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.

Yip, we still in hospital...But at least Bobbinog is doing well. His temperature is still down, and he is off the drip and holding his own no problem. Tomorrow is another Big day, as we transfer across to Red Cross Hospital at 3pm. His liver resection is booked for friday. Nerves jittering again and I have to keep reminding myself not to stress and that its all going to be successful with no complications as he is a healthy little chap. But nevertheless, I am still nervous as its such a big op for such a little guy. But everyone is praying for him all around the world, and I can only say thank you, to everyone for the support they have shown and are showing. He is doing great, and you would never say he is a chemo kid with a liver tumour. I will post again when I get a chance as tomorrow will be busy and friday only Bobbinog will be important to me, everything else will take a distant second place. Wish him luck, hold thumbs, toes and everything else and pray for a successful opand a speady recovery with no complications please. Thanks all.

Bobbinog is still in hospital getting iv antibiotics, however, his fever has broken and is on 36.4 Yay!!! He will stay in until his fever stays low for 48 hours. Which puts us to Thursday afternoon. Also, looks like his doctors are clearing friday for him to do the op, which means we book out of Panorama and straight into Red Cross for the op the next day, but its not confirmed yet. But at least I am glad the fever has broken. Dad is doing the Bobbinog shift at the hospital tonight so I have the night off. Cool. Will advise more as we go.

Oh well, we almost made it, almost had a night at home. Its 2.30 am, and we have just checked into the hospital again with fever. Bobbinog's temperature is spiking again. So I guess its back onto antibiotics and the liver resection will now obviously be postponed again. Will advise when I know. But for now, we need to sort out why Bobbinogs temperature keeps spiking.

Bobbinog has beat the bug. His blood culture came back negative, on his arm test and his broviac test. Cool. We have checked out of hospital. He is still on anti biotics for an additional 24 hours as a precaution. Tomorrow is a big day again, as we do take 2 on booking into Red Cross Childrens hospital for his liver resection. The Liver Resection is booked for wednesday morning, assuming all goes well with the tests they will do. Nervous again big time. However, we have been told not to worry as he is the perfect candidate for the op as he is so healthy, and should the surgeons have a choice of candidate for the op, they would pick him. That is very re-assuring, also, we have very good doctors in theatre with him. Apparently there is a team of 7 professors. His main surgeon, who is the liver specialist, is rated in the top 5 in the world, and the rest of the team is also internationally known. Can only hope and pray that all goes well and according to plan, as this is the only option available to us to remove the cancer. But he has done so well up to now, I am sure he will get through this without complications. We have been advised that he will have every possible machine hooked up to him when he comes out of theatre, including being on a ventilator. This will be for his safety as they will monitor everything in ICU. The ventilator will be on as a precaution as because the op is 4 hours long, he could get liquid on his lungs, and if he is not on a ventilator it could cause complications, so it will be on to drain the liquid overnight probably. He will also have blood pressure, heart, kidney etc machines. They have told us to go to ICU while he is in theatre to see what the other children have attached, so we do not get a fright when we see him. That is very scary, but at the same time re-assuring, as we know they will be watching everything. However the knot in my stomache is still there and will get worse as the time draws closer. Going to be a difficult few days, but he is a strong little bugger and he has come this far already, with no major problems, this is the major hurdle now, then we only have 3 more chemo sessions left and then when pray that the cancer is gone and never comes back. I will advise on how the resection goes. Please pray it is successfull and that there are no complications. Thanks for following this blog and supporting The Bobbinog in his fight. He is Winning definately, and after wednesday, the cancer will be in a bottle in the lab, and Bobbinog will recover from surgery and have his future ahead of him... cancer free. Will advise how the operation goes.

