Monday, June 8, 2015

"Its hard when its just you here Dad"

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

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

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

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

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

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

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

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

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

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

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

1 comment:

  1. i am so inspired by the courage of this family. i have not enough words to describe properly. you are amazing and i hope it will all be okay soon. keep moving forward