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Mama_Emma's picture

Mama_Emma

Caregiver: Rhabdomyosarcoma

39 Year Old Female

Niagara Falls, ON

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2011

Rhabdomyosarcoma

Stage: I


Mama_Emma's picture

Mama_Emma

Caregiver: Rhabdomyosarcoma

39 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

[View More]

Discussions (7)


IHC Blog Posts (7)



March 2012-October 2012-Getting into the grooooove!

December 11th, 2013

So March 2012-October 2012 is kind of a blur for me. We fell into a comfortable routine, well as much as it could be...under these circumstances anyway. Twice a week we headed up to Hamilton to Clinic, every third week, Griffin was admitted to Hospital for his "big chemo". We stayed at the newly renovated Ronald McDonald House (which is an absolute wonder of a place!) We would head up to the hospital for the 8pm check in, my glorious Mother would take the night shift. and then Marty & I would show up early in the morning to be ready for his chemo at noon. Then Griffin would sleep for most of the afternoon and my Mum would head back to our room at the Ronald McDonald House to have a shower and have a nap. Marty would usually take work emails and phone calls (trying to run a small business from a hospital room really sucks by the way!) and I would usually clean up the room a bit before it was dinner time. He would pick at his dinner, then we usually played until sleepy time around 8pm. My mum would be back and take over the night shift again, the start the whole process the next day.

 

By this time, I have learned to reach out, and ask for help. Which was very hard for me to do in the beginning. I'm usually a giver, not a taker. I didn't feel comfortable taking things and felt that there were "wprse off" families, and people should help them first. It wasn't until a friend thrust a cassarole into my hands and said YOU ARE WORSE OFF EMILY! YOU ARE LIVING EVERY MOTHER'S NIGHTMARE! that it finally sunk in! My work was amazing, they collected money and send gift cards and even cooked a home cooked meal for us every Friday night! (Which was amazing! If you are looking to do something for a cancer family, cook some real food! Hospital food can only take you so far!) A special shout out to an Aunt (that lives far away) of mine who sent a cheque the second she heard. That cash was vital to set up our "at home" medical station. Including a very expensive digital ear temperature taker (I can't of the proper word at the moment...lol) new clothes to fit his bloating body, and much needed gas to get back and forth. Another Aunt who lives closer, would come by with random giftbags filled with handy hospital snacks, a mix of junk (Kraft dinner in a bowl) and good food (trail mix, etc) and wonderful hospital toys! Little dinky toys to play with, dog shaped mini back pack and of course the famous Dino flashlight that when it turns on it says ROAR! Were you scared? Which caused major giggles and laughter in the hospital, mostly from Griffin, but also his nurses and roommates too!

 

I will continue when I get feeling back in my fingers! LOL

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Feeding Tube-To tube or not to tube? That is the question! Thoughts for Parents that are unsure

December 10th, 2013

Feeding Tube-To tube or not to tube? That is the question! Thoughts for Parents that are unsure

 

The following is totally my experience with MY child, which I'm sure you know, every situation is different! So the following may not pertain to you and thats ok! :)

 

And the question is before you...To tube or not to tube? The Doctors seemed to put it in our hands. And really, I didn't understand what a feeding tube did and I kind of resisted in the beginning. I regret the hesitation now!

 

First of all, I should say that Griffin is a pretty easy going kid, and not one to rip out IVs, ports, etc so I figured he wouldn't pull out the tube. Second of all, we were having A LOT of trouble giving meds. The only things he wanted to eat were egg salad sandwiches, cheese and popcorn, so you could hide pills in there and if we hid liquid meds in his juice, he noticed it right away and spit it out! The FIGHT to get him to take meds 50 times a day was exhasting for both me and my child and just didn't seem worth it. And I knew these meds were important and he needed to take them! They were not up for a debate, but try telling THAT to a 2 year old! We tried EVERYTHING.

 

In the end, we opted for the feeding tube for meds purposes only! And my gawd, BLESSING IN DISGUISE!

 

Instead of a half and hour of physically fighting with my child, actually someone holding him down, while I pried his mouth open, it turned into a couch snuggle session where we would be reading a book and my hubby would unhook his feeding tube from the back of his shirt, put the meds in, flush the tube with water, pin it back to the shirt, DONE! OH MY GAWD! It changed our lives!

 

A feeding tube is a realtively painless procedure. The Nurse puts lube on the end on the tube, the child takes a deeeeep breath, (some kids choose to drink water at the same time, helps guide the tubie down) and the nurse pushes to tube up the nose and down the back of the throat to the stomach. They then test the fluid coming out of it to make sure the tube is not in the lung. Then they tape the tube to the child's face. They then take the guide wire out of the middle, so now the tube is much squishy! The tube is a bit long for children, so we would loop it with a bit of tape and pin it to the back of his shirt to keep it out of the way. It was uncomfortable for him for about 2 seconds, tears would for in his eyes, and then the procedure would be over and he would go back to playing!

