Well... its a new year now! 2010..... Its going to be a good one! The Bobbinog is cured! His bloods are stable, his AFP has not risen in the last month... stable at 5.1. We are having his broviac removed on thursday - 28th jan... cant wait. He can have a proper splashy bubble bath and then be covered with baby lotion and baby powder... has not used baby powder since June 09. He will smell like a proper baby again.

His tests run from then every 2 months, he has bloods, ultrasound, Xrays and physical examination. They will also monitor his heart and hearing for a while as a standard post chemo thing in case damage occurred.

We monitor for the next 5 years, but probably forever as you never know. I truly hope and pray the tumour stays away and does not recur. They say there's a 95% chance it wont recur and he is cured. Time will tell. Please all pray that it does not recur.

Will keep posting occasionally.

Where do I start??? Been a long time since my last entry. Ok, chemo no 8 went well as we expected. The following week his bloods were fine but afp slightly raised to 18.6 from 8 the previous week which automatically started the stress factory up again. However we know it should be below 23 so it was actually ok and assumed it was due to chemo that it raised, but none the less we were not sure, but other than that all was well.

He is doing very well, weight up to 10kg and he is healthy and happy with no problems.

On monday this week, 4 dec, we came in for bloods again, and of course for chemo no 9!!!

The afp was down to 11.3 again, and red blood cout on 4 and white on 3 and nutrifins just over 1 and platelets on their way down too at 114. So will need to watch him closely now, but we can deal with that as we have before, its a standard chemo thing.

However, the good news that has come out of this chemo, is that his oncologist came to see him yesterday being tuesday, and I asked her why his afp went up and when he would be termed in remission if he wasn't already and she said, his type of cancer does not go in remission.... he either has it or not, and she then advised that in his case he no longer has it. He is CURED!!!

What a shock to hear that. It took a few hours to sink in and not sure that it fully has yet, but our Bobbinog has beat the cancer bug!!! WOW, we are so happy, however still very cautious, as we know how nasty the bug can be, so we will just take it easy and watch him and his bloods anyway for a few years, or maybe the rest of our lives...

Not sure what the procedure is from here on. I know he has bloods and scans regularly, I think its bloods monthly and a scan every 6 months. His oncologist will advise me on 21st dec.... which will be chemo no 10 aka... the last one in the course. Cool big time!!

Will advise how and where to from then.

It is sunday, 22nd November, and Bobbinog is doing well. He has had his broviac fitted into his aorta again on the left side this time, and he is all ready for chemo tomorrow. It is chemo no 8 of 10, so we are almost finished chemo. 2 more after this one, and the last one ends on christmas eve. Then we test his heart, kidneys, hearing etc again to make sure chemo has not caused damage, then we wait..... blood tests weekly I think to monitor AFP. Currently his AFP is on 8.6 which it was monday when we tested, originally it was 498 000, and it should be below 23.5 so well below range at the moment. The AFP is the tumour marker, which in this cancer we luckily have a tumour marker as other cancers only rely on full body scans to pick up tumours, which can miss the small ones.

It has been a busy year, but a good one, as we picked up the tumour and started treatment, which has been quite successfull. Next year will hopefully be a good one too in that the AFP levels stay normal. That is the big stress factor at the moment, the question whether it is gone for good or whether it is going to pop up again. Normally if it comes back it is more aggressive and does not react as well to chemo as it did first time round, but we are hoping it is gone for good, but we will deal with that next year if needs be. Our aim at the moment is to complete the chemo course and have a good christmas and new year. Next year we will deal with next year.

Hi all, as you can see, Bobbinog is doing very well post-op. He is almost back to normal, on 3 meals a day and drinking formula as per the norm. He was supposed to start chemo on Monday, 16 Nov, but it has been postponed as we can only get a docter to fit his broviac on 19 Nov, so chemo will commence on 23 November. He will have 3 sessions, so his last one ends on christmas eve if all goes well. So for now we are just going along with the last treatments. His bloods done on monday were good. His Full Blood count was on 12.1..... WOW, it has not been that in a while. Also his AFP count was on 24, and it should be 23.5 which is put down to lab error and goes as normal. So far so good, but we will watch that one very closely. Not much else really, just trying to get life back to semi normal and balanced nicely, but by the end of the year all will hopefully return to almost normal except for bloods being done and the ct scans. We pray that the cancer is gone for good. All looks promising at the moment, but we need to watch closely which we will definately be doing.....Yes I am paranoid!!!

Will advise how the broviac goes and the next chemo!

