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.

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 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 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.

Tuesday, March 3, 2015


On Saturday I was able to see Julie for a few hours.  We had a great time together.  True to form she told me a funny story that had us both laughing.  Friday morning she had finally fallen asleep after a hard night of feeling so bloated it was like being pregnant.  It was around shift change that she had fallen into a deep sleep.  She said, "You know how it takes a bit for me to warm up to new people (like nurses each day)?  Well this nurse came in with guns a blazing saying 'How ya doin?!  Where do you live? How many kids do you..."Shhhhhh"  she said.  'Oh!  Sorry!'  He continued to talk, but softer (sounds like my kinda guy),  and she later just softly said "Stop Talking."  When I saw her on Saturday, it was clear her blunt replies broke down the social barriers since they had a good rapport.  We were laughing about it since she has done the same thing to me on multiple occasions, just not in such a friendly tone.  Julie has been doing very well and her physicians have told her she has been responding very well to the treatment.  Most people on this very strong regimen CODOX M IVAC have a lot of symptoms.  Aside from bloating she has had only slight nausea, and her heart and kidneys are functioning very normally.  On the last post I mentioned her LDH numbers were climbing.  They topped out at 10000 on Saturday night.  Julie was starting to get worried because they didn't know if it was from the tumors breaking up or the cancer growing.  She prayed the numbers would drop.  That was at the beginning of the fast so many of you joined us in.  The next morning it was down to 8000, a significant drop in such a short time.  Tonight she said "I know that I am doing well because of the prayers and fasting.   There is no other explanation."

I had to travel to Washington DC for work for two days.  We managed to have a number of people graciously here to take care of the boys.  I spent some time on the phone trying to stay updated with Julie and her counts.  Each day she has been improving.  When I got home tonight I walked in and said Hi to her friend Heidi who was watching the boys.  I didn't even notice my wife sitting on the couch.  When I saw her I was sure she snuck out.  It happened many times when she was a CF patient.  She was discharged today and will be back Thursday for another out-patient treatment.  There are two more treatments on day 15 and 17 she will have to do and then Round 2 around day 30.  I couldn't stop smiling when I was here.  It was just so unexpected to have her back.  Apparently I wasn't the only one.  Charles couldn't stop smiling either.  He just kept his eyes on his mommy.  Many thanks to the thoughts and prayers that have been on her behalf.  We know so many of you out there are dealing with your own problems and barely have time to look at this or even think about what we are dealing with.  It is a real blessing to have so much support available and given to us.

Saturday, February 28, 2015


Just one week later after that last post, Julie and I went to Huntsman Cancer hospital for a check up with Martha Glenn.  She is the physician who sits on a national board that writes protocols for different types of lymphoma's.  Julie didn't want to bother with the appointment, but knew it was necessary.  She was primarily concerned with packing the bags for Hawaii just two days later.  We arrived to the appointment in a flurry due to the fiasco of getting the boys up a half hour late, taking a community shower with their baby brother, cooking their eggs and toast, and getting them off to school.  My dad came over to be with the rugrat.  There was a stat blood draw due at 8:45 am.  One of the panels they draw is her anti rejection medication level called "tacro" short for tacromilus which is generic for Prograf.  This level has to be taken at the trough, or when you normally take the medication so it is consistent, and measurable.  Last we had it taken it was 22, which was very high.  We suspected it was from the lung infection she was trying to fight and the cold little Charles gave to her shortly after we returned from the hospital a few weeks ago.  We were anxious to see it lower since she dropped her medication level at the advise of the UofU transplant clinic.  Being slightly late Julie asked if the order was there for the Prograf and asked how soon she could have the 8:45 blood draw.  The secretary looked at her with a big smile and said, "Ok, I will let them know!...Next?"  Julie came out and let me know about the exchange.  We both rolled our eyes, but also were a little on edge since the accuracy of this level is so critical to properly managing her anti rejection medication both for her graft, and in part to prevent further lymphoma growth.  Julie was uneasy.  As each minute passed that only increased.  I encouraged her to go back in and follow up.  She did and was again given the "don't call me, I'll call you" treatment.  A few more minutes passed by and Julie nudged me to put down the paper I was reading and go see what was going on.  By now it was just before 9:00.  I walked in and asked two phlebotomists standing there talking about Facebook or some crap if there was anything holding up Julie's blood work.   She said "we're just getting it ready."  I firmly told them, if we knew it was going to be this delayed we would have just gone to the lab down the hill at the U.  Flustered, shortly thereafter they called her back.  The phlebotomist asked Julie what time she arrived.  "8:40-8:45, I don't know."  She cut her off and said "8:48."  Julie started to explain the crazy morning and the lecture came back, "If you need to have a draw at a specific time you need to be here 15 min bef....THEN LET'S DRAW IT,"  Julie firmly replied.  That shut her up.  Correct as she may have been, it only adds misery to the fact that a 34 year old woman is in a cancer clinic when someone feels they need to "teach the patient" what they need to do.  It baffles me where individual pride inhibits patient care.  Patients for the most part are doing their best, even if their best is absolutely terrible, it is their best nonetheless.  This was a quibble over 3 minutes that really wasn't necessary.  Some might say we brought it on ourselves, maybe that is so, but we still needed the draw and didn't care if there was some confrontation involved to get it.

A little while later we were interrupted from doing our puzzle in the waiting room to be called back to see the doctor.  Dr. Glenn came in and checked Julie on the table.  She asked some questions about how she was feeling.  Julie casually mentioned she had been a little tired that weekend, but also let her know she felt fine doing Zumba the Saturday before.  Jules thought it was from the depo shot they had given her a few weeks before when they anticipated chemo.  In the back of her mind she didn't want to accept that it might be one of those changes the fellow Dr. Patel had mentioned at our last meeting.  If it was, we were there just in time, 48 hours or so after she started noticing it.  Dr. Glenn printed out Julie's blood work and handed it to her.  She talked a little about her prograf level; it was down to 6 thankfully.  They like to keep it in the range of 7-12 so just a little low.  Creatinine level measuring kidney function was high at 2.17; the higher it is, the lower the function.  Her Uric acid was very high at 14 (normal is less than 5) and then the doozy; LDH was a whopping 2780.  Normal is 200.  LDH is a marker for cell damage because when old cells breakdown, they release a protein.  The more rapid the proliferation of cancer, the more this protein can be found in the blood.  That number immediately jumped out to Julie when she was handed the paper, she said later "I knew it was high."  Dr. Glenn brought it up and told us what it should have been this far after the surgery.  It was 380 at our last visit but they attributed that to her surgery.  She said that, along with the high Uric acid made her very nervous.  I asked if we should do a scan to confirm her nervousness.  At this point I was just drawing straws to find more reasons to go home and pack for Hawaii.  She really gently tip toed around what she was going to say to her.  Julie asked how that LDH level compared to other aggressive lymphomas she had seen, and she replied, "It's one of the highest."  Julie just asked her, "So do you want me to come in today or tomorrow?"  Tears were welling up at this point.  Dr. Glenn was a little taken back by her candor.  She preferred that day but knew that getting the contrast drink mixed up and fitting her into the radiology schedule would take a modern miracle.  She decided that if we came in first thing Wednesday, they could do a scan and then admit her and start treatment.  "Guess we aren't going to Hawaii" Julie said with a somber chuckle.  Hawaii will always be there.  Towards the end of the appointment, Dr. Glenn said to Julie, "I can't believe how you are handling this."  She too had welled up a little.  I got the feeling during that appointment that she wasn't going to leave that room until we were ready to leave.  She spent a lot of her time with us and I will be forever grateful to her for that.  It was just what Julie needed as her patient to feel comfortable with her as her physician.

