Yesterday we went to PCMC to meet with Matt's neurosurgeon. I had spoken with their office on Monday and learned that Matt had been put on the surgery schedule and that they were beginning preliminary preparations for another craniotomy scheduled for TODAY. We were very anxious about the surgery - not like a prompting to not do the surgery, but feeling very very nervous about it. With brain surgery, there is so much that can go wrong. We have met children with many different surgery side effects, everything from foot drop or facial droop, to children who have had a stroke on the table and are now paralyzed on half of their body. Surgery can affect cognitive function and hormone function. That brain of ours controls everything! Matt has escaped most major side effects. He has some cognitive/memory issues (that could be attributed to the tumor OR the surgery, who knows??) and, of course, he has no hormone function. Overall, though, we feel like we've won the 'surgery lottery' three times, and every time we go in, the odds of winning go down.
After much discussion between doctors and ourselves, we decided to forgo surgery for a bit longer. Matt is doing SO WELL, and we don't want to mess with that. He has no symptoms from his tumor - no headaches, no seizures, no vision problems, no balance problems. Dr.Walker is very leery of another surgery causing problems. Also, the tumor is *still* in a bad place and the direction it is growing puts it in an even worse area. Surgery would not remove the entire tumor, that much is sure. We decided instead to opt for chemotherapy, hope that the chemotherapy shrinks the tumor, and shrinks it into an area of the brain that is more accessible to the neurosurgeon. We will continue to evaluate Matt's situation and hopefully at some point do another surgery that removes a greater percentage of the tumor than we could get to today.
We also drove clear to Riverton so Matt could have an MRI of his spine to see if it is still clear. I need to call and get the result of that today. I'm nervous...... After his MRI, we went to In&Out burger. We had never been there before - what a disappointment! LOL! I even looked up the 'secret menu' and we ordered off of it, but those burgers are ICK! We'll stick with 5 Guys Burgers and Fries, thank you very much! :)
So, now we wait until Monday when we go back into oncology to determine, precisely, what chemotherapy protocol we will do.
Our mood today is very celebratory. I feel very light and happy about the decision. I guess I'm not sure the thought of chemotherapy should make anyone 'light and happy', but with the weight of surgery off of us, it feels wonderful!
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5 comments:
I am SOOOOO happy to hear your news!
We are praying for you everyday! I am so glad that this decision brings so much peace to you, it must be a good choice. I put your names in the AZ temple yesterday. Sounds like you and Shannon could use all the prayers you can get. Hang in there and tell Matt we are cheering for him!
Lots of love,
Jenny
We're praying for you too. What a blessing to have that feeling of peace.
I'm so glad you are not doing another surgery...that made me feel sick for you all. I hope chemo knocks that tumor down! We'll be praying for you all!
Sounds like you guys made a smart choice...Matt's lucky to have informed parents!
Keeping you in our thoughts and prayers, my friend!
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