I can’t think of a snappy title so this will have to do

I don’t think I’ve told you enough times how wonderful and supportive our family and friends are.

Tonight, like most evenings, we had ready-to-eat supper.  The moms at the play school that Woutertjie went to last year deliver frozen meals for us weekly.  I can’t begin to tell you how much easier that makes my life.  After spending the whole day in hospital the last thing I feel like when I stumble through the door is cooking.  Now my greatest responsiblity is deciding what to defrost.  Thank you to every mom involved in this.  Most of you I’ve never met seeing as I was the working mom who rushed in and out and didn’t have lots of time to stay and chat.  I don’t have words to thank you.  Your generosity is too much for me to fathom.  Thank you.

I’ve wanted so many times to take Woutertjie to school for one day.  Unfortunately I know that it will only start trouble.  He has sort-of forgotten about school – he talks about it but rarely asks when he is going.  Our fridge is still completely covered with his drawings and works of art.  The only white spots are where Carien wreaked random destruction.  That child of mine…

Today I finally realised why I feel the way I feel after spending so much time in hospital.  It numbs you.  I’m not physically tired but I am mentally knackered.  I feel wrung out and cut off from the outside world.  It makes for interesting (lack of) conversation when Wouter gets home. 

Boeta received his 10th dose of radiation today.  18 left.  We are finishing with radiation on the 15th of May.  That day will not arrive too soon.  These daily anaesthetic and radiation sessions are ageing me.  It isn’t fun to see your baby knocked out and tubed up and monitored by machines.  Being the busy body that I am, I hover over the setup like an irritating gnat.  The only times that I haven’t been with Boeta every second was when I had to make a detour to the cafeteria to get some blue chips for when he wakes up.  I tend to catch up with the procession before they get to the radiation facility though…

At the same time I am amazed at how smooth things have been until now.  I can’t tell you how much I’ve been dreading radiation and now we are 10/28 done.  It is becoming more difficult to get Boeta under though.  He hates the anaesthetic (Diprivan = milk of amnesia) because it gives him a headspin.  From tomorrow to Friday we are only going to hospital for the radiation and he will have to be drugged from awake (we try to ambush him while he is having his nap).  Please say a prayer for us.  I don’t have it in me to hold him down while he is going under.  I will if I have to because it is my job as mommy, but I don’t want to.

Before I go to bed – this morning was one of my favourites ever.  We woke up with all 4 of us in our bed and cuddled and tickled and it was heaven.  So for now I won’t give them away.  😉

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4 Responses

  1. Praying for you guys as always!

  2. God is goed en groot. Ek dink elke dag aan julle op die pad wat julle met klein Wouter loop en respekteer die wyse waarop julle als hanteer. Dit is waarlik besielend. Hierdie berig net nog ‘n bewys van ‘n wonder. Baie sterkte met vandag en elke dag.

    http://www.dailymail.co.uk
    21 April 2009

    The miracle survivor: I was given months to live… then my terminal cancer vanished
    By John Naish
    Last updated at 12:25 AM on 21st April 2009
    Sharyn Mackay and John Pattison belong to an extraordinary club – people told they have terminal cancer only for their tumours to disappear inexplicably, to the astonishment of patient and doctor alike. It’s tempting to see these stories as medical miracles. But drug companies are hard on the trail of a more rational answer – that the tumours were ‘killed off’ by the patient’s own immune system – and are developing new therapies to harness this power.
    Sharyn knew there was something wrong when she began suffering pain in the right side of her stomach in April 2003. She was diagnosed with a cancerous tumour on her kidney, which proved so rare that the doctors at Craigavon Area Hospital in Northern Ireland sent samples of it for examination by specialists in London, Glasgow and Harvard.

