[Maple Leaf]

2 weeks ago my beautiful 3 year old niece was diagnosed with a malignant brain tumour. This previously healthy happy little girl had no symptoms at all until she woke up one morning with a hand tremor and half her face paralyzed.

DH's brother lives in the UK, so we are all feeling very helpless over here. Not sure what to say, what they want to hear, what they need.

They are very scared for their other kids as there could be a genetic link with this type of tumour (ATRT type-very rare only 3 in a million) and my niece is an identical twin (as well there is an older brother) so further testing needs to be done to see the risk to other siblings,esp her twin.

They are looking down the barrel of surgery (happening tomorrow morning UK time), 6 weeks of radiation and then 4 months of chemo.

My FIL and DH's sister are flying over there tonight to lend their support.

Really would like some guidance from other parents who have had a sick child to know what helped them the most.

Thank you.

This post has been edited by Maple Leaf: 06/12/2012, 09:09 AM

[LilWil2]

Hi Maple Leaf

There are over 100 types of brain tumour, not all malignant, and some have better prognosis than otheres. I don't know much about pediatric tumors (I am dealing with my own anaplastic astrocytoma at 37yo), but couldn't not respond to your post.

Even given my experience, I still can't think what you should say. For me - I was really annoyed with people that didn't seem to grasp the severity of the situation. I was also rather annoyed by people that had read 2 pages on wikipedia who were trying to tell me that I would 'beat the odds for survival'. I needed first to mourn and be scared and then once I'd achieved a zero base, I was happy to work upwards from there and start building hope. - but to have people 'hoping for the best' at the outset seemed to play down their sympathy (or understanding) for the situation. I guess I'm just saying - give your BIL the option of being scared about everything. You have to be strong for so many people - it's nice to be able to break down in front of someone.

I have gone through surgery, 6 weeks of radiation and I'm now halfway through 12 months of chemo. It was pretty hard for me - and I'm a very strong woman. I am really humbled to think that little old ladies and children have the strength to tolerate the same treatment.

Wishing the best of luck to your family.

Renee

[Maple Leaf]

Renee, thanks so much for responding. I'm sorry to hear of your own battle. This is becoming all too common.

The ATRT (atypical teratoid rhabdoid tumour) which my niece has-has a very poor prognosis unfortunately but we are all praying for a miracle-she has just turned 3 and that can raise the survival rate a bit as compared to those kids under 3. Her dr's give her a 50/50 chance at the moment.

She had her surgery and is in ICU now, paralyzed on the right side but they are hoping this is temporary, they feel they got most of the tumour removed, the rest will be blasted with the radiation and followed up with chemo.

I am staying with touch with BIL and SIL as much as possible, phone calls and emails. I think a lot of people feel like hiding when news like this hits, so I am just trying to be around (as much as possible from such a great distance).

Best of luck to you Renee and I hope the last 6 months of chemo treatments fly by for you.

[LilWil2]

Hey Maple Leaf - not that my experience will in any way mirror your neice's - but I had lag problems in my right side after surgery. It took me about a week to be able to pick up a 5c piece. I think I still have reduced strength - but not so much you'd notice. I do however still notice the side effect of surgery/radiation which gives me bad memory and ... did I say bad memory? LOL.

It isn't as bad as it was 4 months ago though, so there's hope that after the worst symptoms of surgery/radiaton are over, there's hope for increased recovery.

[Cat12]

Hi, I have no advice to offer, but how terrifying to have an identical twin in that situation. Best wishes to all of the family.

Cat

[tenacious2]

I too have no experience here, but am sure that letting your family know they are in your thoughts and are loved and cherished will mean a lot to them. Sending your neice some positive vibes in the hope that it helps this dear little 3 year old girl (the same age as my DS).

[Kez82]

I've only just seen this but have a few suggestions:

1. I was eager to talk to others going through the same thing - I had LOTS of questions. Perhaps you could do some research about what organisations/support groups/online forums etc there are over there and send them an email with a list of them all stating you've done the leg work for them, and feel free to use these if you wish.

2. Practical support was much needed. Financial help (I had to resign from work - so loss of income) again maybe seek out what services your BIL/SIL can tap into. Practical help such as a cleaning service - maybe if you have the capacity to assist to organise this? When undertaking chemo, immune system is suppressed and therefore important to keep on top of bugs and germs in the house - something that's often difficult to keep on top of when your main focus is your kids' health. Maybe see if there are any meal delivery type places that you can organise to have ready made meals delivered to them?

3. Emotional support - just be there for them on the end of the phone, email etc if they need you. Keep offering help.

Umm that's all I can think of right now.
I pray that you niece's surgery and follow up treatment is successful and that her prognosis is good. All the best to you and your family.

[Maple Leaf]

Kez, thanks for those suggestions.

FIL and SIL are over there at the moment helping with the other 2 kids, but are only there for 3 weeks. Good idea about a meal service/cleaning. Will definitely be looking into that!

Congrats to your daughter finishing her treatment in Nov.

Am pleased to report that my niece survived the operation. Her right side is still paralyzed but she is showing glimmers of movement and even started to speak. We are hoping for the best.
They won't know for a few weeks the result of the genetic testing and if the identical twin is at risk.
One day at a time!

[Red Cabbage]

I think keeping up the support you have started is very important. After a while, when the child 'seems' to be doing well, the family are still uprooted and still need to talk.

Wishing your niece well and hoping there is no genetic link for her siblings. She has good odds at 50/50, keep on hoping.

[Gum Boots]

OP - How is your neice going today?