Thursday, July 30, 2015

PET Scan Post-Chemo

It's typically a good sign when I don't post often.  The daunting task to be thorough, often has me putting this off just to lead to a longer post.  I'm sure many out there see the Facebook posts about updates, go to the blog and take a quick scan for the basic facts simply because my posts are like short chapters in a novel.  But in the words of Clark Gable, "Frankly my dear, I don't give a damn."  Better to be thorough to remember the impressions and experiences as I/others read than to use brevity.  I had a relative once tell me that short often posts drive the most traffic.  I replay the previous quote.  Take it or leave it, this is primarily for my boys.  Their memory of this experience will be limited with moments of clarity, but their very personalities have been shaped by it.  I have seen from a young age their ability to adapt to new people and situations develop because of their surroundings.  It's quite remarkable really.  What might seem daunting to an outsider for a child to experience: the fragmented days, limited time with their mother, limited experiences in sports or other activities, multiple caregivers, etc; has turned out to be a pretty adaptable experience for them.  Anyone who has seen our baby Charles this year has seen a true daddy's boy if I must say so myself.  The kid absolutely goes bonkers when I am in view or in audible distance.  Last Wednesday July 22, we had an early morning procedure and had to have our kids watched overnight.  As we dropped them off at my brothers home that night, the boys and two of their cousins were doing chalk art.  As he was sitting on the sidewalk watching us pull out of the driveway, he had a look of acceptance on him.  'It's okay, I'm with my brothers, and these other little people seem familiar to me.'  There was no longing or waddling to the car, he just looked at us as we said goodbye to him...and it was past his bedtime.  I have seen him take comfort in his big brother's presence over the months as he is moving from being a baby into a toddler.  Jack often says, "He just loves you so much dad.  Every time you are in the room he just wants to be with you."  I have some serious adjusting to do about 10-15 years from now.  For now, I am soaking it up.  While he used to come after me when he heard or saw me, now I can yell to my boys asking about Charles and he will continue to play with them.  Sometimes this is for extended periods of time.

The twins have also grown with this experience.  They take an active role at looking after him while playing.  They watch what he is doing, attempting to put in his mouth and we can hear them parenting him from a distance.  All 3 are building a bond that will be with them forever.  That said, it's not all peaches and cream; Ben got in the car and just smashed a hat against Charles face the other night.  After asking why he did it, he gave a typical 6 year old response with a shrug of the shoulders.  A few weeks ago while playing with the hose in the back yard, Jack pointed it right at Charles face after he had been laughing at the random splashes.  It kinda reminded me of that guy spraying the kid in Billy Madison.  At times I feel like a coach parenting these boys, raising my voice telling them things like all we have is each other, motivating them, telling them this is forever and that friends will come and go.  I also took a line from my cousin Spencer, "I've never been a dad, and I am just learning, just like you."  It seems to even the playing field when I am upset with them.  I do notice the twins are pretty tender at times.  They want my attention more than ever right now.  One time at a family camp out, Ben was at my side telling me he wanted to play with me instead of doing the activities.  I was preoccupied with something else and encouraging him to join in the activities and he burst into  tears; "But I just love you so much!" he said.  I was crushed.  Jack constantly is asking to play or telling me about something his brothers said or did.  He too will break down at times.  Tonight he burst into tears when I left to get some prescriptions.  "But I wanted to play pass!!"  He was dying to pass the football.  He and Ben seem to understand and take what they can get.  I always try to give them the attention they need.  The common thread is it usually happens when they are hungry or tired.  But I have the clarity to recognize that it also may be their way of expressing what they are going through.  I ask them a lot of questions about what they think about what is going on, if they are worried, if they have any questions.  They pray for her every morning and night.  Sometimes its to get off oxygen, sometimes its to not get cancer again, and sometimes its to not get sick again.  We talk a lot about mom and the therapy she is getting.  We are often asking them to be quiet and talk softly.  They are still loud as hell.  Julie texted me she needed a muzzle for them the other day.  Lately she's been threatening to carry around a squirt bottle to spray them in the face when they yell.  We are top notch parents over here...but after chemo, her hearing is sensitive.  All in all things are pretty normal on the parenting and family front.

About a month and a half ago, Julie went through her last round of chemotherapy.  It was one we were reluctant to do.  The blood work had looked good since the second round, and there was no empirical data either way regarding the outcomes if we finish what would be the 6th round.  It was a choice between two bad deals.  Finish the rounds and possibly do further damage to the already delicate lung graft, or call it and risk the cancer coming back with a vengeance.  We chose to finish because of the lethal nature of this aggressive fast growing cancer we had seen once before.  Julie's Plasmablastic Lymphoma grew in Julie in a matter of days when it came back just 3 weeks after the removal of the mass from her bowel in January.  We had experienced that vengeance and wanted to limit the possibility of that happening again.  They luckily did an 80% dosing and the hospital stay lasted from Thursday June 4 to Tuesday June 9th; 5 days instead of 8.

After Julie came home that last time we were once again adjusting our volume, chaos level, and cleanliness.  Julie was parenting the boys (and me) through text to me. Her resting heart rate was 115 and that was burning her caloric intake constantly.  She went through some times of second guessing that decision of finishing the last round, especially as she suffered the days after the treatment.  Chemo treatment is bad enough, but the 2-7 days following are brutal.  That is the point where your body feels the effects of wiping out all your disease fighting white blood cells,  and you hit your nadir.  This is the low point of your blood counts.  It was almost inevitable she would be re-admitted after each treatment due to a neutropenic fever.  This time it looked like we were in the clear.  However, she was exhausted.  As anyone who has been through chemo or any other experience of utter depletion of energy, emotions can be very close to the surface.  Julie told me several times after that last round that she didn't want to forget this feeling.  Feeling so close to the Lord, and feeling so grateful for everyone around her.  She sent me this text after we had a heated discussion both in person and via text two rooms away about the boys and iPad time.  (Surely many parents out there are wrestling with the right balance of screen time...)


