Showing posts from 2019

Reports of my death are greatly exaggerated

As you know, our family has been dealing with all kinds of problems and pain over the past few months. I didn’t expect that we would have to deal with that curveball life through at us last week.  According to all the major credit agencies, I was the one who died in July.
How did this happen? Well, it all starts with a call to a student loan company in late July. I called in to report that Shawn Jr. had died.  The person on the phone told me they would report the issue and someone will get back with me. After two weeks of silence, I called back to check the status.  I was again told someone would get back with me.  Then last week I tried to use my American Express card at Taco Bell. The card was declined. I called in to the credit card company to check why the card was declined. To my surprise I was told that they had closed my account because the credit agency reported that I was deceased. I went onto the Internet and checked my FICO score - it was zero!  
I knew what had happened. I c…

Sports Have Turned Dark for Me

Everyone that knows our family, knows that sports are a huge part of our life.  
Misty and I both played sports as kids and in high school.  Misty was an incredible athlete and played volleyball in college.  Both Misty and I are huge baseball fans.  We have always enjoyed basketball, football, tennis, volleyball, gymnastics, the Olympics and many other kinds of sports.  
After we became parents, we encouraged our kids to play sports.  We have always believed that sports, particularly team sports, teaches kids critical life skills.  We also get tons of enjoyment out of watching our children play sports - win or lose.  But, if I am being honest, watching them win is more fun.  :)  
We have spent countless hours taking our kids to baseball practice, volleyball games, gymnastics workouts, basketball tryouts, soccer games, flag-football practices, tennis lessons, and the list goes on.  If we added it all up, I bet a significant part of our lives as parents have been spent going to and from, p…

Children Belong in the Future - Not in the Past

The day Shawn Jr died, I started praying a very specific prayer.  That prayer was that no parent I knew would outlive their child.  It is just too painful.  Parents are hard wired to love and protect their children.  So watching your child die seems to me to be the worst kind of pain.  I never want a parent I know personally (or any parent for that matter) to go through that pain.  
Here is the thing about death.  It is expected to be the last event of your life.  You are born, you are a baby, a toddler, a child, a kid, a teenager, a young adult, an adult, a mature adult, a retiree, a senior and then you die. Death is something that happens to old people.  When you consider death, you prepare yourself to lose people in your life that are older.  Certainly losing a grandparent is hard.  But it is expected.  Losing a parent is even harder.  But it is expected.  People older than you die.  I have even considered the possibility of losing Misty before I die.  Logically, I know that any of …

Our Journey Continues

It has been just over 3 weeks since Shawn Jr died.  I am back at work and poring lots of myself into the Helms Hope Foundation.  Well I get up each morning, get into my car, travel the same road, and go into the same office, it’s not the same.  I am not the same.  
We continue to feel unbelievably blessed by all of the friends and family around us that are continuing to hold us up.  Despite all this love and support, we are all struggling in our own way.  
I’ve had a few different people recommend that I continue to record our journey in a public way.  Sharing stories of struggle and healing as they happen. Therefore, I have decided to continue to update everyone on our thoughts and feelings about the loss of our son on this blog.
I hope anyone reading can take a little bit of our experience and can use it in their own life.

Helms Hope Foundation

We started the Helms Hope Foundation ( days after Shawn Jr’s death.  This is a non-profit organization, formed in Shawn’s honor in an effort to turn our family’s devastation into hope for others.  Melanoma is completely curable if detected early.  The Helms Hope Foundation will fight melanoma through an intense focus on awareness and early detection.  There are many world-class organizations that do great work funding research and treatment efforts.  Those are great, but that is not us.  Awareness and early detection can save lives with relatively little dollars.  We are working to develop programs with professionals that are in a unique position to help identify potential skin cancers, such as hair stylists and massage therapists.  By utilizing non-traditional avenues for detection, we hope to increase the chances of early melanoma detection.  Unlike most other non-profits, for the first year, HHF will not direct ANY funds donated to operating expenses.  All those expen…

Shawn Jr Memorial Service and Helms Hope Foundation

Shawn Jr’s memorial service will be:
Day:  Friday - July 19th Time:  10:00 am Facility:  Lake Pointe Church - The Bridge Address:  701 E. Interstate 30, Rockwall, TX 75087 Reception to follow at church.
We would love for you to join our family as we remember Shawn Jr and celebrate his time with us. 
Today we are also announcing the establishment of the Helms Hope Foundation, a non-profit organization to advance melanoma cancer awareness and research.  In lieu of flowers or other gifts, our family requests donations in Shawn’s honor be made to the Helms Hope Foundation at
All donations are tax deductible.
We are motivated to help lead in the fight against melanoma.

