All posts by CancerMama

I am a mother to an amazing Cancer Kid Griffin who fought and beat Rhabdomyosarcoma, an aggressive type of muscle cancer. I write a blog to document our adventures as well as to help other families like ours!
My Thoughts as a Cancer Mama

Loss

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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!

My Thoughts as a Cancer Mama

Today we lost a Baby…

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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!

Letters

Dear Cancer

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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!

 

My Thoughts as a Cancer Mama

The Stages of Grief…well, no, more of Cancer

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As a supporter, a parent, a mother, a wife, a full time employee, and as an adult, I found myself roller-coastering with emotions, or lack there of. Everyone is different but this is how I felt when I heard the words CANCER:

 Shock

At first, I was emotionless. A walking zombie. I was just in shock. If my parents were not there, I would not have eaten, or slept. I was focusing on Griffin only. He got his meds, food, hugs, stories, clothes, but I was falling apart. I was falling apart but didn’t even know it. For me, it was all I could do to function on a day to day level without breaking down. Its how I personally dealt with the situation at hand. but I didn’t realize that I was a zombie until months later when i realized that I’m missing out, or I hadn’t smiled that MONTH, and I didn’t enjoy the things that I used to. I was just numb. Its was when I was driving and my favourite song came on the radio. Normally I would have turned it up, sang along and danced wildly in car. But this time, I did nothing. My fav song gave me no emotion whatsoever. I new that something was different, that’s when I went to the doctor. I was “depressed” in the way most people think. I didn’t want to kill myself, I just wasn’t happy. I wasn’t enjoying life. I needed help.

Anger

Then I was mad. I was mad at cancer but cancer is a difficult thing to be mad at, you don’t have a picture, its not physically there for you to see. Its hidden, sneaky. You can’t swear at it, or punch it or even look it in the face and tell it what you really think. You tend to get mad at others that don’t really deserve it. My husband Marty nearly took out the subway sandwich guy for not putting enough pickles on my sandwich. Marty is not an angry man. He is a gentle soul so to see him fly off the handle on his poor sandwich dude was a little scary. But it really opened my eyes. We are not handling this well.

Why?

Then there is the questioning period. Why me? Why my baby? Why my family? You start to question your life, like: did I get the flu shot while I was pregnant??? Maybe that time I had a non-decaf tea caused him to grow cancer in the womb? Maybe its because I failed at breastfeeding? And then there is not the “its not fair” stage, I think it goes along with the “why me” stage too. I would wonder, I only have 1 child, where there are families of 19 and counting, why would cancer pick on my only baby??? There are families that give up their children, abuse their babies, not want them, throw them out. I love my child. Why me? I also questioned my religion, which I had never done before. My faith as always been something constant for me. Questioning this was scary for me. But I was desperately searching for answers. And what sucks most? I never found them!

WHAT IF?

Then came the “What ifs” period. What if Griffin dies? What if the Cancer comes back? What if it spreads? What if it splits up my family? What if we cant afford this? What if I have to go to another kid’s funeral? What if my heart break completely in half? What if, what if, what if??? In the words of my dear therapist. “Emily, you can WHAT IF yourself to death”. The problem with the what if questions are that there are no answers! You are worrying about stuff that hasn’t happened yet!

Sadness

This was a crappy stage. And surprisingly enough, it came AFTER Griffin was done chemo. Its like everything that happened over the past couple of year, sank in, all at once. Or maybe I knew the treatments were over and let myself go? I’m not sure, but I turned into a blubbering blob! I did most of my therapy AFTER, which really surprised me! There was mention of Post Traumatic Stress Syndrome. At first I laughed it off. I really did not know what it was. But when I had to call my Therapist from the floor of the bathroom stall I was curled in a ball in, I started to think about it. It turns out, my work ordered the same alcohol/anti-germ wipe that they used in the hospital. When smelling it, I guess it took me back so those days where Griffin was neutropenic, and could not have any germs at all. I would spend hours wiping down his hospital room, the bed, the chairs, the tables, all the toys, the outside of food containers, walls, doors, the floors. Everything. I would scrub my hands until they bled, but didn’t feel anything. That smell of those wipes brought it alllllll back…and I was sad. I felt sad for myself, sad for my little family, I felt guilty that Griffin was done treatments and the other chemo kids were not. I felt extra guilty when one of our cancer buddies passed away, felt like shit when another one passed…the list goes on.

