Post-Surgery Update

We are back home in Tennessee after Courtney’s surgery and our second trip to MD Anderson. I’d like to give you a more detailed update on what happened, and what the next steps on our journey will be.

We flew out of Atlanta late Thursday night, arriving in Houston around midnight. It was a short night, with only 4 hours sleep, before we had to be up and checked in for surgery at 5:30am.

In pre-op we knew they would be taking some blood, to check her electrolytes and other levels. Needle #1. The tech came in to draw blood, and I can honestly say I’ve never seen this process go smoother for Courtney.  It was almost instantaneous!  The tech did a great job!  Courtney hardly felt a thing, and before we knew it, she was done.

Getting ready to leave pre-op.

Needle #2 was the IV.  Again, this went so well.  It was a little uncomfortable for her and thankfully had no issues putting it in quickly.

The anesthesiologist began to cover what pain medications they’d be giving her during surgery, as well as afterwards.  Courtney quickly explained that most pain medications leave her feeling very sick.  She requested no pain medications, saying she’d rather be in pain than nauseous.  What a trooper!  They did have to give a quick acting dose at the beginning of the surgery in order to intubate her with a breathing tube.  Other than that, no narcotics or other strong pains medications were given.

Headed into surgery

With that, I kissed her goodbye, and they wheeled her off to surgery.  I left to eat some breakfast, and find a waiting room.  After about two hours I got the call that surgery was complete, and the doctor would be coming out to talk with me shortly.

The doctor and I met briefly.  He was very happy with how surgery went.  They were able to get all the additional tissue needed, both deeper and around the original site.  The procedure did NOT require a skin graft!  PTL!  They had to shave her head in the area of the incision to do the procedure, and were able to simply close it with standard stitches.  They will be in for 7-9 days before being removed.

The tissue will be sent to the pathologists at MD Anderson who will review it and have results as early as Friday of this week.  Depending on the pathology results we will have a few different paths.  If pathology results show the presence of microscopic cancer cell, in this case we may need to go back for them to remove even more tissue.  Radiation is not off the table.  If the pathology does not come back clear, we’re likely facing further surgery and/or radiation in terms of further treatment options.  If the pathology comes back negative (best case scenario at this point),  we’ll move to a monitoring stage where doctors will continue to test and watch for any reappearance.  In either scenario, we’ll be headed back in three months for a follow-up, scans and tests.

Post-surgery it took a while for Courtney to wake up, when she finally did I was allowed to come back and visit her in recovery.  She was groggy most of the day, and in some pain.  She elected not to take any strong pain medicine, and took over the counter Tylenol and Advil to alleviate the pain and swelling.

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She was well labeled!
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The surgery incision site.
The look I got when I arrived in recovery…

After she was discharged we went back to the hotel so she could continue to rest and recover.  Sunday we flew back into Atlanta and drove home.  Since being home she has been OK.  The swelling has increased some, and the doctors say it is normal.  It may even get worse over the next couple of days before it gets better.  She continues to take Advil or Tylenol as needed for pain.  She had a rough night sleeping the first night home, but has done better since then.  She’s resting during the day well.

Going forward we ask for your prayers concerning the results we expect this Friday.  We’re praying for GREAT NEWS!  Please continue to pray for a smooth and comfortable recovery at home.  Courtney is doing as well as can be expected at this point.

Thank you all for your continued prayers and support.  We will keep you updated when we know more.

 

-Adam & Courtney

 

 

 

 

Surgery Scheduled Back in Houston

When we last updated, we let you know that surgery will be the next step for Courtney.  The date for that surgery has been set, and we will fly back out to Houston next week for surgery on November 3rd at MD Anderson.

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The goal of this surgery is to go back to the original location of the tumor to remove more tissue in and around the area.  If you’ll remember, the tumor was found on her left temple, right along the hair line.  The procedure was done by a physician’s assistant at the local dermatologist’s office.  At the time, they believed it to be a common skin cancer.  In short, they didn’t know what they were actually looking at, and as a result they didn’t do a comprehensive enough removal to satisfy the doctors at MDA.

The surgical oncologist at MDA will attempt to remove more tissue from the area.  They hope to be able to close the surgical site with existing skin, but may need to a skin graft.  This decision will be made during surgery, and will depend on how much tissue is ultimately taken out.  She will be under anesthesia for the duration of the surgery.

After surgery pathologists will study the tissue to ensure that no microscopic cancer cells are present.  Based on their findings we’ll know whether or not radiation will need to be done.  They have already ruled out chemotherapy, and we are praying that radiation won’t be needed either.

