Friday 3rd September

It has been a very, very difficult week.

There have been endless phone calls, ward rounds, decisions made, unmade, remade and contradicted by a myriad of doctors and days lost to indecision and chaos and in the midst of all this confusion one little girl lying in an increasing stupor of drugs to mitigate her terrible pain. The detail of the scans she could have or should have had or has had this week are too many to go into - but it has been a frightening and bewildering week for all of us. Last night finally some progress on hunting down what is going on - her bone disease has spread and as thought to be the case a tumour in her pelvis is wrapped around a nerve root and causing her excruciating pain. She also has disease in her hip and her knee. She's in a right old state in short.

So now we have some results we can make a plan and hopefully stick to it. Whole armouries of drugs are now in play - morphine two-hourly, fentanyl patches, fentanyl lozenges, nerve blockers, steroids, anti-inflammatories as well as a secondary armoury of drugs to combat the side effects of all the other drugs. Rose has been conscious less and less in the last couple of days which is appalling but so much less appalling than Rose awake and screaming and begging and pleading for someone to do something about the pain. Now that there is something to irradiate we are going on another ambulance road trip to the Marsden on Monday for just that. Number one plan is to get that done and then get everything possible done to get this baby home.