August / September 2011

Since my last post at the end of July, we have had our routine 3 monthly trip to Auckland to see Toby’s Oncologist and to have the usual combination of Vincristine chemo via Toby’s Port and Methotrexate chemo via a Lumbar Puncture in theatre.  This time Toby also had an x-ray and saw a Physiotherapist about the nasty cough that he can’t seem to get rid of.  The x-ray didn’t show anything major and Physio just gave us some exercises for Toby to do to help loosen the mucus sitting in his chest (basically bubble blowing through a straw into an old milk container).  The trip all went well.

A week after arriving home from Auckland Toby developed a temperature of 39.7 so it was straight off to Hawke’s Bay Hospital.  Toby had some bloods done which showed that he was Neutropenic (no immunity) so he was started on IV Antibiotics.  We stayed in the hospital for 6 nights and over that time Toby was given two different Antibiotics due to the fact that his temperature was not coming down, he also needed a Blood transfusion and a Platelet transfusion while we were there.  We were discharged after the 6 nights but had to return once daily for 7 days for IV Antibiotics until his Neutrophils came back up.

I got a phone call from Starship to say that I was to stop giving Toby the oral chemo tablets that he has every night just until his levels got a little higher.  It was awesome not to have to worry about keeping track of when he last ate and being able to go to bed when I liked instead of staying up to give him the tablets!!!  This only lasted for a week though :(  The amount he gets has now been halved though as the full amount always seemed to make his levels crash too low.  It’s all a bit of trial and error getting the amounts right for what his body can handle.

On September 1^st Toby had his 1 monthly trip to Hawke’s Bay Hospital for Vincristine chemo via his Port and a check over by the Doctor.  All went well and he started his week of Steroids.

On September 9^th our brave little man turned 3 years old :)  His daddy and big brother had the day off work/school and we spent a lovely day together with a visit to the Aquarium, a walk along the beach with an ice-cream, lunch at a café and then had Fish and Chips for tea with his Grandparents, followed by a bright green Diego cake!!

Toby has had several finger pricks over the last month to keep an eye on his levels which have been very up and down, much like his cough – but he has managed to hang in there without being admitted to Hospital :)

Toby is due for bloods to check all his levels on the 26^th September and then he is due to have his Vincristine chemo at Hawke’s Bay Hospital on the 29^th September.

We are not due back in Auckland until the 26^th October.  This date will mark exactly 1 year since we hoped onto an Air Ambulance and headed to Starship where our life was completely tipped upside down……….