‘Dear World…’

Dear world, In my lifetime I’d like to see a cure for Ewing’s Sarcoma and other cancers so other families don’t have to know the heartache of losing a loved one to this horrible parasitic disease. For a cancer that is supposedly rare I can count on my hands the number of children & young adults who are still fighting for their lives or have lost their beautiful lives to the disease is unfortunately increasing.

I question myself did I push Jacob’s treatment enough, was there more I could have asked for or was it just that his body was ravaged with new disease it couldn’t take anymore poison. They are the ‘what if’s’ that will forever be locked in my subconscious. I had never heard of Ewing’s Sarcoma until Jacob was diagnosed and I cringe every time I read about it or see it on the news.

I find it hard to write about the real truths of what Ewing’s is like so I will share the brutally honest words of a young lady who lost her partner recently to this disease.

Forget “inspiring”, “brave”, “positive attitude”… As much as a patient may embody this, sarcoma is ugly. 

It is relentless. You can’t cut it out or burn it out with radiation. It always invades your bloodstream and can pop up anywhere in your body. It may go to your bones and break them open from within. It eats your bone marrow. It may attach to a vital organ and grow, crushing the organ until it no longer works. Its favorite place to take up residence is in your lungs. There, it tries to crush your heart or ability to breathe or drown you in fluid. It remembers past poisons you have used to try to defeat it. It mutates and finds a loophole around every toxic drug you throw at it. You play catch-up constantly. You fight against a ticking clock. Finding a poison that may help you stay alive, all while fighting insurance to let you have a chance, when not trying it is certain death.

It is agonizing, scary, sad, ugly, dehumanizing and so so unfair.

What is most unfair is that this monster of a disease (and there are maby types of sarcomas) is ignored. Less money is spent to find a cure than just about any other cancer. My husband is forced to try chemo regimens discovered FIFTY YEARS AGO. All other cancers have the funding to see newer, better drugs to keep you alive longer. This is not fair. I am angry at the world and scared. I don’t know what life will be like next week.

We aren’t ready to give up yet and will fight til the end. He has so much to live for.

Jacob, Ash, Chris, Mitch and so many others had so much to live for and so has Rhys and Kailem and all the others who continue their fight. I hope with all my heart that these new trials will one day eradicate the disease from our existence so that we only hear about cancer when we talk about the zodiac/hororscope sign.

I’d like to leave you with a song that was rewritten by a grandparent of a child who is fighting Ewing’s at this present time. It will probably pull at the heartstrings…it was his hope that it would spread far and wide to be yet another message of support for Childhood Cancer research. It’s understandable that hospitals and care facilities want to show children and young adults being treated and hopefully cured, but he thought it would be useful for people to see the realistic and sometimes sad side of cancer. They tried to show that in a tasteful but powerful way. See if you can find Jacob in it x

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