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Original poster

DS has brain tumour - update

381 replies

Clarinet60 · 14/09/2005 11:01

We went to Alder Hey yesterday and they were very efficient in terms of ordering a second scan for this Friday, etc, but we are back to square one in terms of whether/when a biopsy will be done, because the person we saw wants to start all over again and let his own team decide. This is worrying, because the oncologist at Manchester said ds needs a biopsy - I just hope the new team agrees. Also, we were wrapped over the knuckles for changing teams because they are all good friends together. I lost a lot of sleep last night fuming about the injustice of that, because the Manchester team lost letters, ignored requests for blood test results and generally had a 'some time any time' attitude that didn't put ds's welfare first, etc etc. Mustn't rant, this is supposed to be an update! So, scan on Friday (to see if it's grown) after that, who knows?

OP posts:
ThomBat · 12/10/2005 13:59

hi again Drolie,
okay, well rather than send one now, when he'll wonder what's going on can you let me/us know when he has his next 8wk scan and I'll time it for that maybe? Meanwhile please can you post deatils of the Ronald McDonald House at Alder Hey and perhaps we could start a seperate thread for donations etc. TC x

edam · 12/10/2005 14:11

Droile, I am so very sorry that the news wasn't better. It's so unfair.
Please do call the consultant back - they should be happy to have a follow-up conversation either by phone or in person.
I wish there was something I could do, or say, that was helpful. But I am thinking of you if that is any use at all (and even if it isn't).

tamum · 12/10/2005 14:18

Droile, what can I say- I am so sorry that the news is not good. Do think hard before you turn down the holiday- I think it's a fab idea, as is the one about contributing to the house, but don't burn your bridges just yet, see if it appeals a bit more in a few days.

Much love to you all.
xxx

DissLocated · 12/10/2005 14:26

Droile - I don't know what to say, I'm so very sorry the outcome isn't as clear cut as it could be.

Please keep posting and let us all know how you are all doing.

xx.

aloha · 12/10/2005 14:27

Oh Droile, how bitterly disappointing. I honestly don't know what to say. I'm so sorry the news wasn't better.

ks · 12/10/2005 14:27

This reply has been deleted

Message withdrawn

iota · 12/10/2005 14:32

I jst don't know what to say other than I'm very sorry to hear this. Best wishes, iota

Springchicken · 12/10/2005 14:41

Droile, I have been waiting for Tuesday's results and thinking a massive amount about you. I just didn't know what to post yesterday and tbh, still don't now!

You are being amazingly strong - I don't know how you can even think straight, let alone function properly.

I really do hope your DS is doing well at the moment, sorry if you have alreadyt answered this but is your other DS aware of the situation, how is he coping with eveyrthing?

dinosaur · 12/10/2005 15:02

Droile, just wanted to send you our best wishes and prayers. And I echo what others have said, if there is anything we can do/send/organise, then I for one would be glad to contribute.

motherinferior · 12/10/2005 16:00

There's nothing I can say; I am so very sorry
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

CountessDracula · 12/10/2005 16:02

Droile so sorry it wasn't better news. I just can't imagine how you must be feeling.

motherinferior · 12/10/2005 16:02

And Droile, maybe one thing we can help with is just the phoning and getting through to people for you. I am at my desk most days; I could take on just trying to get through to someone for you. There might be logistical problems about getting them back to you but things like fixing appointments might be made easier?

Original poster
Clarinet60 · 12/10/2005 16:42

Thanks MI, that would be really good.
I'll just answer a bit at a time.
Blu, they meant impaired function and eventually, worse, but when I asked what form the impaired function would take and when the 'worse' would be, they said it was best to talk about that when it happened, because nothing is certain. They want to concentrate on getting him through the next few years, which is why I'm going to have to do a major internet search (good job it's part of my job) because we need to know the best and the worst likelihoods so that we can plan the next few years properly, because there are things you would do differently if certain things happened.
(By the way, no question could possibly p*ss me off, don't worry.)
Springchicken, his brother doesn't know the latest develppment, but seems to be taking everything in his stride.

OP posts:
Original poster
Clarinet60 · 12/10/2005 16:44

Ronald MCDonald House, Alder Road, Liverpool L12 2AZ. [email protected]

OP posts:
Blandmum · 12/10/2005 16:46

Sending you all my love and best wishes...don't know what to say, can't find anything to say that would be helpful but you and your whole familt are in my thoughts.

hmb

Blu · 12/10/2005 17:02

Thank you Droile. I just don't want to feel that there are things that we are afraid to ask you or listen to you talk about.

Your plan for seeking all the info and thinking over the next few years sounds really good, buut I guess some of what you find will be really hard to take in. Remember that on parents sites etc, you tend to hear far more of the problems than the successes - the parents of kids who are chugging along quite nicely with no further complications or whose kids conditions have simply plateaud out for a long period simply don't post about it much!

tamum · 12/10/2005 17:06

Good post Blu- you are bound to find a lot of scary stuff Droile, but remember nothing is set in stone.
xx

blueteddy · 12/10/2005 17:12

Message withdrawn

hoxtonchick · 12/10/2005 21:22

droile i'm so sad for all of you. xxx

HRHWickedwaterwitch · 12/10/2005 21:27

Droile, I'm so sorry. I'm happy to do anything I can do to help too. I think we all wish we could really do something, like make this go away but atm the best we can offer is support if you want us and practical help if you need it. I can help with phone calls, anything too.

Tinker · 12/10/2005 21:30

droile - I am so sorry to read this. Wish this wasn't happening. Are you in touch with anyone who has been through something similar?

princesspeahead · 12/10/2005 21:31

Droile, I'm so so sorry. I have a friend whose son had a brain tumour aged three. Major surgery, chemo etc. He is now 9. His pituitary was knocked out so he needs careful managing as far as hormone replacement goes, and he has a few other issues but he is a lovely active boy. If it would help you at all to talk to his mother, who is so nice and a bit of an old hand at all of this now, please do CAT me and I will give you her number. I think all of his treatment was in and around Oxford.

I'm so sorry that you and your family are going through this, it is bloody unfair somehow... thinking of you.

morocco · 12/10/2005 21:42

oh droile, I don't know what to say, I'm sorry the news was not as optimistic as it could have been and you are all in for a longer haul fighting this tumour than we all hoped. Lots of emotional highs and lows lie ahead but you will keep on sailing through them together as a family.

on a different note, we are moving to Bolton next week, are you in Manchester? Perhaps we could meet up some time if you fancy a chat in person, I know we don't know each other but sometimes it can be easier to share emotional stuff that way. I'll cat you my tel no once I've got it if you like.

Hugs

soapbox · 12/10/2005 21:44

Droile - so very very sorry that the news was not better for you all

Wishing all of you much strength over the coming weeks and months!

Blu · 12/10/2005 21:50

Droile, if you think it might help, don't hesitate to call the contacts who have had to deal with something similiar.

It's a tiny, tiny thing compared to what you are going thrugh, but I have several times talked to friends of friends, and even friends of friends of of MN-ers about DS's leg - and have always been more than pleased to plough my experience back in,listen and share - and in the same way, they will be plesaed to help you.

XXXXXXX Thinking about you a lot.