Tag Archives: Rhabdomyosarcoma

Pondering, Rainy Day Doom

The snow has finally melted here in Ontario Canada, its been a very long winter for us. Today its a rainy day, lots of grey clouds, fog and rain. A cool wind whips your hair around your face as you dash to your car, avoiding puddles in the empty parking lot. I sit in my car enjoying the thunderous spattering noise of rain hitting the roof and windsheild. It’s a calming sound for me, it clears my head. It’s been a very busy couple of weeks for me. I organized our local Daffodil campaign for the Canadian Cancer Society, then I worked a lot of shifts, on top of my full time job. I’m physically and mentally exhausted. It’s not just selling a few pins. It’s standing on your feet for hours, smiling, but you also hear story after story of how cancer has affected people’s lives. My heart reaches out to each and every person that shares their story. Lots of hugs are exchanged, whispers of good luck, as they hustle along doing thier errends. Some are survivors, some lost a loved one, some are still fighting and then others are angry. They think that a cure as been found but drug companies are keeping the secret to make more money. I have trouble shaking the lasting effects of these people. It must be so hard living a life filled with so much negativity and hate. And then to feel the need to spread your negativity to an innocent volunteer who has nothing to do with drug companies? sigh…I take a deep breath, breathing in the glorious spring air and the smell of rain. It’s wonderful. I feel my body relaxing and my mind starts to wander. I remember sitting in this car, in the parking lot of Ronald McDonald House when Griffin was at his sickest. I remember the rain and the gloom and sitting there balling my eyes out. I retreated to my car to cry by myself. I remember thinking I couldn’t do this anymore. I remember questioning why me? Why my child? Why my little family? I remember wishing that I could take Griffin’s cancer, I would sacrifice my own life for his in a heartbeat. Why my only little baby? Why cancer? Why so much sickness and pain? I sat in that car for a very long time, hoping the rain would wash me away with it…

Fast forward 2 years and look at us now? I’m still tired and exhausted but for different reasons (thank gawd) I made it through to the other side. The doom and gloom only lasts for a little while, then it passes by, leaving everything washed clean and fresh.

As horrid as your cancer journey seems at the moment, just know, this too will pass. Your journey will continue to march forward. Some of you may lose your child, some may have complications that they have to live with the the rest of thier lives, but we move on, we survive, we conquer.

I sit back in my car seat and smile. No gloomy day can keep me down. I no longer cry in the rain. I now smile and jump in the puddles.

Don’t let the dark cloud consume you ladies, look for the silver lining, if there isn’t one? The cloud will move on, taking with it the cold and the rain and the wind, rainbows will follow, from heaven or from earth, our children are our blessings!

Let us Talk about Loss

© Joseph Cortes
Early Walk © Joseph Cortes

When it comes to Cancer Kids, we must talk about the loss we all feel when we lose one. It hurts the whole community. I can only talk from an outsider’s point of view. Our son Griffin is still with us, but we have gone to a lot of funerals of his Cancer Buddies over the years. Yes, they are not my children, but it still hurts, almost like they ARE my kids. And I have a loss of innocence. I have survivors guilt. Why did my child live and theirs did not??? So I share with you my thoughts on child death:

Words of Advice From a Cancer Mama

When speaking to a recently grieved parent, please do not say things like, “It was his time”. We are talking about a child here. This was not his time. No parent should have to bury a child. A child that dies? Its not his time. Cancer stole his time…

Other things to avoid? Talk like, “God has a plan” or “God only gives you as much as you can handle”. When a parent loses a child, its a very trying time for them and they could be questioning their faith. Phrases like these do not help. I would HATE any God that did that too me, no matter the religion.

I know you are trying to relate, but please refrain from comparing a parent’s loss of a child to a dog or a Grandma. They are not the same. And it can hurt, a lot if you think that they are. This loss is a hole, their child has been ripped from them after a long hard journey. Be their safe place to fall, be a shoulder to cry on, be the supportive hand to hold. Do not be the jerk who thought that Fluffy’s passing was the same as a child. It can be insulting and hurtful.