MRSA

Yip, we still in hospital. Been in since thursday. The MRSA bacteria started showing itself on friday night. Bobbinog's temperature went up to 39 at one stage, but good old reliable panado curbed it down again. It has been stable at 36/37 since saturday morning. The second blood culture came back positive for mrsa on saturday morning, so they decided to remove the broviac, as the bacteria normally hides in the cap and covers itself with a protective sheath so the anti-biotics cannot kill it. So at 6pm on saturday, Bobbinog was wheeled into theatre. He was out again 30 minutes later as its a quick procedure. They then also put a drip into his ankle as he need an iv line for his meds. He had a good night saturday night. Sunday has been tough on him. As he no longer has a broviac, his blood tests are done the normal way, through a needle in the arm..... assuming they find a vein. He has holes in both wrists and both ankles and on top of all that, he yanked his drip out too. I miss the broviac already. It was magic as all blood tests and medication went through it. But as it was a direct line into his heart and it may have been contaminated, it had to go. When they do his liver resection, they will install a new broviac for future bloods and chemo's at the same time, so we just need to get through till then.
We got the culture back on the broviac tip, and it was negative. So either the bacteria is in his blood and not the broviac, or they have zapped the bug. Will know tomorrow when his blood culture from today comes back. The broviac had to go anyway as it was an external device and it was too risky keeping it in as it could have caused major problems.
However, health wise, you would not say Bobbinog was sick, as he has been laughing and talking all day today. His temperature is still down and his appetite is normal. However he is still on antibiotics until we get negative cultures, so another night in hospital. Will know tomorrow.

We got the results of Bobbinog's Bacterial Infection today. He has MRSA. (Methicillin-resistant Staphylococcus Aureus). We are told it is known as the MRSA Superbug. It is multiple drug resistant. It is normally this bacteria which causes septasemia. Not good not. Due to his compromised immune system it is very risky for him. We are also told it causes more deaths than Aids each year. So at the moment we are quite a bit stressed. However, the good side of this is that we may have caught it early. He has not shown any symptoms, and he is still happy and completely healthy. Not sure if the bug is in his blood stream or in the broviac. They have started him on the strongest available anti-biotics. They are talking about removing the broviac, as it can cause major problems for him and septasemia, but will know more as we go. They need to do more tests and cultures. But as its still under control, hopefully the drugs will zap it. Will know more as we go. Hold thumbs and pray we beat this.

We were supposed to check into Red Cross today, for Bobbinog's liver resection tomorrow, but while at Red Cross, one of his blood tests came back. Not good but very good. His blood culture for bacteria was positive, so all brakes were put on. They cannot possibly operate on him if there is a bacterial infection somewhere in his body. So we have been sent back to Panorama for intravenous anti-biotics and so that they can monitor him. We have however been given another operation date being 28th October, wednesday. Lets hope all is cleared by then.

However, the good thing about going to Red Cross today, is that we met Professor Millar. And some of the other Doctors from the team. We were given a basic rundown of what they were going to do and what we can expect.

Basically, they are removing the enire left lobe of his liver as the tumour is in the middle of it. Also, they are removing his gall bladder too as they need to cut through it to get to the liver, and basically its not needed anyway. I was very worried about the bleeding of the liver when they cut on it, but we were also told that the blade they use to cut quarterizes as it cuts so there should not be much blood loss there, which is a relief at least. The op is about 4 hours long.

But thats next weeks worries again..... Got the weekend off. Thats if we get out of this hospital by the weekend anyway. But baby is not sick and this is just a precaution, so hopefully we will be out here by tomorrow night. Will let you know.

Ok, we have an operation date. We are booking into Red Cross on thursday afternoon, the liver resection is on friday, 23/10/09, he will be in icu friday night and thats all I can tell you for now. We will probably meet with the surgeon on thursday and then we will know more. Will advise when I do.

Well, still no definate news.... Saw his oncologist on friday. She said his bloods are low, so need to re-do bloods on monday again. If they are fine, then she will forward all onto the surgeon, so arrangements for the operation can be made. So looks like the op will go ahead this week. We have no info on the op, the process or anything, besides what I have googled. Hopefully the surgeon will make contact and meet with us before the op to explain everything, but once he has made contact and set a date, I am sure he will. Regarding our options on this, we dont actually have any..... the tumour must be removed, if not it will just grow again and we will be back where we started, only next time we don't know whether the chemo will work. So, even though the tumour seems to have died, it is still there and must be removed. Thats the safest option and then we know its gone.

