Tag Archives: Caregivers

Helpful Cancer Links

I HAD CANCER.com-is an amazing site for fighters, survivors and Care Givers to get together, ask questions and get support from others that “get it” from all around the world. Its an amazing resource for knowledge but also kinship. They also feature some of my blogs now and then! 🙂

OPACC-Ontario Parents Advocating for Children with Cancer

Canadian Cancer Society-Info, support services, Wheels of hope, screening and prevention, ways to volunteer

Camp Trillium-As we are a camp for children with cancer, our programs are tailored for all abilities whenever possible. We also have medical staff on the premises whenever camp is in session.

Ronald McDonald House-Hamilton-A home away from home for families with a child in the hospital.

Childhood Cancer Canada -Is an amazing resource! Check out their “Empower Packs” and scholarships and everything in-between!

GET OVER CANCER!

Just get over it!

Remember who you're fighting for... not just ourselves, but the next generation, and the next, and the next...Today I was asked why I wasn’t “over” cancer yet. I am not often speechless. But in this moment, I was absolutely at a loss for words. As I sat there with my mouth hanging open, a range of emotions flooded over me. Shock, horror, anger, self doubt, pity and then I settled on the good old “smile, nod and a walk away”.

This lady might have just been trying to make idle conversation? Or maybe she was actually wondering why I’m still obsessed with cancer? I don’t know. But what I do know? I WILL NEVER GET OVER IT! My son and my family and I, as well as thousands of children fought a war. A literal battle for his life! Call it PSTD, call it worry-wart mama, call it insanity, I don’t care. I will be talking about, advocating for and try to raise money for cancer forever. I will never ever stop. I will never get over it. I’ve lost my innocence. I know the facts, the numbers and the stats. I’ve watched babies wither up and die. I’ll seen the disease take thier hair, their mobility, their hearing, their limbs, their light…it is horrid. And I’m scarred from it. I will never, ever be the same. But instead of letting it consume me, instead of letting cancer win, I’m choosing to fight back. I’m choosing to stand up, to not accept one more child dying, not one more!

I’m sorry that as my friend, family, or co-worker, you cannot see, accept and/or understand that. I hope its because you have never had anything as scary and tragic as cancer in your life. You are lucky and nieve. Just like I was before Griffin got sick. I don’t blame you and I will not hold that against you. But if you are around me, you will be hearing about cancer. A lot. Quite possibly forever. lol So to answer your question, nope. I’m not “over” cancer. I never will be…

Hug your babies tight tonight…

How to “deal” with it

 How to “deal” with it…

                                        …it being Cancer?

childhood cancerAhem, Attention, Attention please. I, Mama Emma will now share my secrets as to how to “deal” with Cancer…

Um, yeah, I have no idea.

hehehe, its probably the number one question I get asked. How I lived through my son getting sick, how my marriage didn’t fall apart, how I didn’t pull my hair out, how life went on. The truth is, you don’t have a choice! You HAVE to be strong! You cannot crumble into a million peices because your child is counting on you. I’m not going to lie, I certainly thought about never getting out of bed ever again. But you have to get up, no matter your circumstance.

A wise Auntie of mine told me an epic story, its been lost from my memory by now (I dont have a very good memory to begin with) But it was something about a kid that had to go to piano lessons, he was scared and unsure, the first couple of lessons, he would hide under the piano bench. The teacher would try to coax him out but there he sat, hiding. She just went on with the lesson with him under the bench. Eventually, the boy made it ON TOP of the bench and was able to learn his music. He realized he was good at it and only his only fear was holding him back. She told me this story and it really stuck with me. At the time I was quite depressed and everyday life was a struggle. So I started to judge my day like “this is an under the bench kinda day” or “Im on the bench, but holding on for dear life!” And best of all? I realized that even though the boy was hiding under the bench, he was learning, he was soaking in the lesson, getting to know the teacher and the music. An “under the bench” kinda day is not the end of the world, yeah, it sucks, but make the best of a crappy day and keep your ass on TOP of the bench! And also, that my own fear and worry was holding me back! I was missing out on some days that could be really amazing and for what? Worry? Guilt? Depression? No thanks…

