlebug said:   

First, let me offer my condolences for your terminal diagnosis. Your head must be reeling. I wish you the best of luck in your treatment and I hope the best for you and your family.

May I ask what medical condition your four year old has that required your wife to quit her job?

Thank you for the kind words.

And yes, certainly - he'a asthmatic. He still is, though his breathing treatments have got it under control. He was admitted to the hospital to put on a ventilator twice during his first year of life.

Daycare made it nearly impossible to keep him disease-free. He was always catching something. Additionally he couldn't even really go to daycare when he was highly symptomatic. My wife and I both exhausted our paid leave staying home with him. Once we were both out of paid leave she started to take leave without pay - I made more money, so she took the hit. She had a really outstanding history with her company at the time, and wanted to maintain that good relationship. Once it became apparent that she wouldn't be able to go back to work anytime soon, she tendered her resignation and left with a very good record. Since she wasn't earning any income at that point anyway we felt that was a better choice than her career fizzling out until she was fired.
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