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.