Journey to-date

Tuesday 24th September

Last Monday night (16th) when I walked in the door at 7.30pm from a meeting the house was in turmoil. Sam and Caitlyn had come home for the night and Sam was asking what was wrong with Rory’s face. There was a large hard swelling on the left hand side in front of his lower ear. It was the first time anyone had noticed it. Rory was well and wasn’t in any pain. I took him to our GP on Tuesday morning who referred Rory to the Paediatrician at Taranaki Base Hospital. By Tuesday afternoon he too was puzzled.

Rory was booked for an MRI, for another issue, on Friday 27th Sept so additional imaging of his face was requested. When I rang to check the appointment on Thursday (19th) I found out the type of MRI Rory needed could only be done in Auckland so would have to be organised. I began to panic about the swelling on his face which appeared to be spreading. It needed to be looked at urgently. I got hold of the Paediatrician who organised an ultrasound for Monday (23rd) morning. Sean took him in yesterday while I went to work. After the ultrasound an urgent CT scan was done. When I heard this was being done I raced to the hospital. Preliminary discussion with the Radiology Doctor indicated there was a serious problem in Rory’s jaw bone, possibly as a result of radiotherapy. We were sent home while a report was prepared and the Doctors briefed. The Paediatrician called us at 4pm and told us we needed to come back to the hospital as she couldn’t give us an update over the phone. That is never good news. At 4.30pm we entered the Children’s Ward. The Paediatrician took us into a room and proceeded to close the door. I almost said to her it wasn’t necessary, but then she said there is a tumor. You think I would have been forewarned. Although it wasn’t outside the realm of possibility, and what I had feared the most, it was still the last thing I expected to hear. It is hard to describe the shock of receiving this news; disbelief, confusion, anger and fear.

The tumor is 5x5cm and in his jaw bone. We looked at the tumor on the imaging. It has carved out an area for itself on the side of his face, eating away at the bone. We don’t know how long it has been growing, what it is, or whether there is cancer anywhere else in his body. Rory has survived 10.5 years from his first brain cancer diagnosis and we were at Day 1 all over again. This time Rory is 17, with a greater level of understanding about what is happening and what is likely ahead. He is afraid. Sean and I shed a handful of tears and are working hard to pack away the grief. We have to be strong for Rory, to keep us moving on this journey, to still find joy in life and to do everything we can to ensure he survives.

The hospital sent us home to pack. They organised a flight for Rory and I to Auckland this morning and accommodation at Ronald McDonald House. It is hard to pack knowing you are walking out of your life, not knowing when you will return. We had to make a few difficult and upsetting phone calls and try and sort the most urgent things via email. It is very hard to sleep the final night in your own bed.

Rory and I flew up this morning and arrived at Starship Hospital at 10am. It was a huge relief to walk in the door but also a terrible tragedy. We are lucky Rory is under the care of the specialists at Starship. Over the last year he has been transitioning between child and adult services in the health care system which has been very difficult. There are more patients, longer waiting times, less specialists in the regional centres and they do not have the experience of dealing with childhood cancer survivors. Thankfully Rory is still under the care of our original oncologist Dr Stephen Laughton, so he will take charge of Rory’s treatment.

Rory spent all day nil by mouth waiting for a biopsy of the tumor to determine the type of disease IN spite of being on the Acute list it did not eventuate. We have been discharged to a Ronald McDonald Grafton Mews apartment and we have to be back on Ward 27B tomorrow morning. We will not get the results until Monday. Five long days of waiting. Thankfully Rory remains physically well. The Drs are surprised he isn’t feeling any pain. Sean and Colt followed us up in the car. The four of us together will give us strength for the difficult few days and weeks ahead.


Wednesday 25th September

We returned to Ward 27B this morning. Rory was nil by mouth from 7am. It was a day of waiting, blood tests and a cardiac echo to measure his heart function. We watched the Taranaki Rescue helicopter take off outside our window. Rory finally went in for a biopsy at 4pm. The Dr likened it to shooting the side of his face with a spud gun. It never gets any easier when they wheel Rory into theatre. I have to swallow the emotions which well up from inside. He is so brave about it. It’s hardly fair if I am a snivelling mess.

Colt, who is always full of beans, was enrolled in the school at Ronald McDonald House. They have classes from 10am-12pm and 1.30-2.45pm. This will give him something to do, provide the support he needs from his peers and help burn off some of his energy. At the moment there are few children in the class due to the measles epidemic. The Nurses on the ward told us Colt is not allowed to return due to a lockdown. It is currently parents only with the patients and no visitors. This has left Sean and I juggling Colt and Rory which will get more difficult with school holidays.

Thank you to everyone who has sent their love and best wishes. It makes us stronger knowing we are not alone. Thank you especially to my great friend Mandy and the team at Smokeylemon website design who have sponsored Rory’s website for the last decade. This week they undertaken modifications so I can write this blog and let you know what is happening. It also enables me to keep a record of the journey for Rory and helps me cope with the frightening journey we are on. A lovely chocolatey parcel arrived today from Inglewood Primary School. This put a smile on all the boys faces.


Thursday 26th September

We are now waiting. To cope it is best not to think about it. The side of Rory’s face is swollen and tender and he is a bit tired, but otherwise holding up well.

Today we got a day off from the hospital and medical appointments. We wandered around the Auckland CBD window shopping at our favourite stores and eating Dunkin Donuts (we were thinking of you Sam). Colt came out of the Lush store smelling sweet and Rory found a Lego Superheroes set to build. Even though it is completely urbanised we found a cool store full of hand crafted items inspired by the native plants and animals of Aotearoa. If reminded us of the special species and people at home. Tonight we are going with other families from Ronald McDonald House to the VIP event at Kelly Tarlton’s. The boys are looking forward to it. The medical appointments start again tomorrow.