This thread was followed by several imogis indicating crying from Julie.  I appreciated the gratitude she shared with me though.  It was always a stress to call one of the many people willing to help us.  We usually had little lead time because each day and each hour brought different symptoms to Julie.  

That week early in June, Julie mentioned she felt like she had pleurisy, inflammation of the lining of the lung, in her lower left lung.  We found out what it actually was 6 weeks later after her first post chemo PET scan.  I will get to that in a minute.  She was very nauseous when she would sit up that week, so she spent much of her time in bed.  These weeks after chemo were always challenging for me in balancing the regular work life with the needs of Julie.  The juggle of it all always let up after a few days, but at times, there were text threads that were not so peachy as the one I just posted.  As I mentioned in a previous post, anyone who pulls the threads in the future, may wonder if I was doing anything for her.  Instead of texting back I would just get up and take care of it.  That said, when I wasn't available, you can see it in the thread and Julie wasn't shy about it.  Many times when it was too much to juggle, we would have one of our mothers, aunts or close friends come over.  The service they have rendered to us and to Julie has been truly angelic.


What happened during her nadir that weekend was something that brought a lot of encouragement to us with regard to her lungs.  That Saturday June 14, she was off oxygen for about an hour and her O2 Saturation was between 92-98, and on Sunday she spent 3 hours off oxygen.  The reason this was so encouraging, is during the nadir, you have no inflammatory response because there is no immune response.  The fact that she was saturating well told us that the issues with her lungs were largely tied to inflammation and not scarring or infection.  This was very encouraging and was a fact we have fallen back on in the following weeks.  She was rightfully paranoid and a hypochondriac during this time since she was so susceptible to infection.  We didn't need another fungus or infection to further bring her down.  Several times during the treatment I would spend many days out on the couch.  Not because I was in the dog house, but because "you're such a disease Kevin!" (Home Alone 1990).  We had to mitigate risk.  RSV was a doozy and postponed the second half of chemo nearly 2 months.  Even though we were done with treatment, we didn't need any more set backs or risks added to her plate.  I was showering the kids constantly, they were locked out of her room, but occasionally she would come out with a mask on to see and be with them.   


She had to receive another transfusion that Saturday and luckily it dropped her heart rate to a more comfortable level around 100.  Still, she was burning everything she was taking in.  We were out on the boys first real trail ride on bikes in Emigration, with Charles in tow...or Bjorn.  The next Monday she had her blood checked again.  Her white blood cell count was less than 0.02 white blood cells per microliter (mcl).  Normal is between 4.5 and 10.0/mcl.  She had no way of fighting anything off if she caught it.  We were at that point of constantly being checked and occasionally getting blood or platelets.  She was on the borderline of receiving platelets that day.  That night just before bed she started to have a nose bleed.  Without platelets, there was no way it would stop.  We put tissue in, pinched it, but frankly we only had about 20 minutes to see if we could stop it.  We headed to the ER just after 10:00 pm.  We knew we needed platelets, but anyone knows that a visit to the ER is a minimum of 6-8 hours.  It was busy.  We got the results from her blood draw just after midnight.  So we spooned on a 2.5' bed till around 3:00 am when the platelets came for transfusion.  We made it home at 5:00 am to wake my dad after he had been with the boys.  That night sucked.

After a day recovery from an all nighter but without any action Julie woke up Wednesday morning July 17 in excruciating pain.  The center of her chest and her lower back felt terrible.  It was the most pain she remembers experiencing in a long time.  She mentioned to one nurse it "was worse than childbirth."  Initially we wondered if it was a heart attack.  I cancelled my appointments and rushed her to the hospital.  She was weeping the whole way.  It was so painful for her to sit down that she was holding herself up with her hands.  When we arrived at clinic, they took her vitals, and bloodwork and found it was a common side effect of the Nulastin shot she was given when she finished chemo the week before.  This shot is given after chemo to assist the body in reproducing it's own white blood cells.  When it kicks in, it comes back fast.  The white blood cells are produced in the bone marrow.  Any bones that have a lot of mass i.e. the sternum and the pelvis, produce more bone marrow.  The pain was from the pressure of the cells rapidly reproducing.  Ironically, Claritin D can mitigate some of this pain in an off label use.  Julie had been taking it for fluid in her ears probably caused by all the normal saline she was given during therapy.  Since no one told us there was an additional reason she was taking that drug, she discontinued it when the inner ear fluid seemed to dissipate.  Julie is always looking to reduce the amount of pills she needs to take.  She has no problem taking pills and is extremely compliant, but if there isn't a clinical benefit, she requests to come off it.  She was re-admitted that day.  I just remember her standing at the bed in the infusion clinic because it was too painful to lay down.  She was so weak she could barely stay up.  Once the Delaudid arrived for pain, she was able to lay down and finally rest.  As with many stays, once I left, she sent me a list to pack a bag.  That night I sent it up with her dad so I could spend some time with the boys.  We decided to make a 7-eleven run on the bikes for slurpees.  It's a rite of passage really.  
  
