Off the Grid

There hasn't been much to write about the past week, as we've just been counting the days until our trip to New York coming up.  I also have had nothing to type ON.  My PC died over a week ago, and I feel like I've lost a limb.  At least 100 times a day I encounter a need to get onto my computer, only to look over at the closed doors of my computer armoire and sigh.  Adam's computer has also been acting up, and our laptop finally bid farewell to it's already disabled spacebar.  We bought the laptop two years ago for Adam to use for work on those rare occasions that we need to travel.  We had it for less than an hour when a 6 month-old Finlay climbed up and ripped off the spacebar.  I managed to finagle it back on, but it never worked quite right.  When it fell off for the last time a few months ago, we began to use the little rubber nobble located beneath the spacebar.  That finally rubbed off completely, so the laptop is now fairly useless.  You would be amazed at just how necessary a spacebar is.

On Tuesday we will be driving up to New York and we are so excited!!  There has been so much to do to prepare, booking a car and hotel, getting an EKG done and collecting all of Adam's surgery notes, labwork, MRI reports, etc.  Not to mention the daily deluge of bills from everyone with a medical degree who's ever HEARD of Adam.  I swear the nurse that swabbed the surgeon's forehead submitted a separate invoice.  Those of you lucky enough to have insurance never get the privilege of dealing with all this crap.  It's an unbelievable amount of paperwork, and has become a part-time job.  Now we also have a separate pile of bills from Calum's surgery to further complicate matters.  I can't even begin to deal with those right now, and UVA will just have to wait until we get Adam's next treatment protocol underway and I find to the time to feel like calling them back.

Hopefully we will be able to get the laptop looked at while in New York so I'll be able to keep everyone updated.  For now I'm stealing moments here and there to jump on Adam's work PC and check a few emails.  Otherwise, I'm pretty much offline, and best to be reached by phone.  You know, the one with the really long cord.  Does anyone else remember when you used to have a corded phone (you know back in the 80s), and it would get all wound up so you had to lift up the cord and let the phone spin around until it worked out all the coils?  Damn that was fun.  And I get to do it all the time!  Hey, maybe we should just go the full-Amish and just do away with household electricity altogether.  I would love any excuse to get rid of that darn Wii.

God's Road Signs

After I wrote and published my last post, I started once again to do some research.  When you come to a dead end, you turn around and go back to the beginning.  I went to my “cancer” shelf on the bookcase, and pulled out The Alternative Guide to Your Cancer Diagnosis.  After looking under “brain cancer” in the index I was directed to page 311.  I read a short excerpt titled “Success Story:  Brain Tumor Treated with Magnetic Therapy”.  I liked what I read.  After testing for nutritional deficiencies, hormonal imbalances, and toxic metabolite exposure, Dr. Schachter put the patient on a nutritional program with several oral supplements including shark cartilage (a big one in the cancer world right now), amygdalin, antioxidant and immune-enhancing vitamins and herbs.   He also had the patient wear a powerful magnet placed against his head and held in place with a headband for several hours each day.  Nearly 5 years later, the patient who had originally been told he had 6-18 months of survival was doing well.  The tumor had not grown at all while under the treatment.

I decided to look up the doctor’s website, and was immediately greeted by a photo of Dr. Schachter himself.  I couldn’t believe it.  He looks so much like Adam’s father.  Really he’s a perfect cross between my father-in-law and a friend from Nottingham named Ian Campbell.  Huh.  I decided to find out exactly where this place is.  I brought up Suffern, NY on Mapquest and was momentarily stunned.  The clinic is exactly 15 miles from my aunt and uncle in Stony Point.  Double-huh.  Okay, Vanessa.  Calm down.  Breathe.  Is this where we are supposed to go?  It can’t be.  This is way too quick.  It’s been less than 12 hours since Adam was taken off the antineoplastons.  Could God really be directing us already?  Would he send us a sign this quickly?   I asked God for more signs.  I asked Him to be absolutely clear.  No fooling around.  We need to know that this is definitely from You.

