29. Jan, 2017

It's A Numbers Game

Amelia is doing well, we now have a date for the start of maintenance - 16th February, this is also the date we have our meeting with our consulatant.

Maintenance will consist of 4 weekly treatment plan and our journeys to the Royal Marsden will start to reduce. Since y last post Amelia has her last planned lumbar punture and her last planned cytarabine (chemo), another milestone down, next milestone is Valentine's then the 16th, so we go onwards remaining positive, dealing with it as only Amelia can do.

Today, however, Amelia had to go in Rainbow Ward for a transfusion, due her reds being low, this was something we were expecting due to the current treatment plan. What has thrown a spanner in the works, is that Oliver has developed a temperture, so Amelia and I have "moved out" to Nannies! We can't and won't take a chance.

Thanks for all you messages, still getting them and reading every one.

Love The Winsbury's X


Here are the current numbers on the Beads of Courage

4 Bone marrow biopsy

75 Chemotherapy infusions

43 Steriod infusions

51 Community nurse visits (the excelelnt team that administer chemo at home)

25 Dressing changes (stopped now the port is in)

2 Ambulance rides

1 Mouthcare treatment

22 Infusions by antibiotics

44 Slepovers at hospitals, 42 of which were either isolation/fever or neutropinic

1 PICC line fitted / 1 PICC line removed

1 Portacath fitted

104 Pokes (Blood draws)

15 Lumbar punctures (spinal taps to you old folk!) 

18 Anaesthesia

5 Scans (Xray/various)

1 Transfer to intensive care

16 Blood transfusions