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.