Short intro about the blog

This blog is about our journey to healing with Grade 3 Anaplastic Oligoastrocytoma

Tuesday, May 29, 2012

A Financial Testimony

I’m not usually one to go around broadcasting the specifics of our financial situation.  However, I’ve been feeling this nagging in my heart getting stronger and stronger, suggesting that I post about it.  So here goes.  But, I need to warn you… this is gonna be a long one! 

Pretty much everyone around us knows that Adam’s business doesn’t bring in a huge amount of money, and a few times over the past 5 years we have really struggled.  I was thinking about the past year, and I am gobsmacked that God would make one small family struggle so much.  I’m not really complaining, believe it or not.  I have complete faith in Him, and I know that all of this is for a reason.  I’m just starting to wonder, is all this REALLY so necessary?  Really, God?  Really?

The first year of owning our own business, our household brought in a whopping $2,000, but we made it.  The next three years were all good.  Each year averaged around $50,000, which is fantastic.  We could pay all our bills, if the kids needed socks or a jacket we just got them, art classes and extracurricular activities were no problem.  In 2010, we even made a bit more than that, and we took our first vacation since our honeymoon.  Then 2011 smacked us in the face.  It started off fine, then in March Adam’s work dropped off completely.  So, I got us a credit card and took out a $3,000 advance to pay all the bills and get us through the month.  In, April we had no income, so I did the same again.  All the while I kept thinking, “Tomorrow the phone will ring.  Tomorrow we’ll get a job and everything will be fine.”  Well, that call never came.  In May, I took out another advance, and unbelievably in retrospect, I did it once again in June.  By the end of June, we were $12,000 in debt and Adam had one small job going.  We got to the end of the month, and the two credit cards we had been using were maxed out.  I asked FISH to help us pay our mortgage, and they very charitably paid half our bill.  A couple of people had recommended Dave Ramsay’s books to me, and I read one.  It was great and full of wonderful advice.  On July 1st I cut up our credit cards, which wasn’t really all that drastic since there was no available balance on either one!  A week later Adam took his first paycheck since March for $598.  I paid a few of the most critical bills, and bought groceries for two weeks.  Then we were on empty.  Nothing left.  And no credit to fall back on.  I began to pray.  I prayed a novena to Our Lady of the Miraculous Medal and begged her to feed our family.  For a week, we ate little more than corn tortillas and potatoes, then an amazing thing happened.  Suddenly, one knock on the door, then another.  Friends were bringing food.  These incredibly generous and loving friends cleared out their chest freezers and pantries and brought boxes and coolers full of food.  Within a couple of days my kitchen floor was completely covered with stacks of boxes.  I cried several times that week, and thanked God on my knees for His wonderful angels who I proudly call my friends.

Work picked up after that.  We made just enough to scrape by for the rest of the year.  As of the second week of December 2011, our year’s income totaled $30,000.  Then something interesting occurred.  Work had been quite steady for October and November, and in the third week of December we suddenly received $50,000 in checks.  Now, keep in mind this is for the business as a whole.  After paying the consultants and expenses, we end up with 10%.  But, here’s what happened.  Immediately after depositing those checks, Adam ended up in the hospital.  He was unable to pay any consultants’ fees or expenses until after the first of the new year.  I didn’t think much about it until we did our taxes.  Holy cow.  Suddenly, instead of $30,000 worth of income for the year, it looked like we made $80,000.  We owed $11,000 in taxes.  I laughed.  I actually laughed out loud.  Here my husband had just been diagnosed with probably the worst thing imaginable, had emergency surgery, and now we were being spanked with a colossal tax bill.  It’s still out there, and I have no idea what the IRS is going to do.  We submitted our taxes in April and haven’t heard yet about setting up a payment schedule.  Frankly, I just don’t care.

