2014

6 months of treatment to go. When James was first diagnosed with Leukaemia in 2011 I was full of angst and dread and wondered how I was going to get through this.  James has surprised us all with his resiliency and courage.  He has overcome so many barriers and is living life to the full.  He is starting College in a few weeks and will begin the next chapter in his life.

Here are some of the events of the past year:

-     In May my good friend Nic Johns climbed the sky tower in full fire fighting kit to raise money for the leukaemia foundation and dedicated her climb to James. James visited Nic at the Wainuiomata fire station to find out what it's like to be a firefighter (photos attached). 

-    In July we travelled to Scotland to visit family.  James met his Great Uncles and Aunties and travelled around Scotland visiting the sites.  He remained healthy on the journey and had a great time getting to know his extended family (photo attached)

-    James said goodbye to Wainuiomata Intermediate in December.  He received a school award and attended his first school dance (photos attached).

The fight against cancer is ever present in our daily life and although James will finish his treatment this year it will always be in the back of our minds that it can return.  I am thankful for  the awesome doctors and nurses and for the continued support of family, friends,work colleagues and the child cancer foundation.

God Bless

Rugby Season has started

Wow I cant believe that nearly half the year has gone by and I haven’t updated James blog.  Maybe its because it feels like he is back to his old self and I didn’t want to be reminded of his illness.   This year James has faced many challenges, including attending school fulltime and playing rugby again.  I was so excited recently when James got a try in his very first game of the season, not only because he scored points for his team but because it meant that he had completed another milestone in his recovery.  Check out the photo his sister, Alofa took of him.

 

James is now half way through his maintenance stage of treatment and is tolerating his chemotherapy very well.  He has also been very healthy apart from a few hours spent in hospital with a suspected viral infection a few months ago.  Another significant milestone in James recovery is that his bone marrow biopsy results have all been clear with no cancer cells detected.  I am so thankful to God and to everyone who continues to pray for James in his recovery. It is not over yet but with every clear bone marrow biopsy James is nearer to beating this horrible disease.

A year has passed

It has been a year since James’s cancer diagnosis and with that came all the fears and anxieties of 21 November 2011.  Throughout this time I have always tried to remain positive and strong but in the last month all I wanted to do was eradicate the memory of that fateful day.  Now that it’s December I can utter a big sigh of relief that the day has passed without a hitch.

 

James has improved leaps and bounds since my last entry.  He is at School most of the week and is enjoying the company of his class mates and feeling a lot more confident in himself.  He still gets tired, sore legs and sore tummies, but for the most part he is feeling really good.  The Consultant  is very pleased with James’s progress but I am still reminded that there is an 80% cure rate for this disease and that every bone marrow biopsy will be an indicator of that success.  There is 2 years of chemotherapy treatment to go with another 3 years of clear results and then we can safely say that the cancer is gone for good.

Much Love x

End of Round 1 of maintenance

On 25 September it was the end of round one of maintenance and the removal of James Hickman Line!  The day started with getting up around 6am as we needed to be at the hospital at 7.30am for surgery.  We met three different doctors – the anaesthetist, the doctor doing the bone marrow biopsy, and the doctor removing the Hickman Line.  James was second on the list but didn’t go into surgery until about 11am.  When James woke up after surgery he was feeling really sleepy, so we didn’t leave the hospital until about 3.30pm.  For the next few days James was not feeling very well, I think in part due to the anaesthetic, he vomited a few times and was very tired.  There are some of the photos from that day in the photograph tab!

School and Choppers

It has been a couple of months since my last update and James is doing well.  He is managing about half a week of school at the moment but I am hoping it will increase next term.  He does get quite tired and has been having tummy aches and a few mouth ulcers as a result of the chemotherapy and he still struggles being around so many people.  It is hard to know when to push him to do things and when not to as he has been through so much and he still has 2 years of treatment to go.  On the other hand James needs to get back to a some normality and gain confidence again.  In the meantime I have decided to just go with the flow because in the scheme of things this is nothing compared to what he has been through and what could have been. 

 

Since the last update, James, Alofa, Ria, Tali and James’s friends Malua, Jade and Hayden,  went to Pak n Save in Petone on 6 September where Josh Kronfeld and Shane Cameron rode from Auckland to Wellington on Choppers to raise money and awareness for the Child Cancer Foundation.  Check out the photos on the photograph tab.

Back at School

I have thought long and hard about James schooling, particularly since he is immune compromised.  James hasn’t attended school for more than 8 months and this year he was due to start a new school - Wainuiomata Intermediate.  Education is extremely important, and although James has had the lovely Lisa from Southern Health School teaching him twice weekly, he hasn’t mixed with children of his age for a long time.

When James was going through intensive treatment he picked up bugs really quickly and would spike fevers and that was without mingling with other children, so the thought of him going back to school with around 400 other students and the potential for picking up bugs – scares me.  Since starting this next stage of treatment James has been really well so it is in his best interests to go back to school and last week he did.  Unfortunately it hasn’t gone as planned so we have decided that he will attend school three mornings a week with 2 weekly visits from the Central Health School Teacher, Sue.  At the end of August we will review this and decide the next step to take.  On an upside he is on his full dose of oral chemotherapy and appears to be coping well.  He has also started his drumming lessons again and is enjoying catching up with his mates in the weekend. 

Maintenance Treatment has started

James has finally started maintenance therapy at half strength.  He was due to start it on 21 May but because the chemotherapy has given his bone marrow a good hiding it has taken it longer to recover.  Because of this it was decided that he start maintenance at half strength.  The doctor told me that the chemo is obviously doing its job and not to worry.  So James is on day 6 of treatment consisting of Tretinoin (Attra) 10mg, Mercaptopurine 50mg, and Methotrexate  10mg.  James still has his hickman line and will continue to have weekly dressing changes until the doctors say it can come out.  This week James will start back at school for the mornings only which is another step at getting back to some normality.  It is important for James that he also mixes with other kids his age as he has spent a lot of time in isolation with his close friend PS3!  I am looking forward to seeing James enjoy school again and will update you with the news soon.