Wednesday, November 10, 2010

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!

17 comments:

Karrianne said...

OH, Alli.... I just don't even know what to say! Sorry seems so insufficient.

We care about you and love you guys so much! Lots of love and prayers your way.

:(

Handsfullmom said...

I'm sending up some prayers for your special family and your special son. I'm sorry the news wasn't better.

Malisa said...

I'm so sorry. I hope things take a turn for the better very soon

Calli said...

Alli, I am so sorry! I cannot believe the strength and grace with which you all go through this. I feel like I am always one small step from totally nuts and my "stuff" is nothing like what you are experiencing.

We will be at PCMC next Friday-Sunday so depending on timelines we may be up there at the same time. Seems an unfair place to have to meet up for lunch doesn't it? But Dusty and I would love to see you if we happen to overlap.

We are sending lots of love and prayers!

Kristin said...

Sending your whole family LOTS of love from us. So very sorry to hear this.

Em Russ said...

so sorry. It is sad that he understands the seriousness of everything! Hang in there. You're all in our prayers.

Katie said...

I'm so sad to hear this. Prayers for you all!

johnjillhuz said...

Allison, I just don't have words to express how I want to just hug you and cry with you. I am so sorry. It is such a blow to have the bad news. Please, please, please know that we are praying for you to feel the peace and support that you desire.

We love you!
Jill Hughes and Family

belmomma said...

I'm so so sorry to hear this news. You are an amazing mama. We're praying for you all.

The Huffies said...

In tears for you, Matt and your family - I'm so sorry for this setback. We will pray & fast in his behalf. Lots of love and positive thoughts being sent your way.

Just dandee said...

Oh Alli. Saying I am so sorry just dosen't seem to be enough. My prayers are with your family and especially for Matt. Love you.

Jessie said...

I'm just aching for you guys. I'll be anxious to hear about the likely surgery and how that goes.

I had been enjoying my normalcy, too, right before my family fell apart. Isn't it weird how life is? "Here", Life says, "here's a little moment of strength and normal-ness for you to enjoy", then SMACK! Hard stuff.

I sure love you and your family, and you'll continue to be be in my thoughts and prayers.

Tara Bergsjo said...

I have been thinking of your family a lot lately. I am so very sorry for your news. I will pray for your beautiful family.

EmilyCC said...

Allison, I'm so sad to hear this! Keeping you all in my thoughts and prayers!

Kristen Brady said...

Your family is in our thoughts and prayers.

Shawn, Kristen, and Natalie Brady

Pam Smith said...

Allison, I don't have the words to tell you how sorry I am to have heard this news! We all hoped that Matt was getting a lot better. He does look so great! Please know that you and Matt, especially, will continue to be in all our prayers! Pam S.

courtney said...

allison, my heart wishes that i could rush over to you and hug you & cry with you. i'm so sorry. even though i can't come, my heart & prayers are with you & your dear family.

i think the Lord gives us weeks of "normalcy" & bliss to strengthen us, to fill our reserve. they are gifts i feel.

what an amazing mom you are, i look us to you all the time and i mean that whole heartedly.

love you so much, please keep us posted. we care so much for you all.

love, courtney, jeremiah & girls