Day 3 - No surprises

We had a rough rough day yesterday.

One moment she was perfectly herself, hungry, cheeky and screaming, getting all excited over her Winx Club DVDs, all of a sudden, she starting screaming out in pain and crying uncontrollably. I freaked out immediately. I asked where was the pain ad she said it was her right leg but she couldn't tell beyond that. Pain is nothing new to us but we all know that her threshold for pain is extremely high. Off hand, I couldn't even recall any other times where she was crying like that except the murderous attempt we did to her while pulling out her temp line post stem cells harvesting.

That was around noon time and since than, we have been dealing with all the side effects of the chemo, the entire day and night. I gave her a dose of panadol for pain relief; she fell asleep after abt 15mins of crying and woke up 20mins later again, with all the pain and crying. I immediately know that she needed more pain relief med. Had to leave her crying, ran out to the nurse to get the doctor to prescribe coedine for her. I have it with me but needed the doctor's approval to give. Thankfully, Dr Khawn left her lunch half eaten to rush up and examine her. With the coedine in, she finally managed to get a good sleep.

I had to wake her up 2hrs later to pee (it's what we have been doing since we started ICE, every 2hrs daily) and miraculously, she woke up feeling good, with no pain!!! YEAH! To watch your own child in that kind of pain is what no parent should have to experience ever! But I just focused on the fact that we resolved the pain and that's all that matter!

Of course, while she was not in pain, she was nausea, couldn't eat and drink pretty much the whole day. But that's no surprise to me. I had expected it to hit her hard and bad, just was taken aback by the excruciating pain which was so sudden. And of course, she is very very lethargic, not herself really. She tries constantly to pull herself together to want to play alittle, to watch a little DVD but within 5minutes, she would feel the energy draining from her.

By night, her fever spiked. She threw up numerous times. Changed PJs, changed bedsheets, and change it again and again. My first concern was that our Day 3 chemo was just halfway done with one more drug to start at 12midnight. The standard protocol is to stop it immediately but if you had been following our journey, you would know that I'm not comfortable with any disruption to her chemo schedule. So while dealing with all the nausea, throwing up and fever, I knew that I had to convince the system and overcome the protocols. I must say that I'm grateful, deeply grateful to the doctors here which are definitely becoming more open in listening to every child's unique situation rather than a number in their many cases. It didn't take me long and all of us reached a consensus to continue the day's chemo, do cultures, start antibiotics, and add another anti vomit medicine which she has responded well before. Char has coincidentally always been on drugs that skips one or 2 levels of the protocols the doctors are trained in and hence, I am constantly being a petulant mom, insisting on using what works for her rather than what the protocol calls for. I know I must be quite the irritant pest, but I had to do what's best for Char. I feel bad always though, and wonders if I am one of the blacklisted moms here. Nevertheless, blacklisted or not, it will not deter me from fighting the protocols or the systems. It's never a personal thing but just a firm belief that my baby isn't a number, but an unique individual that as her mom, having walked together the journey, I know what works for her.

And it works! With an IV Lorezapem added, she went back to sleep and she woke up this morning feeling good again. It seems like we have kept the nausea at bay and that's great! One day at a time. Keep calm and move on. She isn't herself entirely but that's expected. Still tired and having no appetite, but we'll deal with that and the fever.

With the fever that's not coming down, discharge on Xmas day is impossible but it's Ok! As long as she is well!

All I want for Christmas is... to spend it together as a family. Doesn't matter where. :-)

Love,
cyn mommy