Play-by-Play (I AM UPDATING AS THINGS HAPPEN!)

8:30AM

Talked to Dr May nurse. Does not sound like they see this often. Going solely off of MD Anderson’s protocol. 

9:45AM

Dr May called. She and Dr Booser talked in length. They are currently using Topotecan as their primary drug and have shown 15 week median survival and 15% prolong survival with less toxicity than some of the other well known drugs. We discussed other drugs like methotrexate and mono therapy drugs and she said Topotecan doesn't have to be the only thing we try. If it doesn't work, we will do something else. 

I asked about the brain tumors and the tails breaching the meninges and if that was how the CSF was being fed. Nuero radiation oncologist believe it's all intertwined. The two spots on my brain should effectively be treated/controlled by this therapy. If not, radiation would then become an option. 

I asked about the thoracic and lumbar spine MRI and if there appeared to be any blockages inside the spinal column. Dr Goganini at Emory said that was very important because the treatment would be unable to flow. She and the other doctors seemed quite amazed actually. The spine MRI she said if you didn't know it was there you would've never seen it. She explained it as if the cells were basically lined in single file along the wall and ever so faintly showed on the scan. 

She was again positive they caught this early. They classify me as symptomatic because I've really had no major response to the CSF involvement to this point other than headache. 

She is on board for CBD oil. Cannabanoidoil has proven to cross the blood brain barrier (BBB) AND has proven to kill cancer cells. She laughed and said if she told me to stand on my head to make the chemo run through my spine faster, I totally would. Which brings me to the next discussion.

Omaya Resivior or whatever it's called is placed by a neurosurgeon. Dr Tamaras is supposedly coming into the office between surgery literally to just meet with us! He apparently did brain surgery for Dr Mays husband. She said, “if that tells you how much I trust him…” I also had two other doctors highly recommend him. Basically it's a port put under your scalp with a catheter into your spinal fluid. It has a slightly higher complication rate but we can pray that away. She said this would be so much better than constant spinal tap torture!! See she knows me! She also said they have found to have better success because nothing pumps spinal fluid and going in from the top seems to circulate throughout better. 

Whew. Lots of info so far…

11:00AM

Met with Dr Tamaras whom I'm now in mad love with! He was so through, so on the same page, and friends with my daddy doctor!! Their daughters are BFs!! Say WHAAAA!!? We had an awesome talk. He showed us the scans in detail. Agreed they caught this insanely early. Said he would've never noticed the spinal involvement either. It's so faint. He is very optimistic about the Ommaya implant and said I could even have treatment via the port THAT day!!

11:30AM

We've scheduled surgery:

Northside Atlanta

Tomorrow!!!! 10/14

8 arrival, 11am surgery. 30-45 minutes. 

Spend night in hospital. 

12:00PM

Heading to pre-op for bloodwork. Need everything to be looking good so surgery can happen!!! Big prayers!

...smiling big…

1:00PM

Bloodwork done! Lab tech is now on #teamnadine and praying! Woot. She got us all set up and now waiting to do chest X-ray. Got a note M might be having a tough day! Pray for some peace for her little sweet heart.

1:30PM

Perfectly timed drop in to Dr Namnoums office for hugs. Little did we know he would encourage us in ways I can't even put into words. I know I always post that I love my Dr Daddy, and that he and the staff there at Atlanta Plastic Surgery are just some of the most fantastic people on Earth, but I truly mean it. We ended today's journey with the best visit ever. So glad God had it on the plan today. Jim Namnoum says, "It will work." Period  and end of story. He is not moved. Love my Cindy and Allison so big. 

2:00PM

Plan of action was discussed! Treatments:

AC Systemic chemo continues for every other Thursday. I have 4 cycles left. 

IT Chemo Topotecan 

2x/wk for 6 weeks

1x/wk for 6 weeks

2x/mth for 4 months

1x/mth for there thereafter!!

Don't you love that!!? The plan written out. This will work. 

First dose of chemo in the Ommaya (we need a better name) will be after surgery tomorrow. And the next will be Friday. 

Big big prayers needed. I know you guys have been on your faces for us and we cannot thank you enough. We need you now more than ever. God cleared this path so that every detail today fell into place and we laughed and enjoyed every moment, and I feel like he has got this. We've handed over the timeline. We are fighting together. #teamnadine rocks!