Hi friends, I’m just going to start by saying that this is a difficult post for me to write.  First of all, I’m dead dog tired.  I know, Kevin should be the one who’s exhausted, and he is, but it’s also been a long road for me these past 7 weeks, as I’ve had to pick up the slack where Kevin would usually help me out.  Add to that that we’ve had a few REALLY big insurance issues to deal with, and I’ve done my best to take over handling that because Kevin was just struggling to continue to make it through radiation and work.  Anyway, we are at the point where we really need to ask for help.  We have asked for help here and there with meals, and we’ve had various family coming out and helping us make it through moving and the surgeries and the start of radiation, but I think we’re about to come up to the biggest battle of all, and we’re feeling at our most vulnerable and tired.  Let me see if I can organize my thoughts a little.

First of all, Kevin had his last day of radiation this past Wednesday, and we are sooooo excited and glad to be done with that phase of treatment.  He is already starting to feel a little better, but the side effects will definitely last for a while, and some of them will be permanent.  He is still currently struggling with pain, nausea, and fatigue.  Those should all get steadily better as time goes on.  Of course, just when he’s really starting to feel good is when we’ll be starting his immunotherapy phase and he’ll get beat up all over again.  But for now, we’re trying to take it one day at a time.  The permanent or lasting side effects are hair loss in the direct area of radiation, what appears to be some slight vision loss, and possibly some slight hearing loss and loss of facial muscle strength on the left side of his face.  He’s also got a really dry mouth, because the radiation fried his parotid gland on that side, which is apparently responsible for salivary production.  The metallic taste is starting to subside some, but it’s still bothersome.  He’s been craving simple, comfort food of late, macaroni and cheese, mashed potatoes with gravy, etc.

The second big thing going on is that we have about three different insurance issues we are currently dealing with.  Without boring you with too many details, we received a letter from his insurance stating that they had determined that he had a pre-existing condition and that they would not be covering his cancer treatment from last fall.  I’ve been organizing our files, working with a case manager at the Patient Advocate Foundation (amazing people!) and trying to make sense of how health insurance and medical billing works to manage this issue.  I received AMAZINGLY good news yesterday that his pre-existing condition denial had been reversed before we’d even filed an appeal.  This is a HUGE praise.  Honestly, I truly believe it’s because so many people are praying for us, as the lady I spoke with from the insurance company said that she has NEVER seen it overturned without a formal appeal made.  We will receive a written letter documenting the overturn, but that leads me down another path of insurance junk.  There are many bills that are overdue and about to go to collections, and I am trying to figure out what has been paid, what hasn’t, how much we have paid, what we actually owe, etc. and also to have claims reprocessed now that our insurance is paying the bills again.  It’s all VERY confusing.

Add to that several other insurance issues relating to his old insurance paying for things his new insurance was supposed to pay for, renewing the insurance coverage for me and the kids, and figuring out the best way to make sure we’re not on the hook for thousands and thousands of dollars.  It’s confusing AND overwhelming.  Oh yeah, all while taking care of a 1 and a 2 year old… you wonder why I’m tired!

SO, this is where all of you come in.  I know that there are a LOT of folks who have been following our story, praying for us, helping with meals, etc.  We are so incredibly grateful for all of your support.  It means more than you can imagine.  I have worked hard to put together a little “How You Can Help” page at the top of our site and in the sidebar to the right.  You can read it and get an idea of what some of our needs are.  For now, we could really use some help chipping in to cover these various medical copays and deductibles.  If that is an area that you would like to help out in, just click the Paypal donate button.  ANY amount is helpful, $5 covers a day’s worth of parking, and believe me those little things add up.  So know that little bits help out a lot too.  Kevin’s insurance has a smaller deductible this year but it’s not an amount that we have saved up.  We have had SO much change over the past 18 months (moving cross country, changing jobs, moving houses, buying and renovating a house, three surgeries, two kids) that we’ve not had the chance to really recover and build any savings back up.

It’s so very very hard for us to ask for financial help.  Kevin has a good job, and we are incredibly grateful for it, and for his ability to continue working for now.  We know that there are many folks in much harder financial situations than us.  But we are also trying to be as responsible as we can with our finances, so that there is not a huge financial fallout at the end of all of this.  I remember always wondering what people meant when I would see little fundraisers or buckets at the gas station raising money for folks struggling through a serious illness.  I thought, “don’t they have health insurance?”  But what we are realizing being on the other side of it now, is that health insurance may cover a lot, but it doesn’t cover everything, not even close.  Add to that that when you are under extreme stress you aren’t really operating efficiently… meal planning and stocking up on deals kind of goes out the window, you eat out more because you’ve been at the doctor’s all morning or you’re exhausted from being on the phone with three different medical providers all day while trying to keep two small children occupied and feeling guilty that they’re watching yet another hour of television.  Little things add up.  Big things add up.  And while one person is fighting for his life, financial health goes terminal.  We don’t want to end up like that.  We don’t want to end up having a HUGE financial mess at the end of all of this.  And so after a lot of prayer, we decided to turn to our friends to ask for help.  If it is an area that you feel led in, please consider making a financial donation to help us weather this storm and we promise to uphold our end of the bargain and be as responsible as possible with your financial blessings.  If you feel led to help in other ways, know that there are many other things that can help, even a call or a visit from a friend!  Visit our How You Can Help page and thank you again for everything, dear friends!

I haven’t had the energy to post any real updates, blog posts, etc. in a while, so here’s just a real quick one.  We are nearing the end of radiation and trying to hang in there!  Kevin has 8 more treatments.  We will see his Dr. tomorrow morning after his treatment.  Thank you to Rachael and John Sherwood, as they will be coming over tomorrow morning to watch the kids so I can go with him (at 6AM) to his treatment and Dr. appt.

Thanks also to my mom and dad for keeping the kids from Thursday night until Saturday night.  While it was wonderful to have a little time to rest and recover, I spent most of it dealing with insurance junk.  Our latest challenge has been that Kevin’s insurance from last fall is saying that he had a pre-existing condition and so they are not going to cover any of his cancer treatment.  He is with a different insurance now, so no worries (we hope) about his current and future treatment being covered, but there are a huge amount of bills from the fall, so it’s a great big project to be working on, gathering records, filing an appeal, etc.  Luckily, on Friday I was referred to the Patient Advocate Foundation through a hospital social worker.  They are a national non-profit and it appears that their mission is to help folks out with exactly this kind of thing.  They are partnered with the American Cancer Society and offer their services at no cost.  They will assist with the appeal and provide legal services if necessary.  I was crying tears of relief when talking with them on Friday.  But there is still a lot of work to be done, so that is what I’ll be spending most of the day tomorrow working on (with two sick children by my side).

Kevin is hanging in there.  This has been much more difficult on him physically then we ever would have imagined.  By the end of the week, he is just totally beat, and spends most of the weekend trying to rest up.  But I am so proud of him as he pushes through each day and simply puts one foot in front of the other.  It has been very difficult for me to watch him get so sick, especially knowing it is the treatment that is doing it, and not even the cancer.  But we take it one day at a time, and try to focus on the moment.  We are also trying to remember to laugh and enjoy life, enjoy our children, our home, our neighborhood, our many many blessings, and that definitely has made all the difference.  Please pray for us that we make it through this next phase and for the uncertainty that we have about what the next steps are.  We don’t really know any details yet about appointments, tests, etc. for his next phase of treatment.  We just know it will start four weeks after radiation ends.  That uncertainty is difficult, but it is definitely a new normal that we are learning to live with.

That’s all for now.  And because I can’t post without a picture, here’s one from earlier this month.