There was a story in our paper today. The three-year-old daughter of Wanganui mayor Michael Laws has been diagnosed with leukaemia and is also suffering from acute pneumonia. I feel so sad for them as I remember the devastation that we felt when we got the news about Bianca, as I remember that I sat there feeling that the journey felt like a prison sentence. All the new words, all jumbled up in my head.
But we've come a long way. Sure we still have a long way to go, but it certainly has become more manageable with each step we took.
I feel quite shocked when I think about the number of kids fighting this battle every single day. It makes me a sad too, that these kids have to deal with so much more than many adults deal with in a lifetime. But these kids are so strong, so brave and wow, they sure can teach us a thing or two about living life to its fullest!
For most of it Bianca is just a little girl, doing little girl things. She loves playing games and will sometimes say the funniest things. Sanna and Bianca were playing a "story telling game" where you have to make up a story based on pictures on cards:
As parents our instinct is to want to protect our children from all the nasties in the world. And certainly it broke my heart when I had to take Baby Bianca for her injections. So much so that it was Terence's job. Since Bianca got sick, I couldn't shift the responsibility and I had to become stronger, so yes, it is easy to want to sugar coat things, it is easy to want to avoid the subject. But I found that when we are honest and when we explain about things (no matter how unpleasant they may be) then Bianca feel more prepared, more in control. Of course I had to find a way to explain things so that she is better able to understand. Things like:
"The soldiers in your body are sick and they need special medicine to help them get better so they can fight the bugs" (It sounds less complicated than "the immature white cells are crowding out the mature ones").
"Platelets are just like having little doctors under your skin, they fix the bruises and the sores" (Certainly much less complicated than "platelets are the cell fragments circulating in the blood that are involved in the cellular mechanisms of primary hemostasis leading to the formation of blood clots" - thanks Wikipedia)
And explaining to her that blood is just like an egg. An egg has a shell, it has the white bit and the yolk. But it is still an egg with 3 different parts and just like this, you have blood, but it has different parts like platelets and plasma.
So in a way, I believe that knowledge is power and will protect her and make her feel "safe" in a way I guess. And then the little girl comes forward again, she doesn't brood over what happened, she doesn't have any regrets, she doesn't keep talking about the "life she had", she just smiles and happily carries on playing, because now is all that matters!
But we've come a long way. Sure we still have a long way to go, but it certainly has become more manageable with each step we took.
I feel quite shocked when I think about the number of kids fighting this battle every single day. It makes me a sad too, that these kids have to deal with so much more than many adults deal with in a lifetime. But these kids are so strong, so brave and wow, they sure can teach us a thing or two about living life to its fullest!
For most of it Bianca is just a little girl, doing little girl things. She loves playing games and will sometimes say the funniest things. Sanna and Bianca were playing a "story telling game" where you have to make up a story based on pictures on cards:
- Sanna: "What is the girl in the picture's name?"
- Bianca: "Hmm, I don't know"
- Sanna: "What about Sanna or Lea?"
- Bianca: "No, those are adult names and this is a girl"
- Sanna: "But you will keep your name even when you are an adult"
- Bianca: "No, Bianca is a girl name, I will be changing my name"
- Sanna: "To what?"
- Bianca: "Cannie"
As parents our instinct is to want to protect our children from all the nasties in the world. And certainly it broke my heart when I had to take Baby Bianca for her injections. So much so that it was Terence's job. Since Bianca got sick, I couldn't shift the responsibility and I had to become stronger, so yes, it is easy to want to sugar coat things, it is easy to want to avoid the subject. But I found that when we are honest and when we explain about things (no matter how unpleasant they may be) then Bianca feel more prepared, more in control. Of course I had to find a way to explain things so that she is better able to understand. Things like:
"The soldiers in your body are sick and they need special medicine to help them get better so they can fight the bugs" (It sounds less complicated than "the immature white cells are crowding out the mature ones").
"Platelets are just like having little doctors under your skin, they fix the bruises and the sores" (Certainly much less complicated than "platelets are the cell fragments circulating in the blood that are involved in the cellular mechanisms of primary hemostasis leading to the formation of blood clots" - thanks Wikipedia)
And explaining to her that blood is just like an egg. An egg has a shell, it has the white bit and the yolk. But it is still an egg with 3 different parts and just like this, you have blood, but it has different parts like platelets and plasma.
So in a way, I believe that knowledge is power and will protect her and make her feel "safe" in a way I guess. And then the little girl comes forward again, she doesn't brood over what happened, she doesn't have any regrets, she doesn't keep talking about the "life she had", she just smiles and happily carries on playing, because now is all that matters!
Medicines today:
- Mercaptopurine - 1 tablet a night
- Co-trimoxazole - 6.25ml twice a day
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