Shawn Jr's Journey

We started the Helms Hope Foundation (helmshope.org) 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 dona...

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  www.helmshope.org .  All donations are tax deductible. We are motivated to help lead in the fight against melanoma.

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...

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

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 ...

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. 

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 ‭N...

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 becau...

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).  Desp...

“ 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

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 happen...

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. 

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 ...

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? ...

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. 

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.  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

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.

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 ar...

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.