She needed another platelet transfusion on Thursday, and another on Friday along with a RBC transfusion.  The week since that last chemo treatment, she had had 5 transfusions of blood and 4 transfusions of platelets.  The silver lining is there was no longer any sign of bacteria in her blood or lungs.  She was discharged that Saturday June 20.  There was a going away party for one of our friends in the hood and Julie wanted to go because there would be no kids there.  As she rested in the afternoon, she told me she didn't think she could even get up and get dressed.  I told her she would be glad she went and that even if we just went there and said hi to everyone and left that would be fine.  Julie is always worried I am going to want to stay too long.  I would sleep over at peoples houses if it wasn't super creepy.  I love a good party.  She mustered up the strength to get ready and go.  We ended up staying there for 3 hours.  She was so glad we went and truthfully it was me that said it was time to go.  This was an anomaly.  It was great to see her talk with so many people who have been thinking and praying for her.  It was inspiring to see them and to be lifted by their encouraging words.  Each day and each week there are small feats of accomplishment like this.  The road is long, but looking back we can see improvement.

We have had random set backs not related to the chemo.  That Sunday June 21 she was nauseous from the sheer amount of pills she had to take.  Sometimes they get stuck in the esophagus.  She again mustered up the strength to go to her brother's wedding shower.  She was glad she made it and it was great to be encouraged by her family members.  Over the next few days she was still very weak and very tired.  I have several texts where she asks me to check her blood sugar.  I remember checking it and then getting the needed OJ or food or insulin to make adjustments.  She was just so drained that week and she wasn't able to hold anything in.  As always we were in contact with the clinic and on Tuesday that week we were taken to the Acute care clinic for fluid and some testing.  We spent much of the day there and the infectious disease doctors came in and wanted to admit her.  She was getting IV antibiotics at home and we figured much of the gut issues she was having was from the prolonged use.  We pushed back a little bit and they conceded to let us go home.  We were just worried about getting another bug at the hospital.  Turns out we were too late.  The next day on Wednesday they called her and let her know that a culture came back positive for C difficile enterocolitis, a gastrointestinal infection.  Most likely she got it at the last hospital stay.  I rushed up to Huntsman to pick up some heavy antibiotics just before they closed that day.  She seemed to react well to the meds pretty quickly.  

Looking through our texts together, she continued to parent, request food, help with meds, using the Airvo high flow nasal cannula, or ask for chest PT to pound on her chest.  Chest PT helps break up any congestion, and is therapeutic for her as well.  I also found several grocery lists and prescription lists sent late at night when the kids were in bed.  Other set backs included more indigestion, possibly related to the C Diff, but more likely related to her not taking Miralax regularly.  It is extremely discouraging for her when she has pain or discomfort amongst the low energy levels.  At times she has told me she feels like she is losing the fight.  Other times she is just feeling bad she can't do more with the family and that she is holding us back.  I assure her this isn't the case, but I don't help the situation when I ask her if she feels up to doing different activities.  It is sometimes something as simple as going to a park or up to my parent's cabin 15 min away.  I do it to push her along, and often realize it is discouraging her since she feels she has to say 'I can't, I'm sorry.'  I really don't mind when we can't do these things, but it is a burden she lays on herself.  She also feels bad since she doesn't have energy to entertain the boys.  Anyone with little boys knows they are full of energy and stories.  I often tell her that I have had a lot of peace about her long term outcome; that she has to look for small incremental improvements to mentally help her along the way.  Being a caregiver is a process.  Learning how to motivate without discouraging is a skill I am continuing to refine.

Julie's heart rate continued to be high towards the end of the first week of July and her Oxygen dependence was around 3-4 liters.  She suspected she was fighting something based on her past experience.  She had had no sign of bacterial infection in her lungs though she was on an antibiotic as a prophylactic, the C Diff was being treated with antibiotics, and she was still on an anti-fungal medication from a fungus she had caught in between chemo treatments.   There was no explanation as to why she felt so much discomfort, and pain at times.  She spent the day getting ready for her brother's wedding on Friday July 8th.  She was able to have pedicures, have her real hair wig styled, and received a few makeovers.  That day was a long day, but she looked great.  It also made her feel good to get ready again.  She had no eyebrows and no eyelashes so she wanted to get the makeovers. We had a great night at Matt and Whitney's wedding.  It was so good to see happiness in this family's life.  They deserve a break and we are so proud of Matt and Whitney.  It was a beautiful ceremony.  We hung out all night at the same table and Julie was a trooper.  

That Saturday after the boys and I spent some time up Little Cottonwood with friends, we hit our first movie with the family.  It was fun to do something normal for a change.  Psychologically, the more we do things outside our home, the better Julie seems to be.  The balance is not wearing her out physically.  When she climbs stairs, her legs still buckle.  The lung transplant team had her on 40 mg of Prednisone after chemo to help and late in June they decided to start to taper her off 5 mg/week.  Prednisone gives her energy, helps with inflammation of the lungs, but it also makes you put on water weight, and wastes away the muscle after prolonged high doses.  Some of her weakness is from the chemo, but some of it is from the wasting of the muscle.  Every weekend when she drops down, she immediately has a few rough, low energy days.  These are the days she is so hard on herself mentally.  Each time I have to remind her how she felt the day before the dose drop.  She has been adjusting well to each dose drop and her oxygen dependence only goes up the day of the drop and then normalizes.  Its a good sign that she is adjusting.

On Tuesday July 14, Julie had the long awaited PET scan to see if the chemo worked.  We had to wait 2 days for results.  On Wednesday she had her 3rd Pulmonary Function Test (PFT) post chemo measuring her lung function and x-rays of her lungs.  Things are still unchanged.  She is at 24% (FEV1), lower than where she was with her diseased lungs before transplant just 4 years ago.  Her lung capacity is climbing however.  It is around 65% (FVC) and she started chemo around 90%.  We believe that much of her lung function is influenced by her sheer weakness.  If her muscles have atrophied and need to be built back through rehab, so does the rest of her body including the breathing muscles like the intercostals.  We are also encouraged that she recovers quickly when her oxygen desaturates from being active with too low flow.  


