For pretty much my entire childhood my Grandmother would try to teach me how to knit. I remember spending hours upon hours in her basement, frustrated to be kept indoors while the boys were outside playing. I thought knitting sucked and hated it. Fast forward 20 (cough..cough…or so?) years and my 22 month old son was diagnosed with Rhabdomyosarcoma. My world was flipped upside down…as I stumbled through life, trying desperately to grab anything that felt “normal” I tried knitting again in the hospital as my son slept off the chemo. My skills with two needles is severely lacking, I had trouble keeping the proper tension as my life would shift from high to low in a heartbeat. My grandmother now suffers from dementia and I never learned how to cast off so the never ending scarf is approx. 12 feet long. It is as shapely as a curvy lady with a magnificent hourglass figure. Not very desired in the fibre arts, but it’s my chemo scarf and it’s hideous but I wouldn’t change it for the world. My stress was taken out on those stitches. The hours ticked by as my needles clicked together. That sound still reminds me of my grandmother.
Fast forward two years, my son is cancer free and recovering wonderfully! And I, as a Cancer Mama was not. I suffered from depression, PTSD and survivors guilt. I was trying very hard at keeping afloat but having serious trouble with sleep and “thinking” about things. I would lie awake at night haunted by what I had seen, the other cancer kids we had lost and how I could possibly be happy when other kids are suffering.
One day I woke up and thought to myself, I’m wasting my time, if I’m going to be awake, I might as well be DOING something! I ordered myself a set of cheap crochet hooks and some (horrid) yarn on line determined to teach myself how to crochet. I figured I could stay up all night crocheting chemo hats for the kids at the clinic. At least my suffering would be of use!!!
That one little decision changed my world!
My Survivor Griffin dropping off the hats my crochet group made! Spreading the love!Cutest little baby hat ever!
Now, a year later, I am a full blown crochet addict! And proud of it! I have started a crochet group in my hometown as people from all walks of life gather to gab and learn. My stress is pretty much nonexistent now as I know my hook and yarn will be there for me. If I’m feeling anxious at the doctor’s office? I whip out the good ol’ yarn bag. People young and old ask me what I’m doing, what I’m making, I make friends wherever I go! It opens up the line of communication and brings awareness to childhood cancer as I tell them I’m making chemo hats for the kids.
Road Trip Crochet!
Stressed out by scanxiety while travelling to your hospital? Crochet a granny square style blanket to keep a chemo patient warm in those chemo chairs! My husband calls it road trip crochet! (Not while you are driving of course! Yikes!)
Crochet seems to me anyway, easier than knitting and I am able to give someone something that I made with my own hands and with love. When I hand over a blanket, I know it took me hours and hours to make. I hope they love it as much as I do. It’s like giving someone a homemade hug they can take home!
Yarn friends are odd friends! Mary and I doing a little retail therapy before her surgery!
But the most important lesson of all? You have the power to change your life. You really, seriously do. Yes, I know crochet sounds ridiculous. But find your hobby, find your love, painting, sewing, pottery, tattooing or gardening, whatever makes your heart sing! And make some amazing friends along the way!
So your baby has just been diagnosed with Cancer. Now what?
The Web
Calm down, take a deep breath, now breathe…and get off the internet…seriously. You will scare yourself silly with the horrors you can find on the web. I did. If you must troll the interwebs, ask your Doctor for trusted sites and stick to sites like the Canadian Cancer Society or the official site for your type of cancer. (Sarcoma Foundation, etc) You cannot trust everything you read on the net and most importantly, you can easily mix up actual fact that your doctors give you with the crap you read on the web. Stick to the internet for things like fundraising or support but leave the info and investigating to the professionals!
Get Organized
Start a binder/notebook/journal. Something to keep track of your child’s day to day. I had a binder that had different sections. The first was a business card plastic holder thingy that I kept all the businesses cards of all the doctors we saw, as well as any other business cards that were important (social worker, travelling nurse, and even the serial number of his port that they implanted!) It was a great go-too in a pinch because I can NEVER remember a Doctors name when put on the spot! LOL Second was a calendar, on that went all his appointments. Yes, I had one on my phone, but this was the master list. Everyone referred to this and it was all knowing. Next was a chart of his meds. At one point he was on 24 different meds, all at different times, different doses and some were before a meal, some with food, some after. Just thinking about it gave me hives. Once I was able to make a no fail chart, it was actually so easy! We had a little tray that I would line up all the syringes, in order for the day. It actually worked quite well! I even numbered the chart and then wrote the corresponding number on the top of the medicine bottle to help me even further! (some of the meds had kinda the same name so it was hard to tell the difference or the generic name was on the bottle but the brand name was on my chart-non helpful! LOL) Next came all the results. I had all the paper work from scan results, as well as lab results. Whenever we met with someone, I would ask for the readout. I can’t tell you how useful this was! You could actually spot trends in his blood work! AMAZING! And lastly, misc stuffs like camp info, disability papers, etc. Carting around all this info is heavy but it is sooo useful! Now, I mentioned a journal. When Griff was first in the hospital, we didn’t know what he had, just a large, fast growing bump above his eye. The doctors would ask a million questions and I found if I kept a journal, I could better answer those. Like how long has the bump been this colour? When was his last bowel movement, how long as he been on this med? I kept a journal of his daily life. It was great if my hubby was not there, he would know how the day went and which doctors came to visit etc. I would highly recommend it!