The Blessings

I went from feeling sorry for myself, to taking charge. Instead of letting Cancer win, I took over. I started to see the awesome side of Cancer. I know that sounds odd. But it brought my family closer. It made me not take anything for granted. I SEE the blessings I have in my life. We made amazing friends with other cancer families, met some amazing strong survivors and supporters who continue to fight for a cure!

 

I’m including a previous post called “Dear Cancer” which I think explains the blessings I’m talking about:

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…

My Thoughts as a Cancer Mama

These are ADULT Choices I’m Making Here!

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There are Adult choices I’m making here! *Looks around* Do they know who I am? That they put ME in charge?!?!

Ha...25 small cracks just mean you've been put to the test 25 times, and still haven't fell apart!I’ve always been a rather independent person, probably more mature than my peers, able to make my own decisions and fend for myself. I put myself through school at 20, found my wonderful husband at 22, got married at 25, bought a little house also at 25, we had Griffin when I was 30. But I still felt like a kid at heart. I was a dance in the rain kinda Mum, its ok to get a little muddy every now and then! You want meatballs for breakfast? Hey why not!?!

Then cancer hits us and rocks my little boat. I’m suddenly clutching the sides and trying not to be thrown overboard.

I’m making life and death decisions for my son! Like adult choices, like big time, holy crap decisions. My first gut move? MOMMY!

Luckily, my Husband and I had amazing support and yes, my sweet mother was there for every step of the way! (thank gawd)

But as a Cancer Parent, you are suddenly in charge of your child’s care and medication. You need to keep track of on going and ever changing appointments with different needs going along with them. (to eat or not to eat before an appt, THAT is the question!) You have to make sudden decisions about your child’s care, like to give life saving medication or not, to remove limbs, to perform procedures that could save them, or not…to put these choices on anyone is hard. Put these on a stressed out Mama who couldn’t decide what type of bagel to have this morning? Impossible!

As it turned out, the choices were not actually that hard, our family would discuss the issue and usually we were all on the same page which happened to be the same page as the Doctors, so it all worked out. But I’ve heard horror stories from other cancer parents that are trying to work with ex-husbands, or super religious parents or whatever, that the decision making process is not that easy.

Luckily my husband and I are morally, religiously and spiritually on the same ground. Basically we wanted the f-ing cancer outta our boy, the faster the better, all while maintaining his dignity and childhood. It was a balance of play and medicine. where the play would come first, throw a little chemo in there and then lots of snuggles and play after. For a four night hospital stay, we would pack 2 whole wheelchair loads of crap, just for the hospital room. Colourful quilts for blankets, but also to liven up the room. Several bright pillowcases that not only served as cases but also, toy bags, barf bags, blankets in a pinch, spill cloths, peek-a-boo items, etc. We had a large tote bag that it was Grandma’s job to re-stock every visit. From puzzles, to noisey flashlights to golf tees, yes golf tees, she had it all!

This whole cancer experience made me open my eyes and realize that I AM an adult (crap…when did THAT happen?!?) And I made it through, WE made it through, our little family is intact, our marriage is intact, my parents are closer than ever and best of all? Our boy is cancer-free. Sounds like our ADULT CHOICES turned out ok eh?

My Thoughts as a Cancer Mama

The Blessings of Cancer

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Blessings of Cancer

Whhhhhhhhaaaaaat? You say? BLESSINGS of Cancer? What are you taking about???

Welllll, for me, and my story, as much as I HATE Cancer, I also love it. I know, take a deep breath, let me explain.

