Mama_Emma
Mama_Emma
Caregiver: Rhabdomyosarcoma (Stage I)
Get and/or give support
Niagara Falls, ON
Female
My Journal
Jan/Feb 2012 Intro to RADS & Happy 2nd Birthday to Griffin!
December 6th, 2013

DING DONG, lets ring in the New Year with a BANG! Or in our case, a puke. On New Years Eve, Griffin was not feeling well, all day. Throwing up anything he ate. We just figured it was the chemo and thought nothing more of it. We warmed up some frozen pizzas, broke open the sparkling cider and prepared for our at-home celebration! Then around 8pm, I started feeling...odd. I just wanted to go to sleep. By 930pm, I just wanted to curl in a ball in my bed. Marty told me not to be such a weenie and suck it up, it was almost time to celebrate. Well, by 1130pm, I rushed to the bathroom, puking my brains out. Throughout the night, I puked every hour, on the hour, and violently. It was the worst I had EVER been sick. Marty started the next morning. That afternoon, I dragged all our sorry asses to the clinic. Congrats! Our whole family had the freaking Norwalk Virus!!! For a chemo kid, this is very serious! Thankfully, the virus wears out in like 48 hrs, but I seriously thought I was going to die. I had 2 days of feeling like a chemo kid...I seriously felt thier pain. I cannot imagine what they go through day to day. Hats off to every cancer fighter out there...YIKES!

 

I should discribe the tumour at this point. It has grown the size of a large plum? The eyeball is pushed completely over to the right of the socket, on the brink of the orbit. It is flattened to an egg shape and has zero movement and Griffin cannot see out of it. The tumour has outgrown the lid and is pushing down so you can actually see swollen tissue pushing out, under the lid. The skin on the eyelid was actually starting to blister and breakdown from the swelling and the pressure put on it from the tumour. The lid could not cover the eyeball so we would have to put on a glove and try to put ointment on the eyeball to try to keep it moist. Griffin would scream and kick. It would break my heart. They were giving him high doses of steroids to try to keep the swelling at bay as well as adult doses of morphine for the pain. Griffin slept a lot. I don't blame him, I slept right along with him. As a family, we would love our snuggle fests, everybody piled in the bed, everybody comfy, cozy and safe. Nobody can bug us here, cancer does not exist here. Only love and snuggles. Thats it.

 

So in late Jan, Griff started radiation. We met with the head of radiology, Dr Hogeson at Jervinski Cancer Centre in Hamilton. He was amazingly wonderful! We loved him!!! He went over all the pros and cons with RADS. It seemed like there were more cons then pros. But the major pro, RADS shrinks tumours! YAY! Thats what we want and need! We warned us that the radiation will effect Griffin's skin, eye, sinus and possibly brain. They try thier best, but often thier is damage to tissue around the original tumour. He said to expect eye issues like cateracts much earlier in Griffin, like in his 20s vs his 60s like normal people.

 

 But at this point we were living at a hotel down the street from McMaster. We were going to Rads in the morning across town at 7am, then race back to McMaster chemo clinic right after that, then we would crash to sleep in thehotel in the afternoon to wake up and eat dinner. Then chill until we all fell asleep around 8pm. We were lucky enough to have my parents as HUGE supporters. My dad was in change of "home base" as he called it. He kept the laundry going, and (most importantly) was incharge of feeding the troops. Griffin was obsessed with eggs! He would love them scrabled or in egg salad sandwiches and if grandpa took to long to make it, he would eat the egg salad out of the bowl! He also lived on SmartFood (white cheese popcorn) and bricks of Cheddar cheese! I think this combo made his belly feel better. But it was so funny because the nurses actually got "cheese" added to EVERY meal in the hospital, so no matter what the meal was, there was cheese there waiting for Griffy! YAY! Some family were visiting one day in the hospital room, Griffin got his chemo at noon. He prompty threw up into his puke bucket, then quickly ate an egg sandwich before passing out cold clutching a piece of cheese in his fist. teehee. Suuuuch a trooper! And cute too! But this was a reocurring attitude toward chemo, it sucks, lets eat, pass out cold. He just slept through the worst part. These chemo kids are so amazing! My mother was an absolute ANGEL throughout this whole journey! She was there for pretty much EVERY visit, poke, scan and once we fell into a schedule, she took the night shifts at the hospital. Which put my mind at ease and I was able to sleep for a few hours. I couldn't not have survived without her. I will never ever be able to repay her for everything she did for us, but I will spend my lifetime trying...

 

Griffin's birthday is in Feb, it kinda snuck up on me. I was panicking. What if this is his last birthday with us? We have to DO something. But living in a hotel, with a very sick child, I couldn't really plan a party and I couldn't expose Griffin to people with germs. So one night, on a whim, I sent out a plea on FaceBook. I asked my friends to send a "few" dozen cookies for Griffin's Birthday. I firgured I'd have a cookie monster theme and maybe hand out a few cookies at chemo clinic and bring some balloons and that will be it...wellllll...it went viral. My friends shared it to friends, people organized cookie baking parties at work! We stopped counting at 80 DOZEN cookies! And many more poured in! We got cookies from across Canada including, Yukon, BC, Ottawa, Nove scotia, Guelph, London, Toronto. We got cookies FROM STRANGERS in the states, Florida, Maine, New York and from around the world, Austrailia, Germany, England! AMAZING! Many did not leave a return address so I couldn't even thank them properly! We ended up packing them onto platters and leaving huge platters of cookies in the radiation lab, the Ronald McDonald House and the family room, at the nurses station, the front desk of the hotel we were staying at and I even made up little packages for our clinic buddies. I wrote up a little note explaining the cookies that went in the platters so we had people crying while munching on thier cookies! The outpouring of love wrapped up in amazing package of cookies just made our day! We loved being able to spread the love around and celebrate Griffin's birthday, just in a different way. People LOVED the story of the cookies, it made the cookies even MORE special. And the best part? Afterword, people took pictures of themselves eating cookies on Griff's birthday, like they were celebrating along with us! So now he has all these photos of friends and family devouring cookies for him in his scrapbook! AWESOME!!!

 

To be continued...I think I'm getting that carpel tunnel thing in my wrists...ouch!

 

 

 

 

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