I'm deeply sorry for the lack of updates but I have been finding it harder to write...
This is will be short update...
We completed chemo yesterday on Friday. She spiked a fever on Wednesday and the 48 hours culture (blood test for infections) result came back negative yesterday which was a relief. However she spiked an other fever yesterday so we had to do another blood culture and we are stuck inpatient again...
The palliative team came in on Wednesday to help us manage her increasing leg pain... And now her pain is better managed. She's on oral morphine as and when she needs it and also on a fentanyl patch which will release morphine onto the skin throughout 72 hrs, which will save Char the discomfort of having to swallow huge amount of medication almost every 2 hours on a perpetually empty stomach because of her loss of appetite.
In her own words, her pain is never at zero, at best a one which she can tolerate... With all the antiobiotics, anti vomit medications, pain relief medications, she is feeling extreme fatigue and doped most of the times but she continues to push herself to stay awake and play with Jase whenever he is here...
I'm hoping that we will be discharged in a few days so that we will get to spend our CNY eve at home. At this time when my faith is wavering and almost non existent, I am ever more dependent on your faith and prayers to get through. Please pray for a miraculous healing for Char and for her pain to disappear soon...
Love,
cyn mommy
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6 comments:
*hugss* :( :( Only God knows how much pain you're going through.
you're always in my prayers. hang in there!
<3 + hugs, sy
Happy new year to u all, princess N cyn n jase
How is Char doing? Praying for her xx
Happy New Year!
I hope things get better for Charmaine this year. :)
Hang in there.
I was browsing through other neuroblastoma blogs and i read about this clinical drug ABT-751 treatment. Have you heard of it? Maybe you all should embark another treatment?
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