Bobbinog, pre-op. Oh so trusting. He never knew what he was in for. We were so nervous before he went into theatre and during the 5.5 hours he was in. He got taken in just after 8am. Mike took him into theatre. At 12.30 his doctor came out to us and told us it had all gone very well and the liver resection was successfull and they were busy stitching him up. We waited patiently for our Bobbinog to come out of theatre.

Post op was a bit stressfull, but we knew he was stable and doing well as he has come out of theatre sucking his dummy and wide awake. He was placed in ICU overnight then moved to high care. There he continued in his mission to get better. He has done very well and we are so proud of him. We were released from hospital on tuesday, with no problems. He is still not eating as he should but we will get there, also he is a bit teary at times, but thats also to be expected as it was a big operation.

At home he is doing well and we are already getting ready for his next chemo. He has bloods coming monday, then we need to send him into theatre again for another broviac to be fitted so he can do chemo the following monday. It is too stressfull to put drips in and he has been through so much already, shame the poor little Bobbinog, but the treatment is nearing the end now.

Well, it is Sunday night already. Missed a day. From being in ICU on friday night and having a very stable night, Bobbinog moved across to high care on Saturday. He continued doing well and on sunday he started with liquid (being water only). He really is tough. However he has had a really tough day today. His pain management meds were not managed, or should I say not given at all. His epidural got a kink in it and blocked, probably when the moved him, so it was not helping for pain. His panado he was given for pain, or was supposed to be given for pain at 11am was not given to him as he was crying, however the nurse signed that he did get it so he spent the day crying and in pain, until about 4pm when I had just had enough and I threw my toys big time and very impressively. Within 30minutes, the anaethetist has come to check his epidural which was when we found out it was blocked. The nurses very quickly gave him meds, his surgeon even came down to check on him, but by then he had settled, as his morphine dose was also upped. However, there is only so much we can take. Mike stays at the hospital with him at night as there is nowhere for us to sleep. All the parents at the hospital get given a mattress to sleep on at night except us. When my kid is screaming in pain, he gets ignored. We are going to arrange transfer to Panorama in the morning. I already have it in motion, we are just waiting for the drain from his cut to be removed. The surgeon told the nurses to rmove it at 5pm, not surprisingly it still has not been removed. The care he is getting is definately not up to scratch as to what I would expect. As he is stable, it should not be a problem to move him, however there are still many days left before we can consider bringing him home as he is only drinking water then he will go onto juice tomorrow and then onto formula the next day, but as he has no gall bladder now and they dont want to stress his liver he needs to go onto low fat food, so not sure which formula he will go on, but his oncologist will take over and she can advise us. So we have had a tough weekend but we dont mind as bobbinog is doing well, and we know he is going to do even better everyday, especially when we move him and he gets proper care and attention from the medical staff. Will advise tomorrow how he is doing.

Well, I am now sitting next to Bobbinog in ICU. We booked in at Red Cross yesterday afternoon. Then proceeded to wait for 4 hours for a bed for him. When we finally got one, we were officially checked in and ready for his liver resection on Friday morning 8am which was this morning. Scary big time.

At 7h45 they came to fetch him to go to theatre. We went down and waited. He was taken in just after 8. Then the real stress began as the operation was in progress. It was a really difficult morning for us, but at 12h30 when his doctor came out to tell us that it went very well and was successful with only 1 complication being putting in the catheter, we burst into tears. What an amazing feeling knowing all had gone well and he was ok.

They were still busy stitching him up in theatre. We waited patiently to see him. At about 13h30 he was wheeled out of surgery into ICU. We were expecting to see lots of machines, and to see him on a breathing machine etc, but what we saw was our beautiful little boy, awake and alert and breathing on his own. WOW. He truly is a tough little bugger.

In ICU he is being monitored for everything. He is on morphine and an epidural drip, but still ratty and sore occassionally. But then he has every right to be. He has had major surgery and he has a large T cut on his tummy. He also cannot eat anything until sunday, as firstly they had to move his tummy out the way to get to the liver, so it needs to settle, and also, the doctor does not want anything in his tummy as when it expands it will rub on the liver and he wants the liver to settle too.

However he is doing very well. He is stable at the moment and has been all day, and we pray that it stays that way.

Me and Mike are now going to do bedside shifts, so we can rest in between while the other is on Bobbinog watch. I am here at the moment and have been since 7pm. Dad is coming to do his shift at 2am. We will probably do 6 - 8 hr shifts per time so the other can get 2/3 hrs sleep in between. Going to be a tough weekend, but it is worth it big time. Our Bobbinog needs us and we will be there for him, if only for emotional support (both for him and us).

Well he is nicely settled and fast asleep at the moment. Will advise how we go.

Thank you everyone who is following this and praying for him, we really appreciated your support.