    Sharyn Mackay with husband William and daughter Olivia. ‘I wasn’t going to let her grow up without a mummy,’ she says. ‘They said it was spindle cell sarcoma, which is normally a bone cancer. I was one of only ten known cases where it had become a kidney tumour,’ says Sharyn, a 46-year-old mother of four from Newcastle, Co. Down. ‘The surgeon kept a watch on my kidney. But in April 2004, he told me the cancer had rattled through my kidneys and lungs and I was a terminal case.’ The cancer was inoperable and chemotherapy, even if it worked, would add only a few weeks to Sharyn’s life. ‘The hospital said treatment was an option, but not a cure, and that I had a year to live, at best.’ Sharyn and her family were devastated. But she felt determined to beat the diagnosis and started to pray. Three months later, something astounding occurred.
    ‘Further scans to see how the cancer was progressing showed the cancer was gone. The doctors were astonished, and said it could not have been due to anything they’d done.’ Sharyn is convinced that what happened was a miracle. ‘When the doctors said my cancer was terminal, I put my faith into practice and attended a Christian healing ministry.’ Rather than try health regimes such as special diets, she says: ‘The situation was out of my hands and I just believed in the power of prayer. I was absolutely terrified. ‘But I was also convinced that this was not my time. I told my husband, William, I wasn’t going to let my youngest girl, Olivia, who was then eight, grow up without a mummy. ‘Four radiographers studied the scans and none of them could quite believe it. The tumours had gone and I was told to leave the hospital and live a full life. The cancer has never come back and I have never felt better.’
    When John Pattison was diagnosed with Hodgkin’s disease – a cancer of the lymphatic system – in 1974, he, too, was told his case was terminal. Thirty years ago, the outlook for such cancers was poor and treatment involved only basic chemotherapy and radiotherapy.
    Whenever John thought he was on the mend, the tumours would come back. In 1977, he suffered his fourth relapse. ‘This time they said it was now just a case of palliative care, to make me feel more comfortable, rather than a cure.’ Aged only 21, he decided to make the most of the time he had left. He flew to North Carolina and stayed with an aunt for two months. When he reluctantly returned to England to face the doctors again, the news was astonishing. ‘They did a few tests and when I saw the consultant, he had a big smile on his face,’ says Pattison. ‘He shook my hands, saying: “You are clear, all bloody clear.”‘
    John was told he had gone into spontaneous remission. Taking the opportunity of the reprieve, he gave up work as a shipyard worker and entered nursing, eventually becoming a specialist haematology nurse at the same hospital where, as a terrified 18-year-old, he was first told he had cancer. Now 52, and working as a Macmillan Cancer nurse specialist at South Tyneside District Hospital, he says: ‘It is a privilege that I can do this job – although there are times when I feel guilty that I survived and some of my patients do not.’ New research shows these kinds of stories happen more often than one might imagine. For example, a recent study of Norwegian women concluded that spontaneous remission of breast cancer may have occurred in more than 20per cent of cases. The study, in the journal Archives of Internal Medicine, compared 100,000 women who had received regular two-yearly breast screens over six years, with 100,000 similar women who had not.
    At the end of the study, the tumour rate in women who didn’t have regular screening was 22 per cent lower. After exploring all other possibilities, the investigators concluded that the difference could be explained only by spontaneous regression of their tumours – over the six years these women had developed tumours that simply vanished on their own before being detected by a doctor. Doctors have long known of occasional instances of skin and kidney cancers that just vanished. Neuroblastoma, a rare childhood tumour, can also disappear without treatment. Why does this happen? ‘I’m a great believer in fate,’ says John Pattinson. But he also believes his immune system may have been his saviour. ‘There has long been a belief in the theory that some people have an immunological ability to remove cancer from their bodies, but that most people don’t have that response.’
    New research seems to confirm this. In February, the journal Lung Cancer reported on a man whose tumours had spontaneously disappeared. They found his blood had high levels of an antibody to a molecule called NY-ESO-1. This molecule was also found where his tumours had been, so it seems that his immune system destroyed them, say doctors at Japan’s Nagasaki University. Normally, our immune system attacks only things that it recognises to be alien invaders, such as cold and flu viruses. It won’t attack anything in our own bodies such as cancer (although this safeguard can fail, leading to auto-immune diseases such as arthritis, where antibodies assault the lining of the joints). Based on the new understanding about the immune system and cancer, scientists are working on drugs to boost the power. After all, why use devastatingly strong drugs to kill cancer cells if you can enlist the body’s own defences to do it?