Clean
Clean your hands, clean yourself, clean your house, your car, your freaking cat. Clean EVERYTHING. Because your kid will no longer have an immune system, he will catch everything. Scrub your hands, right up to the elbow, clean every toy you have in your house. We even rolled up the rug in the living room, the hardwoods were easier to clean! There are some organizations that will clean for cancer families, but we were not so lucky. My Mum was a godsend and would help me out a lot in the cleaning dept. (and laundry…oh gawd the laundry…)
Connect
Yes, your hair is a mess, but that lady looking at you from across the room? She just wants to talk to another Cancer Mama like her but is too stressed or too tired or too scared to reach out. Children are a great ice breaker. Give your kid a snack and send them to the middle of the room. He will attract other steroid raging children that will gobble up the snacks like sharks! You and the Mamas can laugh about it and it will get the conversation started. I was lucky enough to connect with and keep in connect with some amazing families throughout Griffin’s journey and today they are some our most dearest friends. These Mamas understand what you are going through, something that your friends and family will never truly understand. And that’s okay, personally, I never want them to understand. Its just too heartbreaking.
Support
There are a gaggle of support networks out there for you, depending on what you are comfortable with. (Please see the “helpful links” on the sidebar) Depending where you are, there are groups and foundations. Inquire with your hospital, our Social Worker had great resources. Anything from “wish” programs, to support groups, to Cancer Camps to government funding, there is something out there for you and your family. Just reach out.
Talk
You need to talk. Get things off your chest. I personally found that I did not want to “burden” my friends and family more with the gory truth so I looked for outside help. Inquire with your social worker at the hospital. There might be a therapist or support group that specializes in your child’s type of cancer? I had an amazing therapist that helped me through the good times and the bad. But its not just about sitting on the couch and crying. She gave me great tips to combat anxiety when I’m not in her office. She also gave me awesome tips and “go-tos” (words or sentences to say when people ask you/say something that makes you uncomfortable or is something you can’t talk about at that moment.) Example: When I returned to work, every person I encountered asked how Griffin was. This can be exhausting to try to answer this question, in full, 1000 times in one day. So we came up with an answer like, “it is quite complicated but he is very happy and comfortable at the moment. Can I explain over lunch?” It avoided the hard stuff that made me cry, it answered their question for now and shut them up. win, win, win.
Camp
You might not be a “campy” sort of person, and that’s okay, but the odds are your kid is! Here in Ontario we have Camp Trillium and Camp Ooch which are fabulous free camps for Cancer Kids that lets them be themselves in a safe and understanding environment. Those memories will last a lifetime and the time us Mamas have alone/together is priceless! Yes, it seems like more work to bring a cancer kid to Camp, but trust me, it is sooooo worth it!
YOU
As a Mother, your child usually comes before you always, but as a Cancer Mama, you tend to neglect yourself. Remember to eat. I thankfully had a very good support system that would remind me to eat but not everyone has that. Doesn’t matter if its just a granola bar or a shake. Eat something. And remember to take care of yourself. You cannot look after your child properly if you are a mess yourself. Allow yourself to have a quiet moment for a tea, do Yoga in the hospital room! I even know a Mum who sewed, she brought her whole sewing machine into the hospital when her child was admitted!!! Give yourself an afternoon and get a pedi. You deserve it!!! Yes money is tight, but what is your sanity worth?!?!?!
And the most important thing? YOU ARE NOT ALONE. I know it may seem like it, but there are millions of Mamas out there, just like you. We would love to talk to you. Reach out, spread your wings, kick Cancer’s butt and love yourself while doing it!
The tiny silver star has a well-deserved place among the very tip top branches of my Christmas tree. The star has a hole in the middle with a crystal hanging inside. This little star means so much to me.