Throughout Griffin’s journey with cancer, I had varying degrees of insomnia, but early on in his treatments were the worst! I would lie in bed and worry, I would go over the “what ifs” over and over in my head. I would also go over everything to do with his cancer care, all this meds (24 in all, all taken at different times, different doses, some with food, some with zero food, etc) to make sure I didn’t miss anything. Then I would go over the days and weeks to come, planning out food, what packing at to be done, organizing, all in my head. All i could think of was CANCER CANCER CANCER. When I did finally fall asleep, I would have horrid, life-like dreams and nightmares, most of which centred around cancer (I know, big surprise eh?) The worst one I would repeatedly have is, I would go in Griffin’s room while he was sleeping and take a melon baller (apparently that was hot) and carve out the tumour from his face. I could smell the flesh burning and feel the blood pouring over my hands. I would wake up suddenly and franticly, in a pool of sweat, and I would have to sneak into Griffin’s room to make sure I didn’t actually DO anything (We don’t even own a melon baller! LOL) Needless to say, after having a nightmare like that, it was VERY hard to go to sleep. Actually, I really didn’t WANT to go to sleep for fear that I would dream that again…

In truth, I wasn’t really dealing with “it” well, I was walking around like a stunned zombie. My doctor gave me sleeping pills as well as pills for stress and anxiety. But they just took the edge off, and I didn’t feel emotional at all, like either way, happy or sad. I just, was there. Then one day I realized, that I wasn’t enjoying my favourite song, normally I would have cranked up the radio, opened the sunroof and bopped along to my song. But there I was driving along, not caring. This was not me. I didn’t feel suicidal or anything, I just didn’t FEEL anything. I knew this wasn’t me and I knew I had to find someone to talk too. I reached out to the free therapy available through my work. I met with a man that wanted to deconstruct my childhood, he wanted to “get in my head” and see the true “meaning” of my issues. I was totally creeped out and RAN from his office! I was really really scared to go and see someone else. I waited a couple of weeks and then called again. This time I talked to “A” over the phone. The whole conversation was basically about her, she was a mother and wife, ran a laid back office and she gave me her website to see if I wanted to look her up and see if I felt comfortable talking to her! Well! This was EXACT opposite to the last dude I talked too. I walked into “A”s tiny little office, and sat on a fake leather couch, ikea-style. She was warm and smiling, blonde and tiny short. I instantly liked her. She started out the session just asking me why I was there. Well, that started the flood gates. I BLLLLLLLAAAAAHHHHHed my whole story out in out like a barf for an hour of a conversation. I couldn’t talk fast enough, going over the horror of the past couple of months. It felt SO good telling someone the whole truth, without sugar coating, or holding back to protect their feelings. It felt freeing. By the time I was done, SHE was in tears. Again, I was unfeeling, just telling my story. The first few visits was just me telling my story, going over facts and stuff, making sure I got it right. After awhile, I started to enjoy going to see her! I liked the feeling of bouncing things off of her, seeing her opinion of how to deal with a rude doctor, or an insurance company agent I wanted to strangle or whatever. She asked me one day what the beads were that I held in my hand. I never noticed that I did this, but apparently, i would fiddle with Griffin’s bravery beads (he gets a bead everything he gets a poke, needle, xray, mri, chemo, radaiation, etc) I was using them like prayer beads maybe? They kept me grounded and present in the conversation. Now, this therapist and I are no longer “seeing” each other but we do keep in touch through email and I update her on major events and stuff. She was an amazing part of my recovery. And I am ever so thankful for her!!!

So in closing…my advice to deal with it? I dunno, I just fumbled my way through it, which is probably what you have to do as well. I wish you good luck and remember to trust your gut and hug your babies tight tonight!

XOX

My Mum

My Mum

My Mum, aka Grandma J, aka Janey.

Those that know her are better off just being in her presence. I’m totally serious! She somehow is able to calm both you and your steroid crazied child with a couple of words, a hug and manages to cut a single piece of paper into a chicken in 2 seconds flat. You can “pin” her a recipie that night, the next morning it will be waiting on your porch WARM from the oven. Her bed is always the perfect place to lay across the end of to chat, or in times of crisis, to snuggle up on the mound of pillows to cry and snuggle. She adopts the worst smelling dirty dogs from the pound and loves them to death! And we all snuggle in Grandma’s bed. (Ted is a grumpy old Cairn Terrier who is loyal and funny. Bruce is the newest addition, an Irish wolfhound cross that loves his people. He sit and leeeeeans into you, like I love you soooo much!) She listens to your worries and then comes up with solutions, but the best part? She makes your dreams comes true! I dreamed of giving back to the cancer community, she got a project off the ground of making “Garden Gazing Balls” that she sold to raise money for our favourite Cancer charity in our area. (http://www.aliviasrainbows.com/) These gazing balls are now legendary, and hard to get your hands on! Griffin is now healthy and in full swing, Grandma has very little time to make them anymore. Click here is see the article in the paper about Mum and her gazing balls: http://www.niagarafallsreview.ca/2012/08/15/gazing-balls-support-alivias-rainbows