Post surgery we know that we will have multiple trips back to MDA for testing and scans.  4 times a year the first year, and 3 times a year after that.  Despite the fact her cancer was caught early, it is still a very aggressive type, and typically jumps to the lungs.  Radiation, if necessary, will be done there as well.Doctors will watch her closely over the next few years as we make multiple more trips.

Please continue to pray as we head back out to Houston.  Pray for a smooth surgery.  Pray for good anesthesiologists.  (Courtney’s body has not reacted well to anesthesia in the past)  Pray for safety as we travel.  Pray for a minimally invasive surgery, that will not have any significant cosmetic impacts due to scarring, hair loss, etc.  Pray for safety as we travel.  Pray for continued healing!

Thank you for the continued love and support.  We couldn’t do it without you!  We have talked to countless people every day who tell us they are praying.  We’ve even run across strangers who are lifting us up in prayer.  It is an overwhelming yet comforting feeling.  Thank you, please keep them coming!

Love you all…

Adam & Courtney

 

 

To recap our journey so far, read the following previous posts:

Update #1
Update #2
Update #3
Update #4
Update #5
Update #6
Update #7

MDA Phone Consultation

We received a call today from one of our doctors at the MDA Sarcoma Center.  It was a scheduled phone consultation to go over the results of Friday’s ultrasound, and to discuss the pathologists review of Courtney’s diagnosis.

He lead with the news that the ultrasound came back normal.  The ovaries and uterus looked good.  He didn’t suspect they would find anything, but based on the activity from the PET Scan, he wanted to rule everything out.

The pathologists report was a little more tricky.  From the very beginning of this journey it seems we’ve been waiting on clear pathology results.  It took a long time to get initial results from the first two biopsies here in Tennessee, and it even took MDA Pathologists awhile to determine what they were looking at.

The initial diagnosis was Leiomyosarcoma.  However our first meeting with a doctor at MDA cast some doubt on that verdict. They conclusively ruled out a rare type of Melanoma, one of the other possibilities it could have been.  Which left us with either the original diagnosis, or another type of sarcoma. It turned out to be a different type.

Stage 1 Myofibrosarcoma, was the final diagnosis.  Also very rare, and even more rare to have started on the head.  At least we now know what it is.

Learning whether or not it had spread was a key question we’d hoped to learn the answer to while at MDA.  Now that we know it hasn’t, the conversation turns to treatment and prevention.

Chemotherapy was already ruled out while we were there.  Radiation is a last resort for this type of cancer, and not immediately necessary at this stage.  Surgery is the recommended course of action by the doctors at the Sarcoma center who’ve treated this before.

An oncological surgeon will call us in the next few days to schedule surgery at MDA, roughly 3-4 weeks from now. They’ll go back to the original site of the tumor and remove a larger portion of skin and tissue around that area.  The 2nd biopsy that removed the tumor didn’t provide sufficient margins to be completely clear of any further risk.  This surgery will achieve the better margins that are necessary. During the surgery they are likely to take enough skin and tissue that they will need to use a skin graft as part of the healing process.

After surgery, the pathologists will review whatever tissue is removed.  Based on their findings we’ll learn if radiation will be needed moving forward. In either case, we’ll more than likely be making 3-4 trips a year to MDA for follow-up visits and exams, for at least the next two years.

While we hope and pray it does not spread or come back, the doctor said there is a chance it could.  If it did reappear it would likely pop up in the same spot, or spread to the lungs.  As a result, they will do regular CT Scans and chest X-rays to try and catch anything early.  It was caught early this time, and we’re thankful for that.

So for now, we finally have some answers, and we have a better idea of what the future holds.  We still need your prayers!  God can still do a miracle, and we are praying for just that.  We have seen him work on our behalf this far, and are believing for even greater things to come!

Please continue to pray for wisdom, peace and healing.  Also pray, as regular trips to MDA become our new normal. 

While we finally have answers, in many ways we’re still at the beginning of this journey.  We are hoping and praying for good outcomes at each step along the way. 

It’s been a long two months!  In the midst of all this the kids have started school, and fall break is coming up next week.  Months ago we planned and paid for a trip to Disney World in Orlando.  Hotel, dining, park tickets, all of it, planned and paid for way before any of this became a reality.

