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!

Update on Courtney – #2

This afternoon we finalized an appointment with specialists at the MD Anderson Cancer Center in Houston. We will fly out next Tuesday and begin to meet with the MDA team next Wednesday morning.The first day or two they will do a complete work-up, review labs, re-read pathology slides, and previous scans. They could order new scans, and possibly do other forms of testing. They’ll be able to determine if in fact the cancer has, or hasn’t spread. The best possible news at this point would be to confirm that it has not. That is what we’re believing for. Once they determine that, they’ll put their heads together on treatment options moving forward.
We are continuing local visits and consultation with our doctors here. Courtney has a PET scan scheduled for Friday to help clarify some of the images seen on the CT. Our hope is that nothing new will be found, and the specialists at MDA will work with our local doctors to come up with a treatment plan that can be done locally.
We’re already thankful for the care and expertise we will experience in Houston. They have every specialty represented, every type of oncologist, every type of test, clinical trials, research studies, and more, all under one roof. We are going to see the best in the world.
Please pray for us as we prepare to go. We’re scrambling to line up travel arrangements to, in, and from Houston in less than 6 days. There are a lot of logistics and needs to work out. We have been told to plan on being there 5-7 days. The kids will stay behind in Cleveland.
Thank you again for all the prayers. They are absolutely helping! We praise the Lord for that!
Thank you for all the words of encouragement, advice, texts, Facebook messages, offers to help, etc. We have not been able to respond to them all, but have read each one. 
Please continue to believe and pray with us as we take the next step of this journey. Peace. Healing. Wisdom. Thank you!

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.

A Snowflake’s Guide to Not Being Offended

Has society slapped you in the face?

Do you find yourself lost in a world of protest hashtags?

Did your candidate flunk out of the Electoral College?

Are you bothered that a Muslim can be elected President in this day and age?

Can you believe what Madonna said?!

Then this article is for you!!

It’s easy to constantly be offended in today’s world. Recent studies have shown that being offended increases your risk of heart attack, stroke, and hypocritical intolerance.

These 12 steps are designed to help you prevent being offended.  Follow them closely and see the difference they can make in your life today!

  1. Stop taking yourself so serious. No one else really does.
  2. If you weren’t offended or even aware of the problem before you saw it trending on Twitter, then get over it! Can I get a #Kony2017
  3. Recognize that celebrities (although over-paid disproportionally by gender, apparently) also have a right to free speech. It’s just more annoying when they complain about stuff.
  4. Keep things in perspective. I survived 8 years of Obama, you will make it through Trump.
  5. For Christians: There is a reason we have a special term. So don’t act surprised when the world, acts like “the world”.
  6. Repeat after me – “There is a difference between being offended and simply disagreeing with someone.” Rinse and repeat as needed.
  7. Train your brain to ignore any breaking news alerts that include the hashtag #SCOTUS.
  8. Back away from the keyboard or keep scrolling.  Either one is a necessary response when you read a post that makes your “Oh no he didn’t!” flare up.  Reality is, no one is going to change their voter registration, or become un-gay because of your Facebook response.
  9. Accept the fact that “Privilege” is a real thing, and it comes in ALL the colors of the rainbow.
  10. Use the “Family Restroom” at Target.  It is usually cleaner, more spacious, and it’s a one-seater.  Problem solved.
  11. Unless you’re one of the 300k+ homeless veterans in this country, don’t get too worked up over the refugee “crisis”.
  12. Let go of your hostility toward the inanimate objects that hold our society hostage with their hate and violence. I.e. Flags, Guns, Chicken Mini’s, etc.

Work these 12 easy steps to take your life back. You deserve it!

*Results may vary