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Mama_Emma's picture

Mama_Emma

Caregiver: Rhabdomyosarcoma

38 Year Old Female

Niagara Falls, ON

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2011

Rhabdomyosarcoma

Stage: I


Mama_Emma's picture

Mama_Emma

Caregiver: Rhabdomyosarcoma

38 Year Old Female

Niagara Falls, ON

Get and/or give support


2011

Rhabdomyosarcoma

Stage: I


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I am a Caregiver

In Dec of 2011 my 22 month old son was diagnosed with Rhabdomyosarcoma which grew in his right eye orbit. As of right now, July 2018, he is 8 years old and considered cancer free and doing amazingly well! Woohoo! I am now very active in my community, spreading the word and... [Read More]


Treatment Information 

Stage of Treatment

Finished treatment 5 or more years ago

Treatment Types:

Biopsy

Blood Tests

Bone Marrow Biopsy

Bone Scan

Chemotherapy

Chest X-Ray

Chiropractic Care

Complete Blood Count (CBC) Test

Computed Tomography (CT) Scan

Diagnostic/Staging Surgery

Discovery PET/CT 600 Scanner

Genetics Testing & Counseling

Liver Function Test

Lumbar Puncture

Nuclear Medicine Imaging

Nutrition Therapy

PET/CT Scan

PET Scan

Physical Therapy

Radiation Therapy

Speech and Language Pathology

Surgery

Ultrasound

Urine Tests

X-Ray

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Hospital:

McMaster Children's Hospital (Hamilton, Ontario, Canada)

Side Effect:

Shaking/Shivering

Appetite Loss

Chemobrain

Fatigue/Weakness

Fever

Hair Loss or Alopecia

Infection

Nausea & Vomitting

Neuropathy

Mood changes

Skin & Nail Problems

Swelling (Edema)

Weight Gain

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Discussions (7)


IHC Blog Posts (7)



Battle Scars or Painful Reminders?

January 21st, 2015

Sorry about the VERY late blog update, somehow this got lost in the shuffle, but I thought I would share it anyway! :)

It is early June 2014, my happy and healthy little dude runs around the yard. He is wearing a big sunhat to guard against the sun. Chemo has made him extra sensitive to the rays. He also wears a very large see-through eye patch over his “bad” eye. But other that that, you would never really notice that he has fought a war, battled for his life, until you look closely for his scars. There is a faint scar that crosses his lower eye lid where they cut for his biopsy. It is so very light, you might mistake it for just another eyelid wrinkle. As a mum, I know better. On the back of his hip there are pock marks where they took bone marrow to see if the cancer had spread to his bones. You wouldn’t notice, as a mum, I remember how painful they were for him. If you notice rough, dry looking skin under his eye, spreading to his cheek bone, its actually ruined skin from the radiation, some may call it a sunburn, as a Cancer Mama, I’ve seen what radiation does to the body. If you ask him about his port, this little guy will lift his shirt and show you the big, raised red scar where his port-a-cath was, a direct line to his heart from his chemo. There is no port there now but the scar is deep and is sensitive to touch. Griffin is proud of it. As a mother I am thankful he was lucky enough to have a port. His battle could have been MUCH worse without it.

These are battle scars. As a relatively healthy four year old, these scars to do not slow him down but I wonder how he will hold up later on in life?

Because he had radiation directly to his face, he is missing an eyebrow on that side, he also wears glasses because he had cataract surgery to correct what radiation had done to his eye. They say his bones will grow slower on that side. His face will be different sizes. I wonder if anyone will notice? Will kids be mean? Will my son wear these scars as badges of honour? Or will they remind him of tough times and shrink like a wallflower?

