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.