Sunday, April 26, 2015

RSV is Brutal

RSV is brutal.  I can only imagine what our little ones go through from watching an adult go through it.  All I can say is, wash your hands before you pick a baby up....and spare that baby the misery of what might be a little cold for you.  The scary thing about RSV in small infants is, they can become so exhausted from labored breathing that they will just stop.  I have watched that exhaustion for over 2 weeks.  Julie was admitted for a week in order to receive an antiviral treatment for the virus.  She was treated with Ribavirin in a tent that fit over her bed.  We coined the name of the treatment "bubble boy Robocop."  It really wore on her since she had to sit in this tent for 2-½ hours 3x/day.  No one could be in the room with her since the drug was so potent.  She would coordinate visits from me around these treatments.

Wednesday night April 8, I needed to get up there and re-access her port which sits under her bicep instead of on her chest cavity.  It had been 7 days since it was changed.  It is a difficult access and she has had one too many experiences of people missing the port and prodding multiple times to access it.  Capable people are there to do it, she is just done taking her chances.  All afternoon the nurse was asking her when I could come up that night.  It was an especially busy day.  I was working from home with the boys playing downstairs.  Our nanny that day had to cancel.  I had already gone up for a visit during lunch and left the kids with a neighbor.  Around 7:00 I was still working like mad.  The nurse kept asking, so the texts kept coming.  For whatever reason, after calling 7-8 people I found a friend to come chill at the house after the kids went to bed.  I was on a mission to take care of the port.  Typically to access, you have to do it between treatments.  Among other things, Julie was on fluids and some antibiotics that were timed.  For all the hassling she received throughout the day, I was surprised to find, that when I arrived the lidocaine cream had not been ordered.  It was necessary to numb the site before I re-accessed her.  It had to be ordered up from pharmacy.  We waited for about 20 minutes.  Frustrated I walked out to see if the order had been signed by a physician in the system.  I confronted the CNA who requested the order, to see why it hadn't been ordered earlier in the day when it was known it was needed.  Instead of listening to my frustration, she told me "I'm not a nurse, you will have to talk to your nurse."  True as it may be, this just inflamed the situation.  The "its not my job" attitude is something that has always has rubbed me the wrong way.  To add insult to injury, she was standing up and walking away to avoid the confrontation.  I am an intense guy, but I'm not mean.  I just wanted some dialogue.  If you can't communicate with your patients and their families about issues in your hospital,  you should probably think about a different career.  Most of the time, when we are frustrated or upset with the hospital or staff,  there is a solid reason for the problem.  Even if it exposes the holes that naturally occur in any large organization, communication will most always temper a frustrated patient or family.  Ironically, that night is when I updated this blog last.  Mentally it was a marathon day.  There have been many of those lately.

That week, Julie's oxygen dependence was as high as 8 lpm and by Thursday it had made it's way down to 4.  For all intents and purposes,  things were on the mend.  She was going to be discharged on home oxygen, something we haven't had here since pre transplant in March of 2011.  It was not a big deal since she appeared to be improving.  She came home that Friday April 10.  We very quickly got into a routine.  I would come in her room and pound on her back giving her CPT (Chest PhysioTherapy)  when she did Albuterol and Hypertonic Saline nebulized treatments 3-4 times a day.  This helps break up any chest congestion that may be in her lungs.  Her lungs function as healthy lungs, but she is so immune suppressed and knocked down from the chemo, that it takes longer to heal than normal.  The weekend was long for Julie.  She was finding it harder and harder to breathe each day.  She had the concentrator turned all the way up at night.  The first night we even used some E tanks to give her better oxygen saturation.  Sunday she decided to go to church for the first hour.  Several people were floored to see her there.  I think she wanted to have something normal happen for a day.  One friend came up and said "What's goin' on?" Julie replied "Just breathing."  We all laughed, only realizing how much truth there was to her statement.  No drama, just telling us like it is.  It took everything to get there and get home, just for one hour.  Monday came and she was still on oxygen.  We had the home care company bring out a concentrator that would put out a higher flow.  By then, her dependence was up to 6-8 lpm.

