Australian 2yo Intramedullary cervical Spinal Cord Tumor

[paul]

Hi,

1 year ago our son was diagnosed with an Intramedullary cervical Spinal Cord Glioma/Astrocytoma Tumor. 
We have not carried out a biopsy and thus do not know the exact Tumor type. 
After a year of scans the last one showed a possible growth. Our son is nearly two now and only has very slight loss off function in his left arm. 
We have a great team of specialists looking after or sons case in Australia but we feel that due to the lack of knowledge/rareness we need to travel to gain more specialist opinions. 
We are meeting again with the specialists in Sydney (we are in Darwin) next week and then traveling to the USA to meet with numerous other specialists including Dr Jallo. We are traveling to seek worldwide opinions before making any major decisions. 

Are there other parents on here in similar situations that would like to share with us your knowledge and experiences especially in Australia. 

Thanks for reading. 
Paul

[gordy1]

Hi Paul,

I've just replied to your PM.

For other's benefit, I think you are taking exactly the right approach for your son.

Good luck in Sydney and the US.

Gordon

[hope]

Hi Paul , I have a 5 months huge cervical tumor. She cannot move both of her arms when admitted to ICU at one month.
We are really thinking what specialist we should bring her to too. It's great you can make the decision to go to US. it's just a very difficult decision for us now . Would you mind to share your experience after the trip. Thanks

[paul]

Update. Nearly two years this march since our brave boy was treated by Dr Jallo.
80% of the Timor was removed and the remainder has been stable over multiple scans.
Post surgery Our son had loss of function in his left shoulder. Over time this has improved a little. He has full function of his hand and forearm. He sweats a lot compared to his brother but otherwise has no other remaining symptoms. He knows no other life and keeps up with his older brother all day and will for the rest of his life. He swims, runs and rides his bike.
The best thing we ever did was travel to the USA and get multiple opinions and meet Dr Jallo in person. He is one of the most Kind, gentle, intelligent medical professionals we have ever met.
Wherever you are in the world feeling lonely and by yourselves trying to deal with a SCT remember help is only a flight away.
Thanks.
Henry's proud Dad.
Paul.

[gordy1]

Hi Paul,

That's great news that all has gone well, and that you made the right decision(s).

I completely agree with your views on travel and, whilst we didn't meet Dr Jallo, we did have very positive experiences at Johns Hopkins too.

May the scans remain stable forever!

Cheers.