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!

The Latest MRI

We got the call today from Dr. Barbara.  The tumor hasn't grown and there was no new enhancement.  But it hasn't shrunk, either.  The doctor said it was "good news", but I think Adam and I were slightly deflated.  I know that "stable" is good, and is a heck of a lot better than "progressing".  It's just... well... you know.

Adam will stay at the same dose and has been told just to keep doing what he's been doing.  If you know us at all, then you have already guessed that that isn't good enough for us.  We are going to kick it up to full throttle now.  This ain't no fooling around.  This ain't no disco, mate.  We are already trying to think of what we can tweak to give Adam the best edge.  I think Adam will be switching to the full-on hardcore Atkins as of tomorrow.  No carbs.  At all.  Meat will be his new best friend.  A starving tumor is a shrinking tumor, and that's what we want.  He's starting to drink green tea again with every meal, and I'm going to be looking into what herbs/vitamins we might be able to add in or increase.  We've been worried about Adam losing any more weight, so I hesitated to put him on a zero-carb diet before.  But, we'll just have to take the risk.  I'd rather have a skinny Adam than not at all.

Just when you think you have nothing left, and you can't possibly go one more step, that's when you dig deep down and find a well of strength you never knew you had.  That's where we are right now.  Watch out, because the game... is... on.

A Stream in the Desert

Two days ago I was struggling.  It was a hard day, emotionally and spiritually.  I felt overwhelmed with the weight that God has placed on me, my husband and my children.  I struggled with dark thoughts, and deep feelings of despair.  I cried… a lot.  Adam doesn’t have a lot of patience for me when I get in this sort of state, and after getting frustrated he started in with one of his pep-talks.  I was too tired to be defensive or argumentative, so I just sat there on the floor and listened.  He’s very matter-of-fact, my husband, and practical.  Falling apart emotionally doesn’t help the situation, so he doesn’t quite grasp why I insist on doing it. Call it a glaring difference between man and woman, I suppose.  We women cry because we need to.  It’s a release.  After emptying myself of all the tears I had, I felt better.  And Adam’s insistence on focusing on the positive helped…just a little.

After I managed to pick my worn-out body up off the floor, I started looking for some inspiration.  I went to the Bible, but decided instead to pick up a book passed onto me by a friend called Streams in the Desert.  There is a passage for everyday of the year, and I’ve picked it up a few times to read what that day’s passage was.  I found this:

“Poverty, hardship and misfortune have pressed many a life to moral heroism and spiritual greatness. Difficulty challenges energy and perseverance.   It calls into activity the strongest qualities of the soul.  It was the weights on father’s old clock that kept it going.  Many a headwind has been utilized to make port. God has appointed opposition as in incentive to faith and holy activity.  The most illustrious characters of the Bible were bruised and threshed and ground into bread for the hungry.  Abraham’s diploma styles him as ‘the father of the faithful’.  That was because he stood at the head of his class in affliction and obedience.  Jacob suffered severe threshings and grindings.  Joseph was bruised and beaten and had to go through Potiphar’s kitchen and Egypt’s prison to get to his throne.  David, hunted like a partridge on the mountain, bruised, weary and footsore, was ground into bread for a kingdom.  Paul never could have been bread for Caesar’s household if he had not endured the bruising, whippings and stonings.  He was ground into fine flour for the royal family… If for you He has appointed special trials, be assured that in His heart He has kept for you a special place.  A soul sorely bruised is a soul elect.”

I pondered that for the rest of the day, and went to check emails after everyone had gone to bed.  I read a message that mentioned Nick Vujicic, who I had never heard about, so I promptly looked him up on YouTube and watched an interview.  If you don’t know who he is, he was born without arms or legs, and is now a motivational speaker who travels the world.  In the interview, he talks about how difficult his childhood was, and how he had chosen to turn away from God because he didn’t understand “Why”.  But at the age of 15 he got his answer.  God chose to answer his question, “Why?” with another question… “Do you trust Me?”  Boy did that really hit me between the eyes.  I love God with all my heart and I believe completely that He has a plan for us.  I believe that all of this emotional bruising and beating is for a reason.  But, I’m impatient.  I want to know right now how this is going to end.  I want a document signed and stamped by God that promises me that Adam and I will share a long happy marriage together, that Ali will grow up to be a happy and functioning adult, and that someday Finlay will be able to communicate with words instead of sign language.  I want his promise that Calum will grow up unscathed from the pressure of being not only the oldest, but the only neurotypical child in his family, and I want to know that someday I will finally get some relief from my daily headaches.  Where’s my signed document? 