When she returned to clinic on Tuesday April 14, she was running a marathon.  In fact, since that Saturday she had a heart rate of about 110 and several low grade fevers.  She was very labored in breathing.  Her emotions were close to the surface as she focussed on just breathing.  She was relieved to some degree that they were going to admit her.  The lack of improvement and the negative direction things were going were really giving her anxiety about the danger to her graft (lung transplant).  Long term inflammation can lead to rejection.  We had asked for the typical anti inflammatory regimen of steroids after she left the week prior.  They gave her a small dose of prednisone that didn't seem to affect the inflammation.  They admitted her to the UofU so her pulmonary doctors could follow her.  She was asking for the typical 1g of Solumedrol (steroid) to really knock the inflammation out.  The reservation Huntsman had was the immune suppression steroids give that could be a breeding ground for the Lymphoma if it was still in her body.  It is truly a benefit risk analysis each week.  We have tradeoffs each way.  Give steroids, and allow lymphoma to grow aggressively.  Don't give steroids and keep the lungs inflamed leading to further infection and inflammation, risking rejection.  The pulmonary docs decided to start with some broad spectrum antibiotics since that was the simplest approach with the lowest risk.  The RSV had appeared to have in part led to a bacterial infection.  Two days later this was confirmed with the culture.  I spent that first night with her.  She asked to have bi-pap to help her sleep and heal.  She knew if she was able to sleep deeper, her body would heal faster.  That night we saw her heart rate come down to the low 90's.  It appeared the antibiotics were helping and she was healing to some degree.  The next day her heart rate was under 90 and she was only requiring 4 liters.  She took 3 walks that day.  She always tries to be up if she at all can bear it.  All she felt like doing was resting, but she mustered up the strength to get up and walk to get the air moving.  The discipline of a cystic kid turned adult; They learn through experience the power of perseverance.

I had a neighbor come to the house again that Wednesday after my kids were in bed so I could go see her.  She was visiting with my Sister-in-law when I got there.  She seemed to be in much better spirits, less defeated and more up beat about the days accomplishments.  We were told they were moving to another room in the Pulmonary unit.  This was over where all the CF patients were, where we used to stay years ago.  After waiting for a few hours, the normal snail communication of orders and necessary sign-offs came through and we were able to move.  They took us to a closet they called a room ;).  We have been spoiled by the newer facilities up at Huntsman.  When I arrived home, I found Charles sitting on the kitchen floor.  My neighbor friend Joe, was at the kitchen sink washing vomit from a myriad of clothing and bedding.  I was in shock at what must have happened.  I had sent him a text that I would be another hour and he had said. "Don't worry about me..."  Little did I know that he had just cleaned up enough food to feed his entire family, only it had come out of my 6 year old Ben.  Now some of you may be on the verge of vomiting as you read and imagine the scene, but as a Dad, I have to say I was actually a little proud.  That kid had eaten like a horse that day.  I was sad to hear he had a yard sale of vomit on his bed and a little mortified my neighbor was stuck cleaning it up.  Come to find out, Joe had sent me that text and just after, Charlie the 15 mo old did the same thing in his crib.  There was already wash in the washer, and he was hand washing the rest so it would be ready for the next load.  It honestly couldn't have happened to a better dad out there.  He handled it just like I would,  took care of my boys, and got them back to bed.  After all, as he said, "Its not the first time I've cleaned vomit."  He's a champion.  As he was leaving, I heard the wailing from the downstairs.  He almost looked as if he wanted to get right back in the battle.  I relieved him and sent him home.  Sure enough, we had another yard sale on the new bedding.  Keep in mind, his twin...sleeping through the whole thing.  Jack allowed me to stand him up on the side of the bed while I quickly changed the sheets and got him back in.  I am laughing as I am writing this cause it just couldn't get any worse right?  Well Debbie Downer is here to stay so sit back and get some popcorn.  It gets better.  I spent the next hour consoling, cleaning,  and washing various articles in the home.  I managed to put a red comforter in with a white sheet...yeah it's pink now.  All the while Ben was in the shower...for the second time in an hour.  After getting out, he had one last solid hurl, this time in the toilet.  I decided to put him to bed on the couch.  I gave him a scum bucket (that's just what we call a bowl to hurl in during the night) and some saltines and told him to call for me if he needed me.  He had a few more dry heaves but was done after that...so I thought.  I don't recall when Jack had it, but it was the week prior when Julie was still admitted.  That is the true silver lining in all this.  Julie avoided the vomit and was at the hospital both times my kids hurled.

