Shawn Jr's Journey

Shawn Jr’s favorite basketball player is Luka Doncic.  Shawn watched intently as Luka burst onto the NBA scene looking more like a mature Jason Kidd than a 19-year-old kid who was playing his rookie year in the NBA.  Shawn has always liked the Mavs (MFFL), but the emergence of Luka has made the Mavs must-see-TV for Shawn.   He even has Luka as the background for his iPhone. Shawn has been struggling with nausea over the past couple of days.  Today was the worst.  He has been nauseous all day and got sick tonight after he ate dinner.   But, tonight was also the night that Luka won the  NBA rookie of the year award .  Given the year Luka had, that result was not a huge surprise.  However, it was really nice to see Shawn smile. Luka had some amazing plays throughout the year.  So much so that people started calling it “ Luka Magic .”   Now we just need Luka-type magic to help Shawn Jr feel better.  I want him to be watching Luka when he retires.  

Shawn has been at home for 5 days.   This weekend Brittany and Reese came home.  It has been really nice to have all the kids home again. Bryan Knostman and Jess McCormick also came by today to see Shawn.  While Shawn struggled a bit today, he did feel good enough to sit at the table and watch everyone play Spicy Uno.  He continues to struggle sleeping and is nearly always short of breath.  But, we periodically see a smile from him and it is good to see him moving around the house a bit.  

Shawn Jr has been home for 2 days.  He has been relatively stable but is struggling a bit more with his breathing.  He has started using oxygen during the day - which he never did before.   Some people have been asking for specific prayer requests.  These are the prayer requests right now: Shawn continues to have difficulty breathing and his anxiety is very high. Both of these factors make it difficult for him to sleep well at night or rest during the day.  Pray that he can relax and sleep.  Pray for his appetite to increase and for his body to maintain and regain weight and strength so that he can have the energy to keep up the fight.   Pray that Shawn is able move as much as possible at night to prevent pressure sores.   Pray that the immunotherapy and chemotherapy work together to kill the cancer tumors quickly - especially around his lungs.  Pray that Shawn (and our entire family) focuses on God’s truth and hope and not fear the unknown. Pray that Shawn continues to keep a fighting

Shawn Jr has a ton of meds that we have to get organized.  We are putting them in an organizer and setting up a Google calendar.  

We are headed home.  Shawn was discharged today and we are on the road back to Heath.   Going home today means we have spent 21 of the last 22 days at MD Anderson.   We have all Shawn’s medications and purchased an oxygen concentrator that will provide Shawn oxygen at home, as needed.  He has been using some oxygen when he sleeps.  We had to separately purchase that concentrator because insurance would not cover it (based on an oxygen saturation test Shawn took a couple days ago).  He had an oxygen saturation of 92% and it needed to be 89% for insurance to cover home oxygen.  Therefore, I had to separately purchase the oxygen machine.  It was not cheap and it made we wonder what people do that don’t have the means to purchase these things with their own money.  I guess they just suffer until they are sick enough to meet the relatively arbitrary oxygen saturation requirement.  Odd.  Obtaining oxygen seems like the kind of thing that a doctor should simply be able to write a prescriptio

Shawn had visitors this weekend.  Shawn’s friend Jared Robertson rode down to Houston with Noelle, Triniti, and Skylin.  They were here late Friday night and left at around noon today.  Last night we all piled into the room, hooked up Shawn Jr’s laptop and watched Pitch Perfect.  It was so nice to see everyone laughing.   Yesterday we moved from the 21st floor to a smaller room on the 10th floor (which is dedicated to melanoma patients).  We loved the room on the 21st floor.  The room we are in now is older and much, much smaller.  However, the nurses and other healthcare professionals on the 10th floor have been great.   The doctors are trying to position Shawn to leave the hospital early next week.  They switched him over from IV-based medicines to pill-based medicines yesterday.  Surprisingly the pill-based morphine (which is being used to help control the feeling of “air hunger”) actually worked better than the IV, which is very encouraging.  He continues to have in his IVs in case

Two days after Shawn’s first chemotherapy treatment, he is no better and no worse.  The doctors are starting to transition him off of IV medication to pills in anticipation of him potentially being discharged early next week. 

