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.    

Photo Gallery

1/03/2010  Elijah's 3 week trial at conductive education.  Didn't continue due to starting chemo.

20/03/2010  Riding in style to Nat and Matt's wedding.

23/03/2010  Great little flyer. 

29/03/2010  Too cute!

2/05/2010  Even cuter.

6/06/2010  Lovin that food!

16/05/2010  This little piggy!

30/05/2010  A family photo at last.

A Line Of Time

It's now been over a year since that horrible day Elijah was diagnosed with a brain tumour!  I can't say that it's gone quickly, in fact it feels like it was years ago when that happened.  But here we are counting our blessings with a 'beautiful bonny boy' - as my Nana used to say - and that was when he was a skinny wee thing.  If only she could see him now! 

I've written a brief timeline of events from the past 5 months to avoid writing a novel and will end with a brief update on Elijah...

12 March - Start of chemo.

15 March - Elijah refusing to eat or drink and vomiting.  Hospitalised to prevent dehydration.

17 March - Elijah out of hospital and improving.

19 March - The three of us fly to Marlborough Sounds to attend my good friend's wedding.  Elijah back to 'normal' and loving being out and about.  We have a great time away.

24 March - Fly back home to continue weekly chemotherapy.  Generally for the most part of the week Elijah is grumpy, unsettled, tired and waking constantly at night.  Constant mood changes, happy one minute and upset the next.

13 May - Elijah fell head first off the couch and had a very unsettled night.

14 May - Discovered huge swelling on Elijah's forehead due to a low platelet count so I took him to hospital.  Elijah deteriorated quickly with a fever, dehydration, swelling forehead, very swollen and chapped lips.  He was put on IV antibiotics immediately, re hydrated, CT scan to check internal bleeding which there was none and given a platelet transfusion.

15 May - Elijah quickly improved, cultures shows no infection and is allowed to go home.

19 May - Clinic appointment where Oncologist reveals results of Elijah's CT scan showing no tumour growth in comparison to his previous MRI and an actual reduction in size of the cyst that was growing from the tumour... CHEMOTHERAPY IS WORKING!!!  (Bearing in mind a CT scan is not as comprehensive as an MRI and the expected results of the chemo is to stop the growth of the tumour and not get rid of it all together.)

2 June - Chemo stretched to 3 weekly allowing Elijah's body more time to recuperate between doses and Elijah becoming much easier to manage.

23 June - Chemo stretched to 4 weekly.  Generally 5 days after chemo Elijah's back to his normal happy self.  Sleeping slowly improving.  We are (I am) currently averaging getting up only twice a night which is amazing:)

Developmentally Elijah is continuing to slowly progress.  Physically he is now able to swivel around on the spot when sitting, sit up from a lying position and the most recent, most exciting thing is that he will now stand up supported and weight bear which is a massive achievement for him!  He is even starting to pull himself up off his bum and then always smiles and looks around to make sure someone is watching how cleaver he is:)  He hasn't progressed with his speech at all but has a level of understanding now which is so lovely to observe.  We have taught him to point to different body parts on command, poke out his tongue, twinkle his toes, raise and drop his arm, lye down and various things like that.  He's doing so well and we have so much to be thankful for.  We have also recently moved out of Kaiaua but I'll tell you all about that in my next post... so until then my friends, keep well.

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!)

Guess What?

Guess what?  Elijah's having his Hickman line out today!  I'm so excited.  It's going to be baths every night from now on.  I love clean babies, haha.  We just found out yesterday that he should be getting it done about 1:30pm today, finally!  So we'll be heading off to Starship soon.

Apart from the odd day Elijah's just been doing so well and I've been getting that proud parent feeling as Elijah makes his little advances and discoveries, like when he discovered self-will and the moment he discovered he had nostrils and that he could blow raspberries again and, how can I write it?, brr brr brr with his little fingers against his lips.... arrh it just warms my heart:)  But none of those discoveries compare to the major advancement he had the other day when I put him on his back on the mat and gave him a little push in the opposite direction to the side in which he usually rolls.  A little light bulb went on somewhere in there and a few minutes later after a few strained grunts and groans he had it down and just started rolling back and forth non-stop.  We were all so excited, Elijah was loving it and you could tell he was very pleased with himself.  I had to laugh as later on that night when he woke up and was letting us know he wasn't happy he went into this chaotic screeching rolling frenzy like he couldn't wait to try out his new trick in defiant mode!

Ok, on another note, I have a confession to make.  I was planning it all out in my head of giving an update on the blood donor situation along with a list of people who've donated blood so far and I was going to proudly put my name right at the top of the list but sadly, folks, this won't be the case.  I'm embarrassed to say that I'm not eligible to donate my blood until the end of the year which would be 5 years after leaving South Africa where I lived for a year which is a high risk country for Aids... you can imagine my disappointment.  My mum couldn't donate because she has a bad cough and it seems like there are actually a lot of different reasons why people aren't able to donate their blood which leaves the list a little short at the moment.  Here's who we've got so far:

1. Ruth Wigglesworth

2. Tim Twigden

3. Rachael Trengrove

You guys are legends.  That leaves 4 more people and only 11 days.  Come on people, any more takers?  Don't make me resort to the phone!   

Anyway, I better get my skates on.  I don't have any new photo's for you at the moment but I'll work on that.  Have a great day.