That Friday I was able to get out and have some fresh powder on the snowmobile. The boys were at school, Alta had just over 3 ft of powder and it was supposedly a big Central UT storm.  I had only 2 hours to ride in the morning but it really did something for me.  It was only about 8 inches where we went, but it was great to get out.  I felt I could face all the vomit and problems the world could throw at me.   So here it is...I came home to find a letter from the IRS auditing my tax return for 2012.   Initially, I had an oh crap moment.  After it settled in, it just became another deadline.  After all,  it is bound to happen to everyone at least once in your life, so why not have it happen when you are all but numb to any shock and stress.  I started to laugh at the irony.  It could be far more stressful were it to happen this time last year, when there wasn't a care in the world.   When I received this text from Julie after watching her run a preverbal marathon for days on end, the audit became background noise: "I'm not really feeling short of breath like I was before."  Every stress dissipates when the one you love is improving in this long fight.  She came home the next day.

Last weekend was still touch and go.  Every time it looks like she is improving, it ends up being nominal at best.  I spent my morning doing wash and disinfecting the nobs and bathrooms.  She had me wash the duvet cover even though it had been cleaned the day before.  I couldn't argue, she just spent two unplanned weeks in a row at the hospital.  The whip was out and it was crackin'.  Clearly she must feel better if I am now an indentured servant again right?  Well, that night after insisting Ben eat his dinner, he hurled at the counter.  This bug was hanging on.  Julie couldn't stay far enough away from the kitchen.  She still had a low grade fever so luckily she was in her room anyway.  After cleaning it up and going through the normal evening routine, we retired.  Only a few hours later I woke up with a lull in my stomach.  At first I wrote it off to heartburn.  It took me out of bed and into a soaker tub in our basement.  I couldn't get comfortable.  I ended up just praying to have it taken away, knowing full well that as soon as I hurled I would feel better.  The empathy this was teaching me for my children and more importantly for Julie was palpable.  I hate this feeling.  You just want to die if you are to go on feeling this way indefinitely.  Luckily, it only lasted about another hour and then the deed was done.  I quickly fell asleep after that.

So there we were.  Julie was home, at least 2 of us were sick and the other 2 were showing signs that the vomit was only the beginning.  We isolated ourselves that next day and I thought I would have a good time watching an old Chris Farley movie Black sheep with the boys.  It was pretty much me laughing and turning around to stone cold 6 year old faces.  We didn't make it all the way through.  Julie was feeling lonely and still a little feverish.  The O2 had climbed back to 6-8 and she was getting very discouraged.  We decided to take a little walk at  Canyon rim park.  Seeing the boys play and be at the park was really nice for Julie.  Watching Charles face as he goes down a slide is a sight to see.  He can't get enough of it.  The secret with Julie when she is feeling down, is just be with her.  It is so therapeutic for her to be out and with the family.  We went to her parents to celebrate her mother's birthday.  It was nice to be with everyone and have Julie really feel of their love.  At the end of that night she asked for a priesthood blessing.  In the LDS church, any worthy male over the age of 18 can give these blessings by the laying on of hands.  I have been doing it on and off since that time in my life.  I gave her a blessing that will go down as one of the most unique blessings I have given.  As I started, I had the distinct impression to bless her to be healed from this ailment.  I resisted saying it because I wrote it off to my own will.  It kept coming back and I felt impressed to say it.  The blessing really brought comfort to me and Julie in the sense that it explained the purpose of the problem she is experiencing.  As she drew upon her Savior for assistance and help, He would take this yoke or burden from her.  Throughout last week, I frequently found her on her knees, even when she was exhausted.  Sometimes Julie will just throw her hands over to mine when we kneel down for prayers at night, so seeing her on her knees so frequently was moving for me.