Thursday July 16 we saw the Transplant team first.  Her pulmonologist came in the room like Kramer.  "You have an abscess in your spleen."  The results from the PET scan were back and she pulled them up.  She had already spoken to our oncologist, and they were going to try and take a biopsy that day.  It was the only thing that showed up on the scan and luckily it was being contained by her immune system.  It looked like a dark circle with a glow of inflammation around it.  Its in the lower right side of the picture.  They didn't know if it was infection, fungus, dead lymphoma, or lymphoma.  The latter was very unlikely.  But this explained the pain in the lower left lung she experienced that felt like plurisy in early June.  They didn't see it on any of the CT scans in May and June, but in retrospect when looking back they could see it on the CT scan's done in June and early July.  In addition, the x-ray showed some air trapping in the small airways.  Sometimes this can be from scarring of the bronchioles, and sometimes just from inflammation.  The fact that albuterol, a brochodialator is still helping her is a good indication it is inflammation.  We grabbed some lunch and headed to the Oncologist to see what she had to say about the scan.  We already knew it looked good, but we looked forward to her educated opinion of how things looked.  As we sat in the waiting area on the 2nd floor of the Huntsman cancer hospital, we reflected about the mornings there in complete agony; throwing up, pain, and just all out discomfort.  It was sort of weird to be sitting there without any noticeable issues.  When her doctor came in to talk to us she asked us if we wanted to see the scan again.  We said of course.  She went through it and at one point said, "Other than the abscess, your scan looks perfectly clear."  It made our day, and apparently hers as well.  We had something else on our mind now, but we enjoyed the good news.  It was so nice to put that behind us.  That said, we are only about 60% of the way through this overall struggle.  It will take another 6 months to feel better again.  At least it only gets better from here.

The next Wednesday July 22 we had the biopsy.  The radiologist couldn't give any results at the time, but he said it was not a liquid.  That most likely rules out an infection, and leaves the possibility of a fungus, or dead lymphoma.  Live cancer cells are unlikely since the area was not lit up  like it was on the scan here taken just before chemo in late Feb.  The intensity of this picture is turned way down because all the activity would have it white if it were the same contrast as the picture above. If it is fungus, it will be somewhat of a relief since the fungus she had in her system when she was undergoing chemo was thought to be in the lungs.  Having it contained largely in the spleen would be a blessing.  Fungus can create a host of issues if found in the lung and not treated early.  We know one transplant patient that passed away from this.  

Since Matt and Whitney's wedding on July 8, Julie's hair, eyelashes, and eyebrows have all grown back in.  They were only gone for about a month.  She has a solid 3/16" of hair again, and there is a lot of it.  It's amazing how good she looks from this added hair.
Since writing this we received the preliminary results of the PET scan.  It was just dead tissue.  All the tests so far have shown negative for fungus, lymphoma, or dead lympoma.  Whatever it is, Julie's body contained it and it is going away.

Keep praying for Julie to get her strength and health back.  We are hopeful she can repair and rehab her lungs.  It really is a slow fight so you will have to be patient.  We are just so grateful for the prayers and support we have had.  As I have said many times, there is no logical explanation around how well we have done through all of this other than the spiritual and physical support that has been so selflessly given to us.  The odds were stacked pretty high against her (once again) and she continues to push through them.  Setbacks will come and go, how we face them makes them go a lot sooner.  God Speed everyone.

Monday, June 8, 2015

"Its hard when its just you here Dad"

The amount a wife does for her husband and children is staggering.  Simply having Julie home helps life to function normally.  This experience inevitably forces my 6 year old twins to grow up and take care of themselves a little more than the average 6 year old.  The boys wanted to just have cereal one morning and I conceded not to give them their eggs.  Sure enough as I was putting down a sick crying baby, they came and told me they were hungry around 10:00 am.  Jack was offended since I told he and Ben to leave and go downstairs while I put Charles to sleep.  The title of this post is what he said after I decided we needed to stroll Charles to get him to calm down.  It was heartbreaking to hear.  He was crushed that I was upset with him.  These boys have been such good kids through all of this.  They have taken care of themselves, their brother Charles, and frankly me.  There are many times when I just need them to play with their brother and they will spend hours with him in his room or downstairs.  Best of all, they are still playing with him when I have a break and can check on them. During their mother's chemo, they have lost some teeth both at home and at the dentist (just because they are six and not from their wrestling).  They also graduated kindergarten a little early since we took them out in early May and we have been on plenty of run/rides.  They ride their bikes and I run while I push Charles in the jogger.  They usually consist of a few breaks, a treat, and a playground mixed into a 4-6 mile trip.  They do really well and frankly I am just grooming them for bigger longer excursions later in life.

Julie has been doing crappy/good; She mostly feels like crap, but she has been improving.  She finished CODOX and came home on my birthday.  As with the first round, she was very lethargic.  She wanted so badly to do something for me that day or go somewhere.  We talked about leaving, but frankly it wasn't practical.  I had some self pity at one point and realized how big of a tool I was for wanting to go somewhere; my wife was home, and that's all that mattered.  The night was perfect.  We had some cake, and Julie was able to just chill with us.  Julie prayed that day to have the stress of the boys staying healthy become easier to bear.  After getting RSV the first time around, she was in survival mode.  She desperately just wanted to be able to be home,  She said in a text "I want to be around my family at home not stressed every second that they are sick.  I want for once to draw a picture with the twins or roll the basketball with Charles."  She was missing some of the simple things that she hadn't been able to do for a few months now.