He is happy and healthy and a chubby little bugger who is really tough. He should cope ok during and after the op.

I will advise his operation date as soon as I get one.

Sorry, Haven't posted results till now, but been hectic. While I was at the ct scan, my laptop was stolen, so had to change all my access codes and passwords etc, but almost back to normal now. As for the scan..... yip, tumour is still there, it has not made a duck as we had hoped it would. This is what the report says:
There is a well circumscribed hypodense mass lesions involving the entire 3rd segment of the left liver lobe as well as the inferior aspect of segment 2. The lesion demonstrates central dense calcification and mild enhancement is seen in the portovenous phase. There is no infiltration of the parahepatic structures, portal or hepatic veins. The mass measures 5.14 x 4.53 x 3.10cm. There is also no evidence of metastatic disease in the lungs or surrounding bone. And all his other organs appear normal.
So basically what I understand is that the tumour is still there and a bit big still, but it sounds like it is in the process of dying off which I understand is what the calcification is. But, what I am still trying to find out is the comment of no infiltration of the parahepatic structure. To me that sounds as if the tumour is not inside the liver but on the outside, although they say it takes up the entire 3rd segment? A bit confusing at the mo. However, luckily his oncologist is back from her trip tomorrow so I should get more clarity. The operation was booked for either 14th or 21st October. Both dates were on hold for him. But due to the bloods done today, I dont think it will be this week, as his bloods are low. His red is on 5, white on 3. nutrifils are only 0.51, however, his platelets are up, they should normally be between 100 and 420, his are on 564, which I am told is good as they help for blood clotting, which he will need when they do the liver op, as the liver tends to bleed alot. So at the moment we are waiting for his oncologist to advise us on whats happening next, which she will more than likely do tomorrow. Will advise then.
And as for his alpha feto protein..... last week is was on 18.8, this week it is stable at 17.3......... Wow hey? Looks like its all under control. A drop from 500 000 to 17 in only 7 chemo's is fantastic. The AFP is our current and future tumour marker. At the moment we test it every week and will continue to do so even after his chemo is finished for the first few months so we can pick up a change early, However, as his AFP stays constant then it becomes monthly etc for at least the next 5 years and probably after that too. OK, will advise more tomorrow.

Its friday morning..... Big day today. Bobbinog had his pre-op ct scan at 6pm last night. Because it was so late, we could not get the results on the tumour, so we will get them at 9am this morning. Scary and exciting. We know the AFP has reduced to within normal ranges now for his age. It should be below 23.5 and his is on 18.8. We know the tumour has shrunken dramtically, but the question is what is the size now??? Is it actually still there, or has it gone??? Now that would be wonderful if it has gone as then no need for the surgery as where would they cut and what would they remove??? The last ultrasound we had was 5 weeks ago, and the tumour was 3 x 5cm which was still a bit big but much smaller than the original size of 12 x 9cm. It dropped to 1/3 of its size after the initial 8 weeks chemo, how much has it dropped by after 5 more weeks is the question? But chances that it is totally gone are very remote apparently, but not impossible. As the tumour cannot be felt anymore and the liver is not enlarged, we know the tumour is at least pretty small which is good for surgery. I am guessing its about a cm, but secretly hoping its gone.....I suppose I need to be patient for another 4 hours...not easy. Should it be there, then surgery will go ahead for 21st October and he will have 3 more chemo's after that. Should it not be there, I am guessing he would need a course of radiation and his chemo will be extended aswel. Who knows...... Will advise later.

