Founder of RhabdomyosarcomaInfo.com, Kimberly Edwards, shares with you her story about why she started this charity for Rhabdomyosarcoma because of the experience and loss of her father to this rare cancer.
Kimberly wishes every father out there a Very Happy Father’s Day!
Kimberly lost her father, Gerald Turner, to rhabdomyosarcoma. He was initially given 4 months to live upon onset of diagnosis. He survived 1 1/2 yrs and fought til the very end.
In memory of the greatest man Kimberly ever knew, she started this charity and website to provide information on this aggressive disease, as well as provide the ability for people to donate money to further research and patient outreach for those affected by rhabdomyosarcoma.
Help by Donating & Raising Awareness of this aggressive cancer by clicking on the “Donate” button in the right hand side bar of this website.
“Like” on Facebook: http://facebook.com/RhabdomyosarcomaInfo
Subscribe on YouTube: http://youtube.com/RhabdomyosarcomaInfo
Follow on Twitter @Rhabdomyosarcoma: http://twitter.com/Rhabdomyosarcma
Also Donate by Checking out the “Red is for Rhabdomyosarcoma” Jewelry line by “K, Turn Around” Jewelry by Kimberly Edwards: http://KTurnAroundJewelry.info/category/charities/red-for-rhabdomyosarcoma
This is a continuation from my Rhabdomyosarcoma Journal Entry Part #1: Coping.
A Need for Inspiration:
On my first visit to the oncologist’s office, there was a tall gentleman there talking with his wife. He introduced himself as “Larry” and quickly explained the doctor was great.
The Doctor had done wonders for Larry when no one else could and he was fit as a fiddle. He also said:
Doctors throw a lot of information at you when you’re first diagnosed with any illness.
So, I found that while I’d hear a lot of information in the office, I’d have to process it along with the information booklets and leaflets I’d been handed, at a later time…usually, when sipping a cold soda on the back deck, or up in my room while listening to music.
An important note here is that every person’s experience with chemotherapy & radiation is different. What I experienced was how my body reacted. You could talk to 5 other patients also getting chemo or radiation and they’d describe to you different side effects that they were having.
I don’t want anyone to think that just because I had the side effects below (and ones that you’ll see in future blogs), it does not mean that every patient gets them. We’re all different in how our bodies adapt to treatment.
Okay, before I start into this next article, I need to explain the long pause between the writing of my Rhabdomyosarcoma Journals…
…This February (2011) was a roller coaster ride. It started with an unexpected hospitalization & horrible ice dams in my condo while I was in the hospital…Then it was a vacation, at Sugarloaf, which was a blast. I’ll get more into the hospitalization thing as I get through these blogs.
Timeline-wise, I haven’t gotten to the complications of treatment part, but I’ll get there.
This blog was very difficult to write, as it brought back many strong memories for me and tears. In the moments described below, my life changed from the innocence of youth to the reality of fighting a serious disease.
There is that limbo time that everyone has between first surgery and the ramping up of treatments. I was on a mixed-message high during that limbo time.
Watch Kimberly’s LIVE Interview right NOW with Patrick Harb!
RhabdomyosarcomaInfo.com, LivingPink.info & Kapow Models founder, international model, Kimberly Edwards will have an exclusive 1 hour LIVE interview with Patrick Harb on February 4th @ 7:00 – 8:00 pm EST.
If you like to be WITH US in the studio, give us a call at: 905-617-3365
If you have QUESTIONS that you would like to ask during the interview, you can place your questions in the DISCUSSION BOARD, and they will answer it accordingly.
One of the most difficult things with being diagnosed with Cancer is the change in relationships that inevitably takes place.
In some instances, it makes them stronger… in others, it breaks them apart. My diagnosis came at an awkward time when typically the teenager in me was yearning to be free of my parents and off to college… but I couldn’t be THAT teenager. Like it or not, I had to be cared for.
Today’s post has a lot to do with where I came from before things became discombobulated and how that loss of control crept into my life. And more importantly, who would be there for me?
It’s quiet and dark… I hear something tearing around downstairs – to the scratching post, then bat a mousie around the living room… Chirps of excitement and then a wicked dash upstairs- turn the corner (shredding carpet through the turn) and in one adept leap, she’s on my bed, on my chest, panting… purring.. and she is happy. Arista has done her morning triathlon and it’s time for a 5 min nap nestled on my chest- usually leaning against my face.
Ellie on the other hand- she’s snoring in the bed next to me. I should clarify- she’s a cat too- only instead of being one and a half, she’s 13 with kidney failure. She looks up as I pet her back- she too begins to purr. The rumbling now filling my chest from the young one and vaguely reverberating from the bed next to me. This is how mornings should be- relaxing. A time to take stock and enjoy the little things.
I shuffle myself to a seated position on the side of the bed- but only after having a 2 minute discussion with Arista on the fact that she needs to move. Her passive aggressive stare at my toes wiggling under the sheets is her way of saying “you can afford another 5 minutes.”. No I can’t. My feet touch the floor, I feel the creaks… it’s not the floor boards, it’s my arthritis. Yep- it’s true, as ya get older things tend to ache a bit more but no matter. And what’s this inhumanity? I have to Continue reading →
Information about rhabdomyosarcoma can be confusing at best. Here is some information that might help you that is very clinical in nature, but we have tried to summarize the main points and give you the meat and potatoes of the study.
The article linked below looks at the different subtypes of rhabdomyosarcoma. There are 2 main ones – Embryonal and Alveolar.
Researchers are looking to find better ways of diagnosing and treating Rhabdomyosarcoma.
The treatments are pretty nasty and the long term side effects are not good either. So, we look at the genetics and find things that might predict how the cancer might behave at the moment it is diagnosed.
The article below explains how microRNA-206 levels in the tumour can do just that. If you have lower Continue reading →