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.