Diary of a Momcologist

I am Emily-a wife, mother, momcologist and I work full time. I’m lucky enough to be married to my best friend Marty and have my wonderful son Griffin. Griff was diagnosed with a rare and aggressive form of Rhabdomyosarcoma in 2011 when he was just 22 months old. After 48 weeks of chemo, 25 radiation treatments to his face and uncountable scans, MRIs, pokes and prods, Griffin is now 8 years old, and CANCER FREE! As a family, we are very committed to our local Cancer charities as well as the Ronald McDonald House Hamilton and Camp Trillium. They helped us in our greatest time of need. Now that Griffin is on the mend, we have his whole life to give back! We will never be able to repay everything that was given to us, for most of the support and hugs were priceless, but we will definitely try!
Marty and I are now starting up a Parents Support Group for Caregivers here in Niagara. We are very excited to bring this wonderful group of people together to share, grow and heal!

Please know that you are NEVER EVER alone in this fight. EVER. Please reach out and let someone know you need them. Email me anytime. Us Cancer Mamas have to stick together. Hug your babies tight tonight.

Grandpa noticed a small red bump on Griffin’s right eyelid. As a busy boy, I figured he just bumped it with a toy or something. Life went on. Grandma and Grandpa, on the other hand, were very worried about it. They kept taking pictures and documenting its growth. It started out feeling like a frozen pea. Then it grew to two peas, then three. By this time, I was getting concerned. Whatever this was, it was growing, not getting better. My Mum is desperate to get answers and makes a plea to her eye doctor. He gets us in that day, on his lunch hour. He examines Griffin. He agrees with me that it is not a typical sty (again, no redness, infection, pus, etc) He thinks it is a type of sty where an eyelash pore fills with fluid (no infection) He again tells us to use hot compresses and it could take up to SIX months to heal!!!
Two days later, I called his office in tears. The lump had grown again overnight; it was now pushing down on the eyeball so the eyes were no longer on the same plane. I insisted on seeing the eye doctor again. Again, he saw us on his lunch hour. He came out to the waiting room to get us. I will never forget the look on his face when Griffin turned and looked at him. It was a mix of shock and horror. He quickly recovered and turned around and told the receptionist to call the eye specialist in town. There was a quick series of phone calls, paperwork being faxed and we were rushed out the door. I went to work for my swing shift, My husband Marty and my Mum took him to the specialist appt. Griffin was sent to Niagara Falls General Hospital from there. He was admitted directly to the peds dept. I left work in a panic in the middle of my shift, not to return for over 2 years.
 

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

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. It is 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. It 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 the car. But this time, I did nothing. My fav song gave me no emotion whatsoever. I knew that something was different, that’s when I went to the doctor. I was not “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.

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, it is not physically there for you to see. It is 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.

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 it is because I failed at breastfeeding? And then there is not the “it’s 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, and throw them out. I love my child. Why me? I also questioned my religion, which I had never done before. My faith has 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!

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 can’t afford this? What if I have to go to another kid’s funeral? What if my heart breaks 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!

This was a crappy stage. And surprisingly enough, it came AFTER Griffin was done chemo. It is like everything that happened over the past couple of years, 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 to 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 all 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.

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!
 
Seriously, we lived day to day, just trying to get through that day. We had a non-verbal toddler and a cancer diagnosis. We were desperately trying to keep our heads above water. I’m actually amazed we made it through those first couple of weeks.
Crocheting for a Cause

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 are 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 online 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!
Now, several years 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 crocheting, 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.
 

 
New Beginnings
My son’s last day of chemo was a Sunday. I watched as the very last drop of poison dripped into my baby’s IV line, and then we were officially discharged from our very last hospital stay. He got out of bed, put on his Batman cape and walked out of the Cancer Ward. Some of the nurses clapped and kids cheered, others just looked and smiled. My little bald 2-year-old stopped and turned to wave like he was the King of England. The nurses cried and there were hugs all around. I had a goofy smile on my face…but it wasn’t real.