That night we told the boys what was going on and that we weren't going on our trip right now.  They didn't seem to be affected by the trip but were asking about their mom.  We told them she was going into the hospital for a while and Ben cut us off "to loose her hair?"  We all laughed.  I told them I would be shaving my head with her when she looses it.  They don't want any part of that.  Jack said, "You're going to look like Grandpa Art!"  We are glad they are young and resilient.  While we slept that night, Julie woke often feeling pressure in her bowels.  We arrived the next day for a 10:00 am PET scan and I worked while I waited for her.  At around noon she came out.  We went upstairs to admit her and sat in a room for about 2 hours.  We were later moved up to the ICU so they could keep a close eye on her when she received treatment that afternoon.  They told us they were moving her so we got her things and walked up there.  They weren't used to seeing a patient walking around in normal clothes in that area of the hospital.  The kidneys were not doing well since the creatinine had climbed to 2.34 and the Uric acid was still very high.  The LDH levels had climbed to 3350 in just one day.  This cancer was growing fast.  We saw Dr. Glenn's partner Dr. Stevens at around 5:00 on Wednesday.  She showed us the results of the PET scan and they were chilling.  Julie had small tumors all throughout her digestive tract.  There were a few other areas where the small tumors showed up too.  She told us we should start chemo within the next hour or so.  7:00 came and went.  All the while, people would come in and go over her extensive med list to try and correct it in the computers.  Knowing how it typically takes 2-4 hours to get admitted to a hospital, Julie brought her own meds so she could keep on schedule.  We anticipated having chemo in the afternoon since Dr. Glenn wanted to start as soon as possible after the scan.  She mentioned it should happen sometime during the day.  For that reason we stopped the prograf and Imuran, the anti rejection drugs since they can interfere with the chemo and the chemo fills the need to reduce the immune system.  From the beginning at about 1:00 pm, we were emphasizing the need to have her long acting insulin for that evening.  Last hospital stay, it took all 3 days for them to get that right and she had high blood sugars the entire stay.  After a long day of asking and receiving "okay I will call the doctor"  we finally received chemo at about 11:30 pm...almost.  They didn't have a consent form signed.  The oncologist during the day assumed it was signed in clinic, and the clinic assumed it would get signed the next day since we weren't admitted on the same day as the appt.  They called the fellow on call, and he told them he was home and wasn't coming back.  I was livid.  We spent the day waiting, 11 hours to be exact, to start this urgent therapy that was supposed to start shortly after our scan.  The urgency of our physician the day before didn't trickle down into the unit.  I told them I was ready to go to the fellow's house and rip him out of bed.  The other misnomer was we were off transplant meds, but not on chemo, so the immune system was getting less suppressed by the hour, putting her lungs at risk of rejection.  It may not have made a difference, but the apprehension this created was not ideal either.  I called our neighbor who is also a fellow at the hospital and he talked me down.  He mentioned that waiting another 6 hours wouldn't hurt and that it would give the kidneys time to continue to increase in function.  They had improved that evening with a dose of Rasburicase.  Julie nicknamed it "Raspberry days."  We woke a few times at night with apprehension about her rejection meds not being in her.  We have been so vigilant for 4 years that this felt totally irresponsible.  By early the next morning we received her long acting insulin.

The next day, Thursday, we were consented around 7:30 am.  It took another 3 hours to start the chemo, still a ridiculous amount of time since the meds were in the room the night before and ready to go.  I also spent the day waiting for her spinal tap version of Chemo since she wanted me by her side.  On the way back at 3:00 pm  I found out that it was done in the ER and I couldn't be there. The back story to all this, was our doctor was livid as well.  She is soft spoken, but apparently carries a lot of weight and when she is not happy, she will get what she wants for her patients.  There were multiple reports written up about the discontinuity.  So sad it had to be Julie that had to deal with it, but so grateful she just took it in stride.  The care since then has been excellent.  Her transplant doc called Julie and they spoke about the insulin.  She said "Tell them you manage your diabetes very tightly."  It feels like they are managing her care from more of a multifaceted approach now as they had planned to from the beginning.  Thanks to everyone at the UofU and Huntsman Cancer for taking good care of my sweet wife.  You have helped her beat the odds so many times.  The care given to her should never be forgotten since it is the means by which we believe we have been blessed.  We are looking forward to this summer when we can put this behind us as another bump in the road.

She felt more and more bloating that night, and after chemo has started the LDH levels continue to skyrocket.  This is an indicator that the tumors in her bowels are being broken apart.  Luckily her kidney function has stayed normal so they have been able to take this extra work.  Each day she has said she feels more and more bloated.  Today she said she feels pregnant.  She didn't sleep very well last night, but all in all is in good spirits.  She was able to meet us out front yesterday and see her kiddos.  That lifted her a lot.  She is such a champ.  Never complaining.  She told me she wanted me to stay home last night and today to be with the boys and give them some consistency.  She is always thinking of the other person.

Looking back at our decision a few weeks ago to forgo chemo was something we immediately did with the physician on Tuesday.  She confirmed it was the right move since Julie had a lung infection at the time.  That was one of the first things she asked Julie about (knowing she wanted us to do chemo) and was happy to hear it was all but gone.  We felt right about it and it proved to be the right move, for the time.  We were able to spend 3 weeks in more normal life; hoping for the cancer to be gone, but recognizing it may come back we just lived as if the former were the case.  We were able to go on several dates, and take a quick trip to Zion National Park and the sand dunes with the boys.  I will forever be grateful for these memories in such a tumoltuous time.  We are also grateful that this happened before our trip.  To see how aggressive this cancer has been just over the course of a few days has been chilling.  I am so glad we weren't out of town as its aggressive growth occurred.  My hope in posting is the reader will see what Julie is facing with such high spirits and say to themselves,  "I can face...."  The truth is, you can face anything if you place hope first and doubt second.  For Julie I would be remised if I didn't credit her faith is Jesus Christ, since she attributes her strength to putting Him first in all of this.  She sees things so clearly, even the mundane.  When you are faced with death your whole life, during these times of facing it, you tend to not get caught up in the minutia of who said what and who's doing that.  During these times it is so easy to realize what matters most in life is your relationship with God and how you treat and have treated others.  How others live and what others do becomes less and less important to you.  The important stuff becomes, how am I treating others, is it the way I should be treating them, as a loving Savior would want me to treat them.  The things that normally get us worked up and upset become as futile as they actually are.  I am humbled at this opportunity to learn from such a wise soul in Julie.

