Thursday, August 05, 2010

Our radiation adventure begins!

Yesterday we met with our Radiation oncologist.  I was very impressed with Dr. Shrieve and felt very very good about adding him to Matt's 'team'.  Initially, I had felt like I wanted to consult with Boston, as well, because Boston is one of only a few centers in the U.S. that offers Proton Beam radiation, and specializes in pediatric Proton care.  I called them last week and sort of started the process, but was really hoping that when we met with Huntsman cancer center we would feel good about using them.  It is infinitely more convenient to stay close to home - even though I would travel to the ends of the earth if it meant giving Matt better treatment.  Dr. Shrieve actually was in Boston for a large chunk of his career and he worked closely with the radiation oncologist that now heads the pediatric radiation program at Mass. General.  He also worked with and knows very well the radiation oncologist that we were supposed to meet with last time we traveled to San Francisco when we ended up spending all of our time in ICU instead of getting the 2nd opinions we had gone to receive (I did speak with her on the phone and she recommended the same type of radiation we are going to be receiving at Huntsman). :)  I don't think it's coincidence that the doctor we are using is someone who has worked closely with the two treatment centers we have received or wanted to receive 2nd opinions from.
We spoke in depth about different radiation options and about protons specifically.  Dr. Shrieve said that in Matt's particular case, he didn't feel like protons offered enough benefit to justify the expense and inconvenience of traveling to Boston to receive therapy there.  The part of Matt's brain that will receive the most damage from radiation is his hypothalamus...... which is already completely shot.  The side effects that Dr.Shrieve would expect are the ones that we have been dealing with for 3 years - mainly complete hormone replacement therapy (panhypopituitarism) and hypothalamic obesity.  He also said that while Protons are wonderful because there is no exit dose of radiation, there is often a higher entrance dose of radiation and his opinion is that because Matt's tumor is so deep, IMRT radiation would be a better choice.  I felt a great deal of peace and comfort while talking to Dr. Shrieve about Matt's history and radiation options.  I felt like this peace was a direct answer to my prayers about feeling confident that our choice of treatment would be what is best for Matthew.
Sooooo, today we started this big adventure.  It was an extremely long day.  Warren kept the boys here, and I dropped off Audrey at Carolyn's (Warren's mother) house.  Matt and I headed to Huntsman for his 'mask fitting' and positioning CT scan.  We had about an hour and a half before his next appointment so he and I went to the zoo and walked around for awhile.  It was so fun to go with just him.  It's way faster to walk the zoo with just one older boy.  We saw practically everything in just an hour!  After the zoo we went over to Primary Children's for the longest MRI, EVER!!  They did a full MRI of his spine without contrast then a full MRI of his spine with contrast, then a special, more detailed MRI of his brain.  For every 'slice' they usually take of his brain, they took 4 'slices', so it was about 4 times more detailed than his usual brain MRI.
Here are some pictures from the mask making.  This mask will be used during radiation.  They actually fasten the mask to the table on the radiation machine making it virtually impossible to move out of position.  They really need those beams to go precisely to the tumor!
Positioning his head in the cradle
Adding the 'mesh' under his head
Using lasers and a 'sharpie' marker to make a perfectly straight line down his face.
Stretching the 'mesh' over his face.  This stuff is pretty neat.  It is a plastic sheet with holes that is heated in a hot water bath.  When is gets hot and wet it gets pliable and feels almost like clear silicone.  They can then stretch the material around the face and it conforms perfectly.  As it cools and dries, it tightens up a bit and hardens.
Waiting for the mask to dry and harden.
Another view.
Going into the positioning CT scan.
The finished product.  Sometimes they decorate the masks.  I don't know if Matt requested that his get painted.  I guess we will see next Monday when he begins therapy!


Alison Bodily said...

What a beautiful story of love, faith, and family. I'm so glad you're sharing the experience with us, your cycber-friends! Tell Matt that he Rocks that Mask! It resembles a Transformer face, perhaps? ;-)

Lots of love being sent your way~
Alison B.

Handsfullmom said...

Thank you for keeping us updated. Matt is so patient! I'll be praying for you, Matt, and your family.

Kristie Harris said...

Allison, what a blessing. It sounds as if the right doc is exactly where he should be at exactly the right time. It is wonderful that you have this blog and you are able to share such a faith filled story with everyone.
Much love

K said...

WE LOVE YOU ALL! Told the kiddos this morning what has been happening and Derek said to tell you and Matt that he loves you and is praying hard for you all!

suzcnoor said...

Oh Allison, I am so relieved to hear that you found that sense of peace in Matt's treatment decision. It has been on my mind all week. Thank you for sharing. We continue to pray...Love ya. Suzanne

Ben said...

I'm praying for you day and night. Way to hang in there Matt! You're one tough guy!Thanks for the updates.
Jenn (and family)

Katie said...

Matt looks like such a trooper in all of those pics. We're so proud of you, Matthew!

MaryAnn said...

Good Job Matt - did you have a funny design on your face after they took the mask off? David thought that was the funniest part.

EmilyCC said...

So glad to hear this! Does Matt get to sleep for these epic MRI's? (I can't imagine trying to hold still and be awake for 4 hours!)

The Falkers said...

What a brave kid he is!!! I am thinking and praying for you guys!! Thanks for keeping us posted!!!