Brain Tumour Survivor

[Mary]

Pleased to hear he’s making good progress. It’s understandable that he’s a bit grumpy or frustrated as he wants to get back to normal faster than he’s capable of doing even though he’s progressing faster than the Doc thought he would and he also had heaps more attention during those few months so he's probably got a bit used to that too.

The main thing was removing the bulk of that tumour as safely as possible as that would continue to be problematic against his brain stem. Doing it before it turned malignant (or a higher grade) was also a good move so you don't have that as an on-going worry. Good Teo says yearly MRIs and 3 monthly does sound a bit excessive given there hardly anything left (if at all). Maybe make the MRI's 6 monthly for the next 12 months and that might keep both the oncologist and neurosurgeon's happy? You'll also have the peace of mind it's not re-growing so that might be a happy middle of the road solution? Up to you really.

As far as children’s brains are concerned they’re a lot more malleable than adults so he’ll probably make a full recovery in time. While the following doesn’t relate specifically to surgery on brain tumours, but neurosurgery and brain injury for children vs adults. So thankfully for your little boy his brain is still developing and will recover fully no doubt.

Neurology Specialty Centers
http://www.childrensnyp.org/mschony/neurology-specialty-centers.html
....Infants and children's brains are more plastic than an adult's. In other words, an injury or operation that might lead to significant dysfunction in a adult generally has a better outcome in children, where uninvolved areas of the brain have the capacity to take over some functions of the injured region.

Stroke: Hope Through Research
http://www.ninds.nih.gov/disorders/stroke/detail_stroke.htm
Most children who experience a stroke will do better than most adults after treatment and rehabilitation. This is due in part to the immature brain's great plasticity, the ability to adapt to deficits and injury. Children who experience seizures along with stroke do not recover as well as children who do not have seizures. Some children may experience residual hemiplegia, though most will eventually learn how to walk.

[stacy]

Hi Sandra and Daniel,
I so pleased Daniel is doing so well, and walking with support is fantastic news Im so happy for you all, remember you cant keep a 5 year old still for to long!!!!

Best wishes for speedy recovery Stacy

[ksplat]

Dear Sandra
Thanks for sharing this wonderful update with us. I am so thrilled to hear about Daniel's positive progress & small steps forward. What a blessing & God Bless Charlie Teo.
God Bless Daniel & my prayers & thoughts are with you. I'll bet you are looking forward to Christmas this year with a whole new & positive outlook & a very bright future for your young Son.
Cheers, Angie.

[sunny]

Hello Mumoftwo,

I am new to this site and am interested to know how Daniel is going now.

My son has been diagnosed with a tumour that sounds to be similar to his and would just like to see how his is going after all he has been through.

Regards

Sunny

[gtm427]

Hi mumoftwo,

what a journey!!!

isn't it amazing when you think of all the aprehension you feel when faced with such life and death situations. now it is all done, the decisions you made were the absolute right ones, I have loss of movement/weakness in my left side from 'radical' surgery - but given the alternative I am so glad I made the decision that I did.

how is Daniel doing? I can only inagine how you must have felt having to make such a huge decision - when I was diagnosed in 2005 with grade II astrocytoma one of my first thoughts after the shock was "thank god this is not happening to one of my kids - I couldn't cope with that"

you are such an inspiration to all of us

what a lucky boy Daniel is to have such a brave mum

thinking of you all
stay positive - I found that laughing at anything and everything helps

Toni

[sunny]

I have been following your story with interest as I have a child in a similar situation. Could you please let me know how Daniel is going today?

Best wishes.

[sunny]

How is Daniel?

Know you have been doing it tough - keep your chin up!

This was sent to me, forwarded for you information.
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From: hugsnkisses
To: sunny
Posted: Wed Jun 02, 2010 11:26 am
Subject: Danny
Hi Sunny,

So sad to read about your circumstances. We are not that far from where you stand....that is why I have chosen to private message you. Danny's Mum reads the forum and I have to be extremely careful what I say.

My brother is a wonderful father who would give everything he has to make Danny well. He also has the backing of our family who would do anything to help but are never allowed. His Mum, on the other hand, seems, for whatever reason known only to her, more intent on point scoring that tracking down the best treatment for Danny.

Sorry I didn't reply earlier. I haven't looked at this forum for probably 12 months and the notification that I had received a message must have gone to my husband's laptop. The day I looked at the forum was following a long discussion with my brother about Danny's Mum's current antics and, as I knew she reads this forum, I logged on to try to leave a subtle message, hoping to get her thinking in a different direction.