I don’t know if you remember 7 months ago when we were trying to figure out where we needed to go for Adam to start cancer treatment.  We asked for sign after sign after sign.  God was beating us over the head with the endless Houston references, and yet still I begged for assurance.  I could imagine Him with His hands on His hips going, “Alright already!!”  Well, this time I’ve been just as annoying.  New York?  Are you sure?  Well, despite my reservations, He’s been revealing His intentions to us once again.  Twice in two days I loaded up the internet to be greeted with “New York” in bold.  The news headlines have been focusing on the horrible shooting that just occurred there.  I’ve also been reading a memoir about a woman who was a plural wife in a fundamentalist Mormon group.  I noticed yesterday morning that at the bottom of the cover it reads, “From the New York Times bestselling author of Shattered Dreams.”  I went to show it to Adam, and he replied, “Now all we need to see is a Chevy HHR with New York plates!”  I stared at him with my mouth gaping wide.  He looked at me with a questioning look, and I said, “Honey… we DROVE a Chevy HHR with New York plates when we went to Houston!”  Finally, yesterday we were out for much of the day running errands.  When we got home there were a few messages on the voice mail.  Adam was listening to them and suddenly said, “Oh, Father Dobbins called… how nice of him.”  Father Dobbins is our parochial vicar, and has been so wonderful to us since this whole journey began.  A moment later Adam looked confused and said, “Wait, I don’t know who that was.”  He played it again for me to listen.  It was clearly Father Dobbins’ voice, but for some reason it was saying, “This is Timothy from the Schachter Center calling to see how Adam is doing today, and wondering if you had any more questions after taking to Anita yesterday.  If you would like to call me back, my number here is…”  I couldn’t believe it.  Adam said, “We are definitely going to New York now.”  Suffern, here we come!

Interlude

It’s 5:00 in the morning, and I just can’t sleep.  Adam and I have been talking, holding hands in the dark.  The bedroom is actually dark for the first time in 6 months.  And completely silent.  The whooshing of the pump is gone, as is the pump’s bright display that used to cast a glow around the whole room.  It’s over.  We received a call yesterday that shocked both of us to the core.  Adam’s lesions have grown since the last MRI 8 weeks ago, and there is now a third lesion.  The treatment didn’t work.  It’s worked for so many others.  It is the one treatment that gave us any hope of Adam seeing the boys grow up.  He probably won’t ever get to meet his grandchildren.  He probably won’t see his boys get married or finish school.  He may not ever get to hear Finlay say "Daddy".

We are both so confused.  God led us to Dr. Burzynski’s clinic.  We know that.  The Divine landmarks were so clear.  Some signs were subtle, others blatant.  We were meant to go there, and this treatment seemed made for Adam.  Why didn’t it work?  Why the horrible 6-month detour?  Adam will never get those 6 months back, and right now every month counts.  He’s been like an old man, unable to wrestle with his three young boys.  Unable to take them to the park, or hike the beautiful trails we are blessed to have nearby.  The kids’ lives were put completely on hold.  When God paves a clear path for you, when He asks you to go somewhere and do something so very hard, it’s supposed to work out, right?  When you do what He tells you… it’s supposed to end well, isn’t it?

We don’t know what we are supposed to do next.  We have discussed a few options, but they all look so awfully wrong.  The Burzynski clinic is encouraging us to come back to Houston so he can start gene-targeted therapy.  It just feels wrong.  First of all, we need to come up with $30,000 to start the other treatment, not to mention all the expenses of going down there.  It makes both of us nauseous just thinking of going back to that place and starting over.  The monthly cost of the treatment is over $20,000.  And it has a much lower rate of success than the antineoplastons.  Not to mention the horrible side-effects of the drugs.  Adam just doesn’t want to go there.  Another option is maybe Dr. Gonzalez in NY.  His protocol is absolutely grueling.  It’s a massive total-body detox, involving several coffee enemas a day, a dozen freshly-made juices a day, liver flushes, handfuls of vitamins and enzymes several times a day… it would make the last 6 months look like a freaking holiday.  And we don’t know if he’s had much success with brain tumors.  Finally, we could go back to England.  Adam could receive radiation and chemotherapy on the NHS, which might buy him a couple of years.  It would destroy his body in the meantime, and might disable him to the point where he couldn’t enjoy the boys during his remaining time with us.  Adam doesn’t want it.  He actually groans everytime I mention the possibility of chemo.

