18 days to go

18 days to go til lowering ourselves backwards down a cliff!  All in the name of charity and to raise awareness for a condition our son, Corey, has called MPS1 or Hurler syndrome.  Donate at www.justgiving.com/mpsabseil 

I'll carry on from yesterday's post with Corey's BMT journey.

Corey's Bone Marrow Transplant (BMT) journey began on July 19th 2009, 1 month before his 1st birthday.  He was admitted to Bristol Children's Hospital Level 7 and didn't leave until 30th August 2009.

Corey's BMT involved 10 days of intensive chemotherapy.  He had 3 different intravenous chemo drugs and then their relevant drugs to counter act the side effects.  Anti sickness, pain relief, anti gout,  anti fungal, fluid to flush the drugs through, drugs to ensure he peed enough fluid out, anti seizure, anti spasm and high blood pressure medication.

He also received his enzyme replacement therapy (ERT) infusion during this process.

This is a Hickman line.  A catheter straight to the main artery by the heart where intravenous (IV) drugs are pumped into.  This is a double lumen catheter meaning he could have 2 drugs running at the same time.

After 10 days we were moved to 'isolation'.  Cubicle 10.  Corey stayed in this room for 30 days.  Including for his 1st Birthday.

He was allowed 4 named visitors plus BMT nurses, a handful of doctors and the very important play and music therapists.  Some of what we had to do to ensure stringent isolation cleanliness and a 'bug/virus free environment' were - we had to change into scrubs each day and his bedding and clothing had to be washed daily at 70 degrees and tumble dried.  Only brand new items were allowed in his room after packaging had been opened outside his room! Everything had to be plastic and be able to be washed with alcohol wipes.  Corey couldn't eat fresh fruit and vegetables in case of contamination so he was a processed food junkie.  Despite complications with nutrition post transplant, today Corey is happy to try new foods and has a great varied diet.

Corey's first trip outside in fresh air for 40 days.