Welcome to my nightmare...This is was the hardest time from my point of view. Griffin was getting really worn down. From the weeks of RADS, on top of Chemo, plus he caught CDIFF, plus the months of steroid use was catching up to him, he started to bloat up and the RADS burned a perfect square on his face. His hair has fallen out, is blood counts were at the all time lowest. This was battle time. We trucked through it.

I should update you on the tumour itself. When it was fist detected, in was 3 cms, then a week later, it grew to 10cms and then it was 15 cms (in volume) at its biggest. It was shaped like a hand, growing off of Griffins Tear duct muscle (we found that out later) and spreading out like fingers, wrapping "around" his eyesocket and poking out the top of his eye. It was quite solid to the touch and was as wide as a finger in places. We could only maybe a couple of cms of it, most of it was hidden in the eye socket itself. Griffin was lucky because it grew "out", in other children it grows "in", the outcome is not good.

Again, we were living at the hotel during the week, only coming home on the weekends. We were very lucky to have my Dad who checked in on the house as well as my best friend Andy and her Husband Jer who took care of our cat everyday, took in our mail, etc so i didn't have to worry about the house while we were away! This was the house that we lived in only 10 days before Griffin was in the hospital so we were still living out of boxes at home, and then living out of suitcases in the hotel. I didn't feel settled, always on edge, ready for the next bump in the road.

And do you know what happens to a house when you don't use it regularly? Huge dust balls would haunt the floors, hiding behind doorways and scooting across the halls. The toilet would grow things...even though it was clean. It smelled, odd. It was like a ghost house. I would come home on the weekend to rotten food in the fridge that I forgot to put in the freezer. I would cry as I tossed it in the garbage. That was pure money and much needed food that I was throwing out. It was my responsiblity to remember this...I'm failing. I felt like I wasn't strong enough to keep everything together. I kept extensive notes, kept every piece of paper they gave us, desprete to try to keep it all on track. Everything was filed in this huge binder, I would carry it around with me like it was the holy bible. A lifeline to my sinking ship of a life...

People didn't understand how hard it was to keep 2 households going, one in Niagara falls, then one in the Hotel in Hamilton. The expenpse of living inbetween the two and all the travelling back and forth was taking its toll on our finances. Soon, our savings were gone, we relied on our creditcards. No one should live like that. Ever. And the sad part? I didn't spend my money on booze or drugs or tattoos or vacations or fast cars. I spent my money on Cancer. Fucking cancer. What a complete waste of money. A waste of my money and my time and my health and my sanity. Fuck Cancer...

Good news? The rads were taking effect, the tumour finally started shrinking! THANK GAWD! But Griffin himself had continued to grow through his treatments. It was around this time that he started getting nerve damge in his hands and feet. (Later one we found out he probably has "central" nerve damage as well, which is effecting potty training, speech development, etc) What happened is chemo is designed to attack fast growing cells in the body, like cancer tumours, and hair. But since Griffin is a 2 year old, he continued to grow, to the chemo attacked his growth! So the chemo attacked his new nerve endings in his hands and feet. At one point he could not open his hands, his fingers were clenched together into fists. The doctors said there was a 75% chance he would get the use back. Then he started to limp. His toes began to curl under and he was unable to lift his toes of the ground all the way. Its called toe drop. Well, it made my heart drop. It was bad enough that cancer was robbing us of his health, and time, but now take his mobility? And his independance? This is where I went through my "its not fair stage", I was mad. I was mad at cancer, I was mad it was my baby, I was mad at the situation. I was mad mad mad.

I started seeing a very good therapist, we will call her A, at home in Niagara Falls. At first it was just telling my story. It took the first couple of appointments to get it all out. Just straight facts. No emotion, except for jokes. I can hide pain behind jokes. I'm good like that. A was really good at seeing through my smoke screen but not pushing me. She just let me blabble on and on. I needed to tell someone everything, without sugar coating. When you are telling friend and family the latest updates you tend to skip over the bad parts, focusing on the good bits. Hey, he only puked once today! Things are looking up! You want to save them the emotion of the truth, the truth is, my baby is really sick, and I'm scared shitless. You start to take on the role of peacemaker. I despretely did not want to cause an pain to anyone else. I felt like all I had was bad news to tell everyone all the time! What a Debbie Downer!!! I would tell them funny stories and great news stories about the other kids in the clinic. I would hang onto anything positive I could find. Then on facebook, I would tell everybody the facts. The cold hard facts...

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!