This has been, without a doubt, the most challenging time in my life.  Shawn’s sickness has been an emotional, intense, consuming and difficult experience.  I have also learned a ton and wanted to capture a few of those things here. Some of these things are just observations.  Others are more reflective.  But all of these are things I have learned or realized in the 3 months as part of this process.  Cancer vs. Child -  Cancer is terrible and no parent should have to experience their child going through a critical illness.  It is gut wrenching, scary and just dreadful.  Daily Battles  - Battling cancer is a day-by-day, hour-by-hour emotional roller coaster.  There are good days and horrible days.  You can never predict which direction it is going to go. The best way to mentally prepare is to just take it moment by moment and not assume what is next.   Easy to Feel Hopeless - When someone is fighting Stage 4 cancer, the odds are against them and it is easy to start feeling hopeless.  B

Today Shawn Jr is getting a single treatment of the Abraxane chemotherapy drug.  They administer it by IV in about 30 minutes.  Starting tomorrow and Friday, he will likely be battling some troublesome side effects  from the treatment.  However, because he already feels terrible, he is not too nervous about the side effects.   The hope is that this single dose of chemotherapy will help to quickly kill the cancer tumors in the lining of the lung to help him breathe.  

Dr. Hwu came in to visit Shawn today.  He said they would like to consider a change in direction.   Because of the condition of Shawn’s lungs, they would like to consider a single dose of chemotherapy to try to accelerate killing the cancer cells around his lungs.  If we elect to go that direction, Shawn would get the chemo treatment tomorrow.   He will also continue immunotherapy.  

I feel like Shawn is treading water.  He is not getting better and not getting worse.  He is not making progress and there is no end in sight for this hospital trip.   In some ways, this is not a bad status.  If he is not getting worse then this is giving time for the immunotherapy to work.   So, I should be thankful.   This is why a person treads water after a shipwreck - to stay afloat.  They are buying time, waiting for a boat to come by and pull them out of the ocean.  I feel like that is Shawn.  Just trying to buy time.  Normally when you are in the hospital, there is a discernible condition that they are taking steps to rectify. In this case, they seem to be taking a wait and see approach. They want him here in case anything gets worse (i.e., his lungs or his heart).  In the meantime, we are waiting.  Treading water.  More water references...

I have said this before, but let me say it again.  If you are reading this blog we know you love Shawn Jr and our family.  We have been completely overwhelmed by the support we have received from our friends, church, work, school and community.  We see and greatly appreciate all your prayers, words of encouragement, text messages, comments on Facebook, cards, and letters.  One of our friends started a meal train and we are now receiving 3 meals a week from you, our friends.  My last blog update has been viewed over 1000 times.  We had no idea how widespread the concern was for Shawn Jr.  We know Shawn has hundreds of people praying for him every day.  Prayer is real and powerful and we know it is helping.   Thank you for being part of this fight.  You all are greatly encouraging to Shawn and our entire family. 

We have been at MD Anderson since early Friday morning (June 7th).   That means we have been at the hospital 10 out of the last 12 days.  Right now, Shawn is short of breath, is retaining fluid in his feet and legs, has an elevated heart rate and has been unable to sleep.  They don't really understand what is causing these symptoms.  They are giving him some diuretics, started him on a morphine drip and continue to monitor him closely.  The diuretics don’t seem to be helping his swollen feet or legs, just yet.  Dr. Hwu's team is trying to formulate a plan to determine the cause of these symptoms.  We don't really know what the plan is at this point.  They will be taking a chest x-ray of his left lung tomorrow morning.  The catheter has been removed out of that lung and they are concerned about it accumulating fluid.  The right lung seems to have stabilized and is producing about 200 ml each day.  I would expect that we will be able to remove the catheter from that lung

We made it down to Houston late last night.  We went into the pulmonary clinic at MD Anderson at 7:30 this morning.  We let them know that Shawn’s left lung catheter was clogged and he was short of breath.  They did a chest x-ray.  They looked at the chest x-ray and said that the fluid in his lung was loculated - meaning that it is too thick to be drained.  After that, we waited.   When we finally spoke to an actual pulmonologist, he said he didn’t believe the lungs were the issue.   He had Shawn do an echocardiogram (a sonogram of the heart).  After looking at the echocardiogram, the pulmonologist said he believed it was a heart issue and called in a cardiologist. He was afraid there was fluid around his heart. They took a second echo and said that it only showed 1 of the 4 signs of fluid around the heart.  So, they think that is not the issue.   They did a thoracentesis to drain the left lung, but they were only able to drain 300 ml.  They removed the catheter from his left lung.  Th