Every now and then, I wish I could peek into the future, see what the future in like for my Cancer kid. Will he be a cancer awareness leader? Will he continue to walk the fundraisers and be the face of children’s hospitals and Cancer charities? Will he be proud of the things he has accomplished? Or will all this take its toll on him? Will the kids notice his differences? Will he be teased for his scars? His missing eyebrow and lack of balance? He cannot run as fast as the other kids, he had muscle loss and nerve damage from the chemo. This also effects his balance and his confidence as he tries to play with other kids. He is not as confident as the others his age. Will he be picked last for the baseball teams? Will they see the implant in his eye and be freaked out? Will they see the deep red scar on his chest and shrink away in horror?

I wish I could have an idea so I can prepare him for the future, but as any Mum will say, I guess I will just have to wait, and continue to watch him run around the yard. Tripping over his own feet, going much slower than the rest of the kids, but grinning ear to ear. He is happy, and as a Mum, that’s my job, the rest? I will worry about as it comes…

Hug your babies tight tonight

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Hospital Survival Tips for Children with Cancer

December 19th, 2013

Welcome to the wonderful world of Children's Hospitals filled with sick children. Please wash your hands.

 

Here are some tips to survive this so-called fun Hospital life:

 

The basics

 

If something is in the room, it should serve at least 2 if not 3 fuctions. There is very limited space for storage in a small hospital room, even worse if you are in a shared room. So everything there must have a purpose, the more, the merrier! For example, we would bring 3 or 4 quilts (kid sized) that wonderful crafty ladies would donate to the hospital. We LOVED these quilts! Not only do they brighten up the room but they kept my kid warm! They could also be rolled up and used to prop up a sore leg, or head or whatever, They could also be thrown over the top of the crib (or just one side) to stop light from coming into the crib during nap time. They also could stop drafts of cold air if the A/C was up too high. They were also good for cushions when my son barfed on his carseat and I had to take the cover off and we still had to drive home! The possibilities were endless with these quilts! They are super durable (easy to wash, multiple times a week) And they still adorn Griffin's bed today at home! :)

 

We did the same thing with pillowcases! We were given these wonderful bright pillowcases from a local quilting shop. At first I didn't know what to do with them...well...they became my MUST HAVE item in the hospital room. From toy bag, to barf bag, to spill cloths to blankie in a pinch. These were WONDERFUL! Plus, it brought a little bit of home. A familiar bright orange and lime green fish pillowcase always made him smile!

 

Then there are the little things like books! If you pack all different sizes of books, they do not pack well together, but if you stick to a certain size, like 8"x11" for example, they will pack nicely and always look neat and tidy. Also a larger book like that can be used as a snack tray in the bed, or a table for guests to eat on thier knees! Need to write a note? Hey! Now its a desk! And think board books (or something durable like that) Something you can disinfect or clean puke off of!

 

Same with people. This is not a social club, there are SICK CHILDREN trying to get better. If you are not here to help, get out. Visit in the lounge! I know this sounds harsh but in shared room, visitors get in the way, spread germs and annoy nieghbours! Yound children have odd nap times, older children can get embarrassed, no matter the reason, so hang out somewhere else!!!

 

Colour (yes, I'm Canadian, we spell it with a U, lol)

 

Our Children's hospital rooms were very...blank. I couldn't stand the white and the beige, it made me feel sick just thinking about it! So we brought several things to brighten the room, but also had to serve at least 2 other purposes to be allowed in the room (limited space) See above, multi uses for quilts, and pillowcases. But things like crafts serve as as an activity and a distraction, but can also be hung off of an IV pole or stuck on the door to brighten someones day! Think like a child, add colour and life to the hospital room. It can't hurt!!!

 

Journal

 

Please keep a journal or notepad in your child's room. Quite often, i would be out (going pee or foraging for food) and a specialist would come in looking for me. My husband would struggle over the name. Ummmm, it was Doctor...uh...it could have started with an H? A journal means you can keep track of who comes in, new information for other family members, if meds were given on time, what doses and properly (you would be surprised how badly this went wrong for us! Please ask the nurse what is going in the IV and how much!) Also you can track how your child is progressing. The doctors would ask if his eye is more swollen than it was on thursday...uh...I can't even remember what it looked like yesterday! Keeping a journal of symptoms, when things happen (when was your child brought into the ER? When did that surgery happen? Who was the surgeon?) etc. It will help you in the end! TRUST ME!