Please DO ask if the parent would like to hear a story about your favourite moment with their child. (Some parents will not want to hear anything, others will love it, so its always best to ask) Tell a funny or touching story, how you will be remembering their child. Or tell them a story about what reminds you of their kid. Maybe every time you see a penny on the ground, or a cloud shaped like a dog, the colour lime green or whatever. It lets that parent know that you a are thinking of their child all the time and that they are still alive in your heart.

Do dedicate something for the family. A bench or tree in your favourite park, a song on the radio, anything to touch their hearts. I love to see people walking/raising money in honour of these little ones we have lost. The more money we can raise, the closer we will get to a cure. Let the family know what you are doing to honour their family.

Do listen to the parents. See what wording they are comfortable using when they are talking about their child. Some people do not like the word “loss”. To quote a Cancer Mama, “I did not ‘lose’ my child, I know exactly where he is! Right were cancer left him!” Some don’t like to refer to them as angels or their fight as a battle and they “lost” the fight. They tried their very hardest, saying they lost their fight makes them sound like losers! Some families refer to them in the present tense, others start talking in the past tense right away. So I would recommend listening closely to how the family is referring to the child and follow their lead. Every family is different, it can be very tricky but its worth it!

Sometimes there are no words

Let that sink in for a minute.  No words. You being there, present, is words enough.  Sometimes silence is worth a thousand meaningless conversations.

Don’t be afraid to smile and even laugh. Yes, this is a horrid time. But its like a roller coaster, their world is crashing in around them, and then someone reminds you of a hilarious story about your cancer kid, you can’t help but to laugh right along.

Please don’t be silent, be vacant or disappear. They are still your friend or family. Don’t be afraid to reach out. Please call, take them for a walk, dip your feet in the sand together, connect, please cook food, please hold a hand or give a hug. Everyone needs a hug sometimes…

Please hug your babies tight tonight, even if they are just in your hearts.

XOX

Many thanks to the Cancer Mamas that helped me out on this one. I talked to some of you directly, and then some were just experience. But thank you for sharing your baby with me, even for just a little while. They will live forever in my heart…

A very special RIP to Kerry’s child (name withheld), Rowan, Austin, Matteo, Alivia and Kelsey.

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!

My Fav Charities

 

www.aliviasrainbows.com

Alivia’s Rainbows does amazing work! They donate money directly to families battling childhood cancer in our community. This important service is a life saver to most cancer families and their hard work and dedication to the cause is unmatched. Chantal and Craig honour their daughter who we lost to Cancer. As well as helping families directly, they also give much needed toys and electronics to McMaster Children’s Hospital and The Ronald McDonald House Hamilton and Camp Trillium.

 

www.teamkelsey.ca

Team Kelsey is a whirlwind force of Lime Green that fights cancer at every turn! They are heavily involved in the community, raising money and donating to both  The Ronald McDonald House Hamilton and McMaster Children’s Hospital‘s Stem Cell Research. They honour their daughter Kelsey who we lost from a brain tumor.

 

www.jacewars.com

Jace Wars throws amazing “nerd” events that raise money in honour of their heroic little guy Jace who fought off a very serious brain tumor. All monies goes toward The Ronald McDonald House Hamilton.

www.boxrun.org

The Box Run is run by an amazing man named Mike Strange. He is a man larger than life, an Olympic Boxer, a City Counselor, a business owner and most importantly, a man intent of killing cancer! He ran across Canada, raising money and spreading awareness of Childhood Cancer. He now hosts an annual Box Run that helps out local Children with terminal illnesses!

www.foreverwe.org

ForeverWe.org is an amazing organization that sells dolls. You can get one for yourself, send one to a friend or sponsor one to a hospital or sick child! Their philosophy is to teach through dolls that encourage purposeful play. “Jewel” is the first in their line of special dolls. She has removable hair, a port and even a superhero cape if you want! These special dolls are given to cancer kids across the US and even here in Canada! There is also a cute book that explains the dolls. As a family, we found this doll was a great ice breaker to bring up Griffin’s Cancer diagnosis and how it has/is effecting him.

