Good News/ Bad News

Thursday the 16th of September

Elijah had an MRI and the Dr phoned us the next day with the results.  It was confirmation that the chemotherapy has stopped the growth of the tumour and has also considerably shrunk the cyst (a sort of fluid sack) that had grown from the tumour since his debulking operations.  So praise the Lord for that!   8 months of treatment down, 10 to go.

Wednesday the 22nd of September

I took Elijah into Starship for a routine dose of chemo, carboplatin and vincristine.  We must have been about half way through Elijah's infusion when he started having a severe allergic reaction to the carboplatin.  He started getting white spots spread across his forehead and was being very agitated so I buzzed the nurse.  He went pink in his face and all over so I took his top off.  He was very pale around his eyes, nose and mouth.  The nurse didn't say much but stopped the infusion and went to get the Dr.  When she came back Elijah vomited and then I'm not sure if he passed out or just went to sleep in my arms but the Dr wasn't really saying anything just getting the nurse to some tests on Elijah so I was just kinda thinking 'what's going on?' to myself.  Anyway, after a few minutes a few of the oncology Dr's came in and started treating him with this, that and the other thing for an allergic reaction and things started to calm down.  Apparently 40% of people receiving the carboplatin develop an allergic reaction to it over a period of time and won't be able to use that drug again.  They said that there's a substitute drugs to use but still haven't heard what the new plan is for Elijah.  

Elijah slept for ages after that and we had to stay the night in hospital.  At least we're on a ward now that provides beds for the parents to sleep on!  Our days back on the neurosurgery ward (ward 26a) I'd only have a bed to sleep in if we were lucky enough to have a room to ourselves.  Speaking of ward 26a you might be interested to know that they are having a much needed total refurbishment starting at the end of next year.  I'm so excited about that because I know how badly it's needed.  The place we go to now - ward 27a/b was redone a couple of years ago and is very flash so I'm glad we get to benefit from that.  

Elijah recovered quickly from the ordeal and has had a pretty good week.  He's still hard work but is doing so well at the moment.  Making lots of new exciting developments that make us smile:)  

My brother, Chris, has just finished designing invites for our celebration party we're having here on the 9th of October.  Elijah turns two on the 4th which marks one year since we left our admission to hospital in 2009, something to celebrate for sure!  Even if you haven't met Elijah or you have only briefly it would be great to see you there!  All welcome!  If you don't have an invite and are thinking of coming let me know (eleanor_barnard@hotmail.com) and I'll e-mail you an invite with the details.  Yay, I can't wait. 

P.S.  I've got some cute photos I'll post soon.         

5 Alive!

All is quiet in the house except for the rumble of the dishwasher and the sound of radio waves swirling around inside the baby monitor.... not to mention the odd aeroplane flying overhead and the familiar sirens we've come accustomed to again.  The house we're living in now didn't take much getting used to as we lived here for two years before moving down to beautiful Kaiaua.  Falling asleep to the crashing waves and waking to stunning sunrises in our slice of paradise has quickly become a distant memory as we settle into our new life here in Papatoe. 

We thought we had hit the jackpot down by the beach with a prime location, sweet job and then with our new baby in tow life couldn't get much better ... and when all those ideals and expectations hitched a ride down hill with a run-away train we were left thinking why has this happened to us?  I remember our surgeon trying to explain to us that it wasn't our fault, and that, we had hit the unlucky lottery... but we are not the unlucky type, we had been so blessed by God.  Obviously unsatisfied with that answer I kept asking myself (or asking God) why has this happened?  At hospital and back at Kaiaua I've had a lot of time to think about for what reason does my child have a brain tumour?  If it is for no reason then I might as well die.  If it is for a purpose then for that purpose I will live.  Like I said, I had a lot of time to think, maybe too much time.  I've thought about it around in circles and back again.  I'd love to just write and write about all those revelations I had in returning from hospital but that is not the purpose of the post today.  Maybe I should just get to that...

We had a few contributing factors for us reluctantly deciding it was probably time for us to move on from Kaiaua and we had a couple of options to accommodate moving closer to a hospital and out of quite an isolated little town but the more we considered moving away the more we realized the strong attachment we felt with many of the kids we'd been working with at the camp for over the past 2 1/2 years.  Most of the children we worked with have been permanently removed from their parents and are living in the children's home in Papatoe so we would get to see them regularly.  Although we had many challenging times with them we got to know them really well and developed some great relationships.  How could we then turn around and say goodbye?  We started talking about the what ifs and started day dreaming about the possibilities.  It really felt like a God thing when one of the children's home staff members asked us if we would ever consider taking any of the children permanently!  And more specifically the same ones we were thinking of.  Well, that was back in the beginning of the year and now, 9 months later, here we are.  Blessed with another 5 more kiddies instead of unlucky with one.

Since our new family has been living together I haven't had as much time or brain space to think about my life and I've gratefully excepted the distraction.  And once Elijah settled down after having a bad cold the first week and a week recovery from chemo in the second week he's just fallen in love with his new brothers and sisters.  He'll be sitting in his high chair when they come in for breakfast in the mornings and he'll look at them and say "hi" quietly with a smile and continue saying hi until he gets a response:)  He's benefiting from the stimulation big time.  In the last few weeks Elijah's finally got his butt into gear and no, not crawling, but butt shuffling around and loving the mobility!  He's finally in a decent sleeping routine during the day and in the last few days he's been saying baba and mama.... FINALLY mama!  Haha.

We are still working under the children's home and being supported by them which is amazing but we can't help but talk about the what ifs and day dream about the possibilities.  In as uncertain times as this we can be certain that it's in God's hands, we know that much.

Ponder this:  Would God give up the life of one child if it meant saving the lives of 5?  When you put it like that it almost seems like a no brainer... if that's the way it had to be then of course he would.