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Showing posts from May, 2019

PET Scan Results and Next Steps

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We got the results of the PET scan.  It is not bad news.  The cancer has progressed from his first PET scan - but only minimally.   The doctors were worried that it had spread massively based on his deteriorating condition.  So, that is all good.  
Minimal progression really is good news because (1) immunotherapy works slow, (2) his first immunotherapy treatment was not done until 4 weeks after the first PET scan, and (3) melanoma is an aggressive cancer.  Therefore, it might be the case that the immunotherapy is working well because the progression has been so minimal.
So with that news, they are moving forward with immunotherapy.   Shawn will be receiving his 3rd treatment this afternoon. They are going to keep him in the hospital until tomorrow to keep monitoring him and his labs. If everything looks good tomorrow, he will be released. 
With all the labs they have been doing, they discovered  several things and put Shawn on 7 new medicines!  The humanity... 
One of the things they disc…

MRI Results

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We have some good news.  The MRI results came back today and the cancer has not spread to Shawn’s brain.  This confirmed some earlier results.
Shawn also had his PET scan today.  That is the big one.  We will get the results of that back tomorrow.  The results of the PET scan will show how the cancer has progressed and will help shape the next steps with his treatment.  



Critical Scans Tonight and Tomorrow

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The medical team has decided to take some important scans.  They did a brain MRI tonight to confirm that the cancer has not spread to the brain.  (You might recall that nearly the only piece of good news we got at Texas Health Presbyterian Hospital Dallas is that the cancer had not spread to the brain).   Tomorrow morning, at around 11:00, they will be taking a PET scan.  A PET scan will show the progress of the cancer over the past 6 weeks.  Depending on the results of the PET scan, they will hopefully be able to determine if the immunotherapy is working.   However, there is a chance that they will not be able to tell because of the timing and the fact that immunotherapy works slow.  If the immunotherapy is working, they will stick with that path (which they believe is the best option).  If it is not working, they will go a different route.  The first alternative is the t-cell injection to help strengthen the immune system.  But, hopefully we will hear that the immunotherapy is worki…

Recap and Great Progress

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Recap
Just to recap a bit.  If you have been keeping up with this blog, you know that the past couple of weeks have been really hard for Shawn Jr.  He had not really eaten in the past 10 days due to nausea.  He was only moving out of his bed periodically.  He has lost a significant amount of weight (which is really troubling, because he did not have much weight to lose).  We went down to Houston on Monday night for our appointment with the radiologists on Tuesday.  When we got to MD Anderson, Shawn Jr actually asked Misty for a wheelchair.  While we were glad he asked, this was a big step for him and we knew it was serious.  
When we went to the appointment with the radiology group, they took one look at him and said that he needed to get stronger before any further procedures or treatments are considered.  They were particularly concerned about his nausea, fatigue, and his weight loss (about 30 pounds down since this all started on March 13th and 12 pounds in the last 3 weeks).  Shawn…

Admitted

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Shawn Jr has been struggling with nausea over the past  few weeks.  The last 10 days have been particularly hard.  He has basically not been able to eat anything.  He is losing weight quickly and is really weak.  When we went to our appointment today at MD Anderson, the doctors were very concerned and decided to admit him into the hospital to try to get his nausea under control.  He needs to get stronger to continue his treatments.  



Appointments Today and Tomorrow

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We drove down to Houston last night.  Shawn Jr has appointments today and tomorrow at MD Anderson.  Today is an appointment with radiology to consider radiation on this head and neck area where they had part of the cancer removed.   Tomorrow he has a follow-up with pulmonary (checking on his lungs), a consult with Dr. Hwu in the melanoma department and (hopefully) his third immunotherapy treatment.  
However, the big struggle right now is his nausea.  He cannot eat and it has been terribly hard on him.  So, please pray that they can find a medication that will control his nausea. 