Around this time, the story gets a little blurry for me to remember, days and weeks have melded together to become one big experience at the hospital where I gained most of my new grey hairs!

We started off spending the night in the Emerg at McMaster CHildren's Hospital in Hamilton. I think they didn't know where to put us since they didn't know what griffin had.

That was an epic night in the ER, I think we saw just about EVERY SINGLE doctor, intern, medical student, social worker, nurse, etc in the place. Finally at about 3am, the visits stopped and we were able to try and sleep. Except, the ER is filled with crying and screaming children. The Child Life Specialist was nice enough to bring us this plastic fish tank thingy that you put on the side of a baby's crib to soothe them. At first I thought that this lady was nutso, this thing plays the same music over and over, this is going to be more annoying then anything. Surprisingly enough, it drowned out the other children and we were able to grab 4 hours of sleep, Grandma in the bed with Griffin, me, trying to sleep upright in a chair. I'm 6 feet tall...it wasn't a comfy situation! lol

So they finally got us up into a ward room, in the 3C ward, with 3 other small children in the room, You can imagine the craziness. Griff had a sedated CT scan while they wait to book an Emerg MRI. We in turn talk to every doctor from what seems like every dept. Eye specialist, blood diseases, Ventrical specialist, (They thought it could be a bundle of blood vessels?) disease control (in case it was some weirdo jungle germ) head of the peds dept, all the interns and medical students for all of these people that wanted to figure out what this was, I guess to get bragging rights? Then we met with Dr Carol Portwine, the oncologist. She came in and took a look at Griffin, poked his eye. Looked me in the eye and introduced herself. I felt at that moment I knew. It was cancer. She of course was VERY professional, trying to talk us into not freaking out, at this point it could be ANYTHING. But I remember her looking at Griffin like, Shit, another kid...

At this point, the eye lid is now bulbous, a little bit smaller than a golf ball, the eyeball itself is squished to an egg shape. it is pointing down and to the right with very little movement.

After Dr Portwine saw us, things moved very quickly. He had CT & xrays of his body (to check for other lumps n bumps) his IV was changed (which was starting to break down and rot...grosssss...) and finally an MRI. So they now knew it was a solid body mass. It can grown to 10 cms (from 3cms)since the scans just a week before. They booked a biopsy for the next day. On Dec 6th, 2011 Griffin had his biopsy and was sent home. (thank gawd) The eye surgeon Dr Havey was able to cut a line across the lid where he thought Griffin's natural fold in the eyelid would be, they then took a piece of the tumour and sent it away to Toronto for testing. At this point they were able to tell us it was a tumour. Not sure what kind.

On Dec 11th, I was home alone with Griffin when I got the call. I remember standing at the island in my kitchen. I remember thinking, I should really be freaking out right now. Dr Sabri, head eye Doctor of McMaster called with the news (I think he was very eager for the news himself!) And he told us that it was confirmed as Rhabdomyosarcoma, which is a rare and very agressive type of muscle cancer. He was labelled as Stage 1 type 2. We met our "Team" at McMaster the next day as to what our attack plan was. They wanted to wait and see what type of Rhabdo Griffin had so he could be part of a study. I asked what would happen if we didn't wait? They could start chemo the very next week. We chose that option. This was on a thursday, by Saturday, Griffin was in the OR having a Port-a-cath inserted into his chest. A port is about the size of a bottle cap and is just under the skin. It is a direct line to the heart so they could give him fluids, chemo, meds etc without having to use an IV. The port is accessed by a large needle inserted into the port which is just a little prick. Much less fuss and muss and pain then having an IV in for sure! We stayed in the hospital for the next week, he started his first chemo session that monday even before his prt scars had healed. He took chemo like a trooper for sure! We were released from the hospital a week before Christmas. My friends and co-works at work had come and put up random Xmas lights in our yard. It looked like Christmas took a barf on our lawn, all crooked and mis-matched. I LOVED it! As we turned the corner and our house came into view, I just burst into tears. WONDERFUL! I stood out on the side walk in the snow soaking it all in. It was a sense of normal and a sense of love. It was a reminder that even though all hell was breaking loose in our lives, Griffin deserved a Yule and Christmas celebration (our family celebrates both) It made me lift my head up, but on my fake smile and trudge through the holidays.

(On a side note, Marty and I attended one family xmas party in full face masks as to not risk exposure with 40 family members. I'm sure the photos look awesome from that year! hahaha!)

All of this time (over a month by this time) I did not return to work. Luckily I work for an amazing company with a VERY understanding boss and caring co-workers. I was put on stress leave (understandably I just couldn't bear to return to work) and my pay was covered with short term disability and thankfully my benefits were covered by my work still.

