A Good Year

This time last year Elijah was being administered with a new chemo drug after having the allergic reaction to the first drug of choice.  The night before I had turned my back on the perfect view of the sky tower and the new years fireworks and tucked myself in tightly with my close friend, self pity.  It's a complicated matter giving a child extra hydration (water) who has no natural means of regulating their own fluid balance (diabetes insipidus.)  On paper Elijah was doing so well and was being congratulated by the well meaning endocrinologist (hormone specialist) on the other end on the phone.  But they weren't there changing the full nappy every 30 minutes and giving their child litres of water to drink listening to the monotonous grizzle.  In my book Elijah wasn't doing well at all and that's why we decided to stop the chemo.  The thought of repeating that procedure every 6 weeks for 9 months was too much to bare and so it's been one year since we finished chemo.

A lot has happen this year.  Elijah is doing so much better than we ever thought he would, he can now say over 30 words.  He had his port removed and his MRI from a few months ago showed a reduction of the tumour in up to 1/2 a cm which I've decided is a miracle as this is the first time it's ever happened and with no apparent explanation!  My older brother got married in August, another miracle, nar, just jokes Chris! We've had a new diagnosis of Hypothalamic Obesity from the endocrinologist which to put simply means he's obese due to brain damage in his hypothalamus region, which is very central and right next to the pituitary gland which has also been damaged, this is the body's hormone centre.  We have also had two different doctors tell us that Elijah probably does not produce any growth hormones which means he can not only grow too big but he could hit puberty at any stage!  We have been told that the growth hormone replacement medications are extremely expensive (so not many people get them,) and they can sometimes aggravate the tumour into growing again!  No thanks!  Elijah continues to be dependant on 4 medications:

DDAVP, a nasal spray given twice a day for diabetes insipidus, controlling urine output.
Hydrocortisone, given three times a day due to not producing any cortisol.
Thyroxine, given once a day due to no thyroid function.
Melatonin, a natural sleeping hormone to help him sleep at night.


Ok, so you might not be interested in all that but sometimes people ask me about it so I thought I'd just put it out there in case you are interested.


Now onto something a little more interesting!  Some photo's I've collected of Elijah over the past few months to show you what he's been getting up to:)

Say cheese! - September 2011
Elijah still not walking yet but doing some good standing!

Elijah at one of his weekly swimming lessons.  June 2011.  He can now walk all by himself in the water!



Story time with Grandad on holiday, July 2011.

Elijah's feelin the Rugby World Cup feaver!  September 2011

Hilarious!  Couldn't figure out how to get it the right way up though.

Lil' eskimo.  -September 2011

Elijah's first Guy Fawkes night.  November 2011.

The girls enjoying guy fawkes.

This hill is steaper than it looks.

Merry Christmas Elijah... enjoying his new sandpit!

Boxing day with Opa's shoes.

Christmas Eve at Browns Bay, 2011.

Rylie and Elijah, Christmas day.

We have had some tough times this year too aggravated by lack of sleep and the usual challenges that come with raising 6 kids (AKA character growth.)  Looking back 2011 has been tough but it's been a good year overall and I'm thankful for it.  I was reading through some old letters a while ago and came across a letter I'd written to God when I was a teenager.  In the letter I asked God to send me trials so in turn my character would be strengthened and I'd be closer with God.  I laughed at my stupidity and at the same time thanked him for answering my prayer.  With the journey we have been on with Elijah I literally feel like I've been to hell and back and can sometimes feel thrown back there by a haunted memory but had I not been through it all would I really appreciate what I have today?  Me and the kids wrote down a sentence or two about something that's special for us in 2011 or something we're thankful for in 2011 and I'd like to share them with you...

I am thankful for Elijah. I am thankful  for you Jesus dieing on the cross. Thank you for creating me. I love you Jesus.
-Rylie, 8 

I asked Jesus into my heart and asked for Jesus to forgive all my sins. It is very important that you follow the ten comandments.

-John, 9

I am thankful for Elijah's health and education and I have enjoyed Elijah's cuteness and how he talks funny (dupt dopt dupt dupt dupt.)  I thank you that Elijah has lived and will continue to live. I pray that you will continue to bless Elijah through the years. Thank you God for dieing on the cross. I love you God and my family and friends.

-Stephanie, 11

I am thankful for Elijah living another year. I am also thankful for the gifts we got on Christmas.
-Carmal, 13  

Ok, well thanks again for reading.  I wish you well for the coming year.
Eleanor
   
The unfailing love of the LORD never ends. By his mercies we have been kept from complete destruction. Great is his faithfulness; his mercies begin afresh each day. I say to myself, "The LORD is my inheritance; therefore, I will hope in him!"

Lamentations 3:22-24

Daddy

DADDY!

Happy Fathers Day Honey!  Yesterday I asked Elijah if he likes Daddy and he smiled and nodded and said, yea.  I asked him if he loves daddy and he did the same thing.  Then I asked him if Daddy was the best daddy in the whole world and he said yea again.  How cool is it that he learns to say daddy a week before Father's Day!  Like you said, you've been waiting years for him to say it and now he can, it's the best present ever!  And it just makes it all worth it, doesn't it:)  (all I need now is to get him to call for daddy in the middle of the night instead of mum!)   I just wanted to take this time to (publicly) thank you for all that you do for this family.  I know it's not easy being a father and sometimes it gets overwhelming but you have a wonderful natural fathering ability.  You make sure things are running smoothly around the house and bring others under your wing.  Thank you for getting up every morning at 5:30am to feed and play with Elijah.  Thank you for being patient with me and for being there for me and Elijah during the day too.  YOU, I LOVE!

Notes of Encouragement from me and the kids...

 I love the way you greet Elijah every time you walk into the same room as him, it's like you haven't seen him in a week!