US Health Care Payment Systems are Broken

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As a corporate attorney, I do paperwork for a living.  I pay attention to details, don’t mind reading long documents and I am fairly organized.  Even with my training and experience, I have come to the realization that all the paperwork related to healthcare billing, payments, insurance coverage, explanation of benefits and related documents is almost incomprehensible.  Simply matching the bills to the insurance paperwork is hard.  Sometimes healthcare providers make you pay an “estimate” before providing service.  That estimate almost never matches the actual charges.  Then, when a mistake is made (and lots of them are made) it adds to the complexity.  In my case, one hospital billed part of the charges to Shawn Jr (age 21) and part of the charges to me (age 44).   Because we have separate individual out-of-pocket maximums, this  caused us to be charged more than we should have.  While our insurance company went back and corrected it, that took some time.  All-in-all, I bet I have sp…

Blood Tests and Next Steps

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Shawn Jr has been feeling really nauseous over the last couple of weeks.  It has been rough.  The last few days have been particularly hard.  We spoke with our PA at MD Anderson and she said it was best to have some blood tests done to see if the immunotherapy was causing problems with his organs.  We understand that sometimes immunotherapy can cause the body's own immune system to attack otherwise healthy tissue in the body.

We took Shawn to a lab yesterday and had those blood tests done.  We are awaiting those results.

Shawn Jr has several appointments next week - May 28th and 29th - at MD Anderson.  These are appointments with radiation (for potential radiation on this head and neck), a follow-up with pulmonary (checking on his lungs), a consult with Dr. Hwu in the melanoma department and his third immunotherapy treatment.  We will be headed down to Houston on Tuesday (if not before).

As of this week, Shawn is halfway through the initial 12-week immunotherapy treatment period.


Cancelled Trip

Shawn Jr just did not feel up to going last night.  Almost any movement causes him to be sick to his stomach.  He has not been able to eat for the last couple of days.  Therefore, we are rescheduling the appointment to next week.

Houston Trip

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Shawn Jr and I are headed to Houston tonight for a previously scheduled appointment tomorrow.  He has an appointment with the pulmonologist tomorrow morning and we are not looking forward to the trip.  He gets nauseous with even a little movement.   So a 4 hour car ride is not high on his wish list.  
We will roll in at about 2:00 am. 



Ford Wedding

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Shawn Jr was scheduled to be in the wedding of one of his best friends - Evan Ford.  We have known Evan since he was 7 years old. Shawn and Evan played baseball together for many years and they have been close friends ever since.  We have grown very close to the Ford family over the years and they are certainly some of our closest and dearest friends.  
Shawn was to be a groomsman in the wedding.  This past week has been really hard on Shawn.  He has not felt well.  He is battling nausea and has not moved out of his bed for the past 4 days.  Shawn missed the rehearsal dinner on Friday but was hopeful he could still make the wedding. 
Saturday came and he just did not feel up to getting out of bed.  So he stayed at home as the rest of the family went to the wedding.  It was hard to go without him knowing how much he wanted to be there.  But, I was ultimately glad we were able to go.  Kyra and Evan had a beautiful wedding and it was nice to be part of the experience.  



Feeling Better

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We have been home from the hospital for a few days and Shawn Jr is feeling a bit better.   Not good, but better.   His pain is down, he has a bit more energy and his nausea is just episodic.  We have been draining is left lung only once per day.   We are now only draining his right lung once every 2 days.   Both of these frequencies seem to be enough.  In addition, his neck, head and leg are healing up nicely from the initial surgery at MD Anderson.  So, all in all, good progress.  
So while none of this to necessarily “news” from an overall cancer treatment perspective, at least we feel like he is in a good place.  
Our next appointment for a cancer treatment at MD Anderson is May 29th.   



Mad at God?

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“My God, my God, why have you forsaken me? Why are you so far from saving me, from the words of my groaning? O my God, I cry by day, but you do not answer, and by night, but I find no rest.” Psalms‬ ‭22:1-2
People know we are a family of Christian believers.   A question I have been asked is if I (Shawn Sr.) am mad at God because Shawn Jr has cancer. 
Before I answer that question, let me tell you about a conversation I had with Jr.  Unlike his father, Shawn Jr does not talk much.  So, when he does, you want to stop whatever you are doing and listen close.  One of these rare occasions happened in the kitchen last week.  It was late.  After 11:00.  Everyone was going to bed and Shawn started talking.  It was one of those rare instances.  So I hopped up on the kitchen island and started listening and asking questions.  We touched on lots of topics.  I asked him if he was scared.  He said he wasn’t.  I asked him if he was mad at God.   Without hesitation, he said he does not blame God and i…

Headed Home to Heath

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Shawn Jr has his appointment this morning with the head and neck team at MD Anderson to check on the healing process from his surgery.  That appointment went well.  No issues and he is healing well.  
Shawn Jr is feeling much better and had a good night’s sleep (for the first time in maybe a week).  He looks much better and is moving good today.  

