A message from mum .........

Well it's the end of another week and what a week it's been!  Harrowing, distressing, unbelievable, just a few words that immediately pop into my head.  Chloe has been her usual high spirited self but has had to endure possibly the most difficult times, with the start of a new medicine regime, the on going daily sudden allergic reactions to nothing in particular, as well as the sudden decision by her consultant to transfer by her consultant to be transferred to Birmingham for more specific specialist treatment.  (Thankfully this decision has now been changed and for the time being we are staying put here at UHCW).

How long is this all going to go on for?  What is the end result?  waking up daily with the same question, is today the day it will all end?  It's extremely difficult being here day and night and not really seeing any significant change, especially a positive one.  Watching the pain and suffering, being helpless as a mum to do anything but say, 'it'll be ok, everything's going to be ok'.  Am I lying?  Should I actually say it'll be ok when honestly I don't know!

So what has happened this week, dilemmas, that's for sure!  Having to make the one difficult decision, to start a medication that can only be given through a jej that causes unbearable pain and twice a day, so how do you cope with the pain that this is going to cause, well in Chloe's case with her tolerance to pain it means high dose iv morphine and paracetamol together with high dose buscapan, buprenorphine, her butrans patches and a lot of will power deep breathing and a pillow tucked tightly around your middle!!

Mast cell (mastocytosis). Is this the cause of the sudden reactions?  Once again time and medication will tell.  The not so funny thing is, Chloe said about this weeks ago after endless research on the internet and talking with friends who suffer similar reactions that only now this is being questioned!
Today Chloe has had to endure another trip to theatre, a replacement central line, a seemingly straight forward procedure, well perhaps for others but when you have a tolerance to local anaesthetic extremely painful!

Living on the ward is exhausting, constantly putting up with inexcusable mistakes by staff, watching friends we have made on the ward also go through pain, misdiagnosis and continuous let downs, calling home trying to be positive, missing the normality of day to day life, but for now this is home, this is the battle, this is where I will stay, by Chloe's side praying for a positive outcome.  Thank you to those who daily message me with hope hugs and prayers, I am eternally grateful for your support.