ForeverWe dolly
ForeverWe dolly

 

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

Loss

Loss

When talking about loss and cancer, together, one would assume we are talking about people, like actual physical people and their souls but I’d like to focus on another type of loss a Cancer Mama can meet along her journey with cancer. Friendships. Yup, its true, when you are in the worst battle of your life. You will be surprised at the people that just dissappear from your life!

At first I took this personally. but then, the more it happened and the more it happened to my fellow Cancer Mamas, the more we realized that it was a common issue! I no longer take it like an insult. People come in and out of our lives many different times, for different reasons. Who knows why but I would like them to know that the door is always open if they ever what to come back!

I tried to think up reasons. Of course, it could be me! I like to think that I have not changed, but that would be a lie. I HAVE changed! (I hope for the better!) I’ve lost my innocence for sure. I’ve faced my child’s mortality and of course pondered my own. I’ve buried chemo buddies, I’ve watched children waste away to nothing. I’ve watched cancer rip families apart, tear apart marriages and drain every cent a family has. I’ve watched child take medicine that poisions thier bodies to the point of death, meds that take thier hair, sight, hearing, mobility, and watched thier parents give it to them. I’ve put on a lead bib as my baby gets radiated, over and over and over again. I’m not the same person. I’ve seen the dark side of life. But because I’ve seen the dark side, I hang on tight the bright! I don’t take my life and my family for granted. I love my friends and family even deeper now. I see the good in people and the amazing organizations that helped us. I love watching kids kick cancer’s butt and watch them walk out of that hospital a victor. There is a new normal for me. And maybe some of my friends cannot handle this change. Is that my fault? Nope. Is it my friends fault? Certainly not. I just have a different focus, I’m on a different path and sometimes friendships cannot follow along. And thats okay. It is a hard reality to accept and that’s okay too.

Cancer is intense. Like seriously intense. Some people cannot handle that. I think a few of my friends just couldn’t handle the stress of cancer. Even though it wasn’t thier child, it wasn’t thier family, it still hurt just like it was. They had to put walls up. We all have these walls, in order to protect our hearts, but we all have different levels and strengths to our walls. Some can let me in, with my cancer baggage and all. But other people already have had assualts on thier heart, thier walls are a little shakey and already crumbling, there are hastily stacking brick on brick thying to keep it together. The added weight of a sick child on top of that? Would cause the walls to break down, that person to break down…and there for, we are no longer speaking. It does hurt me that I’ve lost friends. Of course it does. It takes notches out of my armour. But just like a knight going into battle, I still wear their ribbon daily. I hang onto the good memories and the wonderful advice, laughter and friendship they have given me over the years. They need time to regroup, time to build up thier heart and soul til it is strong again. I will be here when they do. (I hope a certain person reads this, because yes, some of this is about you. Life has given us shitty paths to take, not even a choise on our parts, just the cards we were dealt. I wouldn’t mind playing poker again…my chips are all-in)

Aaaaand I talk about cancer…a lot. I’ve been told that it can be “negative”. Take it as you will, but I’m getting the word out. Its on my facebook, twitter and pinterest, EVERY SINGLE DAY. I would imagine it can get a little “much” for people. But there is never enough for me… I talk about it alllll the time. I’m making it my mission to find a cure and raise awareness. I’m not focused only on the doom and gloom, I’m fundraising and going to events, I’m dropping off donations, I’m visiting cancer kids…I’m busy. I don’t have time to dwell on what used to be. And I’m not going to apologize or even feel sad for the friendships I have lost. They were part of my story, they made me stronger and better then before I knew them. And for that I thank them. I will love them til the end of my days. But quite frankly, i don’t have time to worry about the past, or who is talking to who. I’m moving on, I’m rising up, I’m kicking ass. If you want to join me, hop on board! If you’re not, thats okay, maybe i’ll see ya on my way back around!

YeeHaw!