On Tuesday May 19 we went in for blood.  Julie hadn't hit her nadir so we had a few more days ahead of us.  During that clinic visit with her oncologist, Julie told her she did not want to continue until she was off oxygen. She had stressed over this more and more as the treatment has gone on.  She was sick of not seeing much improvement with her lung function.  The cancer levels in the blood had been undetectable since after the second chemo treatment.  While we recognized the possibility for lymphoma to show up anywhere, we saw significant changes in her lung function after contracting RSV and getting a secondary lung infection.  Julie would often say, they are so focused on the chemo that they are ruining my lungs.  After about an hour long visit and some hard discussion we realized we had to just make a choice.  We petitioned that she just wanted to know that she could improve before she kept going.  Dr. Glenn explained it this way.  They don't want to see her on oxygen indefinitely, however, if this cancer comes back, it will come back fast and will be lethal.  In her words "there would be nothing we could do."  While the lungs are vital to her life and to her quality of her life, they wanted us to focus on what had the more eminent risk, which is the cancer.  She conceded and agreed.  They had her on 30 mg of Prednisone still and that seemed to be helping.  We had planned to be admitted that Friday for M, her 2nd to last treatment (Methotrexate).  That entire week she was having a hard time breathing for a lot of reasons so we started to use the Airvo unit for high flow nasal oxygen therapy.  It is a unit my company makes for the home that is typically used in the hospital in order to deliver oxygen to patients who need a little breathing assistance.  In addition it can help with inflammation of the small airways.  At this point, she was only taking antibiotics as a prophylactic. As the week progressed, she started to need more oxygen in the mornings.  She was short of breath and as her white blood cells came up, the inflammation seemed to increase.  She called her pulmonologist and they put her back on 40mg of prednisone on Friday.  This pushed the admit initially to Monday Labor day, consequently moving it to Tuesday.  The good thing was as the days progressed on, her dependence would drop.  She noticed that even if her heart rate jumped up, as soon as she stopped doing what she was doing and took a rest, she would recover quickly.  That weekend was a good one.  Julie might say differently, but I watched her improve.  We were concerned with her lungs as always.  The Airvo along with the antibiotics and the increase in steroids seemed to be helping.  She would do several neubulized treatments throughout the day and it's not uncommon for me to see "will you come pound on my back" in our text thread.  The nubulized treatments help open her airways and cause her to cough to move things around.  From the intrathecal (spinal tap) of chemo she received the week prior, she would get a head ache each time she coughed.  From all these efforts however, she found herself feeling heavy with fluid in the morning but again, as the day went on she needed less oxygen.

She also was taking Ativan to help her sleep and calm her down.  While I was at school that weekend, she sent me a few texts telling me how tired she was.  The boys were on an adventure with one of our neighbors and she was there just resting.  One of her friends brought her Chipotle that day and Julie said "I prayed so hard that I will get some energy and won't feel so tired when she gets here."  Later on she told me she felt a lot better once the friend arrived.  "Prayers work" she text me.  On Labor Day we were able to go down to city creek and just hang by the fountain.  It was really nice to just chill in a public place.  The boys started out by getting a little wet and within minutes they were drenched.  We are feeding Julie as much as possible since her heart rate is still north of 90bpm most of the time.  She is burning everything she is eating.  That night we had burgers and hung out at my parents while the kids played and some friends came over.  While I was with the kids, Julie had some time to talk about some of her apprehension to our friend and my mom.  I think it really helped her to talk it through and get ready for the admit the next day.  Admits are never efficient and neither is the set up of drugs.

On Tuesday May 26 Julie was admitted.  IN the morning we went to the lung transplant clinic at the UofU hospital.  They had a Pulmonary Function Test done (PFT), the first of which she has had before the tumor was removed in January.  To our dismay but not surprise her lung function was 24%.  It was around 80% in January.  This roughly where it was when she received her new lungs just 4 years ago.  She also is just over 100 lbs despite her football player eating habits.  The good data point we walked away with was her x-ray looked notably better than from 3 weeks prior.  Her pulmonologist told her it was a good sign that she seems to have responded well to the steroids.  It is one good sign that Julie's goal to come off oxygen in the future isn't that far fetched.  She encouraged us to finish this out so she could start focusing on her lungs.  We then headed up to Huntsman for the admit.

Just one day later she was done with her dose.  Now they had to reverse its effects with other drugs.  I spent the week with the boys and a little time up at the hospital in the evenings after work.  Charles was sick with Staph, and the twins had a year end report to give.  Charles wouldn't take a bottle for a few days until we had a few doses of antibiotic in him.  We were so grateful once he would take it again.  He needed the calories and liquid.  For the sake of getting the baby better, it was good that it took forever for Julie's chemo levels to drop.  They were finally low enough for her to come home on Sunday May 31.

Last week was a great week.  Luckily the last treatment doesn't knock her down like the others.  She really filled the role of mother for so much of the week.  Everyone is currently healthy so she spent a lot of time with the boys watching them play in the sandbox, rocked Charles to sleep and just started running us around the house again.  It was a nice change.  She is still very weak and gets winded easily, but this week was a close to normal as we have had in a long time.  Thursday was her clinic visit.  I told her I believed they would admit her that day.  She was certain it wouldn't be till the following week.  I was right.  I spent much of the day at Huntsman getting her admitted.  In between there on my lunch I took the boys to the dentist to have some teeth pulled again.