But, I realized that I don’t need it.  First of all, He has already promised us salvation.  This life may be hard, but we all have the comfort of knowing someday we can share in His glory, in His presence, in Heaven.  Eternity is much more significant than today.  I can’t change my situation today, no one can.  No one can make Adam, Ali and Finlay better today.  And if they did, would that make me whole?  I am only complete when Jesus lives in me.  And right now, He does.  Today.  That is all I need.  To help remind me of this, I have put a piece of paper above our picture of the Sacred Heart of Jesus in our kitchen.  It reads in large Sharpee-written letters, “Do you trust Me?”  I’ve been looking up at it probably every five minutes since it was placed up there.  And every time I look at His face and read that question, I can say with certainty, “Yes.”  Yes, Lord, I trust You… completely.

Oceans of Gratitude

I’m beginning to notice that my life is resembling what could happen if Mr. Bean married Little Miss Calamity.  I wonder if we need to set up a foundation, not to help people like us who need help, but just to help us.  This family requires teams of hardworking people just to get through each week.  I’m staggered by the crosses that continue to be piled on top of this house.  And continually amazed by the never-ending dedication and generosity of the people around us.

Thursday two lovely moms showed up in the afternoon to pick up my boys and take them to playgroup.  I can’t go until after 4:00pm, because of Adam’s infusions, but these moms have been picking up the boys and taking them right after lunch so they get to have a proper run-around.  It also gives me a little break.  I arrived at Barbara’s about 4:30pm, and the kids were having a ball.  I caught up with a couple of moms for a few minutes, when Calum came into the kitchen screaming.  I still have to force back the nausea when I remember what his left arm looked like.  The top half of his arm was bulging out over the top of his elbow.  And he was clearly in a LOT of pain.  I froze.  Simply froze.  I had no idea what to do.  Thank God one of the moms used to be an EMT, and she got down to work.  Someone got Calum a chair, and Kelly had a look at the arm.  Then she started instructing Barbara and Sam, telling them exactly what she needed.  They rushed around getting a makeshift board, ace bandage, ice pack and towel so Kelly could stabilize the arm.  I stayed by Calum’s side, talking to him and trying to comfort him the best I could.  Someone brought in some Arnica, and Sam got him a lollipop to try and distract him a bit from the pain.  At one point, Finlay came upstairs crying, and I saw out of the corner of my eye Sam scooping him up and taking him into the other room to sort him out.  Ali also came in very upset because the Wii had frozen, and Barbara ushered him back downstairs to fix it.  We discussed where to bring Calum, and Barbara got on the phone to find out if the Care Center was still open.  It wasn’t, so Kelly offered to call the ambulance.  After a moment’s deliberation we decided it was the best thing to do.  Melanie went out to move some cars to make way for the ambulance, and Luellen offered to follow the ambulance in my car so I would have it with me at the hospital.  We waited what seemed like forever, but was actually about 20 minutes.  When they arrived, the EMTs were truly impressed with Kelly’s work, and we had already taken a photo of the arm before it was wrapped, which was forwarded to the EMT’s phone.  Isn’t technology amazing?  He could then forward it onto the Emergency Room in advance of our arrival.  They carried Calum out to the ambulance, and Barbara filled up my water bottle (which is a small gesture, but so considerate I almost cried) and got a bag for Calum’s Pokemon binders.  We were off. 

