Villains Or Superheros?

Elijah's first summer swim without his Hickman line!

You may or may not have noticed my blogger absence over this wonderful summer? With every intention of keeping you more up to date with the goings on of our son, Elijah, I have instead kept him all to myself and now, I'm sorry to say, I'll have to start over again as to cover the summer events is far too much of a daunting task for a busy mummy like myself :)  You can be rest assured though that it was filled with everything a childhood should be filled with like swims in the pool/on the beach, a refreshing trip up north, eating barrels of fresh peaches, a trip to Whakatane to see the Grandparents, swinging on the porch and watching mum and dad work in the vege garden.  Steve started work again this year running camps next door.  He's enjoyed getting back into the swing of things and has had some of his best camps yet.  I've officially finished at Dingwall now to look after Elijah full time which has been some what of a relief.  Things have just been getting better and better and we've been blissfully pretending that the tumour never existed.

Elijah and Granny on our trip up north

 I hadn't even felt daunted with the approaching MRI. At the meeting with our Oncologist I'd even forgotten that we were going to get our results, silly me.  I was brought back to reality kicking and screaming when the Oncologist asked us if we'd noticed any changes in Elijah lately??  There it was, that seemingly innocent question, so loaded with meaning it sunk to the floor.  Ok, that was a little dramatic, I know, but you get my drift.  It wasn't long before he informed us that, yes, the tumour had in fact shown growth.

Oupa and Elijah

In anticipating this outcome after leaving hospital in October we had gone through our different options and made a plan for each outcome. Tumour doesn't grow back - yay. Tumour grows back, surgery? No- surgeon has done all that he can the first time round. Tumour grows back, chemotherapy? No - no research done with chemotherapy on this type of grade one tumour before. Not putting our son through so much having no idea of the effect. Tumour grows back, radiotherapy? No - minimum age usually 3 and then it can still cause serious long term damage to the brain. Tumour grows back, we leave it to take it's course and pray it doesn't. The plan was set a few days after leaving hospital and a burden was lifted.

         But God's ways are not our ways and he knows the plans that he has for us, declares the Lord!  Staying true to character he threw us a curve ball allowing a beacon of hope. Elijah's original diagnoses of his tumour was such a rare one that a specimen was sent to America for a second opinion (from his second or third debulking, where the surgeon also mentioned that the re-grown tumour looked different from the first time.) The night before our Oncologists meeting the results of this second opinion came through stating that they didn't think that it was a desmoplastic infantile ganglioglioma (DIG) but in fact a juvenile pilocytic astrocytoma (JPA - still a benign grade one tumour) which is the second most common brain tumour in children. Which means that a lot more research has been done and we now know that proceeding with chemotherapy gives us an 80% chance of it stopping the growth of the tumour (not sure for what period.) So while Elijah decided this was a great time to stink bomb the room with an impressive turd we were quickly acquainted with the drugs Vincristine and Carboplatin which I'm sure sound much more like names of Transformers or comic book villains!  Well, I guess we'll find out the true nature of these drugs over the 18 month course if we decide to go ahead with it.

So there it is.  Our bad news wrapped and delivered with a ribbon of good news.  Elijah will be getting a new line in next week, one that he can still bath and swim with and will be getting his first introduction to the 'villains' on Friday.  Thankfully we're able to stay at home during the course of treatment so our sanity will be somewhat preserved. Ok so, I know this has been a long one so I'm going to leave it at that for now.

I just wanted to update my blood donor list and say thanks again to all those that donated their blood on behalf of Elijah!

1) Ruth Wigglesworth

2) Tim Twigden

3) Rachael Trengrove

4) Natalie Grimmer

5) Hans Kraenzlin

6) Steven Barnard

7) Me (Steve and I plan to when we're eligible in December!)