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.