Journey

Exceptional surgeons have played a significant role in Rory being alive today.  In 2009 Neurosurgeon Mr Andrew Law removed the two tumors from Rory’s brain and last month Mr Nick McIvor removed the tumor from Rory’s lower jaw.  The only way we can show them the depth of our gratitude is for Rory to make the most of the gift they have given him, to keep on living a great life.

We met with Dr Nick yesterday.  He was very pleased with the outcomes of the operation; complete removal of the tumor, high level of functionality post-surgery and good healing process.  There is one area of skin under tension below Rory’s left ear which is taking a little longer to heal.  Dr Nick explained to us they had to remove the top (condyle) of the lower jaw (mandible) at the temporomandibular joint.  They sutured the top of the reconstructed lower jaw to the joint but it may have moved.  There is a large hard bump by Rory’s ear.  There is also swelling which will take 6-12 months to completely resolve.  Rory’s upper and lower jaw no longer meet.  When he closes his jaw his top teeth are inside the bottom ones.  Dr Nick told us at some point in the future they can operate to improve jaw alignment to give Rory greater comfort and for cosmetic reasons.  The thought of further surgery caused fluttering in my stomach.  I have put thoughts of this aside to be dealt with at a future time.  Dr Nick also told us the nerve which services the left-hand side of Rory’s lower lip, jaw line and lower ear was contained within the mandible and threaded through the tumor so it had to be removed.  The result is these areas will never have any feeling.  There may also be some numbness on the left-hand side of Rory’s tongue.  This poses some challenges when eating and drinking.  Rory can only sip through a straw using the right-hand side of his mouth.  He cannot feel a cup or spoon or food on the lower left.  Dr Nick hopes the nerve controlling Rory’s left eye and eyebrow will heal with time.  Dr Nick will check on Rory again in two months.

We also met with Dr Stephen.  He told us the five nodes which were removed from Rory’s neck and face were all clear of cancer.  We discussed the chemotherapy treatment plan which will run for the next 20 weeks until the end of June.  There will be short periods at home with longer periods at Starship.  Rory will have a scan to check he remains clear of cancer, and to see the results of the operation, when we return at the end of February.  Between chemotherapy cycles we can expect Rory to be neutropenic (no immune system).  His platelets (tiny blood cells which help your body form clots to stop bleeding) will decline and take time to recover.  We also need to keep a watch for mucositis (inflammation and ulceration of the digestive tract).  There are levels Rory’s blood needs to reach between cycles before chemotherapy can begin again.  The further along the treatment plan Rory gets the longer it will take for these levels to be reached. 

The trip to Auckland on Tuesday was uneventful.  It is a challenge finding Rory something to eat while on the road as he is still on a minced/soft diet.  On Tuesday afternoon Dianne from Hearing House came and checked Rory’s cochlear implants.  All is running well.  Yesterday we saw Dr Nick and Dr Stephen and Rory had a cardiac echo to check his heart function.  Rory was admitted to Ward 27B after dinner last night for hydration (IV fluids).  Unfortunately his port had to be accessed three times in the last 24 hours.  One of the connectors on the line came off before dinner so the whole port had to be replaced for hygiene reasons.  During the night the same connector on the replacement port came off and leaked blood and fluid into the bed.  The port, Rory’s clothes and all the linen needed to be changed.  Sean stayed last night on the ward and got little sleep.  Rory is unhappy about returning to Ward 27B for more chemotherapy.  I can completely understand this.  It is week 19 of treatment.  Rory had nine months of cancer treatment in 2009 and has spent significant time in hospitals over the last 10 years.  Mentally and emotionally he needs to come to terms with what is ahead but it is difficult.  It is a lot to ask of anyone let alone a 17 year old boy. 

Today we would like to acknowledge and thank our employer, Taranaki Regional Council, for granting Sean compassionate leave so he is able to help support Rory when needed while he completes his cancer treatment.