I was more scared than ever. For 48 weeks, I had dreamed of this day, the day that my son’s chemotherapy would be done. It was my light at the end of my cancer horror tunnel. I had dreamed of this day ever since Griffin was diagnosed with Rhabdomyosarcoma behind his eye when he was 22 months old. We survived 48 weeks of chemo, 25 radiation treatments directly to his face, 11 blood transfusions, neuropathy (so bad that he still has trouble walking) and had no use of his thumbs and fingers. He had mass amounts of pokes, prods, x-rays, blood draws, etc. I cuddled him as his hair slowly fell out. I rubbed his back as he would sleep through the pain. Even though I did not have cancer myself, this Cancer fight was just as much mine as it was my son’s. And now it was here. The end of our Cancer fight! So why was I so terrified?
I felt lost. I felt abandoned, I felt alone.

When you start your treatments, your cancer team gives you a piece of paper with your timelines. Everyone is different but most people have a basic idea when and how long treatments are going to be, when your MRIs and CT scans are, when radiation is scheduled, etc. You are on a strict schedule of clinic visits and then in-patient time. Your day is filled with medication schedules, feeding pump schedules, outpatient therapy schedules. But once you hear that word, “remission,” you are suddenly dropped like a hot potato.


 
We went from clinic visits at least twice a week (sometimes three) plus once a month, a full week of treatment admitted to the hospital ward. You had access to all your doctors, to child life, to physio, OT, dietitians, plus nurses to answer all questions. Yesterday you were a cancer patient, a team of 6 doctors at your beck and call. And today? You are told to transition back under your family doctor’s care. WHAT? My family doctor had no clue about the meds my kid is on or the effects it has on him. How long do all these meds stay in his system? How long do we live like hermits, avoiding germs and germy people? When can my life go back to normal? What if he gets a cough? How long do we keep his port in? Why do I feel like I’ve been abandoned? There is no schedule for my life now! What do I do? I was the only one in charge of his care now. If he gets sick, it’s on me, I make the decisions. I did not like this at all.

I could not believe how high my stress and anxiety got at this point.

I was warrior mama up until then, beating cancer down with my bare hands. And then I just became a pile of mush. I think I finally let myself FEEL everything I had been bottling up over the past year. Now that my son was cancer free, there was time for me to deal, to feel, to cry. I was processing the fact that my baby could have died. I never really let myself think about that fact before. I had to suppress that fact just to get through the day. Now I have to deal with the fact that my boy will never be the same — he has scars that will be with him his entire life. And I have to deal with the fact that I will never be the same either. I have seen the dark side of cancer.

It was at this low point when I had to choose if I wanted to keep fighting or let cancer take over my life.

I chose not to be a victim anymore.

I was going to control my journey and take my life back. That is when I started my “Cancer Mama” blogs. (www.cancermama.ca) At first, it was just a place to vent, a place to barf all my feelings down in print. (That is why there is no editing) It helps me to share my experiences. I hope it helps others to read that they are not alone.

Nobody told me how hard ENDING cancer treatment would be. No one talks about the feelings AFTER remission. I expected that once October came around, I would get out of my PJs, put on my dress clothes and head back to work with a smile on my face and a spring in my step. I didn’t go back to work until the following April. I spent a lot of time at my therapist’s office (THANK YOU AMY!) who was able to hear my woes and turn them into healthy living and healing. It’s easy to stay in a funk —the cancer cloud can hang onto you, and over you, forever. But don’t let it win Mamas! Climb that mountain and don’t be a victim anymore – it’s not easy, but you aren’t alone.

As a family with Cancer, we are strong. Yes, I said a “family with Cancer”, because really, when one member has Cancer, it affects the family unit as a whole. One member suffers, all the members suffer. We work as a group, as a team, with one goal. KICKING CANCER’S BUTT!
We, unfortunately, discovered CCC after Griffin’s fight. So CCC did not have a direct effect on our family, but it has been a great resource for other families that I have directed them to! CCC has sent lots of emPower packs to our Support Group so we could share the information and resources and even provided a tablet to a little guy that needed a pick-me-up after a rather rough month! Thank you, CCC!
 
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. It is stronger, bigger and worse than Cancer.

F*ck 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…

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 the 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-to 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, if it wasn’t on the master calendar, it simply did not exist. 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-not helpful! LOL) Next came all the results. I had all the paperwork 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 stuff like camp info, disability papers, etc. Carting around all this info is heavy but it is so 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 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…) 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 icebreaker. 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 of our 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. It’s just too heartbreaking.
• There is a gaggle of support networks out there for you, depending on what you are comfortable with. Depending on 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.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 it’s 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.
• 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 we 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!

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 it’s 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!
Hug your babies tight tonight!
 
Get Educated
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. It’s 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 the 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!