#ewing's

[pluto-wayward]

we are very rare, and we are mostly dead

[handmadeink]

(via cancer cant)

[louise09]

Stressin...

Oh god, I am so nervous for tomorrow. I just heard from the hospital that I need to get there at 8am tomorrow - that means a 6:30 wake up urghhh. I know that I am in the best care but I can't help being nervous. I will update everyone as soon as I am awake and in a condition to write a post lol. I will take some before and after pics of my leg so people can see the scars etc. As I haven't been able to find much information on a bone allograft in the tibia in someone my age Fingers crossed all goes well....

[louise09]

Update

So I know I have been seriously missing off my blog for the last week which is bad of me. Things have been good, my dad was here on the weekend and I haven't seen him in a month (my parents live in Sydney) so it was really good to see him. We all went out for dinner to celebrate that my first bit of chemo is over. Unfortunately I had some pretty bad news on Monday, I got referred to a fertility specialist as I was hoping that there would be some time to harvest some eggs from me in this time that I have off from chemo before I start up again because there wasn't any time to freeze any eggs before I started treatment. Unfortunately the doctor said that there still isn't enough time in the small gap that I have, plus there are too many health risks to do with blood clotting etc. he also told me that by the time I finish my upcoming 9 months of chemo there is little to no chance that my ovaries will work. He said we should start looking for someone willing to donate their eggs to us now and start saving money as it costs in excess of $8,000 to harvest donor eggs. Needless to say I was absolutely devastated, I have wanted kids my whole life. I met the man of my dreams 7 years ago and married him 2 years ago. To be told that I will never have a baby that is a little bit of me and a little bit of him just breaks my heart. I know I should be grateful that I can still get donor eggs and carry a baby and give birth etc, but for now I'm still mourning the fact that I won't be able to have a little mini me baby. I guess all I can really hope for is a miracle that my ovaries still work after treatment... Also today I meet with my orthopedic surgeon, will review all my scans, make the decision on if I am just getting a section of my tibia replaced or if I have to have a full knee replacement and also set the date for surgery. I'm pretty nervous, I have to sign consent forms that say that if they get in there and the tumor is wrapped around an artery or something then I consent for them to amputate mg leg. I don't want to lose my leg God it's been a hard week....this is so much more than I was ready to go through at my age When did everything get to feel so impossible

[louise09]

I hate when I search the Ewings Sarcoma tag and my posts are the only ones that come up! Where are my other Ewings people...

[revmolly]

I Am Localized.

Last week, I had three tests in three days. Bone scan, where they inject you with radioactive substances, wait three hours for them to permeate your being, then look at your bones for tumors-n-such. Then bone marrow biopsy, where they lightly hammer big needles into your bones (don’t worry: they give you morphine first), and extract liquid marrow and solid bone, to look for tumors-n-such. And finally a MUGA test (we kept calling it my Muggles test) to see if I had magical powers, and to check if my heart was strong enough to withstand one of the chemo drugs, which can damage the heart. Another one for which I get injected with radioactive substances. Friday I let you know that my heart was strong, my bone scan clean, and last night I got word that the bone marrow biopsy was totally CLEAN. That means No Tumors Anywhere In My Body. I have been so used to expecting good news and getting bad news lately that I didn’t realize how much I was dreading these latest results—but I have broken pattern. The other shoe has fallen, as much as it’s going to fall, for now. They are calling me LOCALIZED. That means that my organized cancer was in one place, and one place only—the opposite of metastatic. Of course, the sneaky thing about Ewing’s is that it ‘seeds’ into the blood, so, if I correspond to the bell curve, there’s an 85% percent chance there are still some seeds in my body, even though the lung tumor is gone. That’s why they do the grueling chemo, as insurance—it would be ethically wrong not to suggest it. But the fact is, I may be cancer-free already. Sometimes I even feel cavalier and want to say to my oncologist, of whom I am growing terribly fond (is this Stockholm syndrome?), “Oh go ahead, do your little chemo, even though you and I both know that I am cancer-free. I’m tough. I can take it.” The bad news: I do not have any magical powers. I am a Muggle after all. But after all those radioactive substances, really, one never knows…