In a matter of 1 day Julie gained 13 lbs.  The only problem, it was all water.  She asked for lasix to urinate it off, and unfortunately they had to wait till the 5:00 am labs to determine if they could do that.  Saturday she lost 6 lbs of water, and then again today she lost some more.  Having all that water weight makes it hard to breathe, raises blood pressure, and is simply uncomfortable.  It does protect her kidneys though as she is receiving the chemo.  Her kidneys need to stay in high functionality for the years and decades to come!

We took the boys to their last day of school since it was an outdoor concert.  They had a great time being there.  It was good to have them see and be a part of the last day.  They missed several events with friends and their field day to kick off summer.  Luckily they aren't too aware unless we tell them.  Julie has been torn up in guilt about keeping them from activities.  Luckily for her and them it is for only a little longer.  In addition, it is an incredible blessing they are twins.  They are so self managed during the day.  They have so much fun together and since there are two, they make for pretty good babysitters of their brother Charles.  They dote on him and he adores watching them.

Julie gets her last dose of IVAC tomorrow.  She will need one more intrathecal before she is sent home mid-week.  After that, we are done with chemo.  We are so ready to focus on building back her strength.  She most likely will crash and will need blood this week.  There is a chance she will be re-admitted as well, though she told me she's not going to plan on it like I am.  We have a long road to recovery, but we are at peace.  It has been incredible to see the amount of unselfish service that has been rendered on our behalf in the last 4 months.  As Julie has said of many people around us, we have had angels to bear us up.  For those around us, they have attested that we have gone on and functioned at a fairly normal level.  A lot of that has to do with the meals that have been brought each night.  We haven't had a weeknight without a meal since this started.  Unbelievable.  It also has much to do with the willingness our parents and friends have had in taking our kids or just being here while I visit her after they are asleep.  I don't know how many times we were at the hospital or how many days but I know it is the vast majority of the last 120 days.  The strain this must have caused those close to us at times has not gone unnoticed.  We are forever grateful to you for your angelic service.  No doubt that this ability to function at a high level has to do with so many more who do not regularly see us.  It is your prayers that have carried us.  It is your fasting.  It is even just the thoughts.  There is no explanation otherwise.  We have been carried by a Savior who loves us and loves you.  I want everyone who reads this to know that this is for you.  Not all things we pray for will come to pass, but the fact that the deepest desires of our hearts brings us to our knees time and again, will always help me understand the why.  

She has had incredible care despite all our rants in this blog.  Huntsman is truly a world class facility as is the UofU hospital.  As I have said before, I am forever indebted to those institutions and caregivers for prolonging this family's life here on earth and assisting in us being with each other for longer than ever expected.  Julie has tried to die a lot of times, and she's not very good at it.  The next goal in the coming months is to come off oxygen.  This is a pretty lofty goal but one that her pulmonologist thinks is possible.  And in the spirit of Lloyd Christmas, "So you're tellin' me there's a chance?!"  We fully expect it to happen.  Faith is not believing something can happen.  Faith is believing it will happen.  So many things we have faith in don't ever happen (see my post Carried in February), but we find out why through the journey.  We know Julie has the spit, the fortitude, the perseverance, dedication, compliance to therapy, and most of all faith that she will make it.  In the words of our close friend Whitney Butler, "Why not?  You have beat the odds so many times.  You are a living miracle."  Time and again this has happened.  This time, it wasn't without struggle, and frankly we are in the middle of the battle.  But these battles go on.  We have to win each battle to win the war.  We all go through these battles.  Some are not as visible as this, but we are all experiencing the same emotions as we face challenges.  My hope and prayer is that this experience will affect far more people than the few it touches directly.  We have felt the arms of the Savior around us and hope you do too as you face your challenges.  Please continue to fervently pray for Julie and her goal to get back to a "normal" life.  I promise you, what you see is not something of our own but it is of God.

Thursday, May 14, 2015

Round 2 up and running

Monday May 11
I am sitting in a room on the 4th floor of Huntsman Cancer Hospital.  It's late at night on Monday May 11 and Julie was admitted due to a neutropenic fever.  The "drop everything and get to the hospital routine" has become somewhat normal.  It no longer shocks me.  I just start calling those who have been persistent at asking how they can help and turn the Mr. mom reigns over.  Julie started the second half of Chemo a week ago today.  She was able to come home just two days later on Wednesday.  It was an effort to make it not as toxic and they were able to take that course due to her blood work which I'll talk about in a minute.  As always, the first night home was pretty normal.  Then the crash came after.  The next day she was nauseous, and feeling crummy.  Her appetite was gone, and she felt so tired.  At one point late last week she texted me from our room that she felt guilty she was sleeping.  She remembered feeling that the first time around.  Even though logic tells her (and so do I) not to even worry about that, there is something defeating about being in your home and not being able to just get up and be a mother to your children.  She spent 2-1/2 days feeling this way.  I was able to go with her to her blood draw Friday.  Her levels looked good and she hadn't hit her lowest point in white blood cells (nadir).  Luckily over the weekend the nausea started to subside.  She was able to eat more than just crackers and tear into some of the great food our neighbors have been bringing us.  Several of her friends came over to be with her Friday evening and Saturday while I was at class.  She felt a little bad that she was just down for the count while they were there.  I assured her they don't mind.  One of them brought her favorite thing from Chipotle,  a quesadilla with corn salsa.  She devoured it.  It was the first time she was able to eat something substantial since Wednesday.  She mentioned to me that this friend and her family had fasted the week prior for Julie.  She found it interesting that she felt good when she was there.  "I think Cassie really understands the power of healing."  Julie often talks about how fortunate she is that so many are praying for her.  We are convinced this has helped carry her through these trials.  You really feel something.  It is a subtle but noticeable feeling.  That may sound like an oxymoron, but each time you are down, you find the strength to pick up and move on.