Now when Griffin was sick, his weight would go up and down, during rough weeks, he would lose weight, then when he was on steroids, he would balloon up, becoming all puffy and outgrowing his clothes. It didn’t help that he was already a big boy (can I mention that he was 12lbs 2oz at birth? THREE WEEKS EARLY…yeah…I know…) and we struggled with the hospital supplied “prison” striped pajamas. If we did find a pair that fit, the button was broken or it was missing a tie. There is already enough embarrassing and undignified things about the hospital, having your PJs not do up was the last straw! Grandma Janey marched into the fabric store and got this great Cookie monster fabric. Bright blue and cookies all over it. She made several pairs, in varying different sizes depending on his needs. Then she added a pocket in the back to tuck the end of the feeding tube into, then added straps on the shoulders to keep the various tubes and IVs under control and to keep from tangling. We travelled everywhere in these jammies. To a different hospital for rads, down the MRI, to Chemo clinic. They soon became famous! Other mamas were “inquiring” how they could get thier hands on them for thier own children! We would get word that another child had relapsed, Grandma Janey would quick get on it and sew up a pair! The ladies at the cat scan could recognize them from a mile away. They are bright and cheery and gives the nurses something to talk to the child about. And I think its a way for my Mum to hug “her” chemo kids when she isn’t with them.

And now that project has evolved once again! She is now teaming up with Alivia’s rainbows! Now, when a child is referred to Alivia’s for help, they will also get a custom pair of Grammie Jammies and a cuddley quilt (donated by my Mum’s quilting buddies!) Its so wonderful to see my Mum’s ideas grow and flow out in the community! I love to randomly see a third party photo and SURPRISE! They are wearing Grammie Jammie! LOL AMAZING!

But most of all? I love that my mother LOVES my son as much as I do. I consider us blessed to have another set of parents for Griffin. And he loves them just as much. I love watching him play and goof around with Grandma. They have a blast together. Sometimes I struggle to figure out who is having more fun!

Things you may not know about my Mother:

1.She makes THE MOST AMAZING birthday cakes EVER! I have childhood memories filled with amazing birthday cakes, from the pirate treasure chest, to a toadstool to one with blue water “jello”…amazing…

2. She is a crier. Happy, sad, proud, excited, it doesn’t matter, she cries. And I’ll admit, I usually cry right along with her. Its like she has soooo much emotion, it leaks out. Talk about heart on your sleeve???

3. She reads the most gawd-awful romance/murder novels. You know the ones, the the hunky guy on the front and called Murder on the Midnight Train to Love. Or something equally dumb. As a book lover myself, I’m offended! I call these “fluff” novels. No real story or education to it, just mind numbing fluff. But i SOOOO I get it. She is such an intense person throughout the day, always on the move, always down at Griffin’s level, giving him her absolute attention, that by the end of the day, she just wants to kick back and read a “fluffy” book. She deserves it so I try not to make fun of her. Also, she knows that I read the whole Twilight series 86 times while I was on bedrest while I was pregnant. So really? Who am I to judge???

4. She is a baker. One of those, don’t follow a map, throw in whatever and it turns out wonderful, baker. Throughout our cancer journey, she would arrive at our house at 6am with a basket of fresh cheese scones for us to munch on while travelling to our early morning appts in Hamilton. At the time, I was having a lot of trouble eating, the stress was eating away at my belly, often I would just eat my Mommy scones and diet Fresca in a day. I’m now diabetic…Lord knows why…lol. She has made me dozens of cookies for bake exchanges so I can pass them off as my own (no one believed me though because they were so good, so I had to fess up) And at least twice a week she makes pies. Yes, it doesn’t matter if it the peak of summer, there is Mum in the kitchen, making one of her famous bumbleberry pies because the fruit is too ripe. My Hubby Marty is a sucker for her mystery bumbleberry pies. He says,  “You never know what is in there, but its always good!” She has the ability to “know” when you need a batch a cookies dropped in your mailbox, or tea biscuits left on your front porch. She bakes from the heart and so you can’t help but to feel loved!