The truth is....Danny's eye has not improved much at all for quite a few months, the specialist up here that she persists with I have personally had a bad experience with (and so have quite a few other people I know). She is well aware of what happened but has stayed with him. Danny seems to have reached the limit of what this guy can do yet his Mum insists on staying with him (even after one operation was relatively unsuccessful, the stitch fell out of his eyelid and he is talking of operating again). On the other hand, there is another specialist here (who my daughter has been under for 16 years - she was told by Danny's doc that she would need "coke bottle" glasses every day all day for the rest of her life but we went for a second opinion, used exercises and drops and now Ash only wears glasses when doing a lot of uni work - could not have had two more different opinions). Yet Danny's Mum persists with the man even after the failed op. My brother has made two appointments with my daughter's eye specialist but Danny's Mum has cancelled both unbeknownst to him. She then made an appointment to see her knowing it was when my brother couldn't come and said that the specialist said basically nothing more could be done. This was the same person who told them six months ago that she thought Danny's sight could return virtually to normal given proper treatment. I don't think she even took him to be honest. My brother is trying to convince her to take Danny to see Dr Tan (a colleague of Charlie Teo who Danny saw just after the op) but I don't know how that will go. Honestly I have never met a person like her. It is almost as if she doesn't want him to get better. I cringe when I read her posts on this forum and how everyone tells her she is so brave and what a wonderful Mum she is. She fought my brother and I tooth and nail not to see Charlie then not to have the op. Danny was booked in to start radiation the very week we saw Charlie. Call it divine intervention or whatever but if he had proceeded with radiation Charlie could not have operated and Danny would be dead. She has put he and us through hell. I could not begin to tell you what has gone on. What I have just said is only the tip of the iceberg. I personally think she needs help. I don't think she has ever come to terms with the death of her other son from a very similar condition. To me that experience would make you all the more determined to find the best outcome for Danny but she is just the opposite. She is more interested in getting freebee outings from the brain injury people (that often she and her daughter go to and not Danny) and was still using a wheelchair for maximum gain even though Danny has not needed one for over 18 months. It disgusts me and I am powerless to do anything and my brother is stressed to the max. He too has started a new relationship and Danny's Mum has even driven around the suburb looking for her house and scribbled messages in lipstick on the rear window of the new girlfriend's car. I don't know about you but that's not normal to me. I worry for Danny in the long term both physically, mentally and emotionally. At least in your case, even though your ex is no help you don't have all this nonsense to deal with. I suppose although it places all the burden of recovery on you it also gives you all the control. You sound like you are doing an amazing job. Michael will recover, I have no doubt, because you are so determined. I really believe you are onto the right thing with exercise and sports. Anything that stimulates corordination and balance. Even if Danny were interested his Mum would not take him and to me that is a crime.

Sorry to vent but I couldn't keep up the lie much longer. What I say in this forum is always true just not always the whole truth and I have to choose my words carefully.

Thanks for listening,

Sue

_________________
Life is precious. You only get one go at it so enjoy each day as if it's your last. No regrets!!



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[sunny]

If the site is here to help Aunties who only have seen their nephew for 3 visits in two years who is there to support a mother all on her own. Why crucify the mother who is doing all the work?

You have been attacking her since the start of this story and two years on you still are. In cloak and dagger style. I simply feel sorry for Mumoftwo because you are not the carer you imply you are. You have been implying Mumoftwo in not a good mother and you are the carer. This is a lie.

If Daniel is truly being neglected and is not being looked after as you keep insisting, lets contact the authorities and investigate not crucify his mother on a forum that should be supporting her.

Provide some evidence to back up your constant put downs of this poor woman or an apology is warranteed. Why are you trying to destroy a mother, who will look after Daniel then?

This is my final post. I am disgusted.

This is the message I am replying to:-

From: hugsnkisses
To: sunny
Posted: Wed Aug 04, 2010 12:16 am
Subject: WHY?
Sunny.


What has changed? What have I done to you? Surely your only intention by publishing this is to cause trouble. Don't worry Sunny I will not degrade this site by replying to you (if that is really you). This site is here to help people like myself and my nephew and for their help I will be eternally grateful. They were instrumental in saving his life. It is not here for people to air their petty grievances and anything said in confidence should stay that way. Having said that, I intend never to post here again. And, Sunny, for a "police officer", you have no discretion. If that is really you, I can only say...you know not what you do.

Obviously Sandra has pulled the wool over your eyes like she does to so many people. She has made you part of her sick game and you have gone along willingly. You should be more professional than that. If you only knew.....

Forward this to her if you like. I have nothing to hide nor do I care what she thinks. I worry for my brother's son not his son's mother...if she can call herself that.

_________________
Life is precious. You only get one go at it so enjoy each day as if it's your last. No regrets!!

[Mary]

It is unfortunate that personal grievances are being aired on this forum and it is not the purpose of the forum. I understand that often matters involving children from broken marriages can impact on all members of the extended family and are highly emotive issues.

As far as "Aunties" are concerned, their concern and passion for their nephews and neices should not be diminished and I know the Aunty in this case made a big difference by seeking information and advice from this forum. As a result, despite the child's mothers reticence at first, all worked out well for Daniel (or at least as well as it could under the circumstances and exceeded the expections of many involved). Had Aunty not intervened in this case, the outcome could have been disastrous for Daniel so she had every right to be proud of the assistance she provided and the direction taken and result etc.

Unfortunately, however, we can't resolve disputes and differences of opinions about other aspects of child care and the forum is not designed for that purpose. That does not mean that people don't care about such matters, it just means that they are better dealt with in other ways and through other channels.

BTW: if someone sends an email to an individual on the forum rather than posting it publicly for all to see, it should stay a personal email and not be posted on the site. That was done in poor taste and should have been handled differently. I am surprised that the last two posts have not been removed by the moderator.