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please remind me how incredibly unlikey...

post #1 of 6
Thread Starter 
it is that my daughter has cancer. She has ataxia telangiectasia, which gives her about a 40% chance of developing cancer at some point in her life. However, she is ONLY 4, and the most common cancers for kids with A-T are lymphomas and leukemias. She has chronic congestion that is getting worse, as well as slightly blurred vision in her right eye (which could be completely unrelated.)

She has no allergies, and most likely what she has is a subclinical sinus infection that refuses to be cleared up by normal antibiotics. We are going in for an MRI in a week or two, so hopefully they will get a good look at her sinuses, and then we can get an endoscopy, culture it, and get her on a good antibiotic to clear it up. Kids with A-T are prone to sinusitis, so this is very likely.

However, these are also signs/symptoms of rhabdomyosarcoma, which is the most common soft tissue tumor in children, AND it is linked to the ATM gene (my daughter's mutation).

She has had this congestion for over a year, and if it was a tumor it would have grown so big by now it would be unmistakable, right? Her congestion is getting worse, but that is just because she probably has an untreated sinus infection.

I wish we could do the MRI right now. Ever since the experience I had getting my daughter diagnosed, I have no faith in doctors and their opinions. Our ENT can't be bothered to even SEE us in his office until September, but our hem/onc NP and dd's doc down at Yale want her seen asap, so my NP ordered the MRI. I am so frustrated!
post #2 of 6
I couldn't read this and not post ((((((((((((hugs))))))))))) to you mama. It is unlikely your dd has cancer & I hope that the MRI gives you all the answers & reassurance you need.
post #3 of 6


The odds are good she doesn't have cancer.

Is there a way to have the MRI done at Yale?
post #4 of 6
I love Yale, fwiw.

I try really, really hard not to allow myself to be tortured by possibilities. I know how incredibly difficult that is, but it's the only way I've stayed sane at times. I just repeat to myself, "It's not happening right now, I'm not facing this right now, if it happens, I will deal with it then, I am not going to allow myself to fall down this hole unless it's actually happening." Etc. Sometimes it works. And more often than not, it DOESN'T happen, and I am glad I didn't spend TOO much time sobbing or staying awake or panicking over a what if.
post #5 of 6
It will be ok. Your daughter is fine. It will be ok.
post #6 of 6
(((((((HUGS))))))))

Sending you some positive vibes!!
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