When writing this blog, I have tried to put things in a light of how they really are.  That said, I am naturally an optomist, and that inevitably comes out in my writing.  However, I think it is important to write down some of the dark moments.  The other night, after waking up to take care of Charles, I was not able to get back to sleep for a few hours.  This is very unlike me.  As soon as my head hits the pillow, I am typically out; even if I am woken up in the night.  I found myself in and out of sleep feeling annoyed at the world around me.  I was annoyed at everything, the news, pop culture, competitive nature of business, and school, Instasham...It was almost like I couldn't stop thinking about how all the things people care about in the world didn't really matter.  I was irritated that so many people, including myself cared about all these things.  I was overwhelmed by the sheer volume of demands on my life; with my wife, and children and keeping them healthy and happy, supporting them and giving them my love and time, educating our boys, teaching our baby to walk and talk,  running the business unit I am responsible for and being the best at it, doing well in school, taking care of the annoying tax audit on my hands and on and on.   Then it dawned on me; This is what depression feels like.  I had never felt this way in my life and it felt so irritating.  I couldn't just snap out of it like I normally would.  I decided to get on my knees.  I was not crying or overwhelmed emotionally, I was just spent.  I asked my Heavenly Father to just take the burden from me.  I knew I needed to sleep and that was stressing me out too.  I fell asleep shortly after.  Now I am not suggesting at all that this is all it takes to take care of depression.  I believe there are many out there who deal with this on a chronic level and wrestle with feelings like this sometimes on a daily basis.  Only, I now have a hint of understanding what others go through and for that I am grateful.  In the days since, those feelings have gone away.  Once I woke up I was recharged and knew that as soon as I started chipping away at the tasks at hand, I would be even more energized.  No one ever feels like starting a large task or set of tasks, but there is something fulfilling about working at it.  

Earlier today she went in for a blood draw and they determined she was neutropenic.  She had a slight fever and they told her that after she received some outpatient chemo that if she spiked a fever above 102 to come back up and be admitted.  So here we are.

Some of the better news from a few weeks ago was the results from her bronchoscopy culture.  It came back with no RSV, and no pseudomonas.   Pseudomonas is an underlying infection that she has in her sinuses due to the Cystic Fibrosis.  The other piece of really good news is her blood work (which is not the end all be all) came back clear for cancer just prior to the second half of chemo.  For all intents and purposes, she is responding very well to the cancer treatment.  Naturally her focus is on her lungs.  She is constantly asking questions about her inflammation and most recently symptoms of the lung infection coming back.  We will see how the culture comes back if that is confirmed or not.  Tonight she had a fever of 102 and her resting heart rate was 134.  Normal for her is about 60 bpm.

Wednesday May 13
I spent about a week away from home for work the last week of April, first week of May.  It was the first time I had traveled since late March.  With good reason, I have cancelled any travel that wasn't absolutely necessary.  I work for an incredible employer Fisher and Paykel Healthcare that has been with me every step of this process.  I couldn't ask for a more world class, family oriented company to work for.  It motivates me to be the best I can be for them.  I was able to come home for a night in the middle of the week on Wednesday April 29.  Julie was extremely nervous to go in and have her blood work done.  She didn't want to be sitting there alone if they told her the cancer was back.  She still wasn't fully recovered and they had her on antibiotics (Meropenim with Cipro) for about 2 weeks at the time.  The plan was to start Chemo that Friday since we were pushing 3 weeks later than they wanted to start because of the RSV and pneumonia she had gotten after the last round of chemo.  Friday I was to be at our national sales meeting.  She was sick about me not being there when she started chemo again.  I was hoping we could push it out till Monday so I could do both.  Ultimately I would have been there either way.  Julie is the most important person in my life, but keeping things together in the other aspects of my life is important.  My company would not have even questioned my not being there, I just felt I needed to from a work perspective.  It is a very valuable meeting each year.  So there I was on Thursday morning.  I had delayed my departure from 9:00 am Thursday to 3:30 pm so I could go to her clinic appt. with her oncologist.  As I mentioned earlier, the anticipation of the news of her blood work was all for naught.  Her LDH level was perfectly normal; 200.  We were both relieved.  She asked if we could wait a few days till Monday and they nervously said that would be fine.  She really wanted to get off oxygen, and secondarily she wanted me to be able to be there for the admit and not have to miss the meeting.

I know to the outside reader this may sound ridiculous, that I was even considering going to a work meeting, but it's part of what it takes for me to keep it all together.  Continuing normal life in other aspects of my life to the best that I can, allows me to bear the unthinkable stress this could cause a person.  I had an offer from my BYU MBA program to stop the program and start back up later.  For me, keeping as many things "normal" as I can, keeps me from completely breaking down.  It helps me be the best father and caregiver I can be for my family.  I tend to really perform when everything is on the line.  Truthfully, it is more evidence for me that there is a higher power.  No one should be able to bear this alone, and I am not.  I have sensed the prayers of others.  I have had so many tender mercies in my day to day life like the one above that lift the stress and allow me to put it on the Lord. We don't get relief from everything, but we get enough relief to take a breath and say, that is awesome.  Those test results brought us peace, relief, gratitude, and we said, "That is awesome!"

We had the help of my mom nearly every night that week and during some of the days.  She truly has been amazing.  She has said multiple times that it is important the boys have some consistency.  She told me before I left that she planned to be there each night, even when she worked.  That constant has been a blessing to everyone in my home.  We have had so many others selflessly offer and help with our boys, bring food each night, sleeping over last minute, going with Julie to an appt, and generally just lifting the burdens for us.  Nothing is better than the random text from people you haven't spoken to for a very long time or from people you speak to each week.  People can't take the burden away, but reaching out certainly makes it more bearable.  Don't be afraid to ask how the person you know is doing.  It means a lot.  Be prepared to hear Debbie downer on the other end too.  Anyone you know going through chemo will tell you, its a very dark path.  Julie has told me on more than one occasion that it is the hardest thing she has ever gone through.  I think the most difficult part is that the victories are short.  You are knocked down with some complication, or more chemo every time you get up.  It is a test of mental perseverance as much as physical.

