Waiting for a diagnosis on my son

[kaybee]

Anyone have advice on how to stay calm while waiting for a diagnosis? My son had a strange growth on his eye surgically removed last week. It was sent out to a pathologist, and we are waiting for the results. We were told that if all was well, they would be able to review it at our local hospital and we would likely have the results in a week. If it was more complicated, then it could take as much as 3 weeks.

It's been a week. I called the clinic and they said no word yet, but that it was sent off to the Mayo Clinic. This means that A) it wasn't straightforward, and B) more waiting.

The likelihood this is anything we need to worry about is low. But the thing we are trying to rule out is lymphoma.

I need some way to not think about this and just wait it out - any advice? My productivity is plummeting - I almost wish I hadn't called the clinic today. My son seems fine. It's probably nothing. I just want it to hear it from his eye doctor that all is well. Waiting sucks.

[mamefati28]

Hugs to you, it must be very hard waiting.
Sending lots of good thoughts your way.

[sbgrace]

I don't know how to wait without it consuming a person. The wait always ends and I think you just survive the best you can (do the next thing type...) before then. And, ideally, you do not google anything about the matter while you wait.

[Lisa1970]

((((hugs)))))

[AtYourCervices]

I don't know if there's anything you can do to avoid obsessing about it. You can try distracting yourself with a new hobby. Keep yourself busy. Keep moving.

DON'T google what it *might* be yet. That will cause more worrying. We, as mothers, always jump to worst case scenario.

Good luck!

[carfreemama]

Hang in there with us. You just got through a bunch more hours! It sounds like you want to do more than just survive, though; it sounds like you want to maintain at least some sense of normalcy and be able to carry out some basic responsibilities. This may or may not be reasonable right now, but I think it's great that you're at least thinking that way. I really do think you're going through the worst of it right now; that no matter what happens, the waiting is the most agonizing part. And it is PROBABLY NOTHING.

Someone said the website "wrong diagnosis" is the most dangerous site out there. I tend to agree. How are you? I say just keep reaching out and try to bring some small pleasures, things to look forward to at frequent intervals, into you and your family's lives as much as possible.

How are you?

[kaybee]

Thanks for your kind words.

I know this will all turn out ok in the end! Really it will. It doesn't help that this case has been an odd one from the beginning (misdiagnosed by his pediatrician and then stumped his opthamologist). I guess I just want to know what's going on.

And now I have to get some work done - somehow I will get my brain to focus on the papers I'm supposed to be writing instead of on my son. No googling today... Thanks All!

[tylerdylan]

We are playing the waiting game here too. DS has already had 16 months of chemo for a brain tumour. Now they THINK it is growing again. We have to wait 2 months for another MRI to confirm things and then likely another 16 months of chemo to endure (harsher drugs this time around).
The waiting is awful!!!!!!

Things I do:
try to get out of the house as much as possible
go out with friends and talk about other things
read a good book (and then another and another and another) - I didn't read before all this began initially, now it is what keeps me sane. diving into the characters and not thinking is good.
family fun days

Bedtime is the worst. it's the only part of the day where I can't keep busy and then my mind gets rolling and I can't sleep. For now I am taking Gravol to knock myself out. I can't bare laying awake all night thinking and I figure gravol has got to be better for me then prescription sleeping pills.

And I agree with all the pp. Don't internet search for anything medical related. It NEVER makes you feel better!!!

[kaybee]

Originally Posted by tylerdylan

We are playing the waiting game here too. DS has already had 16 months of chemo for a brain tumour. Now they THINK it is growing again. We have to wait 2 months for another MRI to confirm things and then likely another 16 months of chemo to endure (harsher drugs this time around).
The waiting is awful!!!!!!

My heart goes out to you - what an ordeal. And two more months of not knowing is hard.

I'm still waiting to hear back, but I'm still hopeful that it's just a matter of getting through all the tests rather than that they found something.

I hope you and your son come through this next set-back ok. I am sending all the good vibes I can your way. Thanks for the tips - I appreciate it!

[carfreemama]

tylerdylan, I'm so sorry you and your family are going through this. Sending you big hugs.

kaybee, still thinking and staying positive and hopeful for you!

[kerc]

Kaybee are you still waiting? I'm sorry I haven't had a moment to call -- I've been trying to find a time to call and find out what's going on when my dd1 isn't within earshot.

[kaybee]

Originally Posted by kerc

Kaybee are you still waiting? I'm sorry I haven't had a moment to call -- I've been trying to find a time to call and find out what's going on when my dd1 isn't within earshot.

Still no word back. Apparently the Mayo clinic is slow. It sounds like they just wanted to run tests they couldn't do here, but still ...

[Marnica]

Tylerdylan - so sorry you and your family are going through this

Kaybee - Waiting is terrible I know. Worrying is such a useless thing, but so hard to control. Ive been there with a potential cancer dx for my DH (turned out to be non-can tumor) but it was so scary. I hope you get good news soon!

[kaybee]

Update - it's ok

We heard back from the doctor finally - apparently they didn't have enough tissue to run all the tests they wanted, but they were able to rule out the bad stuff. So we still don't know what caused the inflammation, but it's not anything we have to worry about in the near future. Phew!

Thanks for the kind words and support!