Short intro about the blog

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

Sunday, July 22, 2012

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.

Friday, July 6, 2012

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!