After that appt. on Thursday April 30,  they decided to drop her prednisone dose from 40 to 20 to see if they could wean her off.  She was almost off oxygen sleeping on just 1 lpm.  The very next day, she tightened up.  She needed 2-3 liters of oxygen.  She started to wonder and worry about lung rejection because her symptoms matched it.  She text me, "Low grade fever, fatigue, weight loss, feeling depressed, shortness of breath, cough, and oxygen dependence."  I text her back, "You need to focus on what you know.  You had a gnarly infection both bacterial and viral.  You were suppressed when you got it.  Trust your hope and not your apprehension."  She called Transplant that day and they bumped it back up to 30mg.  It seemed to do the trick.  Dropping that fast from 40 was probably a little too aggressive.

While on my trip, I assured Julie I would be there for her admit on Monday.  Being admitted is typically an all day ordeal so I knew it would be a long one for me.  Sunday night during our final dinner party, I slipped out and took a cab to the Santa Fe airport to rent a car.  I had rented a car on Thursday and returned it at the request of one of my co-workers who organized the meeting.  I was told I could rent right from the hotel on Sunday; not the case.  It was not only inconvenient, but it was probably a little more money than if I had just kept the rental for the weekend.  I was pretty irritated.  Monday morning I woke up at 3:45 to make the hour long drive from Santa Fe to Albuquerque to fly out at 6:00 am.  I had the thought that Julie would never forgive herself if I got in a wreck and died.  She told me later that I would never forgive myself had I missed the admit and she died...touché.  I made it home without a problem.  Julie was running the house, back in mom mode.  We were tying up loose ends right after I got home 8:00 am and were off to the hospital just before 9:00.  Again, a good friend took our kids for the day.

We officially started the second round that day.  It was the 4th of 6 chemo inpatient stays.  I spent all day and that night at Huntsman Cancer Hospital with her.  Her Oncologist told us there was not as much risk for tumor lysis (tumors breaking up and putting stress on her kidneys) since her levels were so low and running the chemo in half the time would make it less toxic.  Her hospital stay was very smooth and the spinal tap chemo she received was really successful.  As always, the first night back is fine, then the effects kick in.  She was in her room much of the day Thursday as I worked from home.  She told me she was feeling guilty for sleeping again like she did the first time around.  I told her to "Soak it up.  We are all pulling for you and putting you in a position to do so.  We want you to sleep so you can feel and recover."  Ironically, my mom was at my home that Wednesday when she came home and she had a feeling to have the boys checked for strep.  They had impetigo on their faces.  Sure enough, the day Julie was coming home, they were diagnosed with Strep throat.  Luckily we had it diagnosed early and they weren't showing many symptoms.  We had no choice but to quarantine them to each of their Grandma's houses for two days.  So much for pulling them out of school.

For the next few days, my text vine with Julie was filled with requests from her and no answer or one word answers from me.  She would ask me to get her certain medication, shhh, Fan, wash your hands,  or can you fill my water please.   Monday night this week we were talking about how chemo completely takes everything out of you.  She was a different person the week before.  She was responsive, talking with the boys, and generally recovering.  She was going on walks several times a day.  When she was asking me for assistance, she was so patient as I filled my other responsibilities and attended to her after at times.  There are times when the stress comes to a head for me.  I am very fortunate that Julie has an ability to quickly forgive.  It motivates me to be a better person and bridle my passion.

Yesterday after being admitted on Monday, Infectious diseases came up and told her the results of her tests from Monday.  The RSV is back and they suspect the fungus had grown.  This is not surprising since she had a dose of outpatient Chemo on Monday before she was readmitted for the previously mentioned fever.  She called me yesterday pretty freaked out.  She said "If I keep going like this, this chemo is going to kill me....I just feel like a guinea pig.  They have no data on how to treat me."  Infectious diseases told her she is "definitely a unique case, and we are going to get our heads together to get you better.  You are really sick and I am sure you can feel it."  She was apprehensive about starting the second round last Monday May 4th before completely recovering  from her lung infection.  She said she felt like even though she went forward with it, she felt like she had no choice.  Late last night they told her she would be having a bronchoscopy today.  Luckily we were able to have her pulmonologist do the procedure.  Julie mentioned her apprehension in continuing on with chemo.  She looked at her and said, "Are you serious?  Girl I'm going to smack the sh*% out of you!  That would make the first round of chemo pointless.  Listen, there are too many times you have tried to die and you're not very good at it."  Julie said, "So you aren't surprised this happened?"  "Not really."  the Dr. said.  "What if they want to start me on the next portion?" said Julie.  "They don't pay me to analyze, they just pay me to get data.  You need to just get through this."  "So you're not worried about my lungs?"  she asked.  "No."  Having the confidence (not arrogance) of her doctor was just what she needed to hear.  Julie looked good tonight.  She finally hit her nadir and started receiving blood today as well as platelets.  Her bronchoscopy was very clear and it looks like it is just inflammation in the small airways.  There was no mucus that came up from the lavage of saline in her lungs.  Our hope is that it doesn't get worse as her white blood cell count comes up.  Last time, the inflammatory response was delayed until the WBC came up and this caused a lot of inflammation leading to more oxygen dependence.

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.