At the hospital they were able to give Calum some morphine to help with the pain, but it didn’t help for very long.  The pain kept returning, and they needed to keep increasing the dose.  Finally, some evidence that he’s actually related to me.  Anyway, they rolled him into x-ray and we didn’t wait long for the result.  His arm was fractured above the elbow.  It was bad.  So bad in fact, that they couldn’t do anything for him at Winchester hospital.  The doctor informed me that we were going to Charlottesville.  I started at him blankly for several seconds.  My mind reeled.  I spluttered out, “I can’t go to Charlottesville!!  My husband… he has a brain tumor, and he needs his infusions!!  I can’t go, I just can’t!”  The doctor asked me if there was anyone that could do Adam’s meds instead of me, and I informed him that there wasn’t anyone else.  Then the doctor said something Calum will never forget as long as he lives… “If he doesn’t go to Charlottesville now he will lose his arm.”  Don’t get me wrong, the doctor was absolutely lovely, but his choice of words and in front of an 8 year-old were a big mistake.  Calum freaked out.  He was petrified that if Daddy didn’t get his medicines tonight that he would die, but he was terrified of losing his left arm.  “I don’t want Daddy to die, but what about my arm??”  He was crying and I desperately tried to figure out what to say.  I told him, “Don’t worry about Daddy, okay?  If he misses his medicines tonight he won’t die.  He will be fine.  The most important thing right now is fixing your arm, okay?  We are going to fix it.”  He calmed down and I tried to make sense of what was happening.  I suggested to Calum that we pray, so we did.  We asked God to make everything all right, to help with the pain, and fix Calum’s arm.  We both felt better afterwards, and Dr. Lovely came back in with a suggestion.  Can someone bring Adam and his medicines to me so he can come to Charlottesville with us?  We’ll be in a hospital, so if we need anything we’ll be in the right place for it.  I agreed with him, that it would definitely work, and the nurse went to get me a phone.  There wasn’t a cell phone signal to be had in the ER, so I needed the patient advocacy phone.  I called Barbara’s house and Sam answered.  I explained what was happening.  “I need someone to bring Adam here so we can go to Charlottesville, and I also need someone to watch the younger boys.  Can we make this happen?”  With an enthusiastic yes, Sam went off to discuss with Barbara what needed to be done.  It was decided that Barbara would keep Finlay and Ali overnight, but would need to go to the house to get some supplies.  Sam would come with her to help Adam pack.  Kelly’s husband was going to pick up Adam and drive him to Winchester hospital.  Done and done.  I called Adam and talked him through packing the bag for the trip.  “Go upstairs to the supplies box… no not the one in front of the linen closet, but the one blocking the top of the staircase… you need two sets of tubing and a Y-connector…  get an inch of alcohol wipes, and a big fistful of syringes… we need 4 big medicine bags and 1 small one… we’ll forget about blood work for the moment, we just need to focus on making sure you get your meds.”  I was so worried that we would forget something important, but there just wasn’t much time.  The transport people arrived to take Calum down, but I wanted to wait for Adam.  The man who was to accompany Calum knew about Pokemon and they started chatting away about who evolves into who and who does the most damage.  Calum was in heaven.  Finally, they couldn’t wait any longer, and we decided they would go on ahead and I would stay back and wait for Adam.  As luck would have it, Adam pulled up right as they were loading Calum into the ambulance, and he was able to give him a kiss goodbye.  Plim helped Adam unload all the bags into the car (it looked like we were going away for a week), and he handed me a ziplock bag full of cash.  One of the amazing moms started a collection for us, to make sure we had cash for gas, food, and a possible hotel stay.  I was so moved I started to cry, but I gathered myself together because we had a two-hour drive ahead of us, and it was already nearly dark.

The details at University of Virginia hospital are a bit fuzzy, but everything went very well.  Calum arrived safely, as did we, and he went into surgery about 1:00am.  He was out by 3:00am, and slept soundly until the doctors started their rounds around 6:30am.  Most amazingly, Adam didn’t miss a single infusion throughout the entire ordeal.  We changed his bags when we arrived in Charlottesville around 11:00pm, with me trying to prep bags on a flimsy folding table in a tiny ER room.  And we changed him again in the morning between Calum’s doctors visits.  The orthopedist was pleased with the surgery, and released Calum to go home a few hours later.  By 11:00am, we were on the road back home!

