Rory Gardiner's Webpage

17, Oct, 2010

Sunday 17th October 2010

The boys and I didn’t have any trouble filling in the last week of the school holidays.  We went swimming at the Aquatic Centre, biking on the coastal walkway (I meandered along), and had cousin Corbyn over to stay.  Sam went to his friend Robert’s 11th birthday party and they pulled an all-nighter.  He was very much the worse for wear when Sean picked him up at 11am the following day.  He slept all Saturday afternoon and through the night!  While Sam was away Rory and I visited Stoney Oaks Wildlife Park.  Rory enjoyed watching the piglets, bottle feeding the goat kids, and cuddling the baby rabbits and guinea pigs.

It was back to school this week for the final school term.  I was worried about how Rory would cope with two new teachers but he has been fine.  His Teacher Aides have provided continuity and support, and I have met with, and spoken to his teachers every day.  The children have started swimming as Inglewood Primary has an indoor pool.  Over the past fortnight I have met with the Managers of SPELD and Clever Kids to discuss tuition in numeracy for Rory.  He is going to start at Clever Kids one afternoon per week.  A normal learning session lasts an hour but Rory will not be able to sustain his concentrate this long due to fatigue, so we are starting him at 30 minutes.  Sam commenced guitar lessons after school this week, and Rory attended the athletics session run by Sport Taranaki for special needs children.  He will begin swimming lessons next week.

I started work at Taranaki Regional Council on Monday, working four ½ days this week.  The time was spent largely on induction, meeting the staff and learning about their areas of work.  I have enjoyed it, and learnt a great deal.  I am sharing an office with another part-timer, and have my own ‘space’ with a desk and computer.  Prior to starting work Sean, the boys and I spent a morning with the Schumakers from the Eastern Taranaki Environment Trust (ETET).  Karen is also a long-standing member of the Taranaki Tree Trust, and Sean is going to assist ETET with feral goat control.  I am now 7 months pregnant.  The midwife has put me on iron supplements.  The baby is sitting low, already in position (head down).  We have given up trying to find a name as there has been no concensus.  Sean has continued with his work at TRC, and has received a bit of ribbing about his partner working there ‘to keep an eye on him’.  He had a long trail run this week up the Mangorei Track on Mt Taranaki to the Ahukawakawa Swamp.  Running through the snow was a new sensation for him. 

We have filled our weekends with outdoor activities as the weather has allowed.  Last weekend we braved stormy weather to walk south along Oakura beach to Weld Road.  Yesterday the boys went trout fishing at Lake Ngangana in Waitara.  An initiative was organised by Fish and Game and the NZ Outdoors and Hunting store to introduce kids to trout fishing.  They corralled 350 rainbow trout into a section of the lake and provided the gear and tutors for the kids.  Both boys were pleased to catch rainbow trout which we cooked for dinner.  In the afternoon we went for a walk at Everett Park Scenic Reserve, a bush remnant along the Manganui River.  The boys were surprised and delighted to find grey sand on the riverbank.  The water was cold and clear, and there were some deep holes which will make great swimming spots in summer.  I was happy to stretch my legs, see kukupa and clematis, and hear a shining cuckoo. 

We have had parcels from home, and news.  Grannie sent the boys treats in the mail, and Trudi sent me some maternity dresses to borrow (thank you both).  Katherine and Korie sent us a text about their new arrival.  Katherine was made a grandmother, and Korie an Uncle with the birth of baby Jayden-Rei.  We want to pass on our congratulations and best wishes to their family.

The biggest happening for us this past fortnight was Rory starting growth hormone treatment.  Sean, the boys and I met with Grace, a Nurse Specialist from Greenlane Hospital, at Taranaki Base Hospital.  Grace taught us how to administer the growth hormone, and left us with the necessary equipment.  The first shipment of medication arrived on Friday via courier.  Approximately 200 children in New Zealand receive growth hormone, several post-tumor, like Rory.  When Rory received high dose radiotherapy to his brain we were told a likely side effect was damage to Rory’s hypothalamus, which regulates growth hormone production.  We had to accept the risk, and the likely side effect, in the fight for Rory’s life.  Radiotherapy is considered the ‘big gun’ for medulloblastoma, and as Rory was classified high risk we wanted to do everything we could to maximise his chance of survival.  We expected Rory’s body would be unable to produce sufficient growth hormone for growth.  He now receives an artificial dose every day before bed via epi-pen as a replacement.  It is given into his bottom, thigh or stomach.  Rory is keen to administer the dose himself, but for the moment it is being done by Sean or I.  We hope the medication will increase his growth rate from the current 1cm/year to the average for his age (5cm/year).  Rory has been very mature and brave about receiving the growth hormone, and gave his class a talk about what he is going through.