Sean's Journey

Greetings everyone,

This will (almost certainly) be the last and final post for this blog. If you need to get in touch with me, go to www.markternent.co.nz – I will likely keep that URL going forever. You can also get in touch with Catherine via me (although please note she helps out a lot with the Child Cancer Foundation – central region).

This blog served a very important purpose for us when Sean was battling cancer, and for the immediate aftermath. But life has moved on, and it is time to draw a line under this chapter in our history, and in Sean’s history. I know this blog has also served a purpose for others too, and we are glad about that.

In particular – a big and genuine ‘THANK YOU’ to those that supported us. Most of us go through trials of some sort in our lives and we need the support and love of others. Thank you. Thank you for your emails, postcards, blog comments, food parcels, and everything.

So, that’s that bit out of the way. Now, for a final update on Sean.

In short, the cancer is gone, and we are living with the ongoing after effects of the treatment.

There has been no sign of the cancer for some time, and the doctors at Starship Hospital told us about a year ago that they don’t need to see him again. This is obviously great. Regular readers may recall articles saying that ‘Anaplastic Large Cell Lymphoma’ come back quickly and viciously if it comes back at all. Well, it came, then it came back, and now it’s gone.

I don’t want to go into a lot of personal detail about all the after effects and what have you. Sean is now just over 11 and a half, and he thinks and comprehends at a different level that he did when this blog was being written. But if anyone is reading this and using it as a part of research into their own child’s illness - feel free to get in touch and ask more. Sean is Ok with this being the final post – he was little when he was sick and this blog did not mean for him the same as it meant for us.

Let’s just say that he is doing well, there is a comprehensive on-going monitoring regime, and there are on-going health issues to be dealt with. None of them are major on their own, but they do add up to (still) quite a few doctors and hospital appointments, blood tests, scans and the like.

But we often say that with the cancer and all the bad stuff it brought, there have also been a great many good things too. The support we received from people for one, but also other stuff – Sean has been going away on the annual ‘Camp Quality’ camps for the last three years. Previously he did not want to do this, and the fact that he now is, is a sign of his recovery. So, thank you to all the businesses and people that sponsor this event. Camp Quality has been an important part of Sean’s recovery, long after the cancer has gone. He got to meet Josh Kronfeld last year, and regularly goes off here and there and does things and meets people. Most kids don’t get these opportunites, and we are grateful for them. Some Wellington artists (The Jean Blackmore Gallery, Shelley Bay), gave short ’scholarships’ to four cancer kids and Sean throughly enjoyed and benefited from the guidance of Anna Stitchbury and the others (he loves his art). Recently, Nice Blocks Ltd (a kiwi ice block company) challenged child cancer kids to come up with a kiwiana flavour for a new ice block and Sean won this national competition with his ‘feijoa and ginger beer’ flavour. He goes to Auckland soon to visit the factory and see it in production.

Cameron has also been going from strength to strength. He is now 15 years old! He is into his second year at college (and of course he was homeschooled prior to that) and doing very well. He is a regular Canteen volunteer, and also goes off to  their camps and the like – Canteen has been very important for him. This weekend he is off to an ‘empowerment’ course in the south island via Canteen.

Sean is still homeschooled, however it is likely he will end up in college in his Year 9 (2014). By the way – it was Cameron who asked to go to school. The homeschooling was great and we’d do it again, but for us it is very good that Cameron is now in college and Sean contemplating it.

So once more, a big THANK YOU. And it remains only for me to say…

Be awesome,

Mark

Here’s a shot from December 2011 – it’s Sean just after he won ‘sportsperson of the year’ in his soccer team. Big brother Cameron looks proudly on….

Greetings,

Sean has entered and won the local (Kapiti) Lego competition with a creation he has called ‘Steve’.

He wrote a little blurb which he attached to his story and which reads … “One dark, stormy night in the Lego Lab arose a walking, talking lego machine.  I give you Steve and his friends!!”

He won $100 to go towards Lego. Next stage is for all 37 of the regional winners to be judged and the overall winner will go to Legoland in California! Sean tells me just now that “Legoland in California is actually the best, but it is not the original”. It has been Sean’s wish to go to Legoland for a long time, so he is very excited about this prospect – and very proud to have won with his own creation!

Be awesome,

Mark

Here’s Steve and his friends. There’s a lot going on!

Here’s the entry form - as you can see it is quite big to capture all the detail…

… and here’s Sean with owner of our local Toyworld have just presented Sean with the Lego set he chose as a prize. The owners name is Steve, however Sean says the robot was not named after him. Sorry Steve, lol!

A new look to Homeschoolblogger! Congrats and thanks to the team for making the move for us all. Please note you can now subscribe to updates via RSS – meaning you’ll get told when there are updates to the Blog.

From a recent hospital appointment with an Endocrinologist, there is some concern over Sean’s growth, or rather his possible lack of growth. Next steps are a series of tests. Sean has been seeing a psychologist to help him prepare for the physically invasive side of the tests.

Also coming up in the next month or so are a series of cognitive tests. These are routine for someone who has had so much cranial radiation, and will set a benchmark for comparing future tests results with over time.

Aside from that, he continues to be well! Except for a particularly nasty runny nose that is! Winter is coming on.

Sean is also very much enjoying his 10 pin bowling. The local lanes complex has coaching for kids on a Sunday morning (at no cost) and with great coaches – Roger and Sean, and he is always keen to go, and gives it his best shot! He is certainly improving – getting a 98 last weekend and quite regularly at that level. I’ll get some photos for the next blog article.

Be awesome,

Mark