If you have never fasted, or seldom do, or frequently do, this Sunday is a great opportunity to witness it's real power.  Fast with us for Julie.  People always ask, what can I do to help.  This is what you can do.  It has a real and tangible power that hopefully you have witnessed carry us through these posts.  It doesn't matter if you don't know anything about fasting.  Just start with a prayer or meditation about Julie and her well being.  Spend tomorrow morning and afternoon without food or water (unless you need medication of course) and see what it does to you.  You will feel a love for those around you that you have never felt.  If nothing more it is a gesture of sacrifice as a petition to God that we are willing to do without.  No need to tell others you are fasting as this just cheapens the experience.  Thanks again for your thoughts and prayers.  They make a difference!

Thursday, February 19, 2015


The journey we have been on in the last three weeks seems somewhat distant.  With the grappling with doubt and then hope I felt the week of the surgery, that grappling only continued the following week.  We met with Huntsman Cancer about 2 weeks ago and they told us Julie's tumor was a rare lymphoma called Plasmablastic lymphoma.  It is a very aggressive cancer so they prepared us for a heavy dose of 4 rounds of chemotherapy.  This lymphoma is primarily found in immune suppressed HIV patients, but on rare occasions it has been found in Post transplant patients.  Julie was #38 since 1997 and #5 who has a lung transplant.  Our oncologist was very forthright that even with the data on HIV patients, there was no empirical evidence on how to best treat this cancer.  To her credit, she sits on a national board that writes the protocol on how to treat different types of Lymphomas.  We were in good hands.  It was still very rare.  That said, the fellow shared with us a story of how a patient with this disorder was clear one week and full of tumors just a week later.  We were going off of case (individual) studies.  That was Tuesday.  We spent that day grappling with the new lifestyle we would have to undergo.  Julie would be admitted for 2-4 weeks with a break of a few days in between and as with most chemo, just when she would start to feel normal again they would hit her with another round.  Julie was going to have to move in with her parents so we could protect her in these highly vulnerable times.  The oncologists biggest concern with starting chemo was Julies risk for infection.  She already had an underlying infection in her sinuses from her CF that had moved into her lungs and it could become systematic.  They were going to start that Friday but decided to push it off till the following Tuesday, Feb. 10.  It took a bit, but we came to terms with this reality, and started to plan out how we were going to carry this out at home while she underwent treatment.

On the way home we had a lot of discussion about how much suffering is going on around us all the time and how we are simply oblivious to it.  We find ourselves pushing through our normal routine to provide for our children and serving others at arms length.  Julie also said this experience has helped her remember how important it is to stay on our knees, even when times are good.  We have had an immense amount of gratitude for the last four years.  Though there have been continual bumps in the road, and suffering at times, it really has been pretty normal.  We have spent a lot of time together both here and out of town.  We have really lived to try and care for Julie, and look ahead expecting the best outcomes.  For me, this meeting at Huntsman was the first time in our marriage I began to slip from that long term viewpoint.  We spent the prior weekend feeling peace that all will be okay, and each set of information that came in was not what we hoped for.  Discouraging isn't the best word to describe it since that implies some level of naivety of the realities of what we were facing.  It was more a feeling of, "ok, so now what do we do?"

That night I spoke with the twins at length about what was going on.  They are 6 so they have a thicker candy shell than older kids and adults do.  I don't know they can fully process what is happening, but we don't want to make the mistake of dumbing it down to protect them.  Julie mentioned die and one of them asked "die?"  We were pretty upfront about the possibility but reassured them that we had hope and faith that wouldn't be the case right now.  We talked a lot about their uncle James, as we have their whole lives.  They took it for what was worth and just listened.  Ironically, when we visited her in the ER, Jack asked on the way in "what if it was just us boys?"  They know what is going on, and have always known. We have really focussed on sharing with them the times Julie has felt James very close to her.  Like when they were born, when Charles was born, before the transplant, and again last month with this latest debacle.  Ben and Jack have an affinity for their uncle.  They have always listened intently when we talk about him.  I spent about 45 minutes at their bedside talking about life here on earth and also after death.  I told them that no matter what, we will always be with them.  Though the belief that we will be with our families after this life epitomizes the word faith, one can't discredit this belief based on our dire situation.  When your back is against the wall, and you have no where to go, just hoping something is true for your benefit, does not and will not carry you.  You begin to feel it and it becomes ingrained in your soul by small hints and impressions that are so gently given to you.  We drew the conclusion that although James is not here physically, he has never left us.  He has done little things to let Julie know he is there.  These little things have been shared with the boys their whole lives.

James really forged the way for Julie when they were kids.  As a child, she was terrified of the hospital.  Only 17 months apart, these two were like cystic twins.  He filled the role of what a big brother would be in every essence of the word.  He always suffered more, having been born with a congenital heart defect on top of his CF.  When they were adolescents, they would stay in the hospital together, though James would also have to fare it alone.  Nurses would reminisce about the two of them just laughing in their room together.  Julie has tried to emulate his courage and positive attitude ever since he passed away in January of 2007, just 3 weeks before our wedding.  She took the torch and has charged ahead.

