Yay, we are back at home with broadband resurrected after being offline for ?6 weeks (like having a hand cut off...). All Camerons treatment is finished. He has a Gastrostomy tube in his tummy which he had to be fed through for 2 weeks as the radiation burnt his throat so much he couldn't eat - but that should be out in a couple of weeks. Blimmin thing made him start refluxing again so was restarted on losec which I have now stopped using. He's really irritable though so am hoping its not still reflux, we cold turkey'd him off his morphine and I am hoping its that.
Little miss Isobel now 9 weeks also has reflux and is on losec now. After 2 weeks of the perfect baby the sleepless days and continuous crying started along with poor feeding and hiccups and back arching. The ED drs at starship gave us a 'token' dose of zantac to put her on which helped for a while but thankfully my GP here faxed me a script for losec - all much less out of control when you've done it before thankfully.
And boy people really did know what they were talking about when they said its much busier with 2 than 1 child, don't know how you guys with twins do it....So I've gotta fly..
Kylie

Gosh you sound like a brave Mummy! Glad to hear everything is on track so to speak, hope everything gets a little less busy for you.

Gosh what a tough 6 weeks you have had. Hope Cam is good now and the treatment has worked and done what it was supposed to. Bummer about the burning in his throat and return of reflux hope it is shortlived you have enough on your plate with a baby refluxer too!!!.
Hugs to you

It is good to hear your update. Keep in touch.

Glad you're home and things went well.

Sorry my wish for a reflux free baby for you didn't work!

Tracy

Thanks for the update Kylie! Pleased to hear you guys are doing 'alright' although it sounds like a bit of a challenge to see it from this side of the computer screen. When will you find out how the radiation has gone on Cameron? Hope it all was well worth the effort . Bugger about Isobel being a refluxer too. What was up with the people in Auckland not helping out with the diagnoses? You would think they would of been a bit more accommodating. Yay to your gp though, awesome!

Hey Viv
Yeah I guess its been a challenge, but ya know you just don't even think about what you have to do or not do when your in this situation - You just get on and do! (I think its a mums calling in life?!!!)
We won't ever know if its been succesfull. Hearsay from other parents is that if the tumour is going to come back after radiation treatment, there is a 90% chance it will come back in the 1st 3 months then 50% at 6 months then drops to something like 10% at 1yr post treatment. It could come back anytime though. Stats say that he has an 80% chance of surviving as that is what the child cancer survival rate is. The oncologist has agreed though that if he makes it to 10yrs old there is not much chance it will come back because the type of tumour he has is predominant in those aged between 1yr and 10yrs. In saying that he was diagnosed at 9 months after a 6 week delay in diagnosis, so he has been a statistical outlier from the start.
The ED drs at Auckland didn't ever see her performing so to speak - I was jumping on the case early and of course she wasn't ever that bad. (You know going 6 hours without feeding cos of pain and all that). So they were just appeasing me I think with the token dose they gave Isobel. Lucky for us we have the COSM website so I knew she was not being given enough and could go and ask for help elsewhere...
Anyway, must go, I think Cameron has nasty reflux again, we are having big screaming battles getting him to sleep last night and today so I need to get him an early tea and early to bed.
Cheers
Kylie