I love you daddy, your the best ever!  (paraphrased, haha)

I like the way you play with us outside and in the pool during summer, it's fun!

I think you're cool and I like it when you take us out!

I like it when you tell stories about things that have happened, you bring a lot of fun!

I love it how you make biltong for everyone, it's the best biltong I've ever tasted!



Steve's home made biltong hanging in 
home made biltong box, mmm.

Also a very Happy Fathers Day to my dad and to any other dads who are reading.  May your fathering go well and be seasoned with joy.  P.S. I was going to end in Elijah's latest update but I think I'll leave that to another post.  Will try do it ASAP but that is all for now.  Chow.

Recovering From Chemo

Heading off down the driveway.

As I thought more about discontinuing the blog I thought about all you who have shared with us (even if just by reading!) in our journey since Elijah's diagnosis and in the call to prayer!  Many scary times when we weren't sure if Elijah would make it or not.  I'm sure you also shared in our grief, anguish, doubt, fear and hope.  Then I thought, how selfish it would be of me to not allow you now to share, also, in our joy after everything we've been through!  Even if it is just through reading...  So I hope that while you share in our joy, the Lord, MY God (the meaning of Elijah's name) is given the glory in answer to our prayers.  (That is God be given the glory not Elijah!)

Camping trip in March, just in time for the tsunami warning.

It's amazing how God reveals his strength in our weakness.  I think sometimes he waits for us to exhaust all our own efforts before he steps in to prove that he does have the power over our lives.  A scripture that comes to mind is Romans 8v28 'And we know that all things work together for good to them that love God, to them who are called according to his purpose.'  We have had such a tough couple of years it's really incredible to stand back and see how God had a plan and a purpose through all the trials he allowed us to endure.  Another scripture I like is Genesis 50v8 'But as for you, ye thought evil against me; but God meant it unto good, to bring to pass, as it is this day, to save much people alive.'  I really do believe that God can use the evil of this world and cause something good to come out of it.

Ok, now back to Elijah.  Since Elijah's been off chemo, about 6 months now, it's been a bit of a relief for us.  His sleeping has improved which has probably made the biggest difference for Steve and I although we are still getting up to him every night.  The frequent traveling to and from hospital has now ended which has given us much more time to do other stuff.  Of course we don't have the worry of Elijah being neutropenic around other children anymore and with all these changes I feel like I can breath again!  With having a sick baby for such a long time I finally feel normal again and really appreciate being able to be involved in 'normal' mum and bub activities.  I've even been doing some crafts and Steve has taken up wood work as a hobby.  (I've been supplying him with plenty of project ideas:)

Wood work project number 2: rocking duck!

We are still looking after the five Dingwall children permanently and praying in regards to the future.

Grandad gone to rescue Elijah on our camping trip who has bum shuffled the entire way from our tent, down the bank and down to the water's edge! 

Elijah continues to develop at a slow and steady pace.  He is still an avid bum shuffler but can now stand at the couch unsupported for about 20 seconds.  Lately Elijah has been an absolute joy!  He is the most cuddled and kissed boy I've ever seen and has a very cheeky and lovable personality.  He's learnt how to say no and don't but best of all he now calls me MUM!  We've now got a spa pool for Elijah and he loves going in it so now his latest thing is to say ba and pull his shirt up whenever he's in sight of the thing!  Cute:)

I'm going to add some photos of some of our daily activities that Elijah's been getting up to so you can see for yourself how well he's doing.  Oh yes and I almost forgot to mention that Elijah recently had an MRI which showed absolutely no growth of the tumour since February last year!  It's early days still and the Oncologist says that the tumour could grow back as quickly as 9 months after treatment so we just have to wait, pray and see how it goes.  The next MRI is in November.

Thanks again for reading and hope you enjoy the pics.

Love from the 'Barnyards' 

No More Chemo!

   

Me and Elijah, now 2.

"No more, Chemo!" was chanted as we pulled out of the hospital car park last Wednesday (Jan, 12th) and headed straight for Movenpick, Mission Bay, as a celebratory ice-cream was in order!  As I licked up that maple walnutty goodness the sense of relief I had first felt as I walked out of the doctor's room that day came and settled around me peacefully and I savoured the sweet moment.

Had we completed one more six weekly treatment we would have been on chemo one year in total but our 18 month treatment plan had been stretched out due to low blood counts and holiday time.  We were only half way through the treatment plan and potentially looking at another year of treatment!  A little discouraging to say the least.

After Elijah's allergic reaction to the carboplatin he was put onto two new drugs that are ultimately more toxic than the other ones and needed more hydration which combined with his diabetes insipidus (the body's inability to control it's own fluid balance,)  becomes incredibly complicated.  By the time we had made arrangements to talk with the oncologist about the pros and cons of stopping chemo we had already made up our minds.  Thankfully our Doctor was supportive and didn't have any "strong feelings" about continuing treatment, since it had never been promised to cure Elijah.  It's funny how you get used to having a sick child and how it just becomes normal for you but to get used to seeing your own child suffering it must mean your child's suffered enough!  And enough is enough!

Of course the future remains just as uncertain as ever and re-visiting chemo in the future is always an option but we'll just deal with those things as it happens and try to make the most of this remission.

I have also decided to stop writing on the blog at this stage.  As much as I enjoy writing I don't feel I'm able to keep the blog updated enough to make it worth it for you guys.  So thank you all very much for reading.  I may come back to it one day but in the mean time please feel free to email me at eleanor_barnard@hotmail.com for a progress report.

Oh yeah and Elijah's been doing really well lately.  Making some slow and steady improvements including sleeping through the night!  The other children keep things interesting and are great with Elijah. 

Thanks again for reading.

Love from the 'Barnyards'



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.