The next morning we were up early to have the PET scan.  I spent those early hours catching up on homework before the work day started.  We received a call from the fellow later that afternoon.  To his surprise, there was no sign of cancer on the scan.  He still wanted to start chemo treatment the following Tuesday just to be sure it would not come back.  The few cases that were available showed fairly good outcomes, with this regimen.  However as I was sinking myself on pubmed, the outlook was grim for those HIV patients.  I had read one meta-analysis that showed mean survival for no treatment was 3 months and treatment resulted in 15 months.  That few days, I struggled with thoughts of 'this was it' and then 'this isn't how its supposed to play out.'  Through that afternoon, Julie was really wrestling with this course.  She said, "If I go into chemo on a clear scan and get infected and possibly die, I am going to be pissed!"  We decided to call the doctor back.  This was a heavy decision, with no clear path ahead.  If we don't do treatment we run the risk of the cancer coming back with a vengeance and knocking her down making it harder to survive the chemo later;  If we do the chemo, we run the risk of her underlying infection becoming systemic and causing harm or death.  We tried first to get hold of the attending oncologist Martha Glenn, who met with us the day before; she was on vacation till the next Wed.  We then tried to call Julie's transplant pulmonologist Barb Cahill to no avail.  The fellow who we spoke with had told us the day before that even with a clear scan, he wanted to move forward with chemo since he had seen its aggressive nature once before.  Julie sort of 'knew' how he would react to her questioning.  We ended up talking to him.  She said, "I just want to make sure we are making the right decision here.  With my CF, diabetes, lung transplant all being considered, is this the best course of action?  I don't want you to think I don't want to do this because I don't want to lose my hair or miss my Hawaii trip.  I just want to make sure its the best thing for my survival.  I have this sinus and lung infection that has not seemed to go away and I just don't want that, with the chemo to be the thing that takes me down.  I have a family, you know."  We were surprised at his candor.  "Honestly, I have grappled with the same thing" he said.  We were so grateful he was honest.  He admitted it made him nervous, but acknowledged that the patient he saw do so poorly without treatment, was not immune suppressed, or a transplant patient.  But that didn't make the decision any easier, in fact it made it a little tougher.  That night we had a close friend over who had undergone chemotherapy and was faced with a similar tough decision.  Operate and remove lymph nodes then undergo therapy or just undergo therapy.  He gave us some sound advise.  Make a decision, then take it to the Lord.  Move forward with a course and if we need to change course later, then so be it.  His wife reminded us of all the miracles and odds Julie has surpassed in the past.  It was one of those tender mercies of the Lord to have them there that night.  It helped clarify what we were to do.  The next morning, Julie connected with her pulmonologist.  She tended to agree, that without cancer on the scan, she leaned toward not taking the risk of chemo, though she admitted her expertise was not in oncology but in CF and lung transplants.  This was the second witness for Julie, the first being our conversation with the fellow the day before, and the reminder of Julie's purpose to be here by our close friends.  For me, I was still haunted by the poor outcomes of the studies I had been looking at.  This whole time, we were praying for a miracle.  With other situations like this in our past, the miracle was in front of us and obvious.  This time, it was a little more obscure.  We had to wrestle with it and really just move forward as our friend advised.  We attended the LDS Temple that Thursday to confirm our decision to not undergo therapy.  Again, Julie felt James very close.  She felt inspired by his courage to move forward with her intuition and not undergo therapy.  Unless it was found in a future scan, we decided to monitor her immune suppressants more frequently, and hopefully curb the possibility of it coming back since volatile immune suppression is believed to be the main culprit.  This is a difficult task since her levels tend to change not only when she gets a sniffle, but also from her underlying CF disease.  Once she got EBV last summer in part from this cause stated above, she began to feel some intestinal pain about a month or two later.  She along with the transplant team thought it was related to motility and her CF so it was treated with more laxatives.  We all know how that played out.  Hindsight is always 20/20.

The following Tuesday we went to Huntsman and told them our decision.  They were very supportive and put in motion the plan to monitor Julie.  We will have a PET scan next month and spread them out over time.  All in all, the doctor told us to "just pay attention to your body.  If you notice something abnormal please just give us a call."  They are still nervous, and we like that.  We are glad they are vigilant at keeping her well from this perspective.  Over the past few weeks, I have heard about numerous people who have fasted and prayed for Julie.  I am now convinced that this power once again has brought us a miracle, though this one is more of a process.  This process of struggle and dependence on prayer has drawn us closer to the Lord, and deepened our relationship with Him.  He isn't always going to just take the pain away, but He will always be there.  The doctor told us there was a chance the cancer was removed and now gone.  70% of the tumor was from the immune suppression being too high, leading to EBV (Epstein Barr virus similar to mono), and 30% of the tumor was mutated and if any cancer is in the blood, this could proliferate and spread despite our preventative course of managing her immune suppressants tighter.  That said,  the peace we felt throughout this process has been undeniable.  If nothing more, your fasting, prayers, thoughts, mojo, meditation, and whatever else you want to call it, has carried us through this dark period.  I really only broke down once, and I am a baby.  It was the morning after the scan, before we had the results.  I had a dream that I was looking at our family photos, when suddenly Julie and I were in those photos.  I just looked at her and she was crying about leaving her boys.  I started to bawl in my dream, and woke up doing just that.  I left the room and fell to my knees pleading with the Lord to guide us and give us strength to bare this burden.  After the decision, life has quickly turned back to normal.  Once the decision was made, we felt peace.  We have some urgency about spending time together and frankly, provident living, though important to us, can sometimes be overdone.  Live with your families.  Be with them, travel with them.  You may have a normal life, but it can and may be turned upside down in a moment.  I am not advocating irresponsible spending, but saving money at the expense of experience with your kids, is overrated.  So is any other activity that takes you away from those you love in an unhealthy way.  We really only have these monsters at our home for another 15 years or so.

Having such a poor flu vaccine this year resulted in more people getting sick.  More people being sick meant our kids were sick more often, and ultimately this was the worst winter for Julie post transplant.  Julie really is one of those special cases they talk about on the news who suffer when people decide not to get vaccinated.  I understand people have their opinions not to vaccinate, but for us, we rely on it.  Julie is vaccinated, and so are the kids and I, but it's not the ineffective flu vaccine alone that puts her and other immune suppressed people at risk; its the fact that more and more people believe it gets them sick for a short time and decide to not get vaccinated.  So what; is it really going to kill you?  If you know someone who is undergoing chemo, or is immune suppressed for any other reason, you should get vaccinated to protect them.  A simple virus for the healthy, can lead to a systemic infection for those in these situations.  A friend of mine was admitted in heart failure when they were in between chemo treatments and it was from such an infection.  All I can ask out there, is just think a little more selflessly about it.  I used to not get the vaccine for one reason or another, usually just because I didn't get around to it.  Living this life with Julie makes me want to do everything that I can to protect her.  I believe in a God who can perform miracles, and I have seen countless miracles.  Some are massive, and most are subtle.   However, I also believe that God expects us to use the knowledge he has given to us to allow those miracles to happen.  There is a reason you cannot work in Healthcare without being vaccinated.   Lastly, if you are sick, or if your kids are sick, just tell us.  We aren't offended if we can't come along to an activity.  And under no condition, please do not come over if you are in these situations.  Apply this any time you are with someone who is immune suppressed.  You may just be prolonging their life.

Saturday, January 31, 2015

Happy Anniversary...sort of

On Wednesday, we met with Dr. Cahill, Julie's lung transplant doc and she informed us that there was a possibility that the tumor was a result of having EBV (Epstein Barr).  In that case, there is no chemo and the surgery to remove it is all that is needed. We were discharged from the hospital Thursday morning.  All in all, Julie is recovering very well eating solids Wednesday night and feeling just some of the effects of being intubated (Horse voice, with a little chest congestion).  Her CT scan was clear other than the tumor that was removed.  We had a lot of peace on Thursday even though the looming possibility that we would be undergoing more treatment.  The peace is something I can thank others for.  We have had an outpouring of love and support.  People of all backgrounds have kept Julie in their thoughts and prayers.  As I have said before, she and I can feel it.  It is a real power that we cannot deny.  We may be jaded from the past and that curbs the emotional reaction one might have, but we are still human.  Yet we have been able to really see things as they are in front of us and not dwell too much on what is currently unknown and out of our control.