I looked into my trusted Streams in the Desert last night and it didn’t fail me.  What I found was this:

           

            “It is faith without sight.  When we can see, it is not faith, but reasoning.  In crossing the Atlantic we observed this very principle of faith.  We saw no path upon the sea, nor sign of shore.  And yet day by day we were marking our path upon the chart as exactly as if there had followed us a great chalk line upon the sea.  And when we came within twenty miles of land, we knew where we were as exactly as if we had seen it all three thousand miles ahead…  So faith looks up and sails on, by God’s great Sun, not seeing one shoreline or earthly lighthouse or path upon the way.  Often its steps seem to lead into utter uncertainty, and even darkness and disaster; but He opens the way, and often makes such midnight hours the very gates of day.  Let us go forth this day, not knowing, but trusting.”

That’s all we can do right now.  Trust in Him.  We are looking for signs and instructions from Above.  We will go wherever He tells us to go, and we will do whatever He commands.  Our faith is all we have.

Pump Woes

I’ve realized that I never formerly introduced our friends and family to the newest member of our family:  the BodyGuard 121 Twin Infusion System.  We call him “Phil” for short.  Well, actually, the FIRST pump we had was called Phil.  Before we had even left Houston we had already bid Phil goodbye and welcomed a replacement pump into our lives.  The first pump had major issues with priming, which is when we get all the air out of the bags in preparation for infusing.  I would kindly ask Phil to prime the air out, but he would refuse time and time again.  “Down Occlusion” he would snidely tell me, and no matter what I did, he would stubbornly refuse to prime.  So, we said goodbye to Phil.  Pump #2 was great.  I guess we never got around to naming him.  I was still hurting a bit from the fast and furious relationship I had with Phil, and wasn’t interested in building an intimate relationship with this one.  I just wanted him to work.  And work he did!!  Boy, could he prime.  He was consistent with his infusions and never let us down.  Good old #2. 

A few months passed and we got the startling news that Adam’s tumor was growing again.  We would have to increase the dose, and would be doing so in increments of 40ml per infusion per day.  Now, Pump #2 had had it quite easy up till now.  As long as the waters were smooth, #2 was reliable.  But, just like many fair-weather friends, he couldn’t handle the change in dosage.  Actually, it was a little more complicated than that.  It seems that #2 was not as consistent and reliable as I had always thought.  #2 was over-infusing all along, and I never suspected a thing.  Once we switched to three bags a day, however, his shenanigans came apparent, and we had to make a decision.  I loved #2, I really did.  But our nurse was worried about Adam overdosing on his meds.  Overdose, shoverdose.  #2 was a good pump.  So he was a bit fast.  We all have our faults.  Couldn’t we just keep #2?  NO.  The decision was made.  We would have to switch out #2 for a new pump.  So along came #3.  I was very wary of him right from the start.  Would he suffer from the same priming paranoia of Phil?  Would he infuse too fast?  Too slow??  I was starting to loose my confidence in BodyGuard and their pesky temperamental dual-infusion pumps.  I had no choice but to welcome #3 into our family, but I was determined not to get too emotionally involved.  I’d been disappointed and hurt before.  Not his time.

Things started off fine.  #3 primed without difficulty.  Adam seemed to be getting all his dosages, however it was a bit of an adjustment after #2.  I was used to Adam getting every drop out of each bag, but #3 left a little behind.  He was more accurate, yes, but I just can’t stand to see waste.  But, nevermind… I’ll just have to deal.  I needed to remind myself that #3 was giving Adam his exact dose, and that is what’s most important.  We were getting along fine until we got to the end of that first month.  Then #3 showed us his true colors.  He was a tightwad.  Big time.  I’ll explain…  We only get a limited amount of tubing for the month, and I always start to run low well before we’re due our next shipment.  So I have to recycle tubing (shhhh, don’t tell the FDA!).  I might have to use a set of tubing for a second day to make sure I have enough to last the month.  We-hell.  Mr. #3 wasn’t having it.  He demanded new tubing every day.  He just knew, he KNEW when I had put in the previous day’s tubing for one more go.  “Missing Key” he would tell me again and again.  In BodyGuard-ese that means that there’s no tubing in the channel.  Um… yes there is tubing, jerk.  I just installed it myself.  But, no, he would out-and-out refuse to infuse.  So I’d have to get new tubing out and pray to God that somehow we would make it to the next shipment.  This was annoying, but after a few days of this he decided to kick it up another notch.  Now he decided that not only did he want new tubing everyday, but between bag changes as well.  You’ve got to be kidding me.  I can’t change tubing twice a day.  No way.  I’m sorry #3 but this relationship just isn’t going to work.  I’ve had it.  Clinic, send me Pump #4.

