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.