Yesterday was our 8 year anniversary.  It was met with some preliminary results that were not welcome.  The tumor was malignant and pathology is still determining exactly what type of treatment will be best; We will go to Huntsman Cancer on Tuesday for a consult with an oncologist who works with most all of Cahill's transplant patients.  We were told they will do a PET scan at some point.  PET scan is a little different than an MRI in that a radioactive material (tracer) is injected to see where it collects so the radiologist can see areas of concern with more detail.  Most likely the Lymphoma is Post Transplant Lymphoproliferative Disease or PTLD.  We are still optimistic since the surgeon said the liver was clear and everything around the site looked "clean."  In addition,  her blood is taken regularly to detect cancer and nothing has shown up.  The CT scan done in the ER last Monday was clear. Lastly, the tumor is gone, out of her body and she feels much better than she did.  Frankly, Julie just wants to be able to still go on our trip to Hawaii next month...cross your fingers.

Tuesday, January 27, 2015

Back Again

Just under 4 years after Julie's transplant and we are back in the OR. She has something called intursussception of her bowel that really was at its worst today. (Just google it instead of wondering like I did) However, the fortuitous events of pre-op are worth noting: For one, I was here and not on the east coast stuck in a nor'easter.  More seriously, Julie has suffered on and off from abdominal pain since sometime in November. Today it was at its worst, but we were here at the UofU hospital for a clinic visit. After checking into the ER, an ultrasound, and a CT scan we found out why; The condition had created almost complete blockage. Any longer without intervention and her colon would begin to die. We couldn't have been here at a better time. In addition, we have the same nurse anesthetist as last time, Julie's anesthesiologist neighbor growing up was on service, and the surgeon is one of the top surgeons and academics in his field...again. Sitting in this waiting room alone with Julie's Dad brings back many memories. We went back to the OR around 11:30 pm just like last time.  I was also writing a post titled "To my Twin boys" at this very hour.  That post was much heavier since Julie's life was literally on a thread.

Rewind a few months to November. Julie caught a cold early in the season just after Halloween. It didn't stop her from putting up the Christmas tree the day after Halloween.  She does that just to irritate all the holiday purists out there...ok it's just because she loves Christmas and the last thing she is worried about is what someone thinks of her decorating tastes.  In fact we just got around to taking them down last week. Why do people stress out about that crap? But I digress, she had some lulling pain in her abdomen but she just thought it was part of the virus. As the holidays came and went Julie continued to ebb and flow in her recovery. As soon as she would start to get better, she seemed to catch something again. This is the life of a immune suppressed person. In January she was able to have some pretty powerful antibiotics intravenously to help clear her lungs once and for all from the residual effects the viruses may have caused. Prior to, and during that two week regimen she felt very uncomfortable in her gut. We did various things like break out the triangle pillows to sleep upright, took more laxatives than she normally does, and tried different diets to identify what was causing the discomfort. As the antibiotics started she became nauseous so we assumed they were the sole culprit. Now we know the nausea and stomach pains of the holiday season were in part from this condition she was treated for tonight.

Since I started writing this post, I have had two updates: first one was they were able to do the surgery laparoscopically and not open. This is a big relief. After just over an hour, Julie's surgeon came out and gave us another report. He was very positive. She handled the anesthetic well, had a few small incisions, and they were able to remove the bowel and sew the two ends together. Now it's the waiting game. The cause? A tumor inside her bowel about 4cm (1.5") that caused the overlap or telescoping of the bowel. Ironically on Sunday she said to me, "what if it's a tumor?" Another lesson to always listen to your gut...pun intended. Though she said a lot of things it could be over the last few weeks, it's always good to rule things out and don't just write that patient off as webmd crazy.  She may be onto something.  We should know by Thursday this week of the tumor was malignant or benign.

Aside from all this, life has been unreal for us. I haven't posted because I haven't needed to and we have just simply been enjoying our kids and each other.  Julie gave birth to our beautiful son Charles just 1 year ago; no complications, just 5 weeks early, and little like his brothers. He's now our little buddy and it has been a huge blessing to have him join his brothers. Ben and Jack are in Kindergarten and Julie is on them like white on rice everyday. They handle the pressure to do homework remarkably well. Better than I ever did.

Julie has often recalled that when we were posting years ago, before and after the transplant, she could "feel the prayers of others."  It's a surreal experience to go through for sure. But really, the reasons for posting have always been the same. Keep a record for my boys so they can see their mother's strength and her faith in Christ, and solicit prayers on her behalf. The latter is a selfish approach that I apologize for if it offends. But once again my back is against the wall. We often joke that Julie and I try to think of the riskiest thing we can do, and then do it. Though it is not deliberate that we continue to face some heavy things, we will always rely on any power that we hope and believe is out there. No matter what your belief is, we thank you for your thoughts and prayers. In our eyes there is a real power in them, and frankly it's proof to us that God is real and he hears our prayers. The prayers certainly have not taken bad things away from our lives, but they have helped us see through these problems.  They will not guarantee good outcomes, but we wouldn't know Christ if that's all we were given. We have come to know Him better as we have faced the unknown time and again.  My hope in writing this is it will remind you to remember what you know and you have been blessed with instead of harnessing what you don't know and haven't been afforded.  Thanks again, and God Speed.

Tuesday, November 19, 2013

Uncharted Waters

It goes without saying, but Julie is literally among a handful of Cystics who have undergone double lung transplant and then pregnancy. My job has taken me to NICUs around the country and as I learn about this very complex area of medicine, I am humbled. Neonates are extremely resilient in their fight to live. That being said, it is chilling as I am confronted with the complications of early term births on almost a daily basis. Julie is just under 28 weeks; a critical time for the baby's lung development. As we were looking at some research the other night around delayed cord clamping and other data around pre-term pregnancies and transplant we came across the registry for post transplant pregnancies. It is one of the oldest running studies in medicine. There were only a handful of patients (voluntary registry) that had Julie's situation. The possibilities of complications with an early term pregnancy are enough to get your attention. But to add to it the possibility and reality of rejection; It brought me to my knees. Anyone who has read this blog has seen we are very optimistic and have a "cross that bridge when it comes" attitude. That is not to say we don't get smacked in the face with reality every so often. Luckily so far we haven't been smacked at the same time. We started to have the kind of conversations we have every so often that I imagine a psychologist would be giddy over. I asked Julie about some worst case scenarios with regard to our twins and our unborn son. If she were to reject because of this pregnancy and leave earth in their young life, possibly just a few years from now, the twins would be old enough to remember her, and have to cope with losing their mother. Trust me, this isn't the first time we have had this conversation. If faced with this I asked her if she would have regrets about getting pregnant. Her answer was considerate but concise. 'Its not about that. It's about giving them life, no matter what the obstacles are,' speaking of both our twins and our unborn son. How profound that she sees it as it is. She is considerate of the trial it would be for our kids but not consumed by it. 

The following morning I told Julie I had a hard time falling asleep (partly jet lag) thinking about the risks we are knee deep in. At some point the scripture came to my mind in a still small voice: "Did I not speak peace to your mind concerning the matter?" Without telling her this detail she told me 'Sometimes I think about those things (risks to her graft or the baby) and the scripture "Did I not speak peace to your mind concerning the matter" comes back to me.' I was blown away that a scripture that helped her prior to us getting pregnant among other times was the same one that came to my mind the night before. 