 At this point Griffin required 24 different medications at all different times of the day, some before meals, some after meals, etc. My days were filled with homemade meds charts to keep everything on track, meetings with the nurses that came into my home. Griffin required a deep tissue leg needle which I was taught to give the meds through. He got a feeding tube put up his nose to give him meds and food through. I had an IV pole in my living room, a feeding machine in his bedroom. My kitchen island was COVERED in medical supplies. I actually carried a very large tool box like bag that had a sample of all his meds and medical supplies in it. (You would be surprised how often I had to dip into it, even at the hospital! yikes!)

Everybody was telling me how great I was doing, and how well we were handling everything. To be honest with you, I had no idea what they were talking about. I felt like I was walking around in a daze. Maybe in shock? I felt like a zombie, no emotions either way, good or bad, I just performed the functions I had too. On the advice of my Doctor, I started seeking out a therapist. The first one I went too I HATED and swore I would never go to a "shrink" ever again...

Life went on...we spent 3 days a week in the Chemo Clinic and then every third week, we spent five days in the hospital getting "big" chemo...life became a routine centred around the hospital and getting ready to go to the hospital, then cleaning up and doing laundry from the hospital.

In this month, we met Chantal and Craig from Alvia's Rainbows. Alivia's Rainbows is an AMAZING organization which gives cancer families money directly for things like rent, gas, food etc. They stepped in when we needed it most. They made the BIGGEST difference in our lives at the most critical point. Today I contine to raise money for this fabulous foundation that is in honour of thier little girl Alivia who lost her battle with cancer just two years earlier! I figured, if these people can lift thier heads up, work full time jobs AND put thier pants on each morning when they LOST thier baby, then I can get my ass through this too!!! Biggest break through for me at this point!!!

So we were the only family in the small town Niagara General hospital peads ward. The kids dept was small, unequipped and generally just a holding place until they send the kids other places. We are in an empty ward room. There are four beds. Griffin gets a crib, Marty and I camp out in the other ones, spreading out, trying to get comfortable with this uncomfortable situation. At this point we had ZERO idea what was in Griff's eye. The big "C" word has not been mentioned. They still think its an infection so they keep us for 3 days while Griffin is given IV antibiotics. The meds do nothing, the lump just gets bigger. Finally, i INSIST to speak with the doctor to inquire if they intend on DOING anything, oviously the meds are not doing anything to bring the "infection" down. Now what? They finally decide to do a CT scan. They try to "sedate" my two year old slightly, which actually did the opposite effect, he is hyper and balling his eyes out. We give up and try again the next day. The CT scan shows a 3 cm "mass" like a finger running behind his eyeball, in his eye orbit. They have not idea what it is. They now think it is NOT an infection. We are discharged from Niagara General and drive the one hour drive to McMaster Children's Hospital in Hamilton Ontario.

So Griffin is now 22 months old. And the bump keeps getting bigger. I'm now concerned! I take him to the family Doctor, (not my usual family Doctor as he just retired) the family Dr made me feel like a "worry wart" mom and sent me home with my tail between my legs, again, I was told it was a sty and to put hot compresses on it and not to worry.

I'm really worried at this point. The bump is not "angry" like a sty or any other infection usually looks. Its not pus filled or red. Its just a bump, that is growing at a rapid rate.

My Mum is desprete to get answers and makes a plea to her eye doctor. He gets us in that day, on his lunch hour. He examines Griffin. He agrees with me that its not a typical sty (again, no redness, infection, pus,etc) He thinks its a type of sty (called a chalson, or something like that) where an eyelash pore sills with fluid (no infection) He again tells us to use hot compresses and it could take up to SIX months to heal!!!

Two days later, I called his office in tears. The lump had grown again over night, it was now pushing down on the eyeball so the eyes were no longer on the same plane. I insisted on seeing the eye doctor again. Again, he saw us on his lunch hour. He came out to the waiting room to get us. I will never forget the look on his face when Griffin turned and looked at him. It was a mix of shock and horror. He quickly recovered and turned around and told the receptionist to call the eye specialist in town. There was a quick series of phone calls, paperwork being faxed and we were rushed out the door. I went to work for my swing shift, My husband Marty and my Mum took him to the specialist appt. Griffin was sent to Niagara Falls General Hospital from there. He was admitted directly to the peads dept. I left work on Dec 6/11 in a panic in the middle of my shift, not to return for over 2 years...