Shawn Jr's Journey

This has been building for several days, but Shawn Jr is really struggling breathing.  He is hurting and is almost continually short of breath.  He thinks his other lung might be building up with fluid.  (As you might remember, his right lung has a drain tube installed and we drain it once a day).    We have an appointment tomorrow with the pulmonologist at 1:00 at MD Anderson.  

We are headed down to Houston this week for Shawn Jr’s second immunotherapy treatment.  It has been 3 weeks since his last treatment.   The first treatment made him tired and troubled his stomach a bit.   But, for the most part, it went well.   We will not know if this is working for several months.  

We have spent the last few days seeing the sites in New York City.  Shawn Jr was able to go to the Yankee’s game on the first day.  But, he has not been feeling well and has not done anything the past few days.   This is the entire crew at the Yankees game.  Here are the kids FaceTimeing Jr from the top of the Empire State Building.  Shawn Jr and Josh on the subway. 

Our daughter, Noelle, is a freshman at Baylor University.  She received this hand written note from the President of Baylor, Linda Livingstone.   Baylor is an amazing place.  

Skylin is competing in YAGP Finals in New York this week.  Shawn Jr and the other kids are flying to New York City this morning to meet up with with Misty, Skylin, Josh and me.   We are not sure how Shawn is going to feel.  This is a big trip for him really soon after surgery and treatment.  We are not sure how this is going to go.  Please pray that Shawn Jr feels well and enjoys this experience.  

Shawn Jr has had a good 24 hours.  His stomach is not hurting him, he has eaten well and his pain has been good. Super encouraging!

We got home late last night from Houston.  Shawn was excited to take a shower and sleep in his own bed.  His stomach was hurting him a bit.   This morning the family was running around preparing for our trip to New York.  I was not wanting to leave for several reasons.  First, I didn’t know how Shawn was going to feel after this first treatment.  Second, because of all the happenings with Shawn we are really not prepared for this trip.  I realized a couple days ago that we didn’t even have a rental car.  Third, I am just exhausted - mentally and physically.  Forth, I feel super behind at work (because I am).   I thought about just staying home.  But, this is a big and important trip.  We are going to NY for YAGP Finals.  As most of you know, our daughter, Skylin (age 12) is a ballerina. She dances with a company called Elite Classical Coaching.  Her goal for the last two years has been to make it to the finals for YAGP (the world’s largest ballet competition).  A couple months ago, Sky

Today was a long day.  It started at 6:30 and we went from place to place at MD Anderson.  Blood, x-rays, consult, paperwork, etc.  But, at about 1:00 today Shawn Jr received his first immunotherapy treatment.  They administered the 2 medicine immunotherapy threatment via an IV drip.  Dr. Hwu called it the “cannon” treatment.  It is aggressive but he thinks Shawn Jr can take it based on his age and overall good health.  It took about 3 hours.  For the first time, he is getting a treatment that (fingers crossed) is actually making him better and not just treating the symptoms of his cancer.   I called it the “magic drops.”  But, I know that the real magic is God’s healing power.  We are praying that God will supernatural intervene and totally heal Shawn.  But, if that is not God’s will, then let us fight through this cancer with the help of this medicine and these wonderful healthcare professionals.   After his treatment we went by the head and neck center to have the pack on his scalp

Today is the first day of Shawn’s cancer treatment.  

Like a band of gypsies we go down the highway... We are headed down to Houston today for Shawn’s first immunotherapy treatment at 7:00 tomorrow morning.  This is his very first cancer treatment.  Everything else has been treating the symptoms and getting ready to start this treatment.  But, 29 days after his cancer diagnosis, he will get his first treatment tomorrow.  Shawn continues to heal from his surgery last week and is still in pain.  But, he is feeling a bit better.  He seems to be healing well from the surgery.  The latest complication is a new pain in his back.  We are not sure what is causing that pain.   Today he should get the surgical drain tube in his neck taken out and (hopefully) the pack on this scalp removed.   That will feel like progress.   Oh, and I should also mention that the most important thing for Shawn Jr today is watching Dirk’s last home game tonight.  At least he continues to maintain his priorities.  #MFFL

We have encountered great, good and not so good healthcare professionals in our first few weeks of Shawn’s cancer diagnosis and treatment.   Ironically one of the “not so good” professionals we encountered gave us the best advice.  He said - “This is a journey.   Take it one day at a time.”   That was very good advice.   I (we) did not appreciate all the “little” battles that must be fought every day because of the big war going on inside Shawn Jr’s body.  Cancer is the cause, but people don’t die from cancer.  Cancer is not poison it is runaway cells that disturb normal body functions in ways that can cause small and massive disruptions.  The disruptions lead to all kinds of symptoms, need for treatments, surgeries and other issues that lead to mini-battles for cancer patients.   For Shawn Jr these battles are daily.  They include draining his right lung (which is producing 1.5 liters of fluid a day), managing his pain, walking (because the skin graft from his leg now hurts much worse

Shawn Jr is still recovering today.  He is in some pain but is eating a little more and seems to be doing a bit better.  He has been out of bed almost all day - but just sitting.  We have been watching the Final Four tonight.  Jared Robertson came by and watched part of the Texas Tech and Michigan State game.   It has been nice.  For a few brief minutes today, he also seemed normal.

Our family has received an amazing outpouring of support for Shawn Jr over the last couple of weeks.  We have received hand written notes, cards, texts, drawings, Facebook Messages, emails, food, baskets, flowers, gifts and, most importantly, earnest prayers.  These have come from family, neighbors, close friends, work colleagues, school friends, our church family and even acquaintances we haven’t heard from in years.  We have been overwhelmed by, and so, so thankful for, all of these actions.  We honestly didn’t appreciate the broad and awesome love that this community has for Shawn Jr and our family.    On behalf of Shawn Jr and our entire family, thank you to everyone that has reached out to us and continues to support and pray for Shawn’s recovery.  Your encouragement continues to bring us hope.  We love you all. 

We made it home from Houston today.  Shawn is in some pain and still feeling nauseous.  His recovery is going to be slow but, we hope, the worst of this surgery is behind us.  

Shawn Jr was discharged today at 5:30.  We are on the road.  We will stop in The Woodlands tonight because Shawn is not really feeling up for a 4 hour drive.  

Shawn Jr is recovering slowly today.  It has been just over 24 hours since he got out of surgery.  He didn’t get much sleep last night, is in some real pain and is nauseous.  Because of all these things, he has not eaten well and is moving slow. 

Today the doctors at MD Anderson successfully completed Shawn Jr’s surgery with no complications.  They (1) removed the original melanoma spot from his scalp and (2) removed a tumor and several lymph nodes on the left side of his neck.  The surgery was somewhat complicated and long.   He went into surgery at 7:00 am and we were allowed to go back and see him at around 1:30.   They removed the tumor and lymph nodes in his neck  for two purposes.  First, to eliminate the cancer tumor in that spot.  Second, this surgery is part of a clinical trial where they will be taking the tissue from the lymph nodes and attempting to harvest and grow t-cells for potential later use.  They will take the tissue, grow more t-cells and then freeze the entire specimen.  If needed, these t-cells can later be activated, grown into billions of cells and injected back into Shawn Jr’s body to help fight the cancer.   This is part of the backup plan if immunotherapy does not work the first time.   Shawn will be

We just got test results back from Texas Health Presbyterian Hospital Dallas and they said Shawn Jr does not have the BRAF mutation.  This means he does not need to take a BRAF inhibitor and will do “normal” immunotherapy. 

We got to the hospital at 5:30 am.  We are now waiting for surgery to start...