We talked that night before about what life may be like for either of us if the other died. Conversations like this may seem depressing or stressful, but they are just the opposite. We all will be faced with it at some point. I believe in order to truly not worry about what you would do, and 'cross that bridge when it comes' you have to actually have a dialogue around it. We don't talk about it often, but it clearly would come up in conversation because of our situation. Before I married her I thought that I could be faced with this if I married a perfectly healthy girl; with Julie at least I knew somewhat what I was up against. The same types of conversations are had with our boys from time to time. It's amazing to see how they grasp the concept of eternity so easily. We of course do what we can to reassure them, but they are well aware at this point that we all die and we will be with each other again. Around all of this is the age old benefit risk analysis. For us, we have everything to lose if we don't go on this endeavor to have a family, especially if she lives a full life. If the worst comes, we have boys who were brought into this world in part by a fearless mother who has a will to live, and sticks to her principles amidst the strongest obstacles and personal anxiety. That is a legacy they will most definitely draw on throughout their life. You can't pick your poison, so go with your gut, ask God for some kind of confirmation and live your life.

Saturday, September 28, 2013

Take it for granted...

There's a back story to this picture...but before I go into that, let me explain the fact that we posted twice in 2012, and that this is the first post for 2013.  Life has gone on.  We have gotten so used to normal life that we take all of this for granted.  Ingratitude is not what I am talking about; its worry free life, full of activities, the trivial debates of marriage, teaching the boys to ride bikes, poop, ski, play baseball, poop, fish, poop, and the like.  We don't think about the gloomy bridge we might have to cross, its a waste of energy and time.  As we have in the past, we cross them when we get to them, and look around the rest of the time.  Prepare??  You can't prepare for most of the challenges life throws at you because you never think you will have to go through what you end up going through.  So enjoy where you are, and let everyone out there think your life is mediocre so you can enjoy how great it is with the ones you love.

My last post was a bit of a downer.  You have to understand that for about the first year or two we have been figuring out what to get worked up about.  It's different for every patient.  We really haven't had complications since the surgery; a lot of things we could have been stressed or worried about have come and gone.  She had a drop in lung function about 6 months post that was an indicator of chronic rejection.  Since then however, Julie has been stable, which is contrary to the very definition of chronic rejection.  In reality, nothing changed anecdotally when it came to how she felt.  A few test results changed, but that's it.  We decided to just be positive and move on.  One of the reason's we can let life go on is Julie's incessant attention to her vitals.  To this day she takes them morning and night with every attention to changes documented for clinic visits about once every month or two.  This attention to detail is a big contributor to her success fighting CF before the transplant, and her health now.  It bothers her when we are out of town and she isn't able to check her blood pressure.  I am so grateful for her compliance with her drugs and attention to details, because if it were me, I'd get complacent.

The back story to the above picture, is it has been on Julie's mind since she was a little girl; to not only be a mother, but to have a baby.  As she grew into her 20's and became sicker than she ever imagined but was always taught to expect, this dream of having a baby waned.  In 2008 we were given the Ultimate gift by my sister Aly carrying our baby boys for 7 months before they were born prematurely.  To add insult to injury for her (pun intended) Aly offered to pump for us for 6 months.  To be clear...JULIE's egg, MY sperm to form an embryo to be placed in vitro into a surrogate.  I can't tell you how many people out there haven't understood that concept.  Utah can be a weird place, but definitely not that weird.

Conventional wisdom would tell you to call it good here right?  We have a family with two beautiful boys, my wife's life has been extended for anywhere from 5 to 50 years, so why on earth would we have another baby?  There is so much at stake, so much to lose, for us and for our boys.  My question to you is, Do you live life around statistics?  Or do you live life around calculated risk taking.  We all see things differently and make our own choices that we have to live with.  Had I married a completely healthy woman, would I consider the rates of divorce, chance of losing a child to an accident, or disease before we decided to have children?  Maybe the answer for some out there is yes; but for us, that is no way to live.  The reality around this is Julie had it in her mind that she was born to be a mother.  No amount of reason or rationale could stop her, except in the case of high known risk.  Prior to the transplant, we knew how risky it was for her to carry a child, so we looked at other options from day one.  Post transplant there are still huge risks, but they are far more unknown risks; there aren't a lot of women of child bearing age with double lung transplants, CF, and CF related Diabetes.  There really aren't any case studies on such a specific patient.  So in the end, you can't always go off of data analysis and studies, you have to go with your gut.

The first week after transplant, Julie asked Dr. Cahill when she thought she could have a baby.  Without even skipping a beat Dr. Cahill said "Don't ask me that again for a year."  Our one year mark came and went and Julie began to grow inpatient.  We scheduled an appointment with the transplant clinic to specifically talk to them about this.  Julie was hoping to talk to Dr. Cahill since she had spoken to her originally about her desires to have a child.  I was grateful for what came to follow; Dr. Raman, her other physician spoke to us.  It was a very candid, and blunt conversation.  He spoke to us about our boys and about what a decision like this could result in, suggesting surrogacy or adoption instead.  Julie left in tears of discouragement.  There were a lot of "come to Jesus" talks between Julie and I and Julie and her physicians.  This decision was not  blind ignorance of the truth on Julie's or my part.  She took the risk very seriously and considered adoption, surrogacy, or not having a child at all.  I was in a position of stupor.  I wasn't against having another child, but I had come so close to losing Julie before, that my normal optimism was stifled.  Julie was on line reading journals and studies, and blogs (don't believe what you read in blogs;) and Mayo clinic and pub med; the list goes on and on.  She was looking for any information she could find.  She didn't want to be cavalier with what she has been afforded and what she felt deep down we were about to do.

An appointment was made with Dr. Silver a high risk OB at the UofU Hospital.  The meeting with Dr. Silver was spawned by Julie connecting to another double lung transplant patient who has had two children post transplant.  They talked about how it went, adjustments to meds, complications, and so on.  As with Julie's transplant surgeon, Dr. Silver put her worries at ease the moment they met.  These two instances came to Julie as answers to prayers.  They were the perfect demeanor for Julie; A surgeon who was confident but not cocky in Dr. Selzman, and an OB who was laid back but calculated in Dr. Silver. In the end, the person considering the risk the most and stressing about it wasn't her doctor(s) or me, it was Julie.  Once she had that meeting with the high risk OB, another appointment was made at the Transplant clinic.  Dr. Cahill came in to talk to her about her decision.  We were both surprised by her approach.  She said something to the effect of 'We didn't transplant you to tell you how to live your life, we transplanted you so you could live your life.'  Julie asked her "Would you support me if I decide to get pregnant?"  "Absolutely" she said.  It was as if the entire weight of the unknown was lifted.  Dr. Cahill was very supportive and almost anticipating it in the months to come.  A few different times she would say "lets draw your blood for a pregnancy test."