Julie had another fever break as she frequently has that Sunday night to Monday April 20.  In the morning, she sent me this text: "I can't really concentrate on anything other than breathing."  She was crying.  She was scared, anxious, tired, defeated, and discouraged.  Again, each time she was feeling a little better, she felt worse later.  She received a very nice card from my Grandma Mona Layton that day that seemed to turn her day around completely.  Right now, her appreciation level is so high and so deep.  That day was a rough one for all of us.  I was still not feeling well, trying to work.  The boys were being 6, not obeying like they normally do, and Charles was officially sick with an ear infection after I had taken him to the doctor.  Julie only felt frustrated since she couldn't physically come out and help and it was too risky.  She had her oxygen up to 8 lpm at times when we would walk.  When we were on one of these short walks to the corner and back, I asked her, "Do you believe in the healing power of the priesthood?"  Of course I knew her answer would be yes, but I think the two of us were beginning to wonder what was it about that blessing on Sunday that wasn't adding up.  She knew she had to do her part and work and pray in order for the blessing to come to pass, hence the frequent times on her knees.  Wednesday we had a clinic visit with Julie's Transplant team and Dr. Cahill.  Chest x-rays had become worse than at discharge the week before, she was on about a week of antibiotics and she was still fevering and short of breath.  Dr. Cahill wanted to bronch her to see what else they could find.  She considered taking a boipsy from the lungs, but ultimately wanted to just see, and take samples of congestion in the lung.  During an bronchoscopy, the lung is calmed with a nebulized litocane treatment.  This prevents the patient from excessively coughing.  They also give her the Michael Jackson drug to partially sedate her.  She is awake as a camera goes down the throat into the lungs.  They inject saline solution into one side of the lung and suck it back out.  With the saline, comes sputum cultures from deep inside the lungs.  This is where the inflammation is. Possibly it's an independent infection from what is colonized in the larger airways.  This is what we are currently treating with antibiotics.  Julie's lungs looked very clear.  Low inflammation in the airways with very little "gunk".  However, because of that, the Dr. suspected inflammation in the smaller airways. There were a few samples of sputum that came up so we will know in a few days if they have something different growing.  That night Cahill put her on a larger dose of Prednisone.  She is still currently on it and it has made a marketable difference.  Tonight at my parents she was on ½ a liter while sitting on the couch.  She is asleep on 2-½ lpm as I type this and that may be overkill.  Clearly a large contributor to this has been inflammation.  We partly wish we were on it sooner but the course we took slowly helped and was the lowest risk course of action.

