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.
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:
- A different type of sarcoma
- 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