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Wednesday, July 7, 2010

A Quick Overview of What We Have Been Told So Far

The Dr's have given us a text book on Leukeamia, some written handouts and a pile of papers detailing Oscar's treatment protocol. I don't have them here with me to refer to so I'll just give you the basic overview of what I can remember so far.

Oscar has the more common type of childhood Leukeamia, known as ALL. The prognosis is relatively good, with about an 85% recovery rate. The head Dr in charge of Oscar is Mary Bergen. Both Pete and I like her manner - it is straight up, no messing around, hard truth. When she told us the full diagnosis she was very clear that while the fact that he has ALL is relatively good in the world of Leaukeamia, it is pretty much still one of the worst things you can be told as a parent and that the journey Oscar and all of us is about to go on is not an easy one. We really appreciated how up front she was and she also managed to make us laugh (a sense of humour essential!!).

The two year treatment protocol has different stages that are adjusted along the way based on how Oscar is responding. The first six months are the most intense and very crucial. The first two months are particularly important and children who go into remission in the first 4-6weeks have a better prognosis. So, the first two months are very intense, the middle two months slightly less intense and the final two months are again very intense. During this six month period there will be visits to the clinic as an outpatient for chemo a minimum of twice a week, plus regular bone marrow biopsy's to check his progress. On top of that, you can expect some hospital stays. We have a list of situations where we have to bring Oscar into the hospital immediately, the most common one is whenever he gets a temperature of 38 or more. This is because he can't fight infection and will need to be isolated and put on IV antiobiotics.

After the initial intense six months, the treatment is primarily outpatient based with trips to the clinic being less often - about once every 3 weeks. Again this can all change if he gets a temperature, if something happens to his central line, if he refuses to eat and a number of other situations.

After the two year period, if all has gone according to plan, Oscar will then have regular tests and checkups to ensure that he is still clear of the disease. If, after 5 years, there are still no signs of the Leaukeamia he is considered cured.

Having said all that, the best way for us to approach this is one day at a time. The Dr's have indicated that when we do get Oscar home we will have a big adjustment period while we figure out what our 'new normal' is as a family. They say it is important to try to go back to Oscar's routine as much as is possible around the requirements of his medications. It is also important to treat him normally, discipline him the same and so on - again, as much as possible without putting him at risk of infection.

If Auden gets sick we have been told we have to try and quarantine him, although they realise this is difficult. Same goes for anyone else who gets sick. In this first six months particularly we need to try to be vigilent with protecting him from picking up infections. Some children are lucky and have hardly any hospital stays as they manage to avoid any illnesses but you can only do the best you can.

OK, that's all I can remember at the moment. I hope it gives you a bit more information and a vague idea of what to expect.

1 comment:

  1. Thanks Cindy, really good to here the prognosis rate - praying that he goes into remission early. Love Kath