In Dec of 2011, my 22 month old son Griffin was diagnosed with Rhabdomyosarcoma, a rare and aggressive type of muscle Cancer that grew in his eye orbit. That holiday season was the scariest and most heart wrenching Christmas my little family had ever been through. We didn’t know if Griffin was going to make it and my Husband & I didn’t know if this would be his last Christmas…
After 48 weeks of chemo, 25 radiation treatments directly to his face, and countless pokes, scans and appointments, December of 2012 rolled around and that year, Griffin was Cancer Free!!! You would think I would have been so happy, unfortunately I was not. My heart and soul were hurt from all the cancer kids we had lost that past year as well as all the kids still fighting. I could not let myself feel happy while others were still suffering. Some mothers did not have their babies that Christmas, how guilty and horrid was I to enjoy mine?
I struggled with PTSD, survivor’s guilt and depression until I found this cheap little tin star at our pharmacy while I was getting meds for my son. It sparkled at me, it reminded me of the sparkle in the eye of one particular child we had lost recently. I clung to that ornament all the way home, crying tears of sadness but also relief. I realized that I could HONOUR those children with a place on my tree. I can remember them, laugh at their memories and remember their sparkle. These families would not want me to suffer; they would not want me to be consumed with guilt over something neither of us can help!
So Griffin is five now, perfectly healthy and happy. And so am I. Each year, I hang that amazing little star near the tip of my tree, the little crystal catching all the light and winking at me. These Cancer Kids are not forgotten, but they are no longer painful. I will always remember those children with this little silver star. I will always remember their bravery, courage and heart.
In December of 2011 my little 22 month old son Griffin was diagnosed with Rhabdomyosarcoma, a rare and aggressive type of muscle cancer that grew in his right eye orbit. We spent three weeks in the hospital trying to get a diagnosis and then a biopsy before returning home on Dec 20th with our answer. CANCER. I got a freaking DISEASE in my BABY for Christmas. I was a mess inside but an emotionless zombie on the outside. Mentally, I knew I had a job to do but no idea how I was actually going to do it!
After living in the hospital for three weeks, totally unprepared, I was dreading coming home to an empty house. We never had time to put up any decorations, a tree or even a few lights outside. I was dreading coming around the corner to see my sad house, the only one not lit up on the block. It kind of represented how I was feeling. Sad, dark and alone.
Griffin and my Hubby Marty in the RMH ad
My husband drove our car around the corner and grabbed my hand. There were lights on our maple trees! There were ribbons on our bushes, lights along our house. Our little house was BEAMING with holiday cheer! HOW DID THIS HAPPEN!?! I ran out of the car in my hospital slippers into the snow to watch the wonder of our house. I stood in the snow, looking up at my trees. This was not a professional job at all. It looked like Christmas barfed on my lawn. The lights were mismatched and crooked. Any other year, this would have bothered the OCD inside me, this year? My heart SANG!!! I’ve never been on the receiving end of a Christmas miracle, it was absolutely amazing!!!
It turns out, my co-workers contacted my Mum to see how they could help my family. And then they took up a collection of old Xmas lights (That explains the mismatching lights) and then some volunteers came over the night before to attack my house. But when they got there, they realized that they didn’t have a ladder and all the SHORT people volunteered to help! HAHAHA so only the very lowest branches of my maple trees at lights, the short bushes had ribbons and they had lined the MIDDLE of my house with lights not the roof top. Apparently someone had tripped on and landed on the drainspout of my house, falling and crushing it. Hearing this story made me cry so hard, happy tears. These were my awesome co-worker family, nutty and amazing.
I noticed that I craved a sense of normal in my life. I did not want to be a Cancer Mama. I was forced into it. Once you are diagnosed with Cancer, your little world is tipped upside down, people don’t treat you the same and you don’t even recognize yourself in the mirror. The familiar feeling of Christmas lights in my trees and wrapping my house in cheer was the EXACT pick-me-up my little family needed.
If someone you know has been diagnosed during the holiday season, please reach out and see what they need. SUGGEST what you can do. Lots of people would “say” just tell me what you need, well sometimes, I don’t know what I need! Or I don’t want to impose, but if you offered to make Christmas dinner, or maybe a trees put up, cards mailed or cookies baked? Maybe their driveway shoveled? Or even just a nice chat with a cup of cocoa to warm the soul. Most would take you up on your offer!!!
Happy Holidays and remember, you are never alone.
~Cancer Mama Emma
Life living with, through and after Cancer from a Parent’s point of view.