Feeling Incomplete

Shawn Jr died exactly 24 hours ago.  We drove home from Houston yesterday and made it back late last night.  Leaving the hospital without Shawn Jr was so hard.  Pulling up to our home last night was maybe even harder.  I do this little thing in my mind every time I get home.  Because we have so many kids doing so many things, I have made it a habit to take an inventory of where everyone is at before I walk into the house.  Realizing Shawn Jr will never be there again caused me to just sit in the car a couple extra minutes.  
I woke up a few times during the night and tried to sleep in late this morning.  I have been so tired and wanted to get some rest last night.  Because I have either been in the hospital or sleeping on Shawn Jr’s bedroom floor, I slept in the same bed as Misty for the first time in months.  I woke up several times in the night thinking about all the things that have happened over the past four months. 
I have had lots of emotions and thoughts in the last 24 hours - S…

Shawn Jr Went Home

Shawn Jr left this earth at 10:56 this morning.  We were right by his side.  He was peaceful.  
See information about his memorial service here.

For I am convinced that neither death nor life, neither angels nor demons, neither the present nor the future, nor any powers, neither height nor depth, nor anything else in all creation, will be able to separate us from the love of God that is in Christ Jesus our Lord.” Romans‬ ‭8:38-39‬ ‭NIV‬‬

That Moment When Shawn Realized...

As I consider the most poignant and powerful moments of this entire journey, a few instances come to mind. First, when we got his initial cancer diagnosis.  Second, each time we had to tell our children (which was 5 separate times because of schedules).  Third, when the pulmonologist told me that the cancer around his lungs was really bad and there was nothing surgically that could be done. Fourth, when we had the conversation with our kids that Shawn was likely not going to pull through. Finally, a couple of conversations we have had with Shawn Jr when he realized the end was near. 
It is with some reservation that I have decided to share with you these two conversations with Shawn.  These feel really raw, personal and special.  Part of me wants to just keep these in my heart and mind without exposing them to the world.  I feel a bit like sharing these stories takes away some of their power.  It is like me giving away a special gift.  But, the more I considered it, I decided it was th…

Needing More Wisdom

These are the hardest days of my life.
I have tried to lead the best I can during this painful time with both my actions and my speech.  I have tried to take care of Shawn and have tried to say all the right things to him, my family and his friends.  But, I feel like I am failing in so many ways.  I know there is no handbook for how to take the family through something like this, but I wish I would have been more prepared spiritually, emotionally and mentally.  
I wish I had more wisdom.  I am praying for more wisdom. 

Shawn’s Medical Team

Below are a couple of pictures of us with Shawn’s medical team from yesterday.  The first picture is of Dr. Hwu and Urvi (his PA).  The second is the Supportive Care Team on this floor.  
Dr. Hwu and the other doctors at MD Anderson are literally the world’s leading melanoma doctors.  This hospital has so many awards and so much money.  People come from all around the world to MD Anderson.  This place is considered the best cancer hospital in the world.  They “cure” thousands of patients every year.  I just needed them to cure one...


Shawn Jr is declining fast. Yesterday he slept all day and was not responsive.  He sat up a couple times, but was not really able to hold himself up.  He didn’t eat and was not able to speak. His breathing patterns and body position have changed.  
We talked with him all day yesterday.  A few times he seemed to almost respond with his movements.  His friends and family have been around him continually, holding his hands, hugging him, sharing stories with him and letting him know how much he is loved.  It has been a powerful time.  
This morning, I am sitting here watching him breathe. His breathing is a bit inconsistent but he is not struggling.  Absent divine intervention, I know the time is likely close.  He looks peaceful.  He knows, and we know, his final destination.  
“Peace I leave with you; my peace I give you. I do not give to you as the world gives. Do not let your hearts be troubled and do not be afraid.” John‬ ‭14:27‬ ‭NIV‬‬

A Mother’s Prayer

Below is Misty’s view and prayer:
I don’t want to believe what the doctor has said. I am still praying for his previous 3 double dose immunotherapy treatments and 1 chemo treatment to keep attacking the cancer on his lungs and return Jr’s lungs to their previous condition, before the melanoma.  But I also hear the doctors words in my head very clearly that he doesn’t think he has more than a few days left to live.  I know doctors do not know everything, and God is the ultimate physician, but doctors have studied the body and have this experience. Why am I letting the doctor’s words drown out my faith in God’s healing powers? But I also know from experience that sometimes God’s healing is done by taking His child home. 
I also have seen things change with my own eyes - Jr isn’t eating or drinking. He isn’t able to check his text messages on his phone because he is shaking too much and gets frustrated.  I watched him hit the bed with his fists out of frustration because of his shortness o…

