Protocol V

Time flew by and we are now approaching the end of our intensive treatment for Megan. 

On 27 August 2012, we started with Protocol V - two more to go and Christmas this year will have a new meaning to us. This protocol is a little longer than the others and is broken into 2 stages. 

Stage 1 involves a spinal jab, 2 jabs to the hands and 5 dreadful jabs to the thighs. I hate the thigh jabs, they make her lose her leg strength. I was told it is also very painful because the meds is injected to her muscles and sends a burning sensation which can last several hours. Usually she cries and will request to be carried instead of her usual active self. This stage also has a dreadful oral steroid involved. And this causes mood swings, change of personality, appetite and hair loss as well. This time, her dose is higher than the first month, although it is only for 2 weeks. 

As I sit and write this, I am contemplating if I should bring her for her jab tomorrow or should I have the father do it. I feel awful having to leave her but I also feel terrible to look her into her eyes and say today we have to get the jab on the thighs. I can't bear to lie as well. One may feel I am a bad mother for deserting her, but throughout the months, I have been keeping a straight face while telling her what to expect ... and believe me, after a while, it gets to you. Sometimes I feel very defeated, sometimes I feel helpless, sometimes I feel I should be taking the jabs instead of her, sometimes I wonder why ...

I can't wait till the second stage comes. Stage 2 has 4 straight days of jabs through the line on her hand, 2 consecutive days of drips and 2 weekly jabs on her hand and then we are done. 36 days in total. I like this one. This is an easy one. But this time, we start a new oral drug. And we do not know how she will take it. 

Doc says while the protocol is the same and the meds are the same, he has to feel his way around her dosage since each child is different. Can you imagine that? I don't know how he does it day after day with all these kids, and still smiles each time he sees us. He even manages a joke here and there. 

We all take our health for granted most of the time, let's say a word of thanks and pray that we will continue to stay healthy. For tomorrow, I shall leave Megan with her dad while I get Ryan to his drama class. Hope she will be ace it again, like she usually does.