Hi all, just a short note now. As you can see, Our Little Hero is getting big now..... he can even feed himself...

He is doing well and his personality is thriving! Really going through a growth spurt at the moment.

Saturday we have an onco party...... 3 of us chemo moms have gotten together to start a support group in Cape Town as there is no support for onco kids...

Its our groups first function, at the hospital where our kids did chemo, namely Panorama, where Southern Sun Hotel Cape Town is handing over their "Zakumi" being their soccer mascot from the world cup, to our kids oncology ward as they do their treatments in the adult oncology ward which lacks the child like feel, so this may brighten their spirits a bit.

I am also excited, as I am getting a new baby on friday.... a baby marmoset monkey. Its only 5 weeks old and still drinking from a bottle. I cant wait. I will post pictures soon.

Bobbinog are all better

Well, Bobbinog is better. We came home Saturday night...... I took all the kids down to the hospital saturday afternoon with me. I thought if they want to keep us another night, then all the kids stay with me as my babysitter had to leave. I think they took one look at my 5 kids and signed his discharge forms. YAY!!! He is doing well. His appetite has doubled...not sure how that works. Aren't you supposed to eat let after a tummy bug??? However he is completely off milk.... he only drinks rooibos tea now..cold with sugar and no milk. We are keeping dairy away from him as its blocking his iron absorbtion. Will see how his bloods do.

Other than that he brought some proper temper tantrums home with him from the hospital. He can really throw them, equivalent to all the other kids together. I can see some fun times ahead.

The kids were happy to have him home at least and life will settle again soon. NOT!!!!!

Bobbinog still sickipoo!!!

Has not been a good week for Bobbinog. He is still in hospital, however a different one as I transfered him from Louis Leipoldt to Panorama yesterday. They said he was still dehydrated and his drip was not working so they removed the drip and installed a naso gastric line into his stomach and put in fluid (rehydrate) straight into his stomach. He is doing much better today, picked up a kg overnight. The drip is currently off and he is holding liquid, so if all goes well today we wxpect to come home later or tomorrow morning. Will advise.

Bobbinog is Sickipoo!!

Bobbinog has not been having a good month. Last week he had tonsilitis, ear infection etc etc which took a few days to clear up which it thankfully did, but unluckily he moved straight into the next bug. He is currently in hospital with a bad tummy bug. He was admitted yesterday, badly dehydrated and half an hour away from going into shock. He is on the drip and was looking quite perky this morning till the bug bit again and he had a bad patch of diarrea and vommiting which nearly dehydrated him while on the drip. Not good not!!!

He will be in again tonight so hopefully the bug works out so we can hopefully come home tomorrow.

Also they did all his blood tests yesterday and his afp count in on 1.1 at the moment. Cool! They also did the blood test CEA which tests for mets on the lungs, which obviously had me stressing a bit, but the little champs lungs are clear.... Yay.... (but I knew that from previous tests and scans already, but theres always a chance.....). What a great relief to find out what I already knew.... The mind is a busy thing at these times.

Anyway, will keep you posted....... gotta get back.

Hepatoblastoma test results - August 2010

Well, it has been a long time since I last blogged. Just checked my last entry. Bobbinogs bloods were done end June and all was well. Also noted it was when little Enrico passed on to being an angel, and also, Connor was going through a very rough time and the doctors had given up saying he would not survive a week....... Well, guess what!!! Connor loves life and he has proven the doctors wrong... again!!! Yay...Way to go Connor. Connor is doing well. His relapse he had, disappeared. When he went back for tests a week after the doctors said they could do nothing more, the relapse was gone and he had only the usual marks on his scan, the rest was not there. That is brilliant, wonderfull. This little guys is a proper fighter. He has had to do it for more than half his life already. He has just turned 9 and has been fighting neuroblastoma since he was 4, and with his fighting spirit, I know he is going to beat it.

As for the Bobbinog, he is doing well. He had his usual bloods on wednesday past and his AFP is way down on 2.2. Cool, remission now for 8 months and counting. However, the problem we have is that his full blood count shows that his hb is low. on 7.5 and it should be on 10.5. After further tests, we found that his iron levels are very very low. Should be between 11 and 13.5, but his are on 2. Not good at all. He is very badly aneamic. We put it down to too much milk being consumed by him, so he is now limited to 1 cup of milk a day which we split between 2 bottles, he then also gets iron supplements. Hopefully his iron will climb during the next 2 months, time will tell.

Not much other info really. Life is very busy, post chemo, actually more hectic than when we had to fit chemo in and half our time was spent in hospitals.

All the other onco kids are doing well too. We met with our oncologist on friday for our routine checkups. Next time round we are all going for sonar scans.

Our other kids are all well. Life has just moved on as if baby's treatment etc was all part of the big picture and a normal thing, which was one of the stepping stones in life, which it was for us..... a little rock, but we stepped over it anyway.

We were speaking the other day, and said its amazing how many people with kids, who were our friends / family pre chemo, have just dissolved out of our lives. Probably because they do not know how to deal with us having an onco kid, or maybe scared its contageous. Unlucky for them, as it was not their problem and had rhey stuck around, they may have learnt alot from our experience. As we did and we still are and everyone involved in our lives are, and are gratefull for it as we live in the real world now. We have a nice support network going between all the onco moms aswell, which all helps and supports.

Anyway, Will blog again soon, hopefully before the next bloods which are being done in october.

