Tag Archives: Ronald McDonald House-Hamilton

Feeling Guilty

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

Have you ever felt guilty about something? Maybe you stepped on a bug on the sidewalk? Elbowed your kid in the head by mistake? Ran over a squirrel in your car? I think we have all done these things, felt guilty about it for a moment and moved on. I once was shopping in Zellars (The Canadian version of Kmart) with my Mom, and I was young enough not to be able to see over the counter, so I was five maybe? I was REALLY excited over this new Barbie my Mum let me pick out. I clutched her in my arms throughout the entire store, I looked into her eyes and day dreamed of the dressing changes we would be doing and plastic car rides we would be going on. My Mum bustled me along, as she grabbed her bags to leave. Out in the parking lot she realized I was still clutching the dang Barbie and had not paid for it. I remember her DRAGGING me back into the store like some common criminal. I was embarrassed, but more than anything, I felt GUILTY. Like a deep ache of guilt, like would be Mum ever forgive me? Could I ever forgive myself? Will I still get into College?

Fast forward 20 years and here I sit, snuggling with my beautiful healthy five year old boy that happens to be a cancer survivor. Yes, we have a few side effects and setbacks due to Cancer, but in the grand scheme of things, we had a very lucky journey. As I sit here, running my hands through his hair that grew back a much darker colour, I cannot help but to think of the friends of ours that are still battling the disease. Why is my child ok but theirs has relapsed? Why did they go through 12 ports and ours was perfectly fine? Why is my child alive while theirs is dead? The guilt swallows me up some days. Do I deserve to have a healthy child when some great Mums out there are missing theirs? I can’t wrap my head around it. Logically, I know it’s silly, I should be shouting from the roof tops and dancing a jig at our luck. But how can I be celebrating when other kids are dying? When other kids are still fighting? Apparently it’s called Survivors guilt which is a part of my PTSD. That’s great that there is a nice little name for it…but how do I fix it?

The long and the short of it? I DID make it in to college, LOL the Barbie trauma is long behind me. But the Survivors Guilt? I find myself inserting myself into my Cancer Community, doing things like running a Parent’s Support group, organizing a Super Hero sewing bee so every sick kid gets a Courage Cape and lots of fundraising events through the year. Events like Relay for Life is a great day where Cancer Families and their supporters plus great members of the community get together to walk together and raise money. Its a way of connecting. Look up your local Cancer Society or Ronald McDonald House as they always never volunteers I feel like instead of filling my heart with guilt and dread, I actively fill my heart with love from these other Cancer families. Yes, by putting myself out there, I could get hurt again as our friends may relapse but the love far outweighs any of the bad.

The guilt? I will never be able to fix it but I CAN put it in a figurative little box, with a pretty little bow. I know it’s always there, tugging at my heartstrings but I don’t have to open it all the time. I keep it close to my heart, I think about those kids all the time but I’ve learned that it doesn’t have to take over my whole day, I don’t let the guilt consume me anymore. I’m allowed to laugh and enjoy my cancer-free child. We all know life is just too precious and too short to be worried about something I cannot change.

Hug your babies tight tonight…and remember, you are not alone.

 

Support Groups…I don’t like that Phrase…

Support Groups.

Those words make me think of alcoholics drinking crappy coffee in a moldy church basement, forced to be there by the court. This picture in my head was put there through various media influences, not based on real life at all.  Is this picture true? Maybe…but not our Support Group!

When Griffin was going through treatment, I asked my social worker if there was a support group for parents like us. I was basically laughed at. “Nobody wants that” and “why would you want to hang around other depressed people?” were the responses I got. I felt like an idiot and very very very alone.

Luckily, Griffin happened to get sick at the same time as some wonderful other kids whose mums are absolutely fabulous! These warrior women have held a household together, kept their marriages alive AND kicked Cancer’s butt all while supporting me in my greatest time of need. I’m not at all surprised that this Cancer Mamas got together and started their OWN support group with zero help from the hospital.

And the PARENTS OF CHILDREN WITH CANCER-HAMILTON was born! These amazing parents meet up once a month at the local Ronald McDonald House which has lovingly opened their doors and supply warm baked cookies. We meet in the library of the RMH, a comfy cozy place with big relaxing chairs and soft couches to melt into. You cannot help but to breathe a sigh of relief when you step in there. These Mums and Dads come together, no matter if their children are still fighting, in remission or bereaved, they have found a safe place to speak, to tell their story, share their worries and make friends. We cry together but we also laugh together, a lot. We have battled the same disease together and watched our children grow up along side each other. I DEPEND on these people to get through my daily life! From sharing a funny story of how a feeding pump went awry in the middle of the night to a 3 am shout out for help over facebook. These people keep my head about the water and breathe the sweet sigh of relief into my soul. I know I am safe here. I can speak my truth, without sugar coating it to not hurt someone’s feelings or depress yet another person wanting an update. It is a safe place to fall and a protected place to grow. These parents are all knowing, they have wisdom beyond their years in all things, not just cancer! From parenting advice, to recipes that kids will actually eat to temper tantrum tactics to potty training know how. These are people that can help you with anything. I wish I could tell you about the wonderful stories shared, so inspiring and some are heartbreaking, but all are very important. They have forced me to DEAL with Griffin’s illness, treatment and recovery and also other feelings that pop up along the way like survivor’s guilt or serious anxiety over scans. (aka scanxiety) It is easy to push all these feeling down and not deal with them. But the boiling pot of feelings is going to boil over and attack when you least expect it! I’m so glad and blessed that I found a group that is so amazing!!! (PS, I can’t share any stories that have been shared in our group because A) they are not mine and B) We have an understanding of confidentiality that I would not want to break)

So what am I trying to get at? Support Groups are not just for Druggies and alcoholics. They can be a powerful healing tool for you when your child is fighting cancer. Is it for everybody? Heck no! But if you need someone to talk too, reach out. Ask your clinic if there is such a thing in your area. And even if there is not, there are great groups on the internet that are wonderful as well.

The major message? You are NOT alone.

Hug your babies tight tonight folks…

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

 

The Blessings of Cancer

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,