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Julie still gets sad she can't hold her baby or get close to her boys.  "The Jarle" has turned completely into a daddy's boy.  He crawls to me like a little puppy ready to go for a ride.  Today while I was at school she opted to not call my mom when he woke up from his nap and just had him here scurrying on the floor.  She told me he was next to her chair on the floor when suddenly he saw on the table across the room, a pink beanie.  He scampered across the floor as fast as he could move to reach as high as he could reach to pull it off.  He scampered back and reached up and handed it to her.  He is the best.  He takes all the stress away from all of us.  He has been the light that has stamped out so many dark moments. He keeps all of us laughing and doting on him.  He adores his older brothers and they literally will entertain him for hours.  They are my babysitter more often than not.  The boys have really risen to the occasion and adapted to just help out.  They have made it possible for me to continue my professional life and school life at night.  They have taken the little moments in the evening I can give them and not complained.  We have had some ugly moments of stress and frustration at our house and they continue to roll with the punches (not literally).  They have taught me to love first.  Even at times when they are not eating the generously given food from our neighbors and friends and I bark at them to eat, they forgive me quickly.  I am constantly thinking about the mercy they give me as a father and how fleeting it will be in the future.  I am learning complete patience from these little men I call sons.  My love for them has never been deeper.

I stand here alone at times despite my knowledge of the Savior.  I watch as my wife suffers and I cannot take it from her.  I can only imagine the pain of our Father in Heaven as He watched His Son Jesus Christ suffer.  It is agonizing at times to not be able to intervene and take it away.  Julie at times has to bear it, as do we, as individuals in this family.  People can lighten the load, burden, and take some of the stress that is added to our lives.  But ultimately we, and she must go through this.  Julie frequently reflects on the patients out there bearing this without support.  It moves her to tears to think of the dark moments they must feel bearing this without others close to them.  As I said earlier this year in a post, it is at these moments when your back is against the wall, that you really find out what you believe in.  For some it is when they discover what they believe in.  It is not a hope, or a figment of an imagination, but it becomes knowledge.  You have no choice but to pray to that God you were taught would listen.  You find yourself relying on the scriptures you have read and the subtle thoughts that are brought upon your mind.  It is these small moments that you see the small miracles of a higher power.  It is not therapeutic only, but it is necessary for our happiness.  When we are brought to our knees in desperate times, we seem to pull out of those times.  We all do.  Is that by chance?  I believe it is a fruit of our divine nature.  I believe it is a fruit of a divine Father in Heaven.  I cannot take pain away from my children, but I always try to comfort them, and teach them.  He is doing the exact same thing.


Wednesday, April 8, 2015

Hump Day

Well hump day came and went and wasn't cause for much celebration.  The morning after the last post about a month ago, Julie woke up with a migraine that was so bad she felt nauseous.  She started to vomit and it continued through that Wednesday.  She wasn't able to take any of her meds.  I can honestly say, I don't remember seeing her so sick that she couldn't take meds.  She finally got a few down with some additional anti-nausea meds prescribed late in the day.  The next morning she seemed to wake up with some improvement, but ultimately it was a repeat of the previous day.  Just 2 days after she came home, she was re-admitted.  She was so bad she couldn't take her meds.  At first we both just thought it was from the chemo alone.  While that certainly could have been a contributing factor, we later learned it was most likely caused by a spinal leak from an intrathecal (similar to a spinal tap) procedure gone bad a few days prior.  Julie has to have chemo delivered to her spinal fluid because Lymphoma likes to go everywhere; after all its a cancer of the blood.  Luckily she only has to have it about 2x per hospital stay/drug regimen since there isn't cancer in the brain or spinal fluid.  If it were in her spinal fluid or brain she would have twice as many of these intrathecal procedures, aka Finkle and Einhorn according to Julie.  The procedure didn't go as planned since the room with the camera and equipment to get the needle in the right place on the spine was not available.  She had a well experienced physician poke and prod about 3x drawing back blood instead of spinal fluid till Julie had to pull the plug on him.  He asked if he could come an hour and she said to come back the next day.  I was out of town in DC at the time so she had to go it alone....she often does just by the nature of being in the hospital.  Luckily, the doc was very gracious the next day and apologetic.  He lined up the Fellow who had done it successfully the first time to have another go at it.  We were grateful he didn't let his pride get in the way; a true marker of the wisdom that experience brings a physician.  I was hearing about this all over text while at my work meeting.  Julie told her oncologist that the anesthesiologist that did this needed to retire;  "I'm sure he was a great doc in his day, but he's just old."  During a hospital stay later in the month he totally redeemed himself, and flawlessly did a procedure, this time with the camera.