    One of the first scientists to try to recruit the immune system to fight cancer was the New York surgeon William Coley in the 1890s. He was inspired by a patient who recovered from sarcoma after suffering a serious bacterial infection. Coley started vaccinating other cancer patients with bacteria, claiming his toxins spurred immune system to destroy tumours in a minority of cases. Yet many doctors did not believe the results. The scepticism, plus the development of radiotherapy, caused Coley’s approach to disappear. Now it is being explored again. In 2006, Dr Wolf Fridman, working in Paris, analysed colon tumour cells. He found the level of white blood cells – the cells of the immune system – inside their tumours was a strong predictor of recovery. Those with the highest number of the cells rarely relapsed; those with the fewest almost always did.
    PROFESSOR
    Peter Johnson, the professor of medical oncology at the Cancer Research UK Centre in Southampton, is a British pioneer of this approach. Southampton is a major British centre for studying cancer immunotherapy and new treatments. ‘The immune system’s role is tantalising because we know something is at work in spontaneous remission, but we don’t know what makes the system do it,’ he says.
    ‘The question is, how do you turn the immune system from an occasional assistant into a more constant helper?’ Johnson and his colleagues are examining ways of creating vaccines that stimulate patients’ immune systems to produce antibodies that kill tumour cells. ‘Cancer Research UK is funding research into this area,’ he says, ‘and pharmaceutical companies are working in this area, too.’ GlaxoSmithKline, Bristol-Myers Squibb, Sanofi-Aventis and Pfizer are developing drugs to boost the immune system to fight cancer. GlaxoSmithKline has just recruited more than 2,200 patients worldwide for final-stage tests of a vaccine to prevent lung cancer. The vaccine is also being tested on humans who have the skin cancer melanoma. A series of injections is given to stimulate the immune system to destroy cells that carry a molecule called MAGE-A3. This is not present in normal tissue, but found in several cancer types, including up to half of cases of the most common lung cancer and melanoma. In trials, it is being given to patients who have undergone conventional treatment for a tumour, but are at high risk of relapsing. The five-year survival rate for lung cancer is only about 10 per cent. Preliminary results in small trials suggest the vaccine can boost survival rates by up to 27 per cent, but more research is needed.
    ‘The vaccine takes advantage of the immune system’s in-built ability to eliminate foreign materials and harmful cells,’ says Bryan Meyers, who heads the MAGE-A3 trial at Washington University School of Medicine. ‘This natural process has few sideeffects, unlike traditional treatments.’ Meanwhile, a drug called Ipilimumab is being developed by Bristol-Myers Squibb and Medarex. It is hoped it will stimulate the immune system enough to attack rogue cancer cells. In one trial, it shrank tumours in 10 per cent of melanoma patients and more tests are under way. The drug is also being tested in men with prostate cancer. Stimulating the immune system in this way demands extreme care. The dangers of manipulating our bodies’ defences were starkly highlighted in 2006, when six healthy volunteers were hospitalised after the disastrous trial of an immunotherapy drug for diseases such as multiple sclerosis at Northwick Park Hospital in Middlesex.
    The key is to encourage antibodies to attack only a person’s own cancer cells. Cancer cells can carry unique chemical signs to show they are rogue – scientists must prime patients’ immune systems to recognise and attack these cells, leaving the rest unscatched. Professor Johnson explains that much of the difficulty lies in the complexity of our body’s defensive mechanisms, which vary from person to person. He says: ‘The immune system is finely balanced. We have evolved so that it does not run out of control and attack our own bodies. So it is very difficult to get it to attack your own cells.’ Another difficulty, says Johnson, lies in studying patients whose immune systems have successfully fought off cancer.
    ‘We are talking about tumours disappearing – and when something is gone, it is very difficult to study it.’ Spontaneous remission hasn’t left John Pattison entirely unmarked, however. As he explains: ‘I have complications nowadays from the unsuccessful radiotherapy I received. ‘I had a benign tumour removed recently and my thyroid gland does not work any more. That’s made my hair fall out – I used to love it long. But I’m not complaining. Life is very sweet.’

  3. Zani, ek dink elke dag aan jou en W. Ek weet dit klink redelik corny….. maar alles SAL okay wees. Ek dink ons moet vir jou anti-aging velroom kry ook…net vir die wis en die onwis. (soos ouma ina sou se)

    Love you love you love you!!!

  4. Hi my friend..

    thinking of you often!

    Hugs

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