At this point I’m stating to feel like J. Lo with all her ex’es.  We all know that J. Lo is hard work.  Who in their right mind would want to be married to such a primadonna?  Clearly her failed relationships are a sign that she has some serious problems.  But, wait.  What if my pump problems were actually because of… me?  What if I’M the problem?  I started to doubt myself, and took a long hard look in the mirror.  I decided right there and then that I would really work, and work hard to make this new relationship a success.  It had to.  For the sake of my family, my children.  It was up to me.  I pasted a smile on my face and joyfully invited Pump #4 into our home.  This was it.  This was going to be the best durn woman-pump union the world had ever known.  I was taking a vow and determined to live it to the full.  But, I did something sneaky.  I… kept… Pump #3.  I don’t know why I did it.  I thought that maybe if #4 didn’t work out, I would have #3 to fall back on.  It was deceitful and wrong.  I know that now.  My fourth relationship was based on a foundation of lies, and doomed from the beginning.  It didn’t take long for that act of poor judgment to catch up with me.  I think he knew.  He must have known I had a former pump lingering in the wings.  He just couldn’t handle it.  Pretty soon I started getting “Air in Line” error messages.  This isn’t unusual.  I’ve seen it before with other pumps.  You just locate the air bubble, work it out, and restart the infusion.  Quite straightforward.  But, not with #4.  He was sensitive… too sensitive.  He started crying wolf a lot.  “Air in Line” he would whine, but there was no air.  I tried to calm him down, and sometimes after a good talk he would start back up again.  But, one time there was air.  It destroyed him.  I worked the air out, checked and double checked again.  There was definitely absolutely no air left in the line.  But, he just shut himself off from me and refused to listen.  I couldn’t break through his shell.  He was determined not to let me in, and I could see that this union was not the union I had hoped for.  Finally, I pulled out #3 so Adam could finish his infusion.  And this next part, I’m not proud of.  I started using them both.  I would use #4 in the morning until he developed his air-phobia, then would switch to #3 at night.  When I needed to recycle tubing, I would switch back to #4.  I did this for a week and it destroyed my soul.  I was exhausted.  Trying to work with two pumps was killing me, but I didn’t know how to get out.  I was in too deep.  Finally I called one of the IV nurses at the clinic and confessed everything.  She was gentle and understanding.  And she told me what I just didn’t want to hear:  “You need to get another pump.”

It’s now been a week.  This time it really has been different.  As soon as #5 arrived, I immediately shipped off #3 and #4 back to the clinic.  In the same box.  I shudder to think about what that journey must have been like with the two of them so close together, but nevermind!  I can’t think about that now.  I’m focused on #5, and so far things are going really really well.  He primes, he infuses, he accepts recycled tubing and (I’m a little giddy about this)… he actually infuses a little fast.  Tee-hee.  I’m really excited and I’m thinking this just might work.  He might actually be “The One”!  Okay, wait a minute.  I’m still talking about the BodyGuard 121 Twin Infusion System right?  It’s a pump.  Just a pump.  Man, do I need to get a full-night’s sleep.

Lolek's Friends

I felt compelled to write a post dedicated to a unique group of friends.  A group I feel so blessed to be a part of.  It started with a wonderful woman named Laura, who suffered a miscarriage late last year.  It was her third miscarriage in a relatively short span of time, and a physically demanding one at that.  Friends rallied around her, and offered what help they could.  Her journey was a difficult one, and involved repeated trips to the emergency room and extended stays in the hospital.  To unite all of those who were looking for updates to direct their prayers, her closest friend started a Facebook group.  We didn’t have a name at first, but when Laura and her husband Chris were led to the name Lolek for their son, a name for the group emerged:  Lolek’s Friends.  Unfortunately, God was only just getting warmed up, and Laura struggled with continual complications.  And as the year came to a close, a mysterious thing happened.  Well, many mysterious things.  Every member of this group was slammed with a cross.  And we’re talking big heavy crosses.  For us it was Adam’s diagnosis.  The others began facing similar difficult challenges:  major health problems, losses of loved ones, family discord and upheaval, severe financial strain, problems with small children, and even bigger problems with teenaged children... just to name a few.  Someone suggested that Satan was attacking our group.  I wondered if perhaps God had intended these events all along, but He had mercifully kept them on hold until we had found each other to lend critical spiritual support.  Whatever it was, we held onto each other and prayed for each other over the internet.  It’s amazing to me that a few of us haven’t even met.  We are separated by distance and circumstance.  But, united in Lolek’s spirit, we have proven to be loyal friends to each other.