We’ve really struggled over the last few weeks with whether or not to take the trip.  For one, we weren’t sure if we’d even be able to go.  If Courtney had started some sort of treatment, or needed further testing, we weren’t sure we would even be able to make the schedule work.  I didn’t get trip insurance, and so we would have lost money if we simply cancelled the trip.  On the other hand we weren’t really comfortable with the optics of shuffling off to Orlando to live it up at Disney while so many people have offered us much needed love, support, and help, during this challenging time.

In light of everything we’re planning to continue with the trip.  We honestly need the time away!  The kids have been looking forward to it.  We have been looking forward to it.  We couldn’t imagine doing anything better for our family right now than to continue with the trip.  So, we leave early Friday morning to visit the happiest place on earth!

We truly appreciate your prayers and need them as we continue this journey.  We will continue to update you as we learn more, and take steps forward.

We continue to ask for wisdom, peace, and healing in Jesus’ name!

Thank you all!  We love you.

Adam & Courtney

Houston – Day 2 and 3

When we last updated on day 1 we were headed to a brain MRI.  The results came back clear!  The doctors did not expect anything to pop up on the MRI, but wanted to be thorough in checking everything.


The test involved an IV, and once again we had wonderful nurses who were able to keep Courtney calm and comfortable, but most importantly were able to setup the IV on the first try.  No problems, no reactions, PTL!

Yesterday, Day 2, we waited eagerly for the results from the MDA Pathologists.  We received a call late in the afternoon letting us know that they had not completed their diagnosis and the report was still incomplete.

Today, Day 3, we started early.  The first appointment was a Neuro Interventional Ultrasound of the Neck and lymph nodes.  If you’ll remember, the PET Scan raised concerns the cancer had spread to the lymph nodes in her neck.  This test was ordered to give doctors the clearest picture yet of the specific lymph nodes in question.

The two lymph nodes that popped up on the PET Scan looked great and they were able to rule them out as a concern. During the ultrasound however another lymph node was noticed as irregular. The radiologist decided to do a needle biopsy in order to determine the nature of the lymph node in question.  Within 30 minutes we had preliminary results.  It was benign!

Our next appointment was with a doctor in the Sarcoma Center.  Again, we were told that the pathologists still had not completed their review.  This mean that MDA still did not have a complete diagnosis.

The first doctor we met with had reason to believe it could still be Leiomyosarcoma, possibly another type of sarcoma, or potentially an aggressive rare type of melanoma.

The doctor at the Sarcoma Center was able to tell us that that the Melanoma Pathologists has ruled out the possibility of it being that disease.  This left the possibility of it being LMS, or another Sarcoma.  Based on previous cases he’s had, and his overall impression of her case, he feels that we’ll end up sticking with the original diagnosis of Cutaneous Leiomyosarcoma.  We will not know for sure until the Pathologists are done with their review.

As a precaution, the Sarcoma doctor ordered a cervical ultrasound to take a closer look at the area around the ovaries and uterus.  This was another area they PET Scan showed elevated activity.  He does not believe anything will show up, but again, wants to be thorough in ruling everything out.

So for now, we’ve been told to go home.  Her team doctors will get the final diagnosis and put together a plan of treatment and care.  We have a phone consultation on Tuesday to learn what the next steps will be.  Even with the cancer not having spread there is still the issue of what to do with the area that was first discovered.  This is what they’ll be deciding.

All in all, we believe we’ve heard the best possible news we could receive at this point.  While we would have liked to know something before we go home, we’d rather it be right than quick.

Being out here has only confirmed that we made the right decision to come.  Each and every doctor, PA, nurse, tech, and staff member has treated us wonderfully!  They’ve been patient to answer every single question we’ve asked.  Most importantly they’ve answered it from a place of experience, having treated similar cases before.

I can’t tell you enough how proud I am of Courtney and how strong she has been through this.  It’s only been 22 days since we got the initial diagnosis.  In just the last two weeks she has had:

  • Full Body Physical Exam
  • Chest X-ray 
  • CT Scan
  • PET Scan
  • Throat & Nasal Scope
  • MRI Brain Scan
  • Neuro Interventional Ultrasound 
  • Needle Biopsy
  • Cervical Ultrasound
  • Uterine Ultrasound
  • Multiple Lab and Blood Workups
  • Three IV’s

She has been poked and prodded, but she’s taken it like a champ! 

It has been a sacrifice to make this trip, but we are completely grateful for the opportunity.  We’ve seen God order our steps here, and know He will continue to watch over Courtney throughout this process.  We continue to believe the best is yet to come.