As we came into the fall and continued to try, we decided to go to back to the infertility clinic in research park at the UofU.  We found out Julie had stage 4 endometriosis.  This wasn't the double wammy, it was the quadruple wammy.  I began to wonder if we were forcing the issue.  It was a source of stress in our marriage as many people can relate to.  Julie was unwavering though.  Despite being detached at times, I found my self jumping on the wagon with her and reminding her of certain priesthood blessings she had been given throughout her life, and all the specific answers to prayers we had received in the past.  We couldn't get our heads around why we were going through yet another road block; we had to focus on what we knew, and what we had experienced.  As soon as they told us the results and suggested laproscopic surgery, she said, "let's do that."  In December she had the endometriosis removed and we were trying IUI (artificial insemination) the following months.  After trying 3 times we began to talk about IVF (in vitro) again.  I had just been promoted and it was requiring a lot of initial travel.  I remember being in Irvine at my office on the phone with her.  We were talking about doing IVF the following month as the doctor suggested and foregoing a 4th try at IUI the following week.  We were coordinating my travel schedule.  We decided to break up my trip that following week and go ahead and try a 4th time.  For anyone who has had to go through the process of having a baby the non-traditional way using modern medicine, you can relate.  For the rest of you, it's full of surprises and it's not usually on your schedule, even if your wife has a regular cycle like Julie does.   Once she starts ovulating, you have to be at the clinic the following day, sometimes the same day to have the procedure done.  She was supposed to start ovulating on Saturday night.  I was flying out on Tuesday morning to Seattle.  Saturday came, Sunday, Monday...she still hadn't started.  I had changed my trip to Seattle to a day trip instead of connecting to my office in Irvine that night.  I came home in time to put the kids to bed.  She still hadn't started ovulating.  After a few episodes of Lost she started ovulating around 11:00 pm.  I had a flight out to Houston the next afternoon.  We called the clinic first thing in the morning, went to the procedure, and I was on my way that night for the rest of the week.  We fit it in an 18 hour block of me being home.  It just all fell into place.

The next month when it came time for her to start her cycle, she was delayed.  At first she wrote it off to a late ovulation cycle.  You sort of get used to not getting pregnant when you try for months and sometimes years.  I was out of town again for an entire week.  She was supposed to start over the weekend while I was home.  I called her every night asking, hearing that well anticipated, "no, not yet."    I came home on the weekend and she was something like 8 or 9 days late.  She had bought a pregnancy test earlier in the week, but wanted to wait till we were there together.  I got to her parents second home in midway late Friday night.  She had read somewhere that the test is more accurate in the morning since there were more hormones in the urine after sleeping.  She wanted to wait so that she would not get a false positive.  Talk about self control right?  The following morning at 5:00 am she took the picture at the top of this post.  I laid in bed expecting a shout of joy or a scream, but in true Julie fashion, I had to get out of bed and walk into the bathroom.  "Look" she said as she pointed to it on the counter, "Cool, huh?"  "Yeah, that's pretty cool.  I knew it.  Your freaking at 39 days since the start of your last period!"

The boys are very excited to be big brothers.  When we asked them to guess what was in mommy's belly, one said a dinosaur, and the other said a baby iguana...this is before any ultrasound pictures.  When we found out the sex at 16 weeks, Julie couldn't stand to wait and plan a reveal party with invitations like she normally would.  She immediately planned something for our parents and grandparents the following day.  We baked a blue circular cake, she tried to frost it when it was still warm and it fell apart.  She called me up to help her out and we cut it into a square cake.  We had about a dozen people over one Sunday for that party.  Of the 12 or 13 people there, only two guessed it was a boy; Ben, and Julie's mom.  Jack wanted it to be a girl so we could name it Sally after Lightning McQueen's girlfriend.  I think his first crush is a car...but that is actually somewhat normal.

It has been a very normal pregnancy, with bloating, and weird pains lately on either side of her belly as her ligaments stretch.  She didn't deal too much with nausea probably because she has so many measures to prevent it already.  She has been tired at nights, and cleaning like a banshee.  They say nesting doesn't occur till the end, but she is using that as an excuse to whip me around every weekend.  I love her.  I couldn't ask for a better pain in the neck to be married to.  She makes me a better man and I'm lucky to have her as long as she can be here.  Be it 2 years or 50, we are grateful.

Friday, June 29, 2012

Speed Bump

Julie is not doing as well as she has been. Her O2 sats are down from the high 90's to the low 90's and even the upper 80's. This has occurred just over the past 2 weeks and we suspect its either from a spider bite on her hand, or a virus she got from the boys. Interestingly enough, I'm posting when I am apprehensive about Julie's future. It seems to be that way; every time things get questionable, I post on the blog. Its sort of therapeutic, especially since I can see how many are concerned for her welfare.

We have been so busy with life; trips, golf, soccer games, hiking, my career, Julie's zumba class, swimming etc. Life, for a time has seemed to go on, and it has been wonderful. My only hope and prayer is that my intuition about Julie is still correct. I am reminded of a talk by Jeffery R Holland on hope; "If it was right when you prayed about it, it is right now."  Ironically I am glad we go through this type of thing in life. It keeps me grounded, remembering what is most important, and ultimately drawing Julie and I to God. He is what brings peace and direction in times of trial. Almost instantly, endeavors like staying fit, making and saving more money, or making that next improvement to our home take a far back seat in our minds. Spending even more time together comes back to the front and I wonder how it settled behind anything.

The psychological drain this puts on Julie is enough to make your stomach turn. All the hopes and dreams she has as a mother and a woman come into question. I can only imagine the emotional roller coaster she has been on over the past decade. She rarely cries, only when she is scared, and that was Wednesday morning as she dropped me off at the airport for work and headed to the U for testing. It is brutal that I couldn't be up there with her this time, but that is life isn't it? I will keep you posted.

Monday, March 5, 2012

Unconditional Love ONE YEAR POST

One year ago tonight, Julie got the call.  We spent the evening tonight looking at our photos on a slideshow on our TV.  I have this overwhelming feeling of gratitude and love for my entire family.  I was expressing to Julie that this feeling is a common thread among people.  We all have deep indescribable love for our children and those who show us love almost innately, including our parents siblings and close friends.  It is the only way I can somewhat comprehend the love of our Savior and our Heavenly Father for us.   

It was about this time (10:30) of night that they rolled her to the ER floor where we waited for a never ending but quickly passing hour.  It went by so quickly, but while we waited there and took those possibly last pictures together, the time seemed to stretch; like a Saturday when you have no responsibilities, or Christmas as a child.  Later that evening while waiting for our first call around 2:00 am, I wrote a post to my twins: To my twin boys:
It was a letter to them about their mother with a hope for a future with her.  As I wrote it I remember becoming a little emotional thinking about the possibility of them not knowing her and her love for them.  It was one of the only times I looked away from what I felt so strongly was to come; the bright future of new experiences we have only begun to experience with them now. 