This leads me to a revelation I had recently regarding suffering.  It’s no secret that Adam and I have been suffering.  My strong English husband prefers to suffer in silence, and bears the hardships of his treatment with grace.  I’m not so good at that.  I throw it all out there and beg people to read it!  I share and share and share until I get it all out. Oh, sure, I cry alone sometimes.  But, I prefer to share it with others.  I’m also not so good at looking at the positive.  Adam is always quick to point out that everyone is struggling with something, and his problem isn’t all that bad.  I tend to wallow in self-pity.  I can’t help it… I’m a Fagan.  The Fagans are great at creating dysfunctional nuclear families, chronic depression, melodramatics and infinite pessimism.  As much as I try to fight it, at the end of the day the apple doesn’t fall far from the tree.  But, I am trying, really I am.

Lately, I’ve been begging the Lord for some sort of good news.  I’ve been dragging this family through each day, and I’m getting really tired.  I keep asking, “Why”?  Why all this hardship?  Why all this struggling?  Well, God threw me that bone I’d been asking for, and led me to a book on my bookshelf.  As I read Mary of Nazareth yesterday, I was renewed.  I feel so much more at peace now, and I think I understand struggling so much better.  I have spent a lot of time thinking about Mary and her sorrows.  Boy, that woman had it tough.  And God loved her more than any other woman in the history of the world.  So if God loved her the most, why did He make her struggle so?  Is it because suffering is His greatest gift?  When we suffer, we tend to think more about Him.  We pray, we beg for mercy, we beg for good outcomes, and we humbly ask that He hears us and comforts us.  Unfortunately, when things are going swimmingly, we tend to forget Him.  I don’t mean to say that if life is good, you can’t be a devoted follower of Christ.  It’s just a lot harder.  We might thank Him for all our blessings, but we don’t lay in His arms, drawing strength from His loving embrace.  We don’t talk to Him as much, and we don’t ask for things.  I’ve always looked at Christian families who seem to have so much.  Lots of healthy children, with no chronic illnesses whatsoever.  Loads of square footage, and beautiful decorations to surround themselves with.  Nice cars and regular holidays.  And the temptation is to think, “Wow, God must really be pleased with them.”  But, wasn’t he pleased with Mary?  So then, why didn’t He give Mary better transport to Bethlehem?  She rode a donkey, ladies and gentlemen.  If you’ve ever been 9 months pregnant, can you imagine what a week on a donkey must have been like?  I can’t even bear thinking about it.  And what about Jesus’s delivery?  God could have made sure there was a comfortable room somewhere in Bethlehem for Mary to labor in.  Instead Mary found herself in a cave where animals were kept.  We all have cute little manger scenes that we display at Christmas, but when you think about it, the reality must have been quite different.  Here she was in labor for the first time, no mother or midwife to assist her, lying on the floor of a cave with straw poking her in the back, and piles of donkey poo all over the place.   She had a clean house back in Nazareth, with piles of fresh new linens for the baby.  But, God made sure she had only the barest trappings when His Son was born.  And chances are Mary struggled with this, as any of us would have.  And she was the Most Blessed.  This was God’s greatest gift to her.  The families who seem to have so much aren’t the blessed ones.  It’s the ones who find themselves wanting.  The ones who struggle with enormous crosses and bring them before God.  I don’t believe anymore that Satan was attacking Lolek’s Friends.  And I don’t think God just happened to load all those crosses on us for no reason.  I think He was blessing this group.  He was pleased, and to show us how pleased He was, he dumped a massive bucket-full of trials onto us.  We have all suffered and struggled so far this year, and we look forward to a reprieve.  We’ve all said to each other, “Just wait… blessings will come… God has great things in store for you.”  But, guess what.  THIS is the blessing.  Suffering is the gift He reserves for those with whom He is most pleased.  And I’m going to start taking it as a compliment.

