Tuesday, March 25, 2008

Not good news MRI - SOB!

I can't believe it's been an entire MONTH since I last updated! I suppose we were just basking in our delight at an MRI that proclaimed improvement. This morning we went to Salt Lake assuming the news would remain positive, or at least stable. What we weren't prepared for was this MRI report:

Examination: Brain MRI, without and with intravenous MRI contrast, 25 March 2008, 11:18 a.m.

Comparison: 25 January 2008

History: Primary malignant brain tumor, Pilomyxoid astrocytoma partially resected.

Findings: There has been interval enlargement of the heterogeneous mass that is centered in the suprasellar, anterior inferior interhemispheric, and septum pellucidum. The maximal craniocaudal dimension is 5.8 cm previously measuring 5.3 cm, width is 4.7 cm previously measuring 2.9 cm and AP dimension is 4.1 cm. previously measuring 2.9 cm. I see no evidence of remote CSF tumor spread.

In addition, there is progressive right more so than left lateral ventricular dilation. The third ventricle is unchanged.



Sooooo, in English, we learned that the tumor has grown. In two months it has grown half a cm front to back, and nearly half an inch both in width and top to bottom. The ventricles surrounding the tumor are also more dilated which indicates the spinal fluid might not be draining properly, which means a shunt might be in Matt's future. The good news is the part that says "no evidence of remote CSF tumor spread." Dr. Lemons talked to us about some options. We could begin radiation right away. I am nervous about this option because of the permanent damage that radiation will very likely cause to his endocrine system. The longer we can put it off, the better. I also like the idea of Matt finishing out the school year. Academically, I'm not worried about him, but springtime is the nicest part of the year! I want him to be able to enjoy these last weeks of school - because school defines who he is. Since radiation will be every day, he would not be able to attend school for the remainder of the year. The other option presented to us was a more aggressive chemotherapy regimen. The protocol is a six week cycle in which Matthew would take 3 different drugs. There are certain drugs taken each day for 4 weeks and then a 2 week break. We decided to try the chemotherapy for the hesitations about radiation that I already mentioned. Matthew will start tomorrow on Lomustine (also known as CCNU). We wait one week, and next Wednesday will go back to Primary's for an IV chemotherapy called Vincristine. That same day Matt begins Procarbazine, a pill that he takes at home everyday for 2 weeks. Eight days later there is another dose of Vincristine and then a two week break until the next cycle.

I am so anxious to see how he will handle this chemotherapy. With the previous two types, he has handled everything so well! The carboplatin made him sick, but I think we are much better equipped to deal with this possiblity this time. I have IV anti-nausea medications (3 different types!), as well as IV hydration that I can use if he can't keep food or liquids down. His blood counts have remained in the normal range for the past 8 months - with the exception of the first month, but I am beginning to suspect that was a fluke! Now we are beginning something new and that is always scary. Scarier than the side-effects, though, is the possibility that this chemotherapy will also fail..... I just want something to work so badly!

12 comments:

Em Russ said...

Oh, Allison! I am so sad to hear that things didn't go how we all hoped. I wish I could say something comforting... Know that you all will be in our prayers! Hang in there.

Karen said...

Gosh dangit, I was hoping that there would be more good news! I am so sorry. Please let me know if there is anything I can do for you. I will keep you in my thoughts and prayers.

Deborah said...

I was anxious to get an update but not one like that. I hope this chemo is well tolerated and does everything it's supposed to do. Is there anything we can do to help? We'll continue praying.

joshandamyp said...

Oh Allison, I am so sorry! We will keep your family in our thoughts and prayers!

-Amy
from TS

Polly said...

We've been checking often, hoping for more good news. This just makes my heart sad for you, and your little boy, and your family. Let us know if we can help - besides all the prayers and positive energy we can possibly send your way! Hang in there!!!

Jeremy & Polly

belmomma said...

Alli, we are praying for you all
Denise

K said...

I'm praying for you too. How is Matt coping with the news?

Jeremiah Nielson said...

allison, i love you, i love your family and you are in my prayers. i hope this new round will be the answer we're praying for. stay strong, i know the Lord is with you and your family.
love, courtney

Jessie said...

Man! How incredibly frustrating. You DO need those Rittersport chocolates.

I hope to see you soon. Keep us posted on Matt, of course. Sending my love your way.

Jennifer said...

I cried when I read about your little family. I can't even begin to imagine what you guys and those sweet little boys must be going thru. How do you even begin to explain to his baby brothers what is going on and what the outlook is. Make every moment count and know that God is with him and your family.

Burton Family said...

We are so sorry to hear about this set back. I hope that you can find comfort in our continuous prayers. You guys are always in our prayers. We love you-
Cristy

EmilyCC said...

I'm so sorry to hear this! Glad to hear that there are lots of plans in the works!

Keeping you all in our prayers...