Friday, August 20, 2010


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! :)

Friday, August 13, 2010

I have the MOST awesome family!!!

I just LOVE these videos!  Last weekend our family had a Jones Family Reunion.  This was our impromptu entertainment.  Well...... I'm not sure impromptu is the right word, since Uncle Glen (who isn't technically my uncle - he is my grandfather's cousin - I'm not sure what that makes him to me, but we all just call him Uncle Glen) had brought along his accordion, 2 fiddles, a harmonica, a keyboard with seat, a microphone and an amplifier.  :)
This is the way I grew up.  My earliest memories are singing in front of a crowd - my mom was always telling everyone I would love to perform......  We sang everywhere.  I think it created a very jolly atmosphere at every family gathering.  Just a note explaining why I try to encourage music with my children.  Uncle Glenn here is completely self taught.  At this family reunion he started out playing the keyboard, then switched it up to the accordion, then the fiddle, then the harmonica, back to the accordion, then back to the keyboard - all without a bit of music in front of him or a single music lesson in his history.  It is AMAZING!  Just watching this 90 year old heft his accordion is a sight to behold!  LOL!  My mom is no slacker, either (oh, yeah, for those of you that don't know us very well - that's my mommy on the keyboard.)  She has a gift for music.  She can play anything using music or by ear.  I grew up thinking that every piano accompanist could change keys on my whim.  It was a shock the first time someone else was playing for me to sing and I said, "that's too high, could you lower it a little?"  They looked at me like I had 3 heads.  :)  I'm hoping that some of this talent is genetic!

I only wish I would have still been recording when my Uncle Glen had his wife come up and the two of them sang the two verses of 'Bicycle built for two'.  It was the CUTEST thing EVER!!!

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!