We fly home to Tennessee tomorrow.  We are ready to be home and see our kids!  We’re ready for whatever comes next!

As always, thank you for your prayers.  Many of you have asked how Courtney is doing, or how I am holding up.  The answer to both those questions is, great!  I firmly believe that’s because of your prayers.  We have felt strength, and we have felt a lot of peace throughout this trip, and I know that is because prayer works.  We continue to covet those prayers.

As we head home tomorrow, we will keep you all updated when we know more from the team at MDA. 

Love you all…
Adam & Courtney

Houston – Day 1

It was an early alarm this morning.  5am.  After two showers and plenty of coffee we took the short drive to MD Anderson for our first appointment.


We arrived by 6:30am to register, and then waited to meet our doctor.

Once he arrived we discussed Courtney’s case, and he reviewed her most recent PET Scan results.  Right away he assured us that two specific areas we were concerned about (adrenal glands, and ovaries) were not anything to worry about right now.  He did want to take a much closer look at the lymph nodes in her neck.

They did a scope of her nose and throat, just to look for any abnormalities, and found none.

The discussion then turned to the original pathology, the diagnosis of Leiomyosarcoma.  He talked about how rare it is, and how even more rare it is on the head where Courtney’s appears to have started.

The doctor ordered some additional testing.  He wants to confirm the diagnosis before coming up with a specific plan of care and treatment.  He feels there is a chance the diagnosis could be wrong.

In order to do this, he’s ordered a brain MRI for later tonight.  This will involve a two hour procedure and include contrast fluid injected via an IV.   This is necessary, really just to rule out a few things.

He’s also ordered an ultrasound of her neck, which is scheduled for early Friday morning.  This will give him a better view of the lymph nodes.

In the meantime, they are re-reading the pathology slides of the original tumor here at MDA.  Pathologists will finally get a chance to look back at the original cells from the second biopsy.

The doctor feels this could shake out to be one of three things:

  1. Leiomyosarcoma
  2. A different type of sarcoma
  3. An aggressive type of Melanoma that can spread to any other parts of the body.

A day that we’d hope to get answers has turned into a day with more questions.

We still feel strongly that we are in the right place.  If the original diagnosis turns out to be wrong, we will be grateful knowing we got a second opinion. If they confirm Leiomyosarcoma,  then we’re still in the best place to discuss treatment options.

They are planning a Tumor Board Conference tomorrow afternoon, to discuss her case as well. This should provide a lot of insight. 

So we wait.  Oh, how we hate the waiting.  I’ve never been a patient person.  It is hard to believe that it has only been 3 weeks tomorrow that we even started this journey.  It feels like so much longer.

We are having to learn to live life with uncertainty.  This might be the first lesson of dealing with cancer that we are really grasping.  As much as we want to know now, and as fast as we’d like to know it, we have to remember that God’s got this, we’ve got great doctors, and we’ll know soon enough.

Even in the midst of this frustrated waiting period God shows up, in little ways.

Courtney had to have blood drawn, and you know they use needles for that right?  Of course she was nervous.  When we got to the lab, it was massive.  The whole MDA complex is massive!  But this place is a well oiled machine.

We signed in electronically at the lab, a few minutes later they called us back.  There were maybe a dozen techs standing by to take patients to rooms for blood work.  We were paired up with one one young lady who walked us to her station.  There, her iPhone was playing a Kirk Franklin song quietly in the background.  Courtney explained her reaction to needles and asked if she could lay down to have the blood drawn, so she took us to another room.

They let her sit in a reclining chair that laid almost all the way back.  The tech then went to work.  We both warned her that Courtney is a “hard stick”.  She smiled, and if that girl didn’t hit that vein the very first try, within seconds!  Praise the Lord!

After the blood was drawn, she stopped and said “I believe God works in little ways”.  She told us how terrified she is of needles, and how she too has had issues with having work done.  But here she is, doing the job she does!  It may seem small, but that experience in the lab today was a Godsend to us. He puts just the right people in our path, for just the right time.

Please pray for the MRI tonight.  Specifically as she gets the IV.  We do not want another repeat of last Friday at the PET Scan.

Over the next few days, please pray for:

  • Peace & Patience – as we learn to live with uncertainty.
  • Wisdom & Clarity – as the doctors and pathologists here at MDA do what they do best.  To nail down exactly what this is, where it is, and what to do about it.
  • Healing – We continue to pray for total and complete healing.

Thank you again for staying with us on this journey.

We love you!