“The Lord is my shepherd, I lack nothing. He makes me lie down in green pastures, he leads me beside quiet waters, he refreshes my soul. He guides me along the right paths for his name’s sake. Even though I walk through the darkest valley, I will fear no evil, for you are with me; your rod and your staff, they comfort me. You prepare a table before me in the presence of my enemies. You anoint my head with oil; my cup overflows. Surely your goodness and love will follow me all the days of my life, and I will dwell in the house of the Lord forever.” Psalm‬ ‭23:1-6‬ ‭NIV‬‬

When I woke up very early this morning, my primary concern was that Shawn Jr had not been able to sleep all night.  This has been going on for several nights.   He has a thightness in his chest and was anxious about sleeping.  I was brainstorming the best way to help him.  I left work early, came back to Heath and started building a plan.  We would drain his lungs, set up a completely dark room, have him put on a BreathRight strip, take a melatonin pill, put on some music, start some lavender essential oils in a diffuser and have him go to sleep.  This seems like a good plan until it failed in step one! We are started draining his lung and it stopped.  The Plurex catheter in his left lung was clogged again. I spoke to the on-call doctor on the pulmonary team at MD Anderson. He suggested we come down to MD Anderson because, while any hospital could unclog it, the MD Anderson team would need to consider other options to ensure this issue is addressed, long term. So, we are in the car for

Shawn Jr gained 24.9 pounds in the last 8 days.  Lots of that is fluids, of course.  But still amazing.  Wow!  I had no idea how bad he was.  

We are on the road back to Heath.  We got discharged at around 3:00.  Shawn is exhausted but feeling much better.  Praise God!

I spoke too soon.  Today was another day of complications and delay.  As a result, we have to stay another night at MD Anderson.  👎 The Plurex catheter in Shawn’s left lung got clogged again this morning.  Therefore, pulmonary had to be called to flush the  catheter to breakup the blockage.  They did a chest x-ray and didn’t find anything concerning.  We were able to drain 700 ml of fluid a couple of hours after the flush.  If this happens at home, we don’t know what we are going to do.  Apparently they cannot continue to flush the catheter.  But, we will deal with that issue if it happens.   In addition, the doctors continue to be somewhat concerned about Shawn Jr’s heart and ordered an echocardiogram.  They performed the echo late today and they will read the results of that tomorrow.   On a good note, all of Shawn’s vitals and electrolytes look good. We will probably do bloodwork 1 or 2 times a week and have the results sent to MD Anderson.  We can do those labs at Quest Diagnostic

Sorry I have not updated the blog in a couple days.  I thought we would be home by now.  But, we are still in Houston.  Shawn has had some complications.    On Saturday we tried to drain Shawn’s left lung.  This is the one that produces about 1 liter per day.  For some reason, it did not drain anything.  We thought maybe there was a problem with the bottle.  So we tried another Plurex bottle.  Nothing.  We waited several hours and tried again.  It started to drain just a trickle and then it stopped.  There was a problem.  We know his lung had accumulated a significant amount of fluid and we needed to drain it quickly.  We let the nurse know and they told the pulmonary team.   Shawn had a hard time sleeping that night because his lung was full.   The next day the pulmonologist injected some medicine into his drain to break up the clot. We waited an hour and then we were able to drain it completely. The doctors also had concerns about Shawn’s fast heart rate, his fast and shallow breathi

This has been a bit of a tough night.  Just as we thought things were headed in the right direction and he was going to get out of here today - his fever spiked overnight.  Shawn never runs a fever.  His blood pressure shot up and his heart rate is high too.  He has a pain in his back and his feet and legs are swelling.   Misty and I were staying in a hotel connected to the hospital.  He called us at just about 2:00 am.  I knew he was worried and was glad he called.  I was back in the room in about 10 minutes.   They don’t know what is going on.  They gave him some antibiotics and ran blood and urine tests. We spoke to the doctors about 30 minutes ago and they are not really worried about anything.   His labs came back and there are a few things they want to watch.   They think the fever is simply from the immunotherapy infusion and the heart rate and blood pressure are following because of the “stress” on the body.  Because of his age, they are not really concerned about the high hear