**UPDATED 4th October 2008** Wednesday 1st October 2008 - Heaps to update now!! Will start with Sydney:   Sydney was probably a little easier than we expected. We were still very nervous as to what the scans would show but I think deep down we believed that it would be ok. Tuesday was pretty straight forward - MIBG injection at 2pm then a hearing test at 3pm. As expected, the hearing test showed that Tyler has high frequency hearing loss caused by one of the chemo drugs. This is the 3rd test he's had & they all show the same thing. Basically it's not too much of a problem at the moment but it will have to be monitored once he starts school. We also need to keep an eye on his speech as there are some sounds he can't pronounce too well as he may not be hearing them properly. Again, not a real problem to us especially in the scheme of things & we've noticed that if we take the time to teach him the proper pronunciation he's fine (well he tries really hard anyway). While waiting for Tyler to finish his hearing test I met a really nice person who is now following Tyler's progress along with her family. Hi Donna, it was great to meet you & thanks for all your prayers & kind words!   Wednesday Tyler had the MIBG scan. He seemed to be rather excited about being in Sydney for some reason & we woke at around 7am to find him fully dressed, his bed made & he was all smiles & ready to go!! This is the scan that will highlight areas of active neuroblastoma. He gets sedated for this which isn't too much fun for him or us as he fights it really hard & becomes very hard to handle until they give him the injection that finally puts him to sleep. Even though he gets given the minimal dose, we are always there for at least 3 hours after the scan waiting for him to wake up!! We asked one of the doctors if she would call to give us preliminary results but she didn't end up calling so that put all sorts of ideas in our heads as to what could be wrong & why she hadn't called. It's amazing what your imagination can do!!   That night we went out for an early birthday dinner with Kerrie, Kev, half their family & Brian & Jill (long time family friends). Tyler had a great time running a muck with his cousins!! It was good to be out & about rather than sitting at ronny macs worrying.   Thursday was the CT scan. We decided that we would see how Tyler would go without having the general anesthetic. It's only given to him to make sure he stays still but given the fact that the scan only goes for approx 30 mins we thought he would be fine. Olivia Lambert has been doing it without GA for quite some time without a problem so that also helped our decision. Tyler was great & did everything he was told to. It saved us SO much time doing it that way as it cut out recovery, waiting for him to wake up, eat/ drink etc. We were very relieved when Toby (Tyler's doctor) came in to see him & advised that there were no results through yet. Again we had been stressing & 'imagining' things because they had mentioned that they were scanning neck, chest, abdo & pelvis & they had never done the neck before so of course we were thinking that something was showing up in the neck. Thankfully Toby put our minds at rest by saying that he didn't expect there to be a problem with the scans as he had not been notified of anything & normally if something is wrong they notify the doc straight away. We felt much better about things as we were heading home that afternoon.   Friday 19th Sept was Tyler's 4th birthday. Every occasion now is such a milestone & very special to us. We got him one of the big round trampolines with the enclosure & had stayed up till around 3am to set it up. He was a bit hard to get to bed as he was pretty excited about his birthday so we got a late start on it! He was very excited when he discovered it so that made it all worth it!! We decided to go out to lunch & take him to a place here called Cockington Green which is like a little miniature village - it's really pretty with beautiful gardens. We gave Ash the afternoon off school so she could be with us & we all had a really good day. Terry & I were VERY exhausted though after the travelling, stress of the scans & the late night. It was a really special day made even more special when Toby called to say that the results were good showing only a small amount of MIBG in the liver (which has always been there & MIBG will always highlight in the liver anyway) & no uptake anywhere else in the body which means the adrenal gland area (site of relapse) is no longer highlighting. They are classing the CT scan as stable with some persisting abnormalities in the liver & a small soft tissue mass with some calcification in the para-aortic region (adrenal area). They also believe there to be some improvement in these scans when compared to the scans done 3 months ago. We don't have the urine catecholamine results back yet. Overall, we are really happy with these results. We have decided at this point not to do any tests on Hayden as it is VERY UNLIKELY that he could have neuroblastoma but instead we'll just keep a very close eye on him & monitor anything that worries us.   Saturday & Sunday the birthday celebrations continued with a visit to the pool Saturday with his friend Charlotte (from playgroup/ swimming lessons) & her big sister Hannah & then a family bbq at home Sunday also celebrating cousin Jaime's 18th birthday. We did have  special guest at the bbq - Anne who is Tyler's Camp Quality companion for his 1st ever camp 29th Sept - 3rd Oct. Anne also taught Ash in primary school & lives on our road.   Weekend just gone (26th/ 27th), Tyler, Hayden & I went on a road trip to stay with my friend Klara & her family who live in Temora. We had a great time. Klara & Shawn have 2 girls, Makayla just turned 3 & Chelsea, 5 months. Tyler & Makayla got on so well & were really cute together. We went to the Temora show on the Saturday afternoon where they had fun on a big jumping castle & I took Tyler on the Cha Cha! He was a little under the height (3cm or so) & I didn't think it would matter too much but that thing really throws you about & I had the tightest hold on him my arms were aching!! His legs were getting thrown around everywhere but we still had fun!! I was VERY relieved though when it finally stopped!! Tez didn't come along as he wanted to get some things done around home & Ash had a 'girlie' weekend with Rochelle.   Monday Tyler went on his first ever camp. It's also the first time he's been away from us apart from the odd night at mum & dads. We'd been talking to him about it heaps & explaining that we wouldn't be there but Anne would take really good care of him & that he was going to have SO much fun. However, once we got there & Anne took him on the bus to see where they were sitting, the tears started & they kept going for at least 30-40 mins till the bus finally left! I was cuddling him & trying to comfort him all the while trying to hold back the tears myself - I did really well & didn't let any out but it was still so upsetting seeing him like that. I wasn't worried at all about him not being ok as I feel really good about Anne looking after him, I just hated seeing him so sad. Anne has been wonderful though & has sent photos & messages to reassure us that he's having a great time. He stopped crying about 5 mins after leaving little bugger!!   Anyway, that's about all!! Time to go attend to my other boy for now. Hayden is growing up so fast & started smiling while we were in Sydney. It's very quiet here without Tyler at the moment but I can't say it's a great thing as it makes me think even more about the McKeowns & Lilla's family & how they must be coping without Dylan & Kahlilla (also, many other families who have lost their child). Our precious little boy will be home Friday with lots of exciting things to tell us about his camp. We are SO thankful for that.   Saturday 4th October 2008 - Tyler had a great time & camp but was VERY excited to be home. He jumped off the bus & ran to me for a very brief moment before discovering that daddy was also there so I was pretty much dumped as it was 'daddy, daddy'!! Hence the smile in the photo!!   Anne said he was very well behaved & also won the hearts of some of the other companions. He won a Bravery award because he stopped crying not long after they left. He did some rock climbing, played table tennis, a 5 second swim as the water was too cold, dressed up a cowboy, went to the Wagga Show, did some kayaking, caught a 'huge' yabbie out fishing but dropped it back into the water & I think he talked everyones ear off!! He's talked ours off since he's been home anyway! I don't think we'll have a problem with him leaving for the next camp!   I think he had a good time!!