Before Cancer, I took life for granted, yes I was happy, but I didn’t really LOOK at what I had. My beautiful little family, amazing friends, supportive family and employer. I had my dream house, family living close, my best friend as my Husband, I was done school and just coasting through life. Cancer hit and threw everything into a tailspin. Now, that I’m on the other side, I appricate all that I have. I take nothing for granted. Life seems sweeter somehow. Music is more meaningful, a hug is emotional, a night in on the couch with my hubby is bliss! I laugh more, I smile at all that is beautiful. Once your life is ripped for you and you work HARD to but the pieces back together, you savour every moment you’ve got left.

Throughout our Cancer journey we have met up with some amazing people. We have attached ourselves to a couple of other cancer families. These families I care for like they are as close as family. I love to hear updates about how thier kids are doing and despite our busy sch’s, we meet up several times a year. The first family is of Miss S (privacy) She is Griffin’s girlfriend. She is a year older and had lukemia. They met in chemo clinic. She is the sweetest, cutest, sassiest girl you can meet! She bosses Griffin around, and Griffin totally does waht she says! LOL They hold hands and love the swings and compares snacks. Miss S only ate potatoes for a year. She has moved onto include bacon as well. Her mother is thrilled. Speaking of her Mother, We will called her Amanda (not her real name) is the most caring, most compassionate woman I have EVER met! We tend to gab for hours upon hours, we have cried together and laughed together and most of all, raised toddlers who kicked cancer’s butt together. One time, we invited Miss S and Amanda over for an afteroon playdate, Amanda and I yakked all afternoon and into the evening, The kids played with each other and my Mum was busy cutting out letters and numbers and chickens out of paper. Miss S was very impressed she was able to do this. My Dad ended up ordering from a chicken place to feed us and we kept on chatting! They ended up leaving at bedtime as our children were starting to fall asleep! LOL We invite this family to pretty much everything we do because an outing with Miss S is like a day without sunshine! LOL I value my friendship with Amanda and love being able to talk to her about life, but also about Cancer. She parents a lot like we do so we seem to be on the same page regarding our children as well as cancer. They are a great family. We are blassed to have met them and bonded over our clinic times!

Next is Mr Adam (name changed) he is a teenaged boy. Griffin first encountered him in the open chemo clinic. There is a “teenager” area of our clinic where the same children are not supposed to roam. Well, tell at 2 year old that, it just makes them want to go there more. Usually we were there very early in the morning so as you can imagine, the teens were sleepy, grumpy and feeling like crap. Adam stood out because he actually looked you in the eye and smiled when Griffin would come near him! Griffin would come up behind Adam’s Chair and stick his head in between the 2 seats to see waht kind of eletronics Adam had this week. Well, then, one week, Adam was our roommate on the hospital ward. Adam was NOT feeling well, At all. For the the entire week stay, he was throwing up every couple of minutes. You would hear Blahhhhh (him puking) and then a very weak but polite, “excuse me” from behind the curtain. Then a mintues minutes later another Blahhhhh and then Adam would pipe up with a “sorry!” Oh my gawd, I would laugh my head off! What a sweet boy! He is throwing up a storm and he bothers to excuse himself? What a champ! So from then on, he was our “favourite” room mate for being so polite and cute! So Griffin and Adam had a cute little relationship from then on. On Griffin’s last in hospital chemo treatment, we were in a private room and Adam was beside us, he was too weak to get up but he wrote a note for griffin on a piece of paper for his Mum to write a saying on Griffin’s “congrats” poster on Griffin’s door. I’ll have to dig it out because its the most amazing quote ever…I will have to find it! Adam’s mother is an amazing example of Cancer mama WARRIOR! And an amazing woman in general. I love yakking to her too! Adam is such a sweet boy, he finished his treatments and sent Griffin a Xmas package last year that included one of those story books where you can record your voice so now Griffin has Adam reading him the sweetest little christmas book. It brings a tear to my eye everytime. Adam has recently relapsed with his cancer and is in the process of getting a bone marrow transplant from his brother. Our hearts and thoughts are with this family right now!

