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

Update on Courtney

We got the call while out of town for a short beach trip.  Courtney had been diagnosed with Leiomyosarcoma.  What started four weeks earlier as a trip to the dermatologist took a sudden turn in a different direction.


A small pea sized bump on her left temple along the hairline grew over 4-5 months and we finally decided to have it checked out.

Courtney self diagnosed herself using pictures, and Google.  Without a doubt she knew she had Basal Cell Carcinoma.  This was of course confirmed by the doctor at the dermatology and skin cancer center here in town.  A small biopsy was done, and we awaited results.

At her second visit we learned that the biopsy sample was not large enough, and pathologists were unsure what it was.  In fact, it looked more like Spindle Cell Carcinoma (still a skin cancer).  So the entire lump was removed and the skin around her temple sown up with 16 stitches.  Again, we waited for the results.

We left town for Orange Beach, our annual trip with two other families, and  got the call just before lunch on Day 1.  Good news!  They got it all!  Her margins were clear.

Then came a second call from the doctor’s office informing us they’d missed something in her results.  This call was a stark contrast to the first just 10 minutes earlier.  The spot on her temple wasn’t a spot anymore, it was a tumor.  It wasn’t a benign tumor, but a malignant one.

Leiomyosarcoma (LMS) was the diagnosis, and we needed to see an oncologist as soon as we were back in town.

The conversation ended with the nurse encouraging us NOT to Google it, but as you can probably guess, Courtney had already accomplished that before the phone call even ended.

We went about the rest of our trip informing friends and family who knew about the initial scare of possible skin cancer.  The beach, the pool, seafood, friends and charcuterie were all a welcome distraction from what awaited us back home.

The day before we left Alabama to go home  we spent the day with Courtney’s family, and the morning at her home church.  There they gathered a group to pray with us.  For healing.  For peace.  For wisdom.

Her first oncology appointment was scheduled with a surgical oncologist in Chattanooga on Tuesday.  The visit was mainly a consultation and our first real chance to ask questions of a medical professional in this field.  He put us at ease by answering every question we could think of.

He then did a full body exam to ensure no other superficial tumors or spots could be seen.  None were found.

He ordered a PET Scan, blood work, and a chest X-ray.

We learned in that first meeting how rare this particular cancer is.  Of all diagnosed cancers each year, Sarcomas make up less than 1%.  There are 30 different types of Sarcomas, and of those diagnosed each year LMS represents only 5-10% of those.  Of that 5-10%, the majority of cases are found in men over the age of 40, and found in their lower extremities.  Courtney is a 33-year-old female, who has it on her head.  The doctor was unable to quantify the rarity of her case.  If you know Courtney, you are not at all surprised that SHE was diagnosed with a cancer this rare.  🙂

The chest X-ray was completed, and showed no abnormalities.  Praise the Lord!

The PET scan was scheduled for the Friday after her first oncology appointment, only three days into this process.  The day before the PET Scan was to be done we got a call stating that insurance had denied the scan.  Many times these scans are denied by insurance complanies because they are “not medically necessary”.  In this case, they simply did not have enough information to merit any kind of approval.  The test had been scheduled so quickly that results of the blood work and X-ray had not made it through the proper channels.

I spent the better part of that day on the phone with the imaging office, my insurance rep, and the oncologist’s office.  We spoke so often that day that they actually memorized Courtney’s birth date, and stopped asking me for it every time I called.

Rather than draw out the process of getting approval for a PET Scan the doctor ordered a CT Scan instead, and the imaging office worked us in at the last-minute for the next day.

During the first oncology visit our surgical oncologist also referred us to a radiological oncologist to discuss potential treatment options.  That appointment was Friday morning.  The oncologist at this appointment was honest in admitting he had never treated a patient with Leiomyosarcoma.  He was still able to go through a number of treatment scenarios based on “what if” results from the CT Scan.  We left his office with many more questions answered about what the immediate and long-term future might look like.

That afternoon we completed the CT Scan and ended a very long, very tiring week.

One silver lining ironically, has been the rarity of the cancer.  Because it’s so rare there has been quite a bit of interest in her case.  On Tuesday of this week a Tumor Board will meet in Chattanooga to discuss her case.  This “board” will consist of multiple pathologists (including the original one who read her case), surgical oncologists, radiological oncologists, and medical oncologists.  Some 15 or so medical professionals, all studying her case.

The first question they will seek to answer is whether or not the cancer has spread to anywhere else in her body.  If not, then the question will shift to how to treat her moving forward and prevent any spread.

Doctors are not clear on how aggressive her cancer is, or if it has spread. These are the questions weighing heaviest on our mind right now.

Another difficult aspect of this is the fact that no one in our area is very well versed in this type of cancer.  Because it is so rare there really isn’t  an “expert”.  Pending the outcome of the Tumor Board on Tuesday we are praying about exploring a second opinion.  We’ve begun to research various sarcoma centers around the country like MD Anderson or Mayo Clinic.  These institutions are equipped to diagnose and treat Sarcomas in a way that our local physicians can’t.  Depending on the results of her CT scans, other testing, and decision from the Tumor Board, we may decide to reach out and explore other options.

We have been very happy with our doctors so far.  The attention they’ve given us has been amazing.  It has done a lot to calm many of the fears we had early on.

It’s only been 10 days (at the time of this posting) since we learned of the diagnosis.  A lot of poking, and prodding, scans and testing have been done in that time.  We are thankful that so much has been done in such a short amount of time.

We’re also thankful for the hundreds of people praying.  We have been overwhelmed by the comments on social media, texts, calls and emails from family and friends.  In some cases we’ve heard from total strangers!

Our prayer and faith remains the same:

  1. We’re believing she is healed.
  2. We’re asking for wisdom (for us and the doctors).
  3. We’re praying for peace.

We know God is in control, and we know he is already working on Courtney’s behalf.  We have seen the fruit of His working even this week.

Many of you have asked how the kids are doing. They understand that Mommy has cancer, but aren’t entirely sure what it all means.  Kids are smart.  They pick up on things, even if you don’t explain it all to them.  They know something is up.

Please continue to pray for us.  Pray WITH us.  Pray for healing.  Pray for wisdom.  Pray for peace.

If you’ve read this far, thank you!  We appreciate all the love and support we’ve received so far.

Stay tuned…we believe and look forward to sharing good results with you soon.