Two Trips to Charlottesville - Part 2

If you’re starting to lose count, this week makes the fourth trip to Charlottesville in 3 weeks.  At least this one was planned.  Calum needed to have his pins taken out, so we decided to make the most of it, take all the kids and have a meal out for once.  The morning was busy with prepping bags and a blood run, then packing food for the journey, enough water for an army, all of Adam’s medical supplies for the day, and entertainment for the kids.  Also in the car were Adam’s favorite fashion accessories, his pee-pots.  Since he can’t go more than 30 minutes without a trip to the toilet, he has to “go on the go” (if you know what I mean) every time we a have relatively long car journey.  It was a super hot day, but we made it to Charlottesville in one piece.  Getting out of the car, Adam accidentally dropped his half-full pee-pot on the ground.  The top popped off, and pee sprayed everywhere.   The inside of the car, Adam’s legs, everywhere.  Adam was (as usual) bursting for the loo, but now he had to find a way of disposing a plastic bag full of pee, wash his pot and hands, and figure out what to do about his jeans.  So he trotted off, and I had to corral all three boys, and our 37 bags full of stuff up the ridiculously steep walkway to the Kluge Center.  Calum’s appointment was reasonably straightforward, but I found myself asking God several times WHY Calum had to be the one to break his arm.  If you don’t know Calum, he is the Scarlett O’Hara of this family.  He feels everything so much stronger and more deeply than anyone, and he will remind you several times a minute how much more difficult his life is compared to the rest of the world.  The doctor’s visit was filled with the expected drama, and the pulling of the pins was horrific.  It took 2 nurses and 2 doctors and a medical student to make it happen.  There was an awful lot of ear-splitting screams followed by several minutes of Calum declaring that he wanted to die.  We finally got him to walk back out to the waiting area, where Adam was waiting with the two younger boys.  We stayed in the children’s play area for a few more minutes to let the kids play before getting in the car.  I looked around and took note of the scene my family now causes when we go out.  Littlest Finlay was excitedly going around the room showing me the different toys, shouting “Ungh, UNGH!” and using sign language to get his point across.  Ali was stimming like crazy, because unfortunately he hasn’t had his supplements in weeks.  He does this thing now where he will lunge toward something that catches his eye, touch it with his fingertips, flip his hands over to tap it with the backs of his fingertips, repeat this several times, then lick his fingers.  So he was making his way around the room, LUNGE, touch-tap-touch-tap-touch, then lick, lick, lick… LUNGE, touch-tap-touch-tap-touch, lick, lick, lick.  This includes any people that cross his path as well.  Before they realize that someone is tapping them on the butt, he’s lunging after something else.  It’s infuriating when you are trying to walk across a busy parking lot, and he has to stop to touch every single car, and he is lunging in front of you to tap the ground in between.  Calum was sitting in a chair, soaking wet and blotchy from the tears, and wearing his formerly-broken arm in a sling.  I’ve got my hideous black eye.  And Adam is wandering around the building with his trusty Camelbak, tubes hanging out everywhere, and getting lost on his way back from the bathroom… twice.  I didn’t know whether to laugh or cry.  I suppose I did a little of both.  The other mothers in the waiting area wouldn’t make eye-contact with me.  I think they thought I was a little bit nuts.

We managed to have a meal at Burger King and changed Adam’s bags in the sweltering parking lot.  We made it home in time for a little snack and to put the kids to bed.  I’m sorry to admit, but there was no teeth brushing that night.  I was so exhausted, it took all my strength to get them into their pyjamas and kiss them goodnight.  I barely managed to stay up until 10:30pm and prep and change Adam’s bags before collapsing into bed.  And in 4 weeks, we get to do it all over again for Calum’s next follow-up appointment.  That’s if I don’t pile the whole family into the Mazda and do a Thelma and Louise off a cliff before then.  Anyone know of any good cliffs in Clarke County?