This past year has not only flown by, but it has been rich with experiences and joy with our children and our family.  As we watched pictures come up randomly from the past decade it struck me how quickly life changes.  Some of the hardest times of our life however are sometimes the richest.  Living life through trials with your head up as Julie has, helped us enjoy it.  We experienced a lot in those first 4 years of marriage.  Julie made a point to try and lead her life as if she wasn't sick.  We took out the time and effort to get out of town, even if it was just a small trip.  For one, getting all the equipment in order was always a juggle, but the pictures reminded me of the bliss we had in spite of the hardships of CF.  We looked so happy and at peace.  There is no doubt in my mind that we were carried through those times by family from the other side.  There were distinct experiences that suggested that specific people from our past were near us.  Just to know they were there was enough to move forward.

As I reflect on what we were going through last year, I remember the outpouring of love, prayers, and fasting that was given in Julie's behalf.  I feel like I am indebted to humankind forever for the support that helped us realize insurmountable results.  I want so badly to pass it on and lift others to know and see what can be accomplished in their lives.  Conversely I think about the family who lost someone a year ago and am pained to think that they lost their loved one to an unexpected tragedy.  My love for my children is so deep that I weep when thinking of losing them as a Father and Mother did a year ago.  There are many people who are both infirm and healthy who hope for a better future but aren't afforded one.  The family members of those people suffer in a way I do not yet know.  My hope is that they can remember the sweet times of tenderness with that person; whether it was at birth, 4 days before death, or somewhere between.  As I watched my own married life through pictures tonight, I realized how great life has been; I saw the love in my eyes I have for Julie and vice versa.  I am going to bed tonight feeling fulfilled and content with what the Lord has blessed me with.  May God be with the family who lost their loved one last year by helping them remember the blissful times.  The fact that this individual most likely made the decision to be a donor without taking much thought to what it could do for several families is evidence alone that there is a higher power out there.  He or She has extended and enriched my life and Julies life beyond what we ever dreamed of but always hoped for.  Thank you.

We are looking forward to another great year; Julie pushing me beyond my limits and watching Ben and Jack learn and grow...and use the toilet already!   

Tuesday, October 18, 2011

A Stark Taste of Reality

Updating on Julie's status has been nothing short of easy. I haven't written about her in months; I think May was the last time I did this. There is good reason too; we have been so busy living our life. The mantra of 'no news is good news' has definitely been in play. Julie has taken on some hobbies of her own. The most notable by my standards is her desire to golf. During the summer she was pushing me to take her almost once a week. "When are we gonna golf?" She'd say with an expecting voice. We got out several times with her dad and sometimes her brother Matt early in the mornings around 6:30 or 7:00. It was good to see them together. One week when I was out of town, she went with them early in the morning on her own. It was great to see that independence.

To watch her dad with her on the course sheds light on him as a parent. He is so proud of her. She of course has natural born Jackson athletic talent, so despite my taking swinging lessons, we sometimes score the same on holes. She is extremely competitive. It's a side to her that has always been there with other aspects of her life like staying healthy and being diligent on her treatments. But to see her in a sport counting hers and everyone's score puts an ear to ear smile on anyone who knows her. She is much like her Father; having a great time, but ultimately wanting to beat the next opponent.

Julie also has done some hiking with me. In early June she was on this kick to hike Bells Canyon. She started out by hiking up to the reservoir and with my parents and I. On June 23, She, my Dad and I hiked to the waterfall. It was a 4 mile round trip and was a push at the last 1/4 mile up the steep stair like trail. She made it to the falls and I was so proud of her. She was running about a mile in Rehab, but she wanted to do something early on to fuel her endeavors. At the time she was only 3 1/2 months out doing a moderate hike that the vast majority of Salt Lake County has never done. It was great to see her not only do the hike, but recover well.

Naturally with Julie feeling well, we took a few "close" trips. The Transplant center at the UofU wanted us to stay nearby those first few months so we were careful about when and where we went. We took a road trip to Vegas in late May, had a few over nighters at my Cabin in Millcreek, weekends at Julie's parents place in Midway, Bear Lake, St. George, and in August we took a trip to Dana Point in southern California. Vegas and S. CA were trips with just the two of us and it was great to spend time together without anything attached, both literally and figuratively. We had little burden of looming illness or actual illness. We spent time on the beach, golfed of course, and went to a lot of shops and boutiques. The latter was not my favorite, but in light of everything that's happened this year I was just fine with it.

Here are her FEV1's over the summer:
May 2: 84%
May 25: 86%
June 27: 89%
July 27: 91%
August 3: 93%
September 14: 81%
October 7: 77%

In September, we were surprised to see a sudden drop in lung function. They quickly got her in for a broncoscopy and took some biopsies to see if there was any rejection. The results came back clear; no inflammation and no scarring. It made sense to us though since Julie was feeling tired during the day at times, and got winded a little more and wondered if things were getting harder. "It wasn't a drastic change, I just wondered why it was harder to keep my O2 sat's up". Over the first weekend in October on a Saturday morning, We decided to take a short 3 mile round trip hike to Secret Lake in the Albion basin in Alta, UT. We took the twins with us and it was a great hike with beautiful fall colors just before the first snow up there. Ben and Jack took there sweet time on the trail at times laying down on their stomachs to look at rocks and bugs. Julie noticed and asked if it was a harder trail than Bells canyon. I told her we were at a higher elevation at 9500 ft. and her lung function had dropped. That next week when she had another PFT and her FEV1 was down to 77%, we were even more concerned. Dr. Cahill decided to treat her for rejection even though the biopsies were clear. Last week she had three days in a row of 1 hour infusion of 1 g of solumedrol. That is essentially 200x her daily dose of 5mg of prednisone. So far, it seems as if it has helped. Her O2 sats are higher in the upper 90's as she works out as opposed to the lower 90's. Her physical therapist was encouraged on Monday when he saw that. She feels like she has more energy and isn't as tired. It may be residual affect from the steroids last week, but we are hoping it is better lung function as well. We will know once she has her next PFT's.

The stark taste of reality came on monday when Julie went up to rehab. One of the other patients informed Julie that a girl who was about 3 months ahead of Julie died last week. We knew she had been in the hospital and was dealing with some rejection, but it was a shock to hear she had passed away. This girl had been an influential part of our decision to go forward with the tests to be placed on the list. We spoke with her about a month or two after she had been transplanted and she was doing very well. She was hopeful for a new life and excited about having a family. She had a lot of questions for us in that light and we sort of connected with her. It hit me pretty hard and for the first time in months, thoughts of death and raising my boys as a single father naturally slipped back into my mind. It reminded us how finite this life and blessing of new lungs is. Anything can happen, at any time. After it sank in, hope entered back into my mind. The good that comes out of it is new resolution to stay extra clean, work out regularly, and just be diligent in what we can control. After all, that is all we can do. A lot of this is out of our control, and sort of the luck of the draw. However, much of this is in the Lord's hands. We know what Julie has been promised and have seen many of the blessings that were given to her at a young age, come to reality. Our lives have not come to the crossroad of death yet. I have full faith that whatever our path is in life, we have been born with an ability to not only bear it but enjoy it. Ironically we both have peace and hope for a long future together, raising and enjoying our children Ben and Jack.