I let my friend Celeste know what had happened as we were driving home.  She offered to bring us dinner, and I gratefully accepted.  I had spoken to Barbara before we left the hospital, and the boys were doing great.  When we finally got home, I was so tired I could have died, and I collapsed into bed for an hour’s nap.  When I woke up, we changed Adam’s bags, and the three of us laid on the sofa watching movies waiting for dinner and for the little boys to arrive home.  Barbara arrived first with Ali and Finlay, and brought bags of grocery items and diapers.  She does this wonderful amazing thing for me, where she cuts up loads of different vegetables and puts them in plastic containers and jars for me.  It has got to be the coolest thing ever, and I thank God for her!  As Barbara was walking out, Celeste was coming in (we really need to consider a revolving door for this place).  She brought rotisserie chicken and tons of salad veggies and cut up fruit.  We ate like kings.  Between the two women, they provided nearly a week’s worth of groceries, which is a gift in and of itself.  I am still shattered from the hectic weekend, and it’s an absolute God-send that my fridge is still packed and I didn’t have to go grocery shopping today.  Tonight’s dinner is courtesy of another lovely friend who came over today to help prevent me from running off and finding a new family.  Or jumping off the roof.  Depending on the hour, I oscillate back and forth between the two options.

As I sit here writing this post, I’m overwhelmed with gratitude for all the people involved with Thursday’s adventure.  And this only shows the tip of the iceberg.  Since Adam’s hospitalization in December, countless numbers of people have brought meals, donated money, sent cards, offered to pray, watched the boys, transported Adam to appointments, delivered blood samples to the lab, and taken the time to read my updates on Facebook and respond to my posts.   We created a Wall of Gratitude, which consists of a poster board mounted in the hallway.  Anytime anyone has done anything we have added their name to the board.  Chances are you reading this are already on there.  It serves as a reminder of just how massive the Body of Christ is, but it is also my way of saying “thanks”.  I have a confession:  I am absolutely abysmal at writing Thank-You cards.  I just don’t do them.  Ever.  But, please know that every form of help that has been offered during this trial has been very gratefully received.  And I pray for all of your intentions every time I pass that poster board. 

Two Tumultuous Weeks

It all started on a Friday afternoon.  The clinic had been trying to reach us and had left two messages, but I was out and didn’t check the voicemail when I got home.  At 6:20pm we got another call, and this time we were all home and Adam answered.  It was someone from the clinic… we never found out exactly who.  A doctor’s assistant.  She explained that Adam’s chloride levels had been steadily decreasing over the past week, and they had reached quite a low level according to that day’s bloodwork.   She had already consulted with the oncologist at the clinic, and they agreed that Adam should go off treatment and receive some IV fluids to try to correct the imbalance.  It being Friday after hours, we would really have no choice but to go to the ER.  The woman explained that she was sorry we needed to do this, but it was important that we get the fluids as soon as possible, and have another bloodtest done to ensure his levels were back up.  We arranged for the kids to spend the night at a friend’s house (their first sleepover at a non-family member!) and we went.  We got to the ER around 9:00pm, and you know how those things go.  We finally got into the back after over an hour’s wait, and then it took ages to actually get someone to hook up the IV bag.  The drip lasted over an hour.  Then we had to wait for bloodwork.  Adam meanwhile missed his 8:00pm infusion, then his 12:00am infusion.  We were both beyond exhausted.  Finally we got the news that his chloride was back up and we could go.  We got home, hooked Adam back up to his pump, and crawled into bed around 3:30am.  It was so hard setting that alarm for 6:00am!  I did actually get up, and managed to disconnect Adam, flush his catheter, prep his bags, program the pump, and reconnect whilst in a state of zombified bleariness.  I collapsed back into bed, and we both slept until 11:00am.  My first lie-in in four months!!  The rest of Saturday was a blur.  It was like the worst jet-lag ever.  We spoke to our chiropractor, who suggested that perhaps the flagging chloride levels were due to over-hydration, and we agreed.  So, the rest of the weekend we were going to make sure Adam didn’t drink too much water, because we were NOT going back to the emergency room again.  Sunday was really disorganized and chaotic as we both tried to function.  Just one late night was enough to really mess the both of us up for two days.  Monday we finally seemed to get back to normal, but Adam was starting to feel a bit thirsty.  In an attempt to quench his thirst without guzzling water, he spent the evening watching bottled water advertisements on YouTube.  Now, keep in mind he was still drinking obscene amounts of water.  We just cut back a little (which we thought was the right thing to do), and he was taking in 10 liters a day instead of his previous 12.  What made things really frustrating was the stupid three-day holiday weekend.  Adam really needed to have bloodwork done on Monday, but being Memorial Day, everything was closed.  By the time we got bloodwork on Tuesday, things were not good.  We got a call from the clinic (our normal nurse, thank God), and she told us that Adam’s sodium levels were sky-high.  Adam was feeling really sluggish, which was a telltale sign.  She explained that if we didn’t get Adam off his medication immediately, he could slip into a coma.  Holy cow.  When she asked what happened, I shared the story of our nightmarish weekend.  She told me that if Dr. Barbara had been in the office on Friday, she would NEVER have told Adam to go the ER for something as insignificant as low chloride levels.  “Low chloride we can live with,” she said, “But not high sodium.”  So Adam was advised to get back up to 12 liters of water a day because that had been working so well for him.  The bad news was that he would have to come off his medication for a full 24 hours!  So he had already missed 2 infusions on the Friday night, and now on Tuesday we would be missing 6 more.  I was so frustrated.  However, there was a silver lining.  NOT having to change bags for 24 hours was like a luxury vacation.  Adam slept really well, and only woke up once or twice to pee.  And he wasn’t plugged into the wall, so he could actually use the toilet!  Hurray!  We both caught up on much-needed sleep, and enjoyed the mini-break, trying not to think about how the lack of medication might be affecting his cancer recovery.