We're in hospital. 7th chemo, last one before operation. Bloods yesterday were all good. The week off replenished his count so he did not need a blood or platelet transfusion. We've been pretty lucky that his bloods rectify so quickly. Also, his AFP count is down. For a baby up to 12 months, it should be below 23.5, Bobbinog's is now on 18.8, so its now within range...not half a million anymore like it was in the beginning. We will be in hospital this week until thursday. Then coming monday they do his bloods again and a ct scan of his lungs and abdomen to pin point exactly where the tumour is for its removal. At the moment all we know is that its on the left lobe of the liver, but we do not know if there are any veins or arteries etc involved, but the scan should give us clarity on all those details, so we know how difficult the removal will be. Apparently an op to remove a tumour on the liver can take up to 8 hours if its very involved. Also read that the lobes of the liver can shut down. I think thats why they dont like cutting on both lobes. With baby, his tumour's on the left lobe and should it shut down, then the right lobe, which is the big one, should take over the function of the left lobe til it has recovered. Also, the liver is the only organ that can repair itself. You can cut away 75% of it and it will regrow to almost the same size as it was. So all sounds good. Am hoping that they remove the tumour and get it all out so the tumour does not grow again, and that there are no liver complications like bleeding or it shutting down. But that we will only know then. For now we will try to keep him healthy and happy and keep his fighting spirit. He is doing very well so far.

Well, Its thursday now and no chemo this week.....Yay!! Oncologist said to give this week a rest so that Bobbinog's bloods can recover and we will run bloods on monday again, and if all ok then we start the 7th chemo then, being the 5th Oct. He is supposed to have his op on the 14th, so it may be a bit close and the op may be moved to the 21st. We have both days pencilled in, but I think 21st will be better as he can recover from chemo and get his blood up again. Time will tell. Mike arrives on 13th, can't wait. All the other kids more or less understand baby's "condition", in that he has an "oegie" in his tummy and only the docter at the hospital can give him special medicine to make it better, which explains the broviac in his chest. But I don't think Miki and Stasha really care, being 2, but Tommy does being 4. He is just worried over the "eina" on baby's chest, which is the broviac which is covered. On the whole they more or less understand when I go to the hospital. Things have settled nicely into a hectic routine, but its ok as the less time there is to dwell on thoughts and what ifs then the better all round. But the good thing is that baby is still doing well. He is healthy, happy, picking up weight and growing. If there are any long term chemo effects, we will deal with them as we notice them, but at the moment we dont see any. Anyways, will blog again probably next week when we do bloods and more than likely chemo. Thanks all for your interest and your prayers. Greatly appreciated.

Well, its Monday again, which is "Chemo" Day, which is what every second monday is. Took baby for his blood tests this morning, and just got his count back. His AFP is down to 30 now, but all his other bloods are down too unfortunately. His white cells are on 5, red on 3.3 and platelets down to only 48......Chemo Cancelled for today!!! Will re-run the blood tests on Wednesday and if they ok then, then he will go in for chemo from wed to sat. Taking it a bit close to his op though, as that is wed 2 weeks time and his bloods need to have recovered in time for that. But I suppose rather safer than sorry. Now we need to watch him closely as with low platelets he could bleed out. Any bump could bruise and bleed internally, and a bump on his head, however minor, could also bleed. So will watch him like a hawk now, not that its any different to other days then. Will let you know how it goes and what his bloods are wed.

Monday is almost over. Bobbinog had his Blood Tests done this morning and his Alpha Feto Protein. His bloods are all ok, and his AFP has dropped some more. Last week it was 52.3 and today its at 38.9. Cool or what. Even though its dropping slowly now, its still dropping. I think its the stubborn cancer cells trying to hold on, but we are winning as the count is still dropping.

Down to 3 weeks to go then he has his op. Thats just scary. I am very nervous, but he has to have the tumour removed or it will just grow again, so I'll just hope and pray it is successful and that all the cancer is removed so we don't have a re-run.

Its basically a normal week for us now till his next chemo coming monday. School for the other kids and work for me.

Will post again when something comes to mind.

