5 days and counting!

Only five more days of radiation!  Ahhhhh!  We feel like we are in the home stretch here and couldn’t be happier!  I’m sure Sam is the happiest of the bunch, but we are pretty darn excited, too, for this initial phase of his treatment to be over!  As you may recall, Sam started out receiving 13 treatments of total brain and total spine radiation at Riley.  This first part of his radiation treatment, known as photon radiation, was the hardest on his little body.  Constant radiation to these parts of his body caused him to be sick and nauseous usually about three to four hours after treatment, lasting through the night.  By the thirteenth treatment, Sam began to loose his hair and had a very rough go of it, as you may remember in the post titled, “It’s Amazing what a little time, fluids and a blood transfusion will do!”  Around treatment number 10, Sam’s cousins and brother Jack, came down to Riley to see what it was all about….

Checking in using his bar coded ID card…

During his radiation treatment, Sam wears a custom, form fitting mask.  We’ve named this blue mask, which he wore down at Riley, his Optimus Prime mask after the famous Transformer character, because of its blue color.  This mask fits very tight to the face and is “fixed or bolted” to the table to hold his head in the same position each and every time he receives radiation.  This always makes me nervous since there is no way for him to sit up or turn his head if he ever feels like he is going to get sick.  They assure me, though, that they watch him closely on a little monitor and would rush into the treatment room if he ever needs assistance.

After his 20 minute treatment, Sam wanted to try out a wheelchair that the kids found in the hallway.  They all wanted to give it a try!

After the 30 minute drive home from Riley and a trip to McDonalds, all the kids felt like taking a dip in “Aunt” Lee’s pool.  If Sam feels up to it, I always let him do whatever physical activity he would like after treatment, knowing that within a couple of hours he will feel too sick to get up off the couch.

On day 14, Sam’s radiation treatment moved to MPRI, a PROTON radiation facility, located in Bloomington, Indiana.  We feel so blessed to be one of five states that have such a facility that is basically located right in our backyard.  It is an hour and a half drive, each way, each day, for Sam’s treatment and we don’t mind the drive a bit!  Some families come from all over Indiana and neighboring states to receive treatment here, so an hour and a half drive is nothing for us.  If you have the time, check out the link to MPRI’s website to learn all about the difference between photon and proton radiation treatment.  It’s amazing!

http://www.mpri.org/flash/presentation.html

Sam lying on the table in the MPRI proton treatment room.  He has a form fitted mask here too, fixed to the table as well, but this one is white.  We don’t have a name for this mask though-shocking, I know, as you know I give everything a name!  Sam will have a total of 18 treatments at this Bloomington facility.  Before each treatment, x-rays are taken to make sure Sam is in the precise position before he receives his dose of radiation.  Even though the proton beam is only on for less than three minutes at a time (he has two fields to treat-so less than three minutes each for each field) the entire process lasts about 30 minutes due to the x-rays and their system of checks and balances.

The staff here is INCREDIBLE!!!!!!!!  I can’t emphasize this enough.  I would seriously need an entire tube of lipstick to show my gratitude in the form of kisses on the cheek to everyone at this facility.  During the first few days of treatment here, I know they had to think I was a basket case since I would have tears in my eyes on a daily basis.  The kindness, compassion, and gentleness they showed Sam was just overwhelming and I was and still am, so grateful that he was/is in their care.

After treatment, the table is lowered, the mask is removed and Sam is ready to go home, only to return the next day for another round of treatment.  If Sam feels dizzy, feels sick, or is just tired, the staff allows him to lay on the table for as long as he needs to until he feels ready to leave.  Most days, he takes advantage of this mini rest period, except Fridays…which is treat day!  Each Friday, each pediatric patient is allowed to choose a brand new toy from the “Toy Shelf.”  This is a definite highlight!

On our way home!

After treatment, we load up in the car for our trip back home, sometimes with a stop to McDonalds or Burger King for some lunch.  (Okay, this happens more than sometimes.)  Sam usually snoozes in the back with a cozy blanket and Boo-Boo Bunny (more on him in a future post).  Like I said before, it’s not a bad drive and we are home in no time flat and ready to do it the next day.

I never could imagine that so many people got a kick out of Sam’s “red rug” story during one of the last posts.  We received so many emails regarding it that it made us laugh!  Sam’s Aunt Phyllis, with the help of someone in her office, drew up a little characterature of Sam as the “Red Rug Hero.”  He loved it!

So, there you have it!  Five days left of Radiation treatment and three more rounds of chemo until Sam gets a six week break from all treatments until his 48 week chemo treatment begins in the fall.  We can’t wait, but again, probably not as much as Sam!

God is amazing and he is showing us his love through all of you–with all of your kind notes, gifts, delicious meals, phone calls, visits, caring & entertaining of big brother Jack, weed pulling, and all of the other kind gestures you have thrown our way.  We thank you again, so much, for all of your support.  We love you all so much and are so grateful for your friendship.  What would we do without you?  We are stronger because of you.  Thank you!

Love,

Us