Next is Miss M, another chemo clinic buddy! Miss M and Griffin became buddies over thier mutual need for food during a steroid week. Griffin would steal her strawberries, Miss M would steal his crackers. They were buddies ever since! Again, from a wonderful family who we really enjoy doing stuff with. Miss M is usually the life of the Party, wearing a tutu and sparkley shoes pretty much at all times and loves to DANCE! Her hair has started to grow back (she is still in treatment) which makes her have this wild child look that totally suites her personality! She lives over an hour away but you can count on Miss M’s family showing up for events which are always fun!

Through facebook and emails, us Cancer Mamas (as I call us) have formed quite a pwerful and wonderful group that can reach out and rant or ask for help or a tip for a problem. Its actually quite amazing!!! I look to these Mamas for thier wisdom but also thier friendship. I actually cannot imagine my life without these people now. And I thank Cancer for bringing us together.

Throughout Griffin’s journey, we have come in contact with some really great stangers that became vital to our Cancer Fight! Linda (name changed) lost her husband to cancer years ago and her son had it too and now she works hard for the Canadian Cancer Society’s Relay For Life every year. We actually met her there. Griffin was still battling his cancer and I was crying on the side of the road. Linda picked me up and gave me a hug. And just held me for awhile…like my angel! She met us with us a couple of months later with gifts and cash and more hugs. She and her children are a blast, such a caring group of people! We are planning to get to gether soon to go to the aquarium with the kids! YAY! But she is an awesome example of someone whose life was ripped apart by cancer and instead of letting it ruin her, she stands tall, and fights everyday for a cure. She is my hero.

Within a week of Griffin’s diagnosis, a friend at work was very active about reaching out to community help for us. She was concerned abotu the cost of cancer. At the time I was very overwhelmed and totally did not pay attention to what she was saying (sorry J!) But thanks to her stubborness and plain old stepping over my head, she got in contact with Alivia’s Rainbows which is a FAB foundation her in Niagara Falls that directly supports cancer families with things that they need. They had lost thier daughter Alivia to cancer a couple of years before and this is how they honour thier daughters memory! How wonderful is that??? They came over one night, right before Xmas and dropped off SEVERAL gift cards for food and gas. I cried and cried. These people understood! And they were the first “cancer family” that we had come in contact with! I was desprete for information so it was wonderful to get the “inside scoop” and another cancer families input. I think they were surprised that I wanted to talk to them since they lost thier daughter, but I didn’t care, I was so glad to speak to them! Chantal & Craig have been amazing friends and our idols to look up to on our journey through cancer. One day I want to grow up to be like them! Strong, caring and amazing!!! They continued to support us on many levels. And we are now working hard to support thier cause! We will never be able to repay everything they gave to us, because its priceless but we try! Please check them out at www.aliviasrainbows.com/

Another amazing Cancer Family we came across was the crazy people at “Team Kelsey” Kelsey Hill lost her battle with a brain tumour and her supporters, all dressed in the brightest green you have EVER seen group together and move mountains! Her Mum Lana (and family) are very active in the cancer community, they raise money for the Ronald McDonald House and sponser Brain Tumour Kids in our community. Lana reaches out and touches each kid with her love and care and you can’t help but to desire to be part of Team Kelsey! Check them out at: http://www.teamkelsey.ca/

So in short, yes cancer sucks, but you can either let it consume you, or you can fight back!!! Don’t just sit in the corner and feel sorry for yourself, get up, talk to the people in clinic with you,

Cancer

My new blog!

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How exciting! Welcome to my new Blog everybody! I own my own name and everything! The old blog was wonderful but very restricting and when too many people visited, we would get kicked out! And that is never good! LOL

So welcome to www.CancerMama.ca everybody! Come in, chat a bit, invite your friends! 🙂 And remember, you are never alone…