After we get bad news about Matt, I always feel like I'm reeling. It's like, all these pieces of information are floating around my brain, crashing into each other, and bombarding me with new ideas. The first day is THE WORST and then, gradually, I start to process the information. All the little pieces begin falling into place like a puzzle and eventually I get to 'our new normal'. Here are some clarifications about what we are doing and what we are thinking. :)
FACT: Matt 'seems' perfectly fine. He looks and acts healthy and feels great!
FACT: The tumor is still much smaller than it was at initial diagnoses 3 years ago.
FACT: We have a lot of treatment options (including chemotherapy and other drugs, more radiation, surgery) and combinations we haven't tried yet. We are nowhere NEAR the point of giving up or sending him home because 'there's nothing else we can do'.
FACT: We have some amazing doctors at PCMC, and they are in contact with other amazing doctors around the country about Matt's case. His medical situation is very complex, but we've got great people on it. Doctors from UCSF, John's Hopkins, UCSD (Hi Bob!), and, now, Matt's oncologist is heading to MD Anderson in Texas (which, I'm trying to not be grumpy about....). We truly have the best of the best giving advice and recommendations about treatment for our boy.
FACT: PMA's are known to disseminate (little bits of tumor). Matt had a lot of dissemination when he was diagnosed and it was even in his spine. Hopefully, the chemo will be effective in getting rid of those pesky little bits of tumor.
FACT: We have an amazing Neurosurgeon who we trust almost to a fault.....
FACT: We have great doctors all the way around.
FACT: Our disappointment yesterday was not so much that the tumor was DRAMATICALLY different. When you're looking at something about 3 cm., dramatic changes are all relative. :) We went into the MRI and appointment with a scale in our minds of how things could go. On one end was the 'miracle' side where the tumor was completely gone or completely dead. On the other end was the news that the tumor had morphed into something much more aggressive and was taking over his brain. :) Honestly, we knew we would be somewhere in the middle, but we hoped to be a bit further towards the positive side. When we were, instead, a bit closer to the negative side, that was a big blow.
FACT: Despite being disappointed that radiation didn't work, Matt is once again feeling optimistic. He told me yesterday that he knows he's going through this trial because, "Heavenly Father knows I can handle it and I'm learning things He wants me to learn".
FACT: Life is still good. Even when it is difficult, it is a blessing and a gift. Our trials don't define us, unless we allow them to. We refuse to focus so much on the difficult parts that we miss the amazing parts. Ya gotta enjoy the roller coaster, baby!
We will try to be better about keeping everyone updated. We are anxiously awaiting 'the plan'. As Matt says, "we've done this before......"