 

Food

 

Good food in a hospital is like water in the desert. Its worth gold, its expensive and its hard to find!!! Bring your own. Most hospitals have a place for you to store food. Use it. Bring veggies. They are the most expensive and usually in the worst shape (wilted and old or covered in chemicals...yuck) I thought at one point I would get scurvy from lack of fruits and veg! Bring as much "survival" food as possible, like granola bars, trail mix, rice cakes, soups in a cup, juice boxes, crackers etc. Munchies that are good on the stomach too. Chemo makes the belly upset (as does stress) so we as a family needed non-spicy, belly friendly snacks alot.

 

To be continued...

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These are adult choices I'm making here!

December 12th, 2013

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)

 

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?

 

to be continued

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Its better to have loved than never to have loved at all...

December 12th, 2013

Its better to have loved than never to have loved at all...

 

As I sit at a fellow Cancer Kid's funeral, that saying is rolling around in my head. The words people are saying are all mumbled and jumbled in my head. I was questioning my decision to get close to fellow cancer families. Why do I do this to myself. Here I sit at yet another kid's funeral, my heart is ripped apart, I FEEL this Cancer Mama's pain...and its not even my kid.

 

There are families that come into clinic and avoid eye contact, they would dip into a treatment room and hide from us (it felt like anyway) At first I felt sorry for them, never communicating with anyone. But as I sat here, at a funeral of a child, I thought these "hidey" people were the smartest people in the world!

 

Why do i put my heart out there? Why do I become friends with these kids that I KNOW have a really good possibility of dying?!?! I can hardly function dealing with my old child's illness and possible mortality and here I am, with silent tears running down my face as they bury one of "our" babies.

 

I make a mental note to become one of those silent Mamas. No chitchat in the hospital halls, no checking up on the status of the admitted kid, no playdates with masks for everybody, no late night facebook chats with a Mama in distress. Thats it, I'm cutting myself off. I'm done, I'm sick of my heart getting ripped open again just when I get it stitched up again.

 

I sit a little taller, wipe my tears, proud of myself for making that decision to protect my heart. I look around smuggly as my new found shield is gaining strength. Then I meet eyes with the Cancer Mama who just lost her baby. She looks at me and starts crying, she moves toward me with her arms open. Shit, this is not part of my "heart is closed plan". I don't know what to do. She gives me the biggest hug ever, thanks me for coming, says that it "must be hard for me to be here" and whispers in my ear, "Us Cancer Mamas gotta stick together" SHIT shitty shit shit. She used my own words against me! I say that all the time to my group of fellow cancer Mamas, and here she is quoting me with my own words! At that point I realize that its true, us Cancer Mamas DO have to stick together! Through thick and thin, sickness and in health, we have bonded through our different paths with Cancer but we all are in this fight together. Even though our hearts hurt at the moment, they beam when we see each other, when you get that Christmas card with a healthy, fully grown-in haired child on the front and you know what? Even at the funerals. I'm here, my heart hurting for my fellow Cancer Mama. I'm here to represent all us Mamas out there. I'm here to respect and say good bye to the littlest cancer warrior I've ever met. I'm here, I'm present and I always will be.

 

I hope we can blaze a trail of friendship and understanding for new cancer families coming in behind us! Do not be afraid to love your fellow cancer kids and supporters! You will be thankful that you did! Thank you fellow Cancer Parents for opening your hearts to me, to us.  Thank you for putting your heart on the line and your heart on your sleeve. I understand the risk you take opening your soul to others. I understand and I'm thankful.

 

Love you all, you know who you are! XOX

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The Blessings of Cancer

December 11th, 2013

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 year 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/

 

 

 

 

 

 

To be continued!

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