Adam & Courtney

We’re Headed to Houston

As I write this, we are waiting at the Atlanta airport for our flight to Houston.  We meet with doctors at MD Anderson starting early tomorrow morning.

Quick flight from CHA to ATL

Yesterday we got the results of Friday’s PET Scan.  They were not what we had hoped for.

Indications are that the cancer may have spread to the lymph nodes in her neck.  Specifically the lymph node on the left side, also the same side as the tumor they removed.  We will likely have to do some sort of biopsy once at MDA to know for sure.

The spot in her lung that the CT picked up did not show any activity on the PET Scan, which is a big Praise the Lord!

The PET Scan also showed some increased activity around her ovaries.  There are quite a few questions surrounding this particular finding, and will know more from doctors soon.

We’ll have a full day of appointments tomorrow, and will do our best to keep everyone updated throughout our trip to Houston.

Courtney is staying strong, still with a smile on her face.  Not sure how she’s done it, but she’s been great!

We cannot say this enough – Thank you for your prayers!  We need them now more than ever.  We know our God is big.  We know nothing is impossible for Him.  We are believing and praying for better than expected results and diagnosis when we get to MDA.

Thank you for sticking with us on this journey.  It’s certainly not one we expected to take, but it is much easier knowing we have people who love and care about us, holding us up in prayer.

Stay tuned…

The Tale of The PET Scan

Today we finally had our PET Scan. It had originally been scheduled for last week, but due to the modern wonder that is the American Health Insurance System we had to settle for a CT Scan instead.

Things went a little less than perfect…

PET Scan Selfie

Before anyone gets too upset, this update is being shared with permission from Courtney.

Before they start a PET Scan they have to inject a radioactive contrast fluid into your body via an IV. Courtney and needles do not play nice together.

A few minutes into the tech trying to run the needle into her vein, Courtney announced she was going to pass out. At first mention, it was entirely likely that she was just overreacting, and would be fine.

I could tell after a few more moments she was really about to black out. I stood up and held onto her so that I could brace her from falling out of the seat.

This has happened to her before. She has what is called a Vasovagal Reaction after passing out. The first time I remember it was during our first pregnancy. Simply passing out wouldn’t be that big of a deal, but Courtney never does anything half way!  

Then, just like that she was out…

I looked calmly into the eyes of the tech and said, “She just passed out. She’s going to have a seizure next, and when she wakes up she will throw up for about 20 minutes.” I tried to warn him.

Within a few seconds she started having a seizure. It’s pretty scary if you’ve never seen it, but I had, and I knew it was coming. It startled the tech and he helped me lay her back.

As the seizure ended and she started to wake up I calmly looked into his eyes again and said, “You’re going to want to hand me something she can get sick in.” Your think he would’ve learned his lesson the first time. He handed me a cup.

Let’s back up to the few seconds before she passed out. There was another tech in the room. As Courtney started to pass out she lunged across the room to try and help catch her. In the process she tripped over my feet, over her feet, or something. She fell down and somehow landed outside the room, on the ground in the hall. 

She was down for the count. 

I could tell she was in serious pain, and she couldn’t get up.

Fast forward back to our other tech handing me a cup. By this time Courtney had started getting pretty sick. Again, I calmly looked him in the eyes and said’ “Do you need to do anything for your colleague? She looks like she’s hurt pretty bad.” He didn’t say anything, and I was focused on Courtney.

By this time the sounds of the injured tech attracted some help for her. They carted her off to do an X-ray. I’m guessing she got an employee discount.

After about 20 minutes Courtney finally stopped getting sick. We had about 6 people helping us at this point. They brought a stretcher and let her lay down.

We still didn’t have a working IV.

After about 30 minutes of letting Courtney rest, they tried again. I prayed the walls of Jericho down in that room! Finally, it worked! They were then able to inject the radioactive contrast fluid.

We sat for an hour to let the contrast fluid saturate her whole body, and then started the PET Scan. 3 hours after it was scheduled.

I was fortunate to be able to go back to the room with her. I had to step out for a few minutes to avoid the radiation, but the rest of the scan I stayed in the room.

Despite everything, Courtney was a trooper! She’s definitely sick of testing after these last couple of weeks. We’re headed to Houston on Tuesday and crossing our fingers we won’t have any more major tests.

We hope to get results of the PET Scan early next week. We’re taking the images from the CT and the PET Scan to MD Anderson.

Thanks for the continued prayers and messages of support. We cherish every one. Stay tuned!