It's a good day!

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!

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......"

I think this is exactly why they told us not to get our hopes up......

Today, Matt had his first MRI since radiation.  I went in full of hope and optimism.  Matt has seemed to be doing well.  He has been enjoying school, feeling great, and aside from a bit of tiredness (that could be attributed to me just looking for something to report), has been as good as he's been in 4 years.  In fact, he even seemed to be losing weight.  He put on a pair of pants from 2 years ago last Sunday and they fit!  After doing something so high-tech and exciting to treat his cancer, I was just sure the IMRT radiation would be a success.

Anyhow, the results of the MRI weren't just a little disappointing, they feel devastating. 

The conclusion reads:
"Growing tumor volume in the original tumor bed and extensive supra and infratentorial ventricular and subarachnoid space enhancement with ventricular and subarachnoid space tumor spread."

What this means, is that the large main tumor has grown and is filling all available space surrounding it.  It is enhancing under contrast, meaning the cells of the tumor are active and growing.  Also, and this is the really bad part, it has disseminated and spread.  Those itty bitty bits of disseminated tumor are the most difficult to treat.  It would be like trying to dig a grain of sand out of a bowl of soft frosting, without disturbing the frosting.

Matt started crying as his oncologist was explaining the results of the MRI.  That broke my  heart!  He feels so frustrated that he can feel so good and assume everything is going so well, only to find out that it is not going well at all.  We can all relate.......  It was a soggy car ride home.

So, the next step is most likely surgery.  We have an appointment with our Neurosurgeon on Tuesday.  I have a feeling that with his tumor behaving so aggressively, they will want to operate quickly.  After surgery Matt will be going on chemotherapy.  We were talking about probably metronomic (daily) Temodar along with Carboplatin and Vinblastine or Vincristine.  Matt was on Temodar before and he tolerated it very well.  I don't know if there will be different side effects with taking it daily.  He was also on Carboplatin for a short time and it made him very sick.  Vincristine is also one we're familiar with.  He was on it for 2 rounds and his sodium went so low he had to be admitted to the hospital.  I'm sure that with his Panhypopituitarism, they will be very very careful in regards to chemo.  I am also hoping that since we are more familiar with Matt's medical issues, we will be better able to manage the chemo process.  I feel like I am in a better position to advocate for him now.  I just think back to last time he was on chemo and I learned a lot (IV anti-nausea, anyone???)  I feel better prepared to evaluate his endocrine issues and would recognize low sodium before it got to the low levels he had last time.

So, there it is.  Sorry I've been so bad about blogging lately.  Life has just been going so beautifully that I think I just wanted to enjoy it.  It has been a pretty wonderful six weeks.  Normalcy..... Bliss!