5. She’s English. She was born there and came over to Canada when she was just small. If she is really really mad (usually at one of my brothers when we were small) or yelling at a dog, sometimes, just sometimes, her English accent comes out. It would make my brothers and I burst out in laughter. I’m sure it drove her nuts.  I’m not sure if she ever caught on while we were growing up, it was kinda our little secret pact as children. I haven’t heard it in years, but every now and then. when Ted pees on the carpet, the English Old Lady comes out, I can’t help but to smile…

One of my most favourite memories? We were at Camp Trillium (Cancer camp, which is an AMAZING place) http://camptrillium.com/ Griffin is in the middle of his cancer journey and we are recovering from CDIFF. He is worn out, I’m worn out and even Grandma is worn out. We laugh because all we did for the whole week was nap! LOL Anyway, on this particular day. Griffin was into Tigers! So Grandma being Grandma, she was on all fours, crawling along the floor (yes she does have tiger ears and a tail. And yes, she has worn them outside, like in public by mistake…HAHAHA) And they were wrestling on the camp cot, you know, like tigers do, and “somehow” Griffin’s feeding tube got pulled out. Off to the camp medical office we go. We decide that we are not going to put it back in, Griffin will have to struggle through the last couple of days of camp without it. Fast forward a couple of hours, we are back in the medical office, now his leg needle has “somehow” come out as well. With our heads hung low, we have to explain that a “tiger did it”. Griffin thought this was WAY too funny and giggled himself silly as we had to explain the story to the camp medical staff, the camp director, and also the nurses and doctors as we had to attend the hospital to get everything put back in!!! hahaha LOVE IT! Tiger wrestles is the best kind of wrestling! teehee!

Another great memory? My pregnancy with Griffin was not an easy one. And he spent five days in the NICU after he was born. There was a swine flu outbreak in the hospital so only my husband and I could go see him. I could tell that my Mum was DYING to  meet him but she had to wait. So for some reason I was really upset the night before and called my Mum crying (probably hormonal, after birth kinda stuff) but anyway, my Mum rushed up to the hospital in the morning, I remember she wasn’t as “put together” as she usually is. She rushed into the room, worried about me of course, and there was Mr Griffin waiting for her! He had been released and we kept it a secret so she would be surprised. I remember her tears, I remember the way they looked at each other, there was a special bond there.  He somehow got out of his swaddle and reached up and touched her cheek. We are talking a five day old baby here. It was a moment. A moment I will hold in my heart forever…

My Mum has always been there for me. From my crazy girl guide/scout schedule, to never deciding on a degree in University (Yes, I started 4 different degrees and only ever finished one…lol) She would listen to my long winded recountings of EVERY book I read, yes folks, I would sit on the end of her bed and TELL HER THE WHOLE BOOK…looking back on it, I don’t know how she put up with me! She has loved my husband as much as her own children since the day he stepped onto her porch. Most mother-in-laws and husbands don’t get along. My Hubby shows up at my parents house for dinner when I am not there, a lot. lol She supported my non-meat eating ways, making me special meals instead of mocking my choices. She never made me feel uncertain or self concious even though I’ve been a “big” girl my whole life. She instilled a sense of independence in me while keeping me feeling loved, which is a fine line to walk as a parent I think. Now, as a mother myself, I realize what a tough job raising a child is. And I now realize that I don’t thank her enough, tell her I love her enough or hug her enough. One of the wonderful things about cancer, is that it FORCES to stop and look around. You notice the people around you. And you are overwhelmingly greatful to them. Most children don’t know how wonderful thier parents are until they have passed on. Cancer has given me a chance to tell my Mum how great she is while she is still here instead of at her funeral. Another odd blessing cancer has given me…and for that, I am greatful.

So in closing, my Mum is amazing, not only to me, but also my Husband (she feeds him well) my son and every cancer kid we come in contact with. We are blessed to have her. And to her I say Thank You Mum, from the bottom of my heart…

Love Emmmie-loo-hoo