Journey

The warrior who trusts his path doesn’t need to prove the other is wrong (Paul Coleho)

This week we made a trip to Auckland for a review of Rory’s facial reconstruction. 

Rory and I met Dr Jon, Associate Professor of Plastic and Reconstruction Surgery, at Greenlane Hospital.  After examining Rory he was quite optimistic about what surgery would result in for Rory; better alignment of his teeth to improve chewing, improved symmetry of his face, repair of scars and dents.  He thought Rory would only needed fixation of his jaw following surgery with guiding elastics (like rubber bands used for braces).  I came away feeling like he had waved a magic wand. 

Rory’s lower jaw is displaced sideways at the joint because we didn’t fix it in place during surgery in January 2020.  This was because we didn’t know how he would cope with the operation and how long healing time would be when we needed to get on with chemotherapy.  As a result Rory has a cross bite and an open bite.  This affects his ability to eat.    

On Friday Rory and I spent most of the morning at Auckland Hospital at a MDM (multi-disciplinary meeting).  Rory had a 180 dental x-ray and was visited by a range of specialists who spoke to us and examined him.  At the end we met with Dr Nick, the surgeon who removed the tumour from Rory’s jaw.  He was a lot more pessimistic than Dr Jon.  He said he wasn’t sure surgery would help the things we want it to help i.e. improvement in the mechanical breakdown of food (chewing, lubrication with saliva and swallowing).  For Rory the process of eating is complicated by a dry mouth due to radiotherapy and impaired co-ordination of swallowing from the cerebellar ataxia.  The realignment of Rory’s jaw would be a complex surgery, taking all day with a team of specialists.  They would need to take the plate off, dissect the jaw cavity, cut the bone, realign his jaw and undertake the cosmetic procedures.  His jaw would need to be fixed for at least six weeks (with wire or elastics) and he would need to be tube fed through either the nose or stomach.  He may require a tracheostomy to breathe if he felt claustrophobic and didn’t get sufficient oxygen through his nose.  Dr Nick made reference to the initial opinion of the team on Rory’s case when they said it was inoperable.  Rory is alive 2.5 years later and NED.  The reconstruction has healed remarkably well and they were amazed at the amount of functionality he has, especially mouth opening.  Dr Nick is very aware of how much Rory has been through for a young man.  It was very sobering. 

For me, it has been hard to digest and make peace with the contrasting opinion of the two doctors.  For Sean and I surgery would be justified if there was improved functionality across Rory’s lifetime.  However, when Rory spoke to the doctors it was clear for him improvement in appearance was also important.  He had hopes of appearing more ‘normal’.  Unfortunately Dr Jon and Dr Nick had not had the opportunity to discuss Rory’s case.  They plan to do so in the next month and then we will have a zoom call to see if a path has appeared.  This time delay will give Rory, Sean and I a chance to process what we heard.  When asked about what he wanted Rory said he trusted the doctors to make a decision which was best for him.  He trusts his path and so we need to do the same. 

We managed to fit in the clinic appointment with Dr Stephen which we missed a couple of weeks ago.  We have a relationship with Dr Stephen which spans 13 years so it is always great to see him.  Dr Stephen commented on how, at almost 3 years post diagnosis for secondary cancer, we have the best possible outcome – Rory is alive.  He also referred to the day in September 2019 when he delivered the news to me that Rory’s tumour was inoperable and he was terminal.  It shook me to the core and obviously had a big impact on Stephen too.  Going forward Rory will need 6 monthly x-rays (head and chest) for the next 3 years.  X-rays deliver a lower dose of radiation than a CT scan.  We need to continue to watch for recurrence of osteosarcoma.  We will catch up with Dr Stephen in a year. 

While in Auckland we stayed at RMH Grafton Mews.  Covid19 has meant families need to be segregated so the house doesn’t have the same sense of family which it used to which is sad. At night we saw the Sky tower lit up in multiple colours for its 25^th anniversary and Auckland Museum lit up in blue, red and white for Cook Islands language week.

In addition to a whirl wind two days in Auckland Rory had a visit at the gym from Josh, the ACC physio to see the programme Dane has established.  Josh will look to make minor modifications which will be beneficial.  We have completed a 3-day food diary for Sheila to assess the nutrition and calories Rory is receiving.  The specialists in Auckland also noted his weight loss.  Rory had a Renogram at Taranaki Base Hospital to assess his kidney function.  We are waiting for the results.