Today we lost a Baby…

Today we lost a Baby…

Okay, so Austin was not exactly a baby, he was 13 years old, but he was still Jen’s baby and Cancer took him too soon, and I’m upset. I want to stomp my feet, I want to have a temper tantrum, I want to scream at the top of my lungs. But will any of this bring sweet Austin back to us? Nope, so here I am, stuck at work, trying to hold it together so my co-workers don’t think I’m even nuttier than I really am.

Let me introduce Mr Austin. (He is Adam in my other posts) He is a teenager. All the teens in the Chemo clinic sit in a special area that has a big TV and an arcade style video game. This area is off-limits to little kids. Try telling a 2 year old that. This off-limits area is tempting like honey to a bee. All the teens have iphones and ipads and various video games. My techie loving son was desprete to get his sticky little hands on it all. Most of the teens ignored the little kids (I don’t blame them) but Austin did not. Griffin would poke his head inbetween the seats to peer at whatever Austin was watching/gaming. Austin would grin ear to ear and tilt the screen so Griffin could see. They were buddies from that day forward. Austin was not a man of many words, generally quiet. So was Griffin, but they were still great buds!

About halfway through Griffin’s year of treatments, we were on the hospital ward for a routine round of in-treatment chemo for a week. And guess who was our roommate? AUSTIN! Griffin was VERY excited, but poor Austin was having a rough go. The poor kid was throwing up every three minutes. Since we were sharing a room, you can hear everything so we were trying to respect his privacy, but you could not help but to hear the BLAHHHHH of him throwing up, and then the sweetest, weakest little voice would pipe up, “Excuse me” or “Sorry” everytime he threw up! He was apologizing to us! He was in the worst shape of his life, puking up a gut and worried about us?!?!?! Yup, thats Austin for ya!

On Griffin’s LAST chemo hospital stay, Austin was also on the ward, right beside us in a quarentined room. He was flown in by helicopter, he was very weak and small looking in that bed. He had an oxygen mask on, and would lift his head and try to take the mask off to talk to Griffin! Since he was too weak to get up, he wrote a note so his Mum could write a special note on Griffin’s NO MORE CHEMO banner.

Austin was such a kind soul, seriously, its really rare to see that in teens these days. We are so lucky to have met him, even for such a little while. Somedays it just doesn’t seem fair. I cry my tears but now I’m just plain old MAD. Our babies shouldn’t be going through all this grown up stuff. My child shouldn’t have to go to THREE different funerals for his friends this year…its just not fair. But it just makes me want to fight harder, scream louder. Lets find a cure here people. NOt one more baby are we going to loose to this horrid disease. No more.

RIP Austin Whittom. May you be free of pain and at peace. Keep your stick on the Ice!

Dear Cancer

This was a letter I wrote for the website WWW.IHADCANCER.COM which is an amazing online community of fighters, survivors and care givers. Go check it out!

Dear Cancer,

I have never ever hated anything more than I hate you. You came into my life in Dec of 2011 when you infected my baby with your sickness. You took his health, but you never took his love, laughter or life.

Dear Cancer, you also taught us how to love someone else so much it hurts, how to care for someone other than yourself, how to reach out to other families that are hurting too.

Dear Cancer, Because of you, our family grew stronger as you grew weaker. Because of you we have gained the friendship and kinship of other cancer families that I consider as close as family. Because of you, I don’t take anything for granted. Because of you, I wake up each morning thankful for the day I had yesterday with my child and looking forward to the day I will have today. Because of you I will never be the girl, daughter, wife, mother that i was before. There is no “going back to normal”, there is a new normal now. Its stronger, bigger and badder than Cancer.

Fuck you Cancer but also thank you for the blessings you brought. I love you and hate you for different reasons. But because of these reasons, I will spend the rest of my days spreading the word of cancer awareness, raising money and giving hugs until we find a cure. We will win this fight. So toodles cancer, until we meet again…

All cancer survivors! Walking together, surviving together!
All cancer survivors! Walking together, surviving together!