The rest of the week went by relatively quick.  Just the usual intensely-scheduled daily routine.  Now with three bag changes a day, things are so tightly packed in.  I don’t sit down…. ever.  For some reason (call it PMS) the weekend was a bit difficult.  I just felt a bit overwhelmed and frustrated with the daily pace around here, but I’m powerless to do anything about it.  It is what it is.  Sunday I get a call from my sister.  She has been graciously picking up our dirty laundry on Wednesday mornings, washing-drying-and-folding, then returning them to me either the same day or the following morning.  Well, her business has really picked up, and she’s struggling to fit in her own family’s laundry let alone ours.  So regretfully, she has to stop.  Crap.  Monday was extremely hectic as I had two meetings at the school starting at 8:30am, then grocery shopping and a ton of errands.  I was exhausted by the afternoon.  We have a friend who dutifully comes over on Monday and Friday nights to wash the dishes, clean the kitchen, and mop the floors.  I couldn’t live without her, and I thank God for her every time she comes over.  However, due to her own medical crisis, she was unable to come on Monday night.  Our “hell hour” is usually from around 3:00pm-4:00pm, which is when Finlay wakes up from his nap and screams like he’s on fire for an eternity.  The older boys want snacks, Adam needs a bag change and his protein shake, and I’m trying to start dinner (we eat early around here).  I really struggled to keep it all together that day, but after the boys were bathed and in bed I managed to survive until the end of my day, which didn’t come until after way past 11:00 since I had a kitchen to clean.  Then Tuesday hit like a ton of bricks.  In the morning, the mortgage company called offering us a refinance.  It was a great deal, and I was happy to jump on it.  Too bad it took 4 HOURS of my day to deal with the phone calls, emails, account set-ups, printing problems, scanner failures, and phone messages to make it happen.  The daily “hell hour” nearly killed me, and I ended up a shaking sobbing mess on the floor.  In all the hubbub, I hooked Adam up for his afternoon/evening infusions, but never switched on the pump.  At 10:30pm I go to disconnect him, and discover a totally full medicine bag in his Camelback.  He missed two infusions.  I lost it.  I was up until the wee hours of the morning feeling like I accidentally killed my husband, and sobbing uncontrollably.

Wednesday morning was a blood run, but I didn’t realize that I hadn’t scheduled a runner until I woke up that morning.  Crap.  Now I had to throw the kids in the car and go there myself, but the consolation prize was a morning playdate at one of my favorite people’s house.  I relaxed for a couple of hours and enjoyed myself for the first time in a long time.  But, Wednesday afternoon was hell as usual and I really struggled to make it through with my sanity intact.  Thankfully, three days of awfulness made way for an uneventful remainder of the week, and I’m able to report on the craziness from the comfort of our home, and not under surveillance at a psychiatric institution.  Throughout all of this, Adam has remained and always will be a beacon of positivity.  I hate that he’s the one with the cancer, but he also has to scrape his caregiving wife up off the floor at least once a day.  He feels great on the maximum dose, and continues to run his business and care as much as he can for the kids.  The next MRI is scheduled for the 21^st of this month, and we are looking forward to getting it over and done with.  No expectations this time.  But, I think mentally I could really use a positive result!