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.     

Elijah's Christmas Wish

I've been meaning to say Merry Christmas to all for a little while now but I've been caught up in decking the halls and holiday cheer, slipping right into that good ol' holiday feelin' of sunshine, swimming and non-stop eating.  We've had a great time so far, we've had a few really good days with fatty Elijah and amazingly he has even slept through the night twice in the last two weeks, I would say.  There is hope yet!  But seriously now, I would like to say a big MERRY CHRISTMAS from the Barnard family, we can't thank you enough for all the prayer and support we've received over the past year, it's been truly touching.  So much so it almost feels ridiculous that I'm about to ask a favour from the people that have already done so much! 

During Elijah's stay in hospital Elijah had between 4 and 7 life saving blood transfusions!  The reason I say between 4 and 7 is because we're not sure of the exact number.  We know of 4 definites but his 'beads of courage' tell us he's had 7 so to cover all basses we'll just say 7, plus 7's a good number, haha.  There is no doubt that Elijah wouldn't have made it through the lengthily operations without the generosity of a kind stranger donating their supply of blood.  I remember when we were first in hospital talking about doing the first debulking and thinking how is Elijah's body going to get through a huge operation when he can't even sit up or roll over now?  And the truth is he wouldn't have without the transfusion.  If any of you had seen him at the time you would understand, it was a real nerve wrecking time.  I've added in some old photos of Elijah from that time, just after his first debulking operation back in July so you can see what he looked like back then.

So something I've always wanted to do, even before our hospital days, and have never got around to actually doing is donating my blood and I thought, since it's something I've been meaning to do then maybe there are other people out there who've been meaning to do it too or would be prepared to do it too, if I asked.

 

So to put it plainly this year Elijah's Christmas wish is that 7 or more people would donate their blood to a blood bank on behalf of Elijah Barnard by the 28th of January 2010, a month from today.  The great thing about this Christmas present is that it doesn't cost anything and it could even save, not just one, but THREE  lives!  There are so many horrible things happening around the world and one of them is sick children and adults having to spend the Christmas holidays in hospital.  Please don't forget about them, as it easily could have been us!  If it's something you've considered doing before but just haven't got around to it then don't put it off again, just do it and then give me an e-mail - eleanor_barnard@hotmail.com - so I can add you to my list to see how many people we can get to donate blood.  

PS.  There are blood donor centres throughout the country and also mobiles collecting from different places this month and next month.  Check out www.nzblood.co.nz (or www.sanbs.org.za if you're from SA) to find out if you are eligible to give blood and for further information.

PPS. Happy New Year. 

Meet Elijah's Hickman Line

The other day I heard Steve comment to someone that these days Elijah has more good days than bad.  The switch must have snuck up on me and over taken the bad days without me even realising it because it took me a moment to think, process and agree that yes, in fact Elijah's days are mostly good now and good days with Elijah are great!  Nights on the other hand are another story!  For the first time the other night since hospital (which was over 2 months ago now) Elijah only woke up once during the night.  He took another 2 hours to go back to sleep that time, which is unusual, but the point is he only woke once!  An average night would be 5 times and other times on the hour.  It's unpredictable, always changing and tiring but makes for good conversation, ha ha.  I have to tell you this story....

OK, let me set the scene just quickly.  The curtains in our house are really thick so when it's night time it's pitch black and it's for this reason, no laughing yet please, that we have a night light in our room, and a night light in the hallway so when we get up during the night there's no fumbling around in the dark, OK.  So, the other night when I got up to Elijah, I was real tired and still half asleep, like usual.  I went into bubs room, checked he was OK, rolled him over, put the dummy in his mouth and he went back to sleep.  When I came out of his room I noticed that it was pitch black and that I couldn't see anything.  As I neared the corner into our room, I could see again and I was like, Oh my gosh!  I must have had my eyes closed without knowing it!  Ha ha, I couldn't believe I was practically sleep walking around the house but then as I neared our bed and saw the flashing clock/radio on 12:00 I realised that there had just been a power cut from the time I'd gone into Elijah's room to the time I'd walked back around the corner.  Silly, tired me.

You might remember one huge problem we had with Elijah in hospital was his constipation due to all the antibiotics and morphine he had combined with other contributing factors.  Well I'm happy to announce that this is finally not a problem for Elijah any more!  I think this is real proof that his body is starting to really recover from his stint in hospital.  So that's 2 meds that he doesn't have to take any more and I'll pass on this handy tip if anyone has a littlie that may need a little help now and then in this department.  Golden kumara (sweet potato) and brown sugar (not together) really do work wonders, the best advise our Oncologist has given us.  Another interesting thing I wanted to mention was Elijah's finger nails (and toe nails) after we left hospital you could see them grow out as they had a line across the nail that separated the new, normal nail and the old nail which was marked by all the drugs and was raised and yellow.  The nails on Elijah's right side have finally grown out leaving normal nails behind but the nails on his left side have grown out half as slow and are still showing about 1/4 of the old nail.  I was going to photograph them to illustrate what I'm talking about but his finger nails are still so tiny!  I think this proves that Elijah's whole left side of his body functions are undoubtedly slower/worse than his right and with Elijah still not crawling or walking it could take a lot more time and therapy than we think until Elijah is up and about.

Another thing that is really holding Elijah back is his Hickman Line. 

 Meet Elijah's Hickman Line.

He has had this in for about 3 months now, it was put in under anesthetic when he was in intensive care because they couldn't get any other lines into his veins.  This is a permanent port that is usually used for chemotherapy.  Elijah is on the waiting list to have it removed as he has to be under anesthetic again and no longer needs it at this stage.  I was really hoping it'd be out by Christmas but that is very unlikely now.  Although it was a life saver when we were in hospital as he can have all his medications through it and they can take blood samples straight from it, it's now just a huge pain in the behind!  We are advised against bathing with it and swimming is a big no no.  It's a shame as bath time used to be the highlight of his day.  If you have any spare prayers for Elijah to get this line out as soon as possible would be great, thanks.

Well I think that's enough for one post but stay posted as I have a Christmas wish on behalf of Elijah that I'll write about soon.  Thanks for reading.   

A Closer Look

12/7/2009 First MRI shows tumour in mid tone gray (boxing glove/mitten shape) in centre of brain.

15/9/2009 MRI after final debulking shows resection as black (fluid) in the centre.

12/7/2009 First MRI shows tumour as a white mass in the centre at a 'birds eye view.'

15/9/2009 MRI after final debulking shows re-section/fluid in black at a 'birds eye view.'