Also, please hold thumbs and pray for Connor. He has some tough treatments lined up for the next month to 6 weeks and will need all the support and prayers he can get. He is having a heavy chemo treatment done then he is going into a room for major radiation treatment. He will be in there on his own for 5 days, with his parents outside his door, only able to go in for 20 minutes a day. Thats going to be difficult for him and them. Lets pray for a very good result.

Will keep you posted.

The Rest of them!

And lets not forget about Bobbinogs Brothers and Sister! First we have Tommy, then Miki then Stasha, Then its Stasha and Miki together. They are both 3 years old. Tommy is 4. We then have the 3...Tommy, Miki and Stasha together (Twice...same photo as I dont know how to delete the 2nd pic) And then we have all 5 kids together....Dylan holding Bobbinog, then Miki, Stasha and Tommy. Yes, they are a handfull and a really naughty bunch, but we wouldn't have it any other way, as we know our kids are normal by their actions!!!

Then and Now

These pics are of The Bobbinog. The first is of the size of his tumour from his liver, the 2nd is him at 11 days old. You can already see how big his tummy is, so I assume the tumour was there from birth. The 3rd, is Bobbinog post op from his liver resection. Day 2, on day 4 he was home and on day 5 he was running around in his walking ring as if nothing had happened. Kids are truly amazing. The last pic is of Bobbinog taken 2 months or so ago. Picture of health. Who would say he is a Cancer child, just off chemo. He is our little warrior! A true little hero. He has battled and won.

Cancer sucks!!!!!

Well, lots has happened since my last post on 26th April. I went away fo a 2 week holiday in May. A well needed break....both for me from the kids and I suppose kids from me too!!! The other Onco kids in hospital have started ending their treatments too. Bobbinogs bloods were done again last week, 24th June, and his afp was on 3.9, which is cool as its below 7.3 which is where is should be. His hb is low...7.9, and it should be on 10.5, so his iron is low so he is anaemic, but have started him on iron, so hopefully it will improve.

However, my good news is greatly dampened as, Enrico, a 5 year old boy who did chemo with Bobbinog, he had Neuroblastoma, he sadly gained his wings yesterday, after a 3 year battle. I am so sad as he was such a sweet little boy. Cancer is really a nasty horrible beast. Another of the boys, Connor, was discharged from the hospital today for home hospice care. He also has neuroblastoma and has been fighting for the past 5 years. However he is not doing well at the moment and his docters have said there is nothing more they can do for him, so we now hope and pray for a miracle, so we can keep that angel on earth with us rather than up in heaven.

It is so sad, the amount of children who are affected with cancer, and the poor response from people in general. Its as if, if people look the other way, then it will no longer be.... well not for them anyway, but for all those families battling cancer, the reality it there daily in everything they do, as it becomes a way of life that will be there forever more.

I was one of those parents that would look the other way, as I was too scared of the reality of childhood cancer, and of how to deal with it, or the parents of the kids who had cancer. Knowledge about childhood cancer is so limited to the general public, so there is very little to no awareness of it.

Two of the other moms and myself are in the process of trying to form a support network for oncology families and children with cancer, where we can try to help a bit and give some emotional support as there is no support network in Cape Town in place. Maybe also bring some awareness to it as well.

Its a nice thought that we may be able to make a difference, even if only to one family, its better than none at all.

Friday we have little Enrico's funeral and that is going to be one of the saddest things I ever do in my life. The funeral of a 5 year old, who was also an only child, I will remember it the rest of my life as I already am. Children should not be dying at such a young age before their lives even start. Cancer is such a bad evil monster. I wish I could collect all of it and send it to hell for eternity!!!! I HATE CANCER!!!

Hepatoblastoma - CT scan - first postoperative

Friday, 23 April 2010, we booked into hospital at 6am. Bobbinog had his ct scan of his abdomen booked for 7.30am.
Stress of note big time. Two months previous to this he only had AFP tested, and 2 months prior to that he stopped chemo. So he has been off chemo for 4 months.......
He went in for the scan at 7.45am...(always late) and was out by 8.15am. While he was under they did his bloods at the same time. Then we waited for the results.....and waited some more, and then some more... Finally at 11am I got the ct scan report which read:.........
No sign of tumour reactivation.....liver appears clear without any abnormalities.......
What a relief... Good enough to bring tears to my eyes. Bobbinog is still cancer free. We are so happy and relieved. That was the big scan, now there is bloods every 2 months and the next ct is in 6 months. Also, his AFP was down on 3.2. Fantastic or what. Our little miracle....1 in a million.

Hi all, we're back again. Bobbinog is due for his next lot of tests. He has had a wonderfull 2 months since the last tests. He is a healthy happy little boy. He can now stand, the crawling bit he has given up as a bad idea.... walking is the way to go. He says a few words, hello, ma-ma, da-da, ta-ta, does clap handy's and waves etc. He loves Telly Tubbies, la la is his favourite and is normally glued to the screen. He is a really cute little bugger.

He is having his 1st post chemo ct scan on friday 23 april, and the usual afp test. Stressing a bit but we believe all will be fine. Will advise.

As you can see, The Bobbinog is doing very well. He is now 11 months old, he turns 1 year old on 18 March 2010. What a 1st year he has had...... To fight cancer from the age of 3 months and to succeed. His bloods were done again yesterday, 19th Jan 10 and they are all still fine thankfully. His AFP is on 5. Its such a relief knowing its still down, and he has been chemo free for about 2 months now. We do the next blood test end april/beg may, and we are doing a full ct scan then too, so we get a good look so we can monitor closely. So I will update again round then, unless there is news I need to post before. Will advise.

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.

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.