Friday, November 12, 2010

A day of pondering and some clarification

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......"


Anonymous said...

You are such an amazing mother! I can't imagine going through what you have, and you still have a smile and a hug for everyone you see. I am in tears right now just imagining your frustration, but your faith has overcome it all and you have an amazing son who is such an inspiration! My prayers are with you and your family always! Love, Steph

Katie said...

That makes me feel a little better. Matt has been such a trooper, it was hard to hear that he was disappointed. He is a great kid. We are so proud of him, and I am sure the Lord is so proud of him and how well he is handling the life he has been given. Matthew-You are awesome!

More hugs and prayers!

Karrianne said...

Alli, the quote about what Matt said about the trials made me cry! What an amazing kid with such awesome faith!

thanks for the extra update, you guys have definitely been in mine and Blaine's thoughts and prayers a lot recently. :)

Amanda said...

What incredible insight for a boy of 12 (and we know boys of 12 around here). Matt is such a strong kid, and you a strong mother. Our prayers are with your whole family as you take your next step.

Cecily R said...

Matt just amazes me. YOU amaze me.

Jessie said...

YOU amaze me. Matt too. Your mom was telling us how amazed she is by you and how much you teach her on a daily basis.
You teach us all by reminding us that life is a journey, and it's meant to be enjoyed. I so easily get bogged down, and it's always inspiring to hear your perspective on things.

I'm glad you've processed a bit and are feeling optimistic! You guys are awesome at fighting the fight, and having fun, too!

Ker-Dog and the gang said...

That Matt is incredible! (as well as the rest of you) I hope and pray that things will improve!