We are in the car headed back to Heath.  It will be good to be home.  



Surgery Outcome

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While the surgery had no complications, it did not work. The lung was not able to expand and stick to the lining.  So, Shawn now has 2 drain tubes in - one for each lung.   
They were able to drain 3 liters from his left lung.  Think about that a minute.  That is almost 7 lbs of fluid!  At least he should get a little relief from that fluid being off his chest.  
Shawn is in some pain right now, but looks much better.  He was discharged and we are finding a hotel nearby. He has an appointment tomorrow morning with the head and neck group at MD Anderson.  So we are going to find a place to stay tonight and will be back at  MD Anderson tomorrow at 10:45.  
We just need the magic drops of immunotherapy to start killing this cancer so his lungs will stop accumulating fluid.





Surgery #3

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This morning Shawn Jr is having his 3rd major surgery in the last 7 weeks.  He is having a pleurodesis on his left lung to close the space between the lung and the outer lining.  He will be under general anesthesia.  He went in at 7:20 am this morning.  The procedure should take just under 1 hour.   He will be in the hospital a day or two recovering.  The recovery is apparently painful.  
Please pray everything goes well, that this helps him breathe easier and that he is not nauseous after the surgery.



Surgery Tomorrow Morning

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Shawn Jr has been struggling breathing.  We had an appointment at the pulmonologist at MD Anderson today.  We expected that fluid was building up around his left lung (from the cancer), like it is around his right lung.   They did an x-ray on Shawn Jr’s chest and, as expected, he accumulated a significant amount of fluid around his left lung.  He was originally scheduled for a pleurodesis surgery on Thursday.  But, because he is really struggling breathing, they wanted to get him in earlier.  Luckily they got a cancellation tomorrow and Shawn Jr is now scheduled for surgery at 6:00 am tomorrow morning.   
They will be doing a pleurodesis - a surgery to stop fluid from building up around the lung. The surgery seals the space between the tissues covering the lung by using sterile talc to make the tissues inflamed so they stick together. As a result of the surgery, there is no space for the fluid to collect.  Shawn Jr will need to drain his lung twice a day for about a week but then the d…

Melanoma Monday is Today

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Seven weeks ago, our oldest son, Shawn Jr, was diagnosed with Stage 4 melanoma cancer.  This is a scary diagnosis and it is going to be a hard fight. 
Today, the first Monday of May, we are making this public on social media, because it is Melanoma Monday.  Today is a day set aside to raise awareness about this disease. Please have yourself and your loved ones checked by a dermatologist at least once per year for melanoma.  If caught early, melanoma is fairly routine and very treatable.  But left unchecked, it can be devastating.  
We appreciate your prayers.  You can keep up with Shawn Jr’s progress at shawnhelmsjr.com. 




Unexpected Trip Back to Houston

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We are, unexpectedly, headed back to Houston tonight.  Shawn Jr is really stuggling breathing.   We want to get him in tomorrow morning to the pulmonologist. 
He cannot sleep. When he doses off he sometimes wakes up in a panic because he is not breathing.  




Update and Next Steps

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Last night we drove down to Houston for Shawn Jr's second immunotherapy treatment appointment. It was a long day and night as Jr was not doing well. He was feeling pain and was having shortness of breath. He thought his left lung was beginning to fill with fluid this past week like his right lung did (which is how we learned he had melanoma originally). His stomach has been bothering him and eating continues to be a challenge.  We could not drive fast enough to Houston. We made it to the hotel near MD Anderson in time to watch the end of the Warriors vs Rockets game - so that was nice. We settled in for the night.  Misty and I fell asleep fast but Jr did not sleep.  He struggled all night. 
Our appointments always begin with lab work and today was no different.  After taking his blood, Shawn was feeling very nauseous.  He dashed to the bathroom and got sick.  After he gathered himself, we headed up to the melanoma department to meet with Dr. Hwu and his team before the treatment. H…