I have only seen Julie suffer like that one other time since I have known her.  It was a few days after the lung transplant in 2011.  They had to keep the air moving in her lungs and she had to keep her new lungs clear of mucus that was partly from the surgical procedure and partly from laying down for over 24 hours.  They would have her nebulize an irritant called hypertonic saline to cause her to cough.  You can only imagine after being opened up across her chest, the pain of coughing was excruciating.  I remember her crying through that process as she bore it head on.  She knew she had to do it, so there was no question.  This experience was similar for me since she was not only nauseous, but the pain in her head was most likely caused by a spinal leak.  The fluid around her brain had leaked out of the perforation from a few days prior into the tissue.  When the fluid drains they can typically do a blood patch.  That wasn't an option since her platelets were so low and she was on a blood thinner at the time.  She had to just let it pass.  Once they admitted her, they were able to give her Ofirmev (IV acetaminophen) which was very effective at easing the head ache pain and some hardcore anti nausea to curb the inclination to vomit.
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That hospital stay lasted for 3 days and she was home on Sunday the 8th.  We were able to enjoy being with her for the first part of that week.  I had to fly out of town again Monday so during the time I was home, I was caring for her here and at the hospital.  The next stay was the M in CODOX M IVAC, her drug regimen.  This is the one that brings the mouth sores.  She went in on Friday the 13th not knowing they were admitting her for the next part of Round 1.  Julie sent me a text that afternoon that pretty much sums up how she has handled being away from her kids: "When do you plan on coming up?  Do you think Charles needs you more than me?..."  She is always putting her children first.  Even in the midst of the most suffering.  I made it up there that evening.  She was getting fed up with the strands of hair coming out.  She had kept it in a bun since Wednesday and started to take the bun out.  That bun was her last chance at glory.  It was hanging on and as she took it out the hair came out in chunks.  She had gotten her head around losing her hair since she had a few weeks to think about it.  Once it was constantly on her pillow, she was fed up.  I told her I would shave her and she could shave me.  "Are you serious?"  "Of course I am.  How can I expect you to go through that part alone."  We shaved and I couldn't believe how cute she looked.  Once she brought her head up from me shaving her, all I saw was her face.  Her head is tiny like the rest of her...or her hair was just thick.  I call her beetlejuice sometimes.  We asked a girl working to film it for us so I could share it with the boys later.

I slept over that Friday night and was pleased to meet our nurse the next day.  He was a friend to one of my buddy's in the neighborhood and I recognized his voice.  We had only met touring on skis in January with a few people at night.  It was nice to have someone familiar take care of my wife.  That morning I ate something that just completely took me down.  I was nauseous and vomiting.  I had to leave as soon as I was sick.  I spent the afternoon doubled over.  My mom came and took my kids while I laid in my bed.  Every noise in the house was amplified.  I remember just yelling from my bed "SHUT...IT!"  My poor kids just took it from the other room.  I laid there miserable and feeling guilty but relieved...I was able to fall asleep after she took them to her house.  Finally after about 6-7 hours of discomfort, I started to feel better.  It gave me some perspective of what Julie has been going through, though my bout was short lived.  Julie took care of me over text giving me pointers of what to eat and how to minimize the damage.  Glad I can have some empathy now in at least one field of suffering.  The boys came back home and we spent the evening watching old batman cartoons on YouTube for their "story."  They were in heaven.