Shortly after Adam’s surgery, the bills started rolling in.  I have a box.  I just throw them in there.  The stack is huge.  I can’t believe how many different people are involved in a relatively straightforward surgical procedure.  The total expense for the surgery came to over $45,000.  What about insurance, you may ask?  We don’t have it.  Adam is self-employed and a cancer survivor (his melanoma from 2000).  Private insurance companies won’t touch him with a ten-foot pole.  So, we’ve never had it, and thank God!  Because medical insurance wasn’t an option, we had to find something else, and a friend recommended Samaritan Ministries.  We joined several years ago and have never looked back.  It is an incredible blessing to be a part of a health sharing ministry, and Samaritan Ministries was a major reason for us choosing the Burzynski Clinic for Adam’s treatment.  You see, they published an article about Dr. Burzynski in their newsletter a few years ago, and I kept it.  I didn’t know why back then, but I just knew I was supposed to keep it.  They have also been the key reason we were able to pursue the treatment at all.  We just don’t have that kind of money, and even if we had private insurance, they don’t cover clinical trials.  Or patients who have had cancer previously.  Our counselor at the ministry assured us that Samaritan would help, and it was a massive leap of faith to step off into the abyss.  I knew the costs would be astronomical, but I had complete faith that it would all work out somehow.  So, back to the surgery costs.  Winchester Medical Center forgave the entirety of their bill after we applied for a grant.  Hey, being poor has its advantages!  That took off $27,395.  Then Samaritan kicked in $17,496.  I’ll do the math for you… that comes to $559 that we ended up paying ourselves.  Amazing.  Then we had the start-up costs for the antineoplaston treatment.  During the 4 weeks we were in Houston, we paid out over $36,000 to begin Adam’s cancer treatment.  I still can’t fathom how we did it, but we did it.  Adam’s parents started us off with a very generous gift.  That got us nearly halfway there.  We cleared out the business account and the money we had put aside in anticipation of having to pay taxes.  Since the amount we had put away was pennies compared to what we owed, neither of us minded reallocating that money to save Adam’s life!  My sister and her mother-in-law did an incredible fundraising drive that raised nearly $5,000 from generous family, friends and neighbors.  My mother donated more than that just on her own.  We also received donations directly from friends and family that made up the rest.  God is incredible with what He is able to do.  Unbelievable.  Now we just have the monthly layout for Adam to continue with treatment.  The Burzynski Clinic charges $7,600 for their services, which we are happy to pay.  This covers all medication, supplies, phone consultations, interpretation of lab results, and administrative costs.  I think it’s a steal.  Triple that number and you come close to what chemo would cost.  With lab costs, MRI’s, additional supplies, vitamins and supplements we end up spending around $10,000 per month for Adam to stay on treatment.  And somehow, we’re doing it.  So far, Samaritan has given us an additional $33,174 to cover Adam’s treatment, and so we’ve been able to pay for April, May and now June.  Am I worried about the rest of the year?  No.  I don’t really have the time or energy for worrying about it!  God has gotten us this far.  I know we’ll make it to the end.

It’s funny.  I started out writing this post with a little frustration in my heart.  I was questioning God and His wisdom, and found it difficult to comprehend why He was doing this to us.  But, after writing out this testimony, I’m at peace.  What an awesome gift we’ve received!  To be a witness to such a miracle is more than I humbly deserve.  I don’t know why He chose us, but He did.  We’re on this ride now, and there’s no getting off.  Praise be to God.

Wednesday, May 23, 2012

Full speed ahead!

Adam reached his maximum dose over this past weekend.  And he's feeling great!  No brain fluid or swelling, no increase in fatigue, nada.  I really thought our luck was going to run out, and that Adam would start experiencing all the side-effects in the book.  But, nope, my trouper-of-a-husband keeps truckin' along.  He's still working, and has really started picking up the slack with the bedtime routine, thank God.  Once I've cooked dinner, survived the nightmare that IS dinnertime, washed the dishes and cleaned up the kitchen, and done all of Ali's supplements, I'm just toast.  I can't hardly make it up the stairs.  So, Adam has been getting the boys ready for bed for me, and I'm so grateful.  Now that tells you something.  If he's able to get these three lunatics washed, watered, brushed, and pyjama'ed, then you know he's doing alright.  He's still not sleeping much, and has had to increase his water intake to 12 (!!) liters a day, so the toilet is his best friend.  But, his bloodwork is coming back stellar, and overall he's doing incredibly well.  We are looking forward to the next MRI, which will be coming up in 4 weeks time.  That tumor better start getting the hint.

