It’s been interesting these last few weeks.. month I should say. Ryan is doing well. Staying on 2mg steroid 3 times a day to keep the swelling and symptoms at bay.
We met the neurosurgeon today, and he met with the Hopkins tumor board. They still agree on the radiation necrosis but again can never be sure until they go in. With that said, left sided AWAKE craniotomy is scheduled for September 20th. Surgeon will go in and de bulk the cavity, whether it is dead tissue from radiation or actual recurrent tumor. It will obviously be biopsied and stains will be taken so see the make up. But over all that will hopefully mean that Ryan can come off the steroids after another try for a taper after surgery. We will see how that goes.
Ryan will be able to play his guitar during surgery. Which is amazing to me. Our surgeon is truly incredible and super confident. Which makes me comfortable, but I know the risks. But Ryan thinks this is the better option and I back him 100%.
Other than brain issues, he’s fine other wise. Still on the Taf/Mek combo. No side effects.
Steroids made him gain 60 pounds.. he’s not happy. But he’s alive ❤️
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kellyOd
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Kelly, I will be praying for Ryan during his surgery. It sounds like everyone is on the same page, so that is good news. I told you about my cousins husband who has glioblastoma. He had to have this same surgery again and there was no new cancer, so I will pray the same is for Ryan. So glad to hear he is still on the Taf/Mek with no issues. Did he start with the Taf/Mek alone 1st before he started the immunotherapy? It’s been a while I can’t remember. Mark still is on nothing which really has me frightened, with his body originally being full of cancer all over his body I would feel much better if he was on something, but they want to wait, but Taf/Mek is what he will go back on when he needs to. Mark has his PET Scan & Brain MRI Sept 9th. He has been doing well. I Praise God for every day our men are blessed with.
Mark has gained about 60 lbs as well on the steroids. I know it’s tough on them mentally & physically but thank God they make them feel better.
EnJOY every day. Much love and prayers to you both.
I’m glad there is consensus and next steps in place.
So cool the doc is allowing guitar in the OR. It’s a patient specific way to engage Ryan while also tracking staying in the right brain space during awake neuro surgery. I’m such a geek I’d love to observe this surgery 😇
Kelly, this seems like good news so far. I am very glad that you are confident in your surgeon, that must really help! Will continue sending positivity your way <3
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