It was during this stay that I believe the psychological weight of the suffering Julie was undergoing, started to take it's toll.  She was trying so hard to think about the blessings she had been given instead of the hard times that were present.  She was starting to really miss just holding her boys without reservation of getting sick.  She was very emotional that Saturday night talking to me about the boys and how grateful she was to be a mom to them.  I assured her that what they are experiencing right now is a spiritual insurance policy preparing them for their life ahead.  They see her courage, faith, and perseverance and they will never forget that.  She told me that bringing them to earth was "what I knew I had to do to give them life." At the end of the night of back and forth about everything she was so grateful for, she sent me these texts:  "I cannot turn off the water works.  I'll just pray.  Do you think it's the Chemo?"  I said, "You have taken on a lot.  Crying is ok sometimes."  Julie replied, "Maybe it's all coming out at once.  I hope I'm done after tonight bc crying just makes you puffy and not get enough sleep.  It does make you feel a lot though.  I love to feel."

The following Wednesday the 18th Julie was starting to get mouth sores from her Methotrexate.  "My mouth sores hurt so bad I can't even swallow my water.  I have them in my mouth and my throat.  Feels like a sore throat."  Just one week prior, she was saying how so far Chemo wasn't too bad and that other than the bout with Finkle and Einhorn (Spinal Tap) she was feeling confident.  Her stay this time was 6 days and she came home Thursday the 19th.  Luckily as miserable as it was to take her pills with apple sauce, her mouth began to heal that Saturday.

Sunday night the 23rd she began to feel fatigued.  It took so much to do so little.  She was feeling stressed since I was leaving the next day to go to Irvine for work.  I had my mom come over to help her Monday night and she was able to drop the boys at a neighbors while she went to the hospital to have her blood taken earlier that day.  They told her they were going to admit her the next day for the final regimen of the first round, IVAC.  She had to organize the schedule for the kids and it was somewhat overwhelming.  Luckily we have had an incredible neighborhood, friends, and family step up every time we need the help.  I have coordinated this up to that point for my travel, regular work stuff at home, and school every other weekend.  The outpouring of support really overwhelmed Julie when she saw it first hand.  After I came home I was able to visit her on Thursday the 12th.  I remember her just crying from the support from everyone.  She couldn't believe it.  On the surface you might read this and say to yourself, 'of course people will help.  You should believe it. '  People come out of the woodwork to offer, but this has been a long process, and actually calling people up and asking them comes with some apprehension.  We know people have many things to do, and as willing as people are, it adds stress to their lives.  Having a chronic illness, you have to bear that fact your whole life.  The last thing you want is to put someone out,...again.  When they are so willing and so available, I think the gratitude we feel is just overwhelming to us.  The apprehension of asking is washed away....so thank you very much.

As with the first two regimens of round 1, the actual chemo wasn't too bad.  Although having scheduled everything, this hospital stay she worried like any mother would.  She texted me about homework, Charles medicine, the laundry, people being late for the next person to take over; everything that she wanted to have control over, but had to give up.  She was calling every person that was coming to help and walking them through everything.  If I learned anything the first few hospital stays, it's that most if not everything goes just fine, with little collateral damage.  She started to feel emotional towards the middle of this stay again and they decided to put her on an anti depressant.  She took it for a few days but quickly came off.  She would feel drowsy, and it would relax her, but she would still have anxiety about the same issues and couldn't sleep.  We know it takes a few weeks of these meds to have their best effect.  However, it was irritating enough that she said she'd rather feel, then not.  She has been better ever since.

That Friday I decided to take my kids on a bike ride across the Bonneville shoreline trail to visit their mother at the hospital.  We left after dinner and it was a warm night.  We had to haul up a hill with their bikes and the jogger.  It took some encouragement, but once we were at elevation, they were loving it.  They kept talking about how we were taller than all the buildings.  They rode their little hearts out.  At one point riding up a hill I told them we may need to go back since it was getting late.  They started to pedal harder; they wanted to surprise mom.  We finally made the 3 mile ride there around 7:15.  Julie was surprised and elated.  It was really fun to do.  But I had to go back...and it was getting dark.  I had thoughts of riding through research park back to Hogle Zoo where we started, but remembered how there are few sidewalks on those streets.  I figured it would be better to go it in the dark on the trail.  The boys started to whine at about bedtime 8:00.  We still had 2 miles to go back.  They would push and then stop and say, "I wish I was in my bed."  I asked them if they saw any kids on the trail that night.  "No."  That gave them some pride and they pushed on.  Ultimately the melt down arrived.  We were getting close to emigration and it was dark.  I knew we would be just fine, but they were now cold, tired and ticked.  Some might say this was an epic parent fail...as one bystander called it, I say it's a man maker.  The next day they just talked about how fun the trail was and how they were the only kids up there.  (I recognize there's probably a reason for that.)  They did say they wanted a billion layers to wear next time we went though.