We are home again, getting back to normal life. Bobbinog is slightly off, but thats due to the Doxirubicin, which is the orange chemo. He had a drip running for 48 hours. He is normally a bit off the day after as he can't get the anti nausea medicine at home as there is nothing for his age group in liquid or tablet form available. In the hospital they inject Zofran, which is anti nausea meds, in every 8 hours. But its ok, he only battles for a day then he is fine. We just watch and make sure his food intake is good. Well life pretty much goes back to normal or as close to it as possible now. I have work, the other 4 kids have school, Dad's working away, so he continues as normal too. 3 months ago we would never have thought this to be our new way of life, but things change over night as we have seen. Cancer is now a part of us forever. I am really a paranoid mom now. I check all the kids tummy's for lumps now. After baby has the tumour removed and finishes off his chemo, the blood tests will continue for 5 years. If he is clear then we will still keep checking him as he has the cancer gene so he has a greater chance to develop cancer again later. He will be testing for the rest of his life and may even pass the gene on to his kids and grand kids..... But not to get morbid... at least we know, are aware and can deal with it one day at a time.... Today... Tomorrow is tomorrow.

I can't wait to get his new AFP count on Monday when he does his next blood count. Monday past it was on 52 and it should be on 7.3, but it was originally on 498 000, so we have come a long way. Its amazing how excited you can get over a blood test. As the tumour shrinks, the count drops, so every lower count is exciting and a great relief that the chemo is working still. In the beginning we weren't sure it would. Being a baby, they did not know. There has been a few kids where the chemo has not helped, so we were scared when we started. But so far the chemo is working fantastically. There are other chemo kids in the hospital, and they have amazing results too. I think Bobbinogs advantage though is his age. Being only 6 months, his cells divide and grow much faster, so the cells that the chemo kills, his body replaces quickly which is why he is handling the chemo so well.

Anyway, off to work now, will blog again when there is any news.

YAY big time..... Its wednesday, going on 5pm. We have been in hospital with Bobbinogs treatment since monday morning, but.... Its home time now. Chemo treatment number 6 is over. He is a bit ratty at the moment, but that could be the chemo, or him being tired, but I think he also wants out of here. Now we go home and watch him basically. As the chemo destroys his bloods, we need to keep an eye on his blood counts, that is why he has a full blood count every monday. We need to keep him away from germs, ie colds, flu or other contageous bugs. If his temperature goes above 38 degrees he needs to go back to hospital as it can point to an infection, which he has little immunity to fight. But he's a strong little guy and has been holding his own so far. We are packing and on our way. Will post more info as we go or as I think of things to post.

I am a happy little chappy

My son's story

Hi there, My son Justin, commonly known as "The Bobbinog" was born on 18th March 2009, a healthy baby boy weighing 2.89kg and measuring 42cm in length. He grew steadily as most babies do, with no problems health-wise except for the occasional reflux and a hard tummy which we presumed was due to the reflux problem he was on medication for.

However, we soon found there was a problem, a huge one at that.

At a mere 14 weeks old (3 and a half months), I took him to the doctor, as his tummy was very hard and swollen, and had been like that for a few weeks, but it was getting bigger and harder and looked like it could burst.

Shock..Horror..... He was diagnosed with a tumour of sorts in his abdomen on 25th June 2009. But more than that they could not say as they did not know. He had a ct scan done which confirmed the tumour. It could not be missed as it was the size of an ostrich egg. 12 x 9 cm. We did not know what kind of tumour, where it was coming from, or whether it was malignant or benign. Thats when all the tests began. (above left is the ct scan of the tumour),

After numerous blood tests, we had a fine needle aspiration done to check whether it was malignant or benign. It came back as definately being Malignant,and the blood tests were pointing to a liver tumour, so we did the Alpha Feto Protein Test, which measures the AFP level. A normal AFP level for a 4 month baby would be 7.3.......His was a whopping 498 000. So it was confirmed to be a Liver Tumour. A great big one at that. The medical term given was a Hepatoblastoma. The question was where to from here???

