What a nightmare week this has been!
Paige's tummy continued to be runny and she became weaker and weaker, by Monday I had carried her around whenever she needed to move without even realising it. Other than that she just lay on the bed motionless for hours on end till she fell asleep. By Monday night I was waking up and checking to make sure she was still breathing.
Tuesday morning she tried to get out of bed and fell down, that was the last straw for me. I called her specialist nurse she suggested that Paige be reviewed by a doctor sooner rather than later. She fell asleep soon after my conversation so I got ready and packed a back for a possible overnight stay. She woke up about noon and was too weak to even speak, so Sam and I put on our super speed mode and was out of the house in 15 mins! On the drive to the hospital I kept checking on her to make sure she was ok. Dr Millard agreed with me that whilst she didn't have a temperature, she had never seen Paige like this and we should start IV fluids and anti-biotics immediately just to be safe. We also discussed her diet at length and in the end agreed that she needed to be completely dairy and soya free.
Of course we were admitted with limited entertainment of the question "how long will we be here?". We were again reminded of how lucky Paige has been to make it this far through her treatment without being ill. Apparently her current state is par for the courses for an intensive block of chemo. Each successive round of chemo knocks then down even further and their bodies are not well enough equipped to completely heal before the next round starts again.
So the way forward:
1. Complete dairy free diet
2. Anti gastric medicine 2 days before the start of steroids, all the days during the steroid and at least two days after the last dose of steroids. This will hopefully reduce the impact of the steroid on the lining of her stomach.
3. Review diet in 6-8 weeks time.
In the meanwhile Paige has been given a vile milk powder made from amino acids that she refuses to drink. In fact she tasted it and thought it was the straw that was bad, so she tried three different ones and another cup before deciding 'no way mummy.' I tasted it this morning and nearly vomited and that was literally just a drop of it. So it's going to be a difficult couple of weeks for all of us, she's already pointing to the fridge and asking for 'milk' and 'cheese'. As soon as she is strong enough she'll push the stool over and try to open the fridge.
She's still very weak and spends most of her time lying in bed, or snacking or crying. Her tummy seems to be getting better we're down to two manageable poos per day. The good news is that we are at home .......Her next review on on Monday next week. But her neutrophils are ni so if she strikes a temp it's back to the QA for us :-(