Saturday, May 12, 2012

Disappointing news

Well, here we are, 8 weeks since the last MRI scan.  We had really high hopes.  Adam has been doing amazingly well.  He feels relatively good.  He hasn't missed a dose.  He's been keeping to our new super-healthy way of life.  Perfect diet, all the appropriate supplements, going to bed early, working shorter days, no cell or cordless phone... he hasn't slipped an inch.  I haven't either.  I dutifully make him three healthy made-from-scratch meals everyday.  I run freshly made vegetable juices, whey protein shakes, nuts and low-sodium cheese up to him in his office all day long.  He's been drinking 8 liters of water every single day, which I filter for him every morning (it takes over 20 minutes).  And we've been praying.  Oh, how we've prayed.  We really expected a good result on Thursday's MRI.  We felt it.  We knew it.  This tumor is history.  We were preparing ourselves to start the countdown.  You see, once the tumor is completely gone, then Adam only has 8 more months of treatment.  He's fed up.  I'm exhausted.  We need this to be over, or we both might go insane.

I guess God has other plans.  The MRI showed that the tumor that had shrunk by 40% 8 weeks ago, has now increased in size by 20%.  There is also another lesion that has remained unchanged.  It's all a bit confusing, as there are two balls of active tumor, but since they came from the original tumor that Adam had removed, I guess some still consider that "one" tumor.  We didn't quite understand that from the last two scans.  Now we understand that there are actually two lesions we are dealing with, one of which has remained unchanged throughout the 12 weeks of treatment.  The other one showed a good response on the first scan, but has now started fighting back and is growing again.  I suppose it's good news overall.  The tumor seems to be affected by the treatment, but apparently this dosage level just isn't going to cut it.  So, Dr. Barbara has decided to increase Adam up to the maximum dosage.  To put it bluntly, this sucks.  It sucks on so many levels.  Adam has been sailing along with no side effects up to this point.  He would now be facing nearly double the dosage, which could start causing him problems.  Most likely, he will begin to experience build-up of fluid in the brain leading to intracranial pressure.  This would require him to be on a steroid to control the swelling.  Also, he is already drinking 8 liters of water a day.  At such a high dosage, he will most certainly need to drink a lot more.  His urinary system is struggling to handle the amount of fluid, and he has developed a severe incontinence problem.  It makes it extremely difficult to go anywhere, even with the aid of incontinence pads.  It will probably get much worse once he is forced to increase his fluid intake.  And the interruptions in the night will be more frequent.  He's already very sleep-deprived, and is struggling to work as it is.  He may not be able to continue working, which is something I can't even fathom right now.  Having no income will definitely be a major problem.

Because Adam's blood work had become so consistant, we had been able to draw and deliver blood only twice a week.  Now that will be bumped up to three runs a week again.  We haven't even received our first invoice from the hospital for the last two months of bloodwork.  I shudder at the thought of how high our tab is getting at the diagnostic center.  Also, our schedule is going to change.  This terrifies me.  The past two months have been grueling, but we've been managing.  We rely on an awful lot of people for help, and without them I would have crumbled by now.  I feel like I've reached the point where I am doing the most I can possibly do.  But, now with the dosage increase I will now have to prep and change bags three times a day instead of two.  I was playing around with our schedule yesterday, and it is going to be incredibly hard.  Adam will need to come off at 6:30am.  I will have to draw blood at 8:00am, and have him hooked back up immediately to start infusing as close to 8:00 as possible.  He will need to be disconnected again at 2:30pm, which means I will be unable to take the kids out in the afternoon.  Forget soccer, no playgroup, no park.  Then the third change will be at 10:30pm.  He won't stop his evening infusion before 10:30, so I'll have to stay awake so I can disconnect him then.  Then it'll take me about a half-hour to prep and reconnect him, which he can be asleep for.  But, I won't be able to go to bed before 11:00pm, which is really pushing it for me.  Especially since I'll have to be up and at 'em before 6:30am to start the process all over again.  It's going to be extremely challenging and I'm not looking forward to a year of this new schedule.

A friend wrote in an email recently that many people believe that God never gives us more than we can handle.  This is our cross, but by that thinking, it's a cross that Adam and I should be able to bear.  But, that isn't exactly true.  What about Jesus's own cross?  He couldn't handle it.  He fell three times trying to carry it, and He was unable to do so.  Without Simon of Cyrene's help, He would not have gotten that cross up the hill to Calvary.  God does in fact give us crosses we can't bear.  I can't understand why, but I don't understand most of what God does.  That's what makes him so amazing.