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