Two Trips to Charlottesville - Part 1

After driving the nearly 2 ½ hours to Charlottesville twice in one week, I was looking forward to a 2-week break before having to go down again for Calum to have his pins removed.  No such luck.  Last Friday morning, Calum woke up very early which is extremely uncharacteristic for him.  He was complaining that his arm REALLY hurt and it felt like someone was stabbing him in the arm.  Because Calum is Calum, I didn’t take it too seriously.  He spent the rest of the day watching his beloved Pokemon cartoons and relaxing on the sofa.  He kept complaining about his arm, and the Tylenol wasn’t cutting it.  I called the doctors office in Charlottesville, and spoke to the nurse.  She suggested I try cycling Tylenol and Advil a bit more frequently and to call her again before 5:00pm.  By 4:00pm, he had had two cycles of pain relief, and he was still complaining about the pain.  At two weeks out from injury, he shouldn’t be feeling pain, so the nurse suspected he might have an infection.  She told me it meant we would have to go to the ER, and that she would call over to UVA to let Dr. Romness know I was coming.  “Oh, no no no no no!  That’s okay!  We’ll just go to our own ER here in Winchester”, I said.  There was an extended moment of silence before the nurse said, “Um… I’m sorry to tell you this, but they won’t treat him there.  You see, the surgery was done down here, and they don’t like to mess with other doctors’ work.”  I didn’t believe her, so I called Winchester myself.  Darn it, she was right.  They wouldn’t see him.  We were off to Charlottesville… AGAIN.

By this time, it was after 5:00pm, so there was a bit of a scramble to get packed and try to get down there as early as possible.  My sister came over to pick up Ali and Finlay for the night, and I ran around gathering medical supplies and packing food.  Dinner that night consisted of cheese sticks, peanuts and baby carrots.  We piled all our bags into the car, buckled Calum in and headed southward.  As soon as we registered, the same friendly nurse we had two weeks before came out to get Calum.  She recognized his name, and decided to help us jump the queue by bringing Calum straight back to a room in the children’s ER  We chatted about how ridiculous it was that we had to keep coming back to Charlottesville, and the ER doctor showed up to give Calum a once-over.  Calum was sent for X-rays and we waited for one of the orthopedic doctors to get a look at them and come tell us the verdict.  The bone looked great on the x-ray and there was no sign that anything was amiss.  The ortho poked and prodded Calum’s arm, and said if there was any infection we would be peeling him off the ceiling, so everything looked good.  No one really knew why Calum was in pain, but there were a couple of theories.  Perhaps it was the nerve healing, since that can cause stabbing pains.  Later our chiropractor explained it could have been a blood clot that worked its way out by the time we got down there.  Either way, Calum was declared fine and healthy, and at 12:30am we were free to go.

Meanwhile, the storm of the decade had blown through several states, killed nearly 2 dozen people and left millions without power.  We had no idea.  The ER is like a tomb, with no windows or views of the outside.  The lights flickered a couple of times, but we didn’t think much about it.  As we were leaving, there were ambulances and police cars everywhere.  Half of Charlottesville had lost power.  There were massive trees blocking lanes all the way home.  It was unbelievable.  And I can’t believe we missed it!

Our original plan, before we even left Berryville, was to get a hotel in Charlottesville for the night so I wouldn’t have to drive back in the early hours of the morning.  About halfway down 81 South, Adam suddenly shouts, “The charger!”  We had forgotten the charger for the pump.  That meant we had enough power for his midnight and 4:00am infusions, but that would be it.  We couldn’t get a hotel because his pump would die before we could get home, and that would mean missing an infusion even though we had enough medicine bags to last us 2 days.  I drank my first cup of coffee in 6 months and drove from 12:30am to 3:00am to get us home.  We pulled up to the house, and something didn’t look right.  It was dark.  Too dark.  Oh… my… gosh.  The power is out.  We drove all the way home to get Adam’s charger, and we had no power to charge it anyway.  Son of a… gun.  We staggered in with all the bags, and collapsed into bed.  I set the alarm for 7:00am and prayed that the power would come back on before morning.  It did!  It came on at exactly 6:50am, and by 8:00am Adam was hooked up with new bags and marooned on the sofa with his pump plugged in.  And there he sat all morning, except for twice-hourly trips to the toilet.  Thank goodness we didn’t have to go anywhere that day, so after I picked up Ali and Finlay we just crashed on the sofa and watched movies.  It had been another adventurous end of the week for the McArthur household!