Friday, August 20, 2010

Week 1 COMPLETE!

Today marked day 5 of radiation for Matthew.  His protocol calls for 30 sessions of IMRT radiation.  This works out to 6 weeks of radiation, for 5 days each week.  On Monday, my mom watched our other 5 children, and Warren and I took Matthew for round 1.  We were nervous, and a little excited (after all, radiation is meant to KILL the tumor.  We are pretty giddy and optimistic at that thought).  That first day was a challenge.  Nothing strikes in your heart the reality that 'your child has cancer' more than watching them have their radiation mask get bolted down to the table.

After the mask is fitted, a frame is placed over the mask.  This frame sets 'markers', so they can be sure the radiation is reaching it's intended target.  Each day, Matt receives 2 quick X-rays to make certain nothing has shifted.  Then, he receives his therapy.  In Matt's case, there are 7 different beams of radiation.  Each beam delivers 3 minutes of radiation.  Therefore Matt spends approximately 21 minutes each day in the radiation machine.

Since we are not allowed to be in the room or even watch the monitor while he gets his radiation, we can only guess what exactly happens.  I do know that there is a large 'arm' above him on the machine that can rotate and also the 'bed' Matt is lying on can rotate slightly in 6 different directions.  I'm sure it's not quite as intense as a simulation ride at Disney World, but that's what it reminds me of when they explain it!

Matt was thrilled with the way his mask turned out - and so were we!  It has sort of a graffiti look to it with the words  'Cancer Sucks' written across it in red.  If you know our family, you know that we don't usually speak like that, or allow our children to speak like that.  BUT, given the circumstances, it seemed appropriate! :)


On Tuesday, we had all the boys with us.  We had Will go in with us so he could see the machine and get a sense of what Matt was doing each day. 

On Wednesday, we met up with a friend that Matt met at 'Camp Hobe'.  Truly, an amazing camp!  Anyhow, Matt and this boy were in the same cabin and hit it off.  They are the same age and he also has a brain tumor, slightly different pathology, but with most of the same symptoms that Matt has.  I cannot tell you how refreshing and therapeutic it is to spend time talking with another mom who totally and completely 'gets it'.  I don't have to explain ANYTHING to her.  We have the same daily challenges, the same long-term concerns, and similar personalities when it comes to advocating for our kids.  It was great!

The logistics of radiation are proving a bit tricky, but doable.  School started this week for my older boys.  Warren has those 3 here at home.  Since they are gone from about 8:30 to 4:00, it allows Warren to get a full work day in.  Starting next Monday, I've hired a girl who just graduated from college to come every day when the boys get out of school.  She will help them get a snack, do their homework, and practice piano.  Matt and I are staying in Layton with Warren's mother.  She has been gracious enough to welcome us and is proving extremely helpful in every way!   We've scheduled radiation for 2:00 in the afternoon with the hope that we can put Jake and Audrey down for naps and they can stay with Carolyn while Matt and I run to his appointment.  It's about 2 hours door to door, so it's perfect for a nap time for my littlest ones.  This week went off without a hitch.  Matt's school has also been very accommodating.  We went in and spoke to them last week.  They have a home-bound teacher who will be collecting all of Matt's work and acting as a go-between for the school and Matt.  Since he should feel fine through radiation, he should be able to do his homework.  He's a kid who thrives on school and schoolwork, so hopefully this will just be a blip in his school career.
Thanks for thinking of us and checking in on us!  We're just plugging along at this!  It feels a little bit like eating an elephant, but we're slowly taking bites and are 1/6 of the way done! :)

11 comments:

Alison Bodily said...

I'm sure you must tire of hearing how strong and positive you are being and that everything will be ok, when what you'd really like to do is shake your fist at the universe and scream at the top of your lungs! Well, I too am strangely comforted by your posts and amazed at your courage. I've said it before, but I'll say it again-- Matt stole my heart a long time ago and to see him smiling throughout his ordeal just makes my affection for him grow stronger! He is an amazing young man with an amazing family. You're all Rock Stars in my book!

Kristen said...

You. Amaze. Me! Matt's attitude really shows through in your pictures. Although, I have never met him, I can tell he is one great kid! And why wouldn't he be with the parents he has as examples! Good luck with your journey. I'm not sure I could be so strong!

Cheryl @ On the Old Path said...

Hi Allison,
I followed your link to your blog from the PBT group. You have a beautiful family. Matt is such a brave boy. Blessings to you and your whole family.

Katie said...

Wow. I'm glad things are going so well. Sounds like you have a pretty slick plan! I'm glad the school has been so accommodating. How fun to have lunch with such a good friend! We are keeping you in our prayers!

Jessie said...

Wow. I'm glad all the logistics are working, and that you have connections closer to SLC. If you're ever in a pinch, my house is always open to any of you!

LeishaMaw said...

Good luck and prayers your way.

The Uffens Family said...

mmm... elephant! (although I'm sure it's one of those things you'd rather eat just once!!) : )

courtney said...

hi :)
i've been meaning to check in with yo forever! but please know that your family is ALWAYS in my heart & prayers.
i was so sorry to read that matt's tumor has grown, but inspired by your post of your gratitude to live in a day with good medical care. you truly inspire me!
i hope matt is handling the radiation well, i know the Lord and his angels are with your entire family.
lots & lots of love to you. i wish i could give you big, big hug.
love, courtney :)

Ker-Dog and the gang said...

the cancer sucks mask is perfect :o)
I hope the radiation kills it once and for all! Glad you have help with working out the logistics of with all the kids! You guys are definitely rock stars!

courtney said...

hi :)
i don't have your e-mail & i've been thinking of you lately. just wanted to send you my love, our prayers are always with you!
love, courtney
if you get a minute email me your address please:
mrs.nielson@gmail.com

Huish Family said...

Love that mask! We always told the kids we don't "hate"... yet cancer and hate quickly went hand in hand. Sadie was quick to remind us we don't say that, but we told her it was OK to hate her tumor and cancer... she seemed happy with that!

I regret to say I had to play catch up a bit with the blog - I am so sorry for the news of growth. Matt's a tough kid, and he will do great. You are in good hands at Huntsman, and of course Primarys. We are here if you need us in any way.

Love, The Huish's