When Julie came home last Sunday, we were all so excited.  We had our mom back, including me.  She immediately started to nest and get what I thought was an orderly house, in order.  She was touch and go throughout the week with nausea, since the effects tend to be delayed a few days after treatment.  We took her in Monday for fluids, she was dehydrated; Wednesday for 2 units of blood, she had low hemoglobin, hematocrit and she was neutropenic (low white blood cells).  We sat and did a puzzle Wednesday night at home and talked about everything she was going through.  This last regimen really took it out of her.  She was defeated.  "I really thought I would be tougher"  she said to me.  I asked her if it was harder than transplant or CF maintenance.  She replied with tears in her eyes, "This is the hardest thing I have ever done."  I think we are so used to seeing quick results.  With CF, you produce results early in your hospital stay, with the transplant, you see improvement everyday post op.  With this, as soon as you have improved, you are ready for the next piece of the treatment puzzle.    We just keep looking to summer.

On Friday she went in for platelets and they admitted her.  She had no clotting ability, used all her white cells, and was fevering.  She was becoming so weak that she seldom answered my texts.  She was hoping to come home for Easter since she spent Thursday afternoon planning and shopping for the boys baskets.  Over the weekend, she got worse before she got better.  They gave her blood, multiple times, platelets to help her clot, but the white blood cells have to be made on their own.  They took a culture when she was admitted, and on Sunday we found out she has RSV.  The respiratory virus that typically affects children, also affects highly immune suppressed patients such as chemo patients.  They have to nebulize a treatment over 2.5 hours in a clear tent that makes her look like bubble boy.  The drug is called Ribavirin.  We call the treatment Bubble Boy Robocop.   When I saw her Sunday she was a little better, but still limited on what she would say to me.  She didn't have the energy to be irritated with little nuances at the hospital.  She was on 1 liter of oxygen.  That said, after having fevers that were not very treatable for 3 days, getting the news of RSV was a piece of relief.  We knew what was causing the problem.  She now had to go through Bubble Boy Robocop 3 times a day to help her body recover.

Monday night I went to see her and her breathing was even more labored.  She was now all the way up to 6 liters of oxygen.  I haven't seen her breathe like that since pre transplant.  She didn't have much energy to talk, but it was just nice to be with her.  She had started to make her own white blood cells.  Today her WBC was even higher.  With that, comes inflammation caused by the virus.  This is likely what is causing her labored breathing.  She went through the weekend worrying about rejecting her lungs and wondering why she was fevering.  Her pulmonologist assured her this was not the issue.  Her blood work didn't show it and her chest x-rays confirmed it wasn't rejection.  Now you can see why the news that it was RSV was so welcome.

Since most of my conversations these days feel like a wet blanket, here is the silver lining:

  • Julie is improving each day and it appears we have rounded the corner on this challenge.
  • Julie did Round 1 in half the time they told us it would take.
  • Her oncologist says that despite her current state, she is taking this very aggressive regimen very well compared to other patients.
    • The complications from the immune suppression of the chemo is routine.
  • Julie is still making hilarious comments: "What do you think is in your nurses fanny pack Julie?"  "Four sets of balls"
  • Huntsman staff is taking incredible care of her.
  • We are half way done with treatments.