The Highest Compliment

Shawn Jr is a great kid.  Shawn’s journey has highlighted some of his best character traits and has caused me to admire him even more than before.  
Don’t get me wrong, I have not always been happy with Shawn Jr.  For all his intelligence, talents, and terrific character traits, he often did not work as hard as I would have liked.  He coasted a bit by being smart, likable, good looking, and charming.  He never did as well in school as he should have.  His grades were not strong for a boy who is much smarter than your average student.  For a father who is constantly pushing the importance of academics, I was annoyed when he didn’t work harder in college.  Shawn was a great athlete, but never became the player he could have been because his athletic work ethic was just average (confirmed by both Jared and Bryan who have both been Shawn’s roommates at Baylor and at home as well as his teammates in basketball since he was in the 3rd grade).  Despite these things, I was never too worried ab…

Romans 8:18-21

I consider that our present sufferings are not worth comparing with the glory that will be revealed in us. For the creation waits in eager expectation for the children of God to be revealed. For the creation was subjected to frustration, not by its own choice, but by the will of the one who subjected it, in hope that the creation itself will be liberated from its bondage to decay and brought into the freedom and glory of the children of God.”
Romans‬ ‭8:18-21‬ ‭NIV‬‬

A Rare Quiet Night

Nights are hard for Shawn Jr.  Because it is difficult for him to breathe, he has to sleep basically upright, at a 65 degree angle.  He is also very restless.  He wakes up many times throughout the night.  When he wakes up, it is because he is short of breath or because his heart has slowed and skipped a beat.  So, each time he wakes up is a starteling and scary experience for him.  He wakes up, bolts straight up, quickly moves to a sitting position on the side of the bed, will then walk around the room and will often go sit in a chair.  In the early days, when this would happen, I would wake up immediately or he would call out for me.  After a bit, if it was just a “normal” situation he would not call out for me because he wanted me to sleep. So I would sometimes wake up and see him sitting on the side of the bed.  It would cause me to panic because I was not awake when he needed me.  I would rush to him and he would tell me what happened.  I would then try to convince him to go back…

Drawing of Shawn Jr

An artist came by today and drew a picture of Shawn Jr.   This was a picture of him from our family Cayman Islands trip.  Shawn loves the beach. 

Living in the Moment - The MLB Home Run Derby Story

Shawn Jr. had a hard day yesterday. He slept much of the day, struggled to speak and was (at times) a bit confused.  All of these symptoms are a result of the carbon dioxide building up in his body.  It is so hard to see him like this.  
I have not shared some of the most private and powerful moments of this experience on this blog (yet).  I am really just using this blog to update people and capture a few thoughts.  Some of the stories will never be told publicly.  Others I might feel up to writing about someday.  Some are almost too big to reduce to writing.  There have been a few times that have reminded me that I must live in this moment with all my heart, mind and soul.
One of these times actually relates to the MLB Home Run Derby.  Last Friday Shawn was struggling to breath and wake up.  He was sitting on the side of his bed, slouched over, and I was kneeling on the floor, holding him up. He had not spoken in over an hour (despite being “awake”).  He came to for a minute and said,…

Are Cancer Patients Courageous?

You often hear that people fighting cancer are “brave” or have “courage.”  I was always a bit perplexed with the use of that word in connection with a person that has cancer.  I get that it is meant to be a word of empowerment.  An encouragement to a person that is going through struggles every day just to survive.  Courage is a noble word that invokes admiration for the actor.  But is it the right word?  Is this really courage?  
Before living this struggle with Shawn Jr, I thought it was a nice intent, but the wrong word.  To be courageous or brave means electing to do something that puts yourself in harms way.  It is voluntarily choosing to do an action despite the apparent danger.  This is not really what a cancer patient is doing.  No one elects or volunteers to get cancer.  Then when you have cancer, a person is going through the treatment process to get better.  Sure it is hard, but is that really courageous?   I didn’t think it was - until now.  
Through Shawn Jr’s process, I no…

Moving to a Different Mode of Care

We got some incrediably hard news yesterday from the doctors.  Shawn’s lungs are just too weak to breathe off adequate amounts of carbon dioxide.  This is causing him to be a bit confused and tired.  Given the quick progression of the cancer around his lungs, there is no turning back from this condition.  Therefore, they are no longer treating him to cure his disease, but they will be trying to keep him as comfortable as possible for the time we have left with Shawn.  
Despite this devastating news, yesterday was actually a really good day.  Shawn was mostly alert and awake.  He ate well (breakfast and dinner), we took him for a walk around the hospital, he talked to his friends and he hugged people.  We got a family picture and even got a Noelle group selfie. 