 

Griffin actually got FOND of the "tubie" as we called it, he liked having it, he understood it avoided the meds so he was happy! The only time he pulled it out was in his sleep (by mistake) when the tape on his face got loose. And us as adults pull it out at least six times, mostly the tube would get tangled in with IV lines or seatbelts or whatever and we would mistakenly pull it out. Griff would be mad and look at us like, "look what you did" lol Grandma also pulled it out while wrestling with Griff on the cot at camp while pretending to be tigers. It was quite the story as we had to tell camp leaders, camp nurses, and hospital staff that a tiger did it. Griffin thought is was WAY too funny!

 

Later on in his treatment, has the chemo and Rads caught up with him, he began to lose weight and not eat enough, then a feeding was needed through the night. We hooked him up to a feeding pump with pumped food a little bit at a time throughout the night. It was WONDERFUL! You didn't have to worry if he was eating enough, or if he was getting enough of the different food groups, it was just silently feeding my boy as he slept. We found his belly got less upset and he woke less throughout the night. And when he had CDIFF, there was a worry that he could get dehydrated, I would just pop some Pediasure in his tube, didn't have to force him to drink anything he didn't want too!!!

 

Even when his treatments were done, and his feeding tube removed, he would still ask about where tubie went! And if I did have to give him some meds, he would wave his hand to his back and say, TUBIE! Like don't put it in my mouth! Use tubie! LOL

 

Some downsides are:

 

Griffin's face started reacting to the tape stuck to his face, like to the point that his skin was breaking down. Its important to find the kind of tape that works for your child. Every skin type is different!

 

Some meds have a strong odour or flavour to them, or if the meds came right out of the fridge, it can be shocking if your kid isn't expecting it! Make sure you warn them, because something hitting the bottom of your stomach without warning can be jarring! LOL

 

Have several CHILDREN"S feeding tubes in your stash of med supplies. You would surprised how many small hospital so not stock them, or run out of them etc. Have extra tape, stickers etc for emerg tubie taping in the middle of the parking lot.

 

Throwing up can have a gross effect of throwing up the tube. Yes, it has happened (never to Griff thank gawd) But the tube comes up with the stomach contents and his now hanging out of the mouth and still in through the nose. So now you have to pull the dirty, vomit/stomach acid covered tube out through the sinus and nose...ewwww...but that doesn't happen often or anything!

 

Another issue would be the tube itself, being there. Your child will get stared at, babies will try to yank at it, children will ask about it. Some cancer parents would get upset. But just like any other medical disability, instead of getting insulted, or awkward, turn the situation into a learning experience. Usually the other parents are embarrassed that thier child pointed it out and are VERY greatful that you are willing to talk about. My usual speech was "This is Griffin's feeding tube, its like a straw that goes down to his belly. He doesn't like to take his medicine so the Doctors had to put it in there. Do you like to take your medicine? No? Neither does Griffin. Would you like to touch his tubie? Do like his cool 'cars' sticker that he has on the tape on his face? The tape holds the tube in place, cool eh?" You can usually judge on the kid if he wants to continue the conversation from there. And the parents either keep the conversation going or greatfully pull thier child along. I've never had a bad experience out in public with an ovbiously cancer kid in tow. The world is what you make it. Choose to make it a positive experience. Others will follow!

 

So in short, it totally depends on your child, and your situation. But if you are asking my opinion...GET IT!

 

 

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Dear Cancer

December 10th, 2013

 

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...

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The stages of grief...well, no, more of cancer

December 9th, 2013

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:

 

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 focussing 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 fuction 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.

 

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 thier children, abuse thier 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 despretely 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 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 hasnt happened yet!

 

Saddness

 

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 Tramatic 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 neutrapenic, 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! Please see my next post called "Dear Cancer" as that explains it better without repeating my thoughts!

 

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Hair loss

December 9th, 2013

I'm not a vain woman. I'm not "into" hair and makeup and such. But I was worried about Griffy's hair. He is a hair twiddler. It was his way of comforting himself. What would he do if it fell out?

 

One afternoon, it was snowing so my Hubby was out plowing snow (He is a landscaper) Griffin and I were sitting by the window watching the snow fall. As we were sitting there, I noticed his hair was falling out, slowly, softly, just settling around his shoulders and on my shirt. I started crying and hugging him tight. This was the first sign we had that he was REALLY SICK. This hit home, I can't hide from it, Cancer was looking me right in the face. As we sat there, he started sucking his thumb and twiddling his hair, he wrapped the hair around his finger, it came out in one big knot, still wrapped around his finger, he started getting upset, not knowing what was wrong. It was more than I could handle...I booked a salon appt the next morning. Becky my hair dresser saved curls for me that I saved in my wallet. I still have a lock of his hair in there. Helps me remember, keeps me humble.

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