Its a scary situation to find yourself in, as you have no idea what is coming next. Everyone associates cancer with death. But we moved forward and found this not to be true.

We were new at this and knew very little about cancer and chemo and hepatoblastoma's, but we very quickly learned the basics. Our oncologist advised us that a hepatoblastoma is a good tumour (if cancer can be good). It normally remains confined and does not often spread, which we were grateful for. Our son's tumour had infact not spread to his lungs or anywhere else but was still limited to only the liver.


He was prescribed 10 chemo sessions. First there would be 4 to 7 chemo sessions to reduce the tumour size so it could be surgically removed, thereafter the last 3 chemo's to kill off any cancer cells that were left. His chemo treatments would be every 2nd monday, and he would have blood tests every monday to check his blood counts and also to follow the AFP in his blood to check whether it was reducing.


We then started the chemotherapy treatment on the 6th July 2009. He was fitted with a drip into his tiny little ankle, which is where the chemo went in as they could not find better veins elsewhere. First he had a 12 hour pre-hydration drip, then 24 hrs chemo, then 24 hrs post-hydration. He handled the chemo very well for an almost 4 month baby. We had no nausea, no vomiting, and basically no problems. He remained happy and healthy.


After his chemo treatment, he went into theatre and had a Broviac fitted, for future chemo's. A Broviac is a drip, or direct line which is fitted into his chest, it goes into the aorta. However, the Broviac is fitted and stays in the chest as long as possible, for future chemo's and blood tests etc it is wonderful as no more holes need to be made in him. The bad side of the Broviac is that it cannot get wet and it must be kept clean and sterile at all times as it can cause infection. But we can live with that as he has no pain during blood tests and no more battling to find veins for chemo drips etc to be put in. We then went home. His first chemo had run from the monday to the thursday and we needed time out from hospitals to absorb it all. It had gone very well with no complications at all which we were happy about.

Finally at home we could absorb the previous 2 weeks, from finding out about the tumour to the first treatment. It is quite scary on those first few days. You have so many questions and no one wants to give you answers. I spent hours on the internet researching hepatoblastoma's and liver cancer, and chemotherapy and anything I could find linked to it. Everybody responds differently to chemo and all bodies and tumours are different, so therefore doctors were wary to give us too much information in case the chemo did not work and the tumour got bigger instead of smaller. The idea was to shrink the tumour so it could be removed. The tumour marker being the Alfa Feto Protein either increases or decreases. The idea is to get it to decrease, which means the tumour is shrinking. The AFP is measured weekly along with the full blood count.

After Bobbinogs first chemo treatment, his AFP levels dropped from 498 000 to 124 000. WOW or what. We were shocked at the result. His tumour shrunk to half the size. His appetite improved and he has become even more content than he was.

He has been continueing with chemo, and after each chemo his AFP has dropped dramatically. After the 2nd treatment it went down to 18 000, after the 3rd it dropped to 2200, after the 4th it dropped to 445, after the 5th, its now on 52. He is currently busy receiving his 6th chemo treatment.

We have now also been pencil'd in for surgery after his 7th chemo, if his bloods and other tests are good, then they will be removing his tumour on the 14th October. Its very scary, but it has to be done. All we know at the moment is that the tumour is on the left lobe of the liver. The previous ct scan did not show much as the tumour took up all the place and covered the liver. After the 7th chemo when they do all the tests, we should know more, like where in the left lobe, which veins are involved (if any) etc. Hopefully it is not positioned badly and can be removed easily, but time will tell.

Those of you going through the chemo thing will understand, but we find that a lot of people have no idea, as we had no idea when we started. So I have set up this blog to maybe help or inform someone who finds themselves in the position we were in a few months back, not having a clue regarding the tumour their child has.

We also found that quite a few of our friends did not really know how to deal with our kid having a tumour so they avoid it and/or us. Our view is that he is not sick, as he is a very healthy little kid except for the tumour, which is going soon anyway.

From now on, I will do entries to the blog as we go. Good luck to all fighting the cancer battle.