Amazing Visitors

Shawn Jr had 22 people visit him yesterday at MD Anderson in Houston.  None of those people live in the Houston area and 3 were from out of state.  It was nice to see how loved Shawn is.  People talked, laughed, shared old stories, cried, and just sat quietly.  
Yesterday was a reminder for me that (1) we are not in this alone and (2) this is a struggle for everyone involved.  I too often selfishly view this as my son being critically ill.  I monopolize the situation in my own mind.  Last night was a vivid reminder to me that Shawn Jr is not just a son.  He is a brother, brother-in-law, grandson, nephew, roommate, teammate, classmate, neighbor, and (most of all) friend.   Shawn has touched so many people and is loved by many.  This is a shared situation for everyone.  
Thank you so much to everyone for your continued love and support.  It means so much to our family.  

Shawn’s Lungs Are Failing

Shawn’s lungs are failing.  He is getting oxygen but he is not able to breathe off enough carbon dioxide.  The doctors have put him on a BPAP machine to help him breathe.   But, they are not optimistic that he can recover from this.  His lungs are just too weak.
“Then the Lord God formed a man from the dust of the ground and breathed into his nostrils the breath of life, and the man became a living being.”
Genesis‬ ‭2:7‬ ‭NIV‬‬

July 4th Update

Shawn is doing a bit better today.  His nausea is not as bad and he has been eating today.  
July 4th has always been a time when our family spends time together.  This year Misty, Shawn Helms Jr and I are in Houston and the rest of the crew is in Heath (with Reese and Brittany in Nashville).  
Hopefully next year we will all be together.

More Frustration and No Good News

We had no good news today.  Shawn had his various appointments at MD Anderson and we didn’t hear anything encouraging.
Shawn had a CT scan this morning and we had a follow up with the pulmonary group.  The results of the CT scan showed that the cancer is spreading around his lungs.  We knew this was somewhat likely because it is harder for Shawn to breath now than it was a few weeks ago.  The pulmonary doctor said that there is nothing surgically that can be done to help his shortness of breath.  The problem is the cancer, so that is the battle that needs to be won.  
Shawn did bloodwork and we went to see the oncology team.  Shawn was scheduled for another treatment of chemotherapy today.  However, because he is struggling with nausea and shortness of breath, they decided to hold off on the chemo and admitted him to the hospital to get his symptoms under control.
I am seeing some discouraging looks from the doctors.  I can tell they are concerned about his lungs and they don’t (yet) hav…

Long Day Tomorrow - Chemo #2

We made it down to Houston tonight for Shawn’s next appointments at MD Anderson tomorrow.  Shawn has struggled today with nausea and continues to be very short of breath.  He got sick a couple times today and has not eaten well in 3 or 4 days.  Shawn has to be on oxygen all the time, day and night.   We used an oxygen tank, borrowed from a friend, to make it down to Houston.  
Shawn starts his day early tomorrow morning, at 6:00 am, with a CT of his chest and has another 5 appointments.  He meets with the pulmonary team and the melanoma team tomorrow.   He is scheduled to get his second chemotherapy treatment tomorrow afternoon.  
Tomorrow is a long day for us.  

Luka Magic

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.  

Day 5 at Home

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.  

Status and Prayer Requests

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 attit…

Organizing Shawn’s Meds

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.  

Discharged and the Curbside Oxygen Machine Purchase

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 prescription f…

Visitors at MD Anderson

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 …

No Better and No Worse

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. 

Things We Have Learned

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.  But, …

Chemotherapy Treatment Day

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.  

Change in Direction - Adding Chemotherapy

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.  

Treading Water

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...

Thank You All

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. 

Trusting the Lord Each Day

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 so…

Trouble Breathing and Uncertainty

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.  Ther…

Psalm 23

“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

Every Day is a Winding Road

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 …

25 Lbs

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.  

Headed Home - For Real

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

Another Night in the Hospital...Watching Friends

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 Diagnostics i…

Likely Headed Home Tomorrow

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 breathing…

Minor Setback

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 heart ra…