"I stand up and walk, no hands!" - Elijah

When I put pen to paper to jot down a few thoughts on what makes a good parent, these words come to mind... love, joy, peace, patience, kindness, goodness, faithfulness, gentleness and self control.  Minute by minute, hour by hour and from one day to the next, parenting can seem like a tiresome endlessness but if we choose to make these qualities a part of who we are then we can have hope for the future of our children.  I read a quote recently.  "A life that is too easy is not good for the soul."  When we put our blood, sweat and tears into something our appreciation for a positive outcome would multiply that of any of which had been acquired with little or no effort.

I had one of those moments of immense appreciation recently when I came to pre-school to pick up Elijah on a Wednesday afternoon.  I sat in silent disbelief as I watched a recording of Elijah taking his first steps without holding on to anything!  This was it, this is what we have all been working towards and now here it was in front of me, one month before his 4th birthday!  He had taken me by surprise and suddenly the door of possibility has been flung open wide.  One of the happiest days of my life!  Elijah has been attending Carlson pre-school for 2 terms now and I know for certain he wouldn't have come this far this quickly if it wasn't for all the great work they do with Elijah, I am so happy and so fortunate that he is there.

Another great day that we have recently celebrated is Elijah's 4th birthday.  We had a lovely birthday party at the Manukau live steamers and invited all of his little buddies.  Me and mum made him a train cake and she pulled out an old photo of my older brother's train cake at his 4th birthday which I thought was pretty cool.  Elijah was happy and content with all the food and attention on him.

Looking ahead we have been given our 'Orthopaedic Surgery' date, Wednesday 17th October.  This is the botox for his left calf muscle and cast under GA.  This is to correct some/most of the tightness in his calf muscle that has progressively got worse over the years.  It's my hope that it has a long lasting outcome and not just a temporary fix.  Botox sounds like it's a relatively common treatment amongst the other kids that go to Carlson School, it usually wears off over a couple of months and requires ongoing treatment.  Around the 14th of November is our next MRI and Oncology clinic... and I think that's about it for now.

Thanks for reading, I hope you enjoyed it.

Oh, and one last thing before I end.  Elijah's daddy has a new website and we would love you to check it out and watch him on the clip if you haven't already... www.boye.co.nz 

Thanks

Eleanor

First steps.

First steps at home (two days later.)

Mr Independent.

Riding Therapy

Elijah's birthday party - toot toot.

Yay, Wiggles!

Happy birthday Elijah.

Elijah + baby Nadia = too cute!

The Update

End of the "golden" weather.

Ok, well I have so much to share about Elijah (who is now a big 3 and a half.)  He has gone from very slow and steady improvements to leaps and bounds and is a complete character I might add.  He has gone from taking months and month to say things like 'mum' and 'bye' and can now string together basic words with his most complex being "Can I have num num mum."  Just the other day he even said "Can I have Auntie in bath?" now that's pretty advanced and he's saying a new sentence everyday.

Elijah is full of beans, loves attention and playing with the other kids.  He is still not walking but freely alternates between bum shuffling and crawling.  He can also bring himself from a sitting to standing position as well as a bit of cruising around furniture.  He has even mastered the art of climbing our inside stairs and can now complete the circuit of lounge to outside, to down stairs, in and out of sandpit, into our bedroom, up the stairs, down the hallway and back to the lounge, all with big smiles as he knows we are going to tell him how great he is for climbing the stairs all by himself!

Easter weekend

Because Elijah's left side is very weak his muscles have become quite tight which makes it difficult for him to put weight on his left foot so we have been put on the waiting list to get botox injections into his left foot and possibly arm/hand as well.  I don't know too much about it yet but I hear that it relaxes the muscles while still allowing them to be stretched and strengthened.  So along with some new splints to hold his foot in a better position we are hopeful that Elijah's walking will improve this year and he may even learn to walk all by himself!



My big boy

I know I always say in my blog updates that Elijah is sleeping better but he always seems to go through periods of sleeping better and then more unsettled times.  He has times now where he'll sleep right through the night and then other nights where he'll wake a few times but now that we are actually having nights where we don't have to get up to him it has made life 10 times better.  I feel like a normal human being again!  I've even taken a three day trip away from Steve and Elijah these past school holidays knowing that Elijah will be alright without me, now that's a nice feeling.

Bum jumping!

Some more exciting news is that Elijah has been accepted into a special needs preschool at Carlson School in Three Kings.  It is going to be the best place for Elijah to get stimulating interactions with others during the day and a lot of their focus is to get Elijah up and moving so I'm very excited about it.  I hope he's a good boy for the teachers as he can be pretty stroppy and strong willed when he doesn't want to do something.  So Elijah has had his first three weeks at "SMILE" which is 3 mornings per week and has settled in superbly.  He's even happy to say bye bye mum when I leave which warms my little heart, I am so proud of him!

In my last blog entry I wrote about a growth hormone issue that was worrying me as the medication to take for it can aggravate tumour growth which is not a dilemma I was wanting to face!  It so happens that Elijah i producing a hormone that he should be producing but much too early so he has already started the medication to counteract it.  This monthly injection will slow down his premature growth spurt amongst other things.  The good news is that the injection he's having is not shown to aggravate the tumour and since he's already producing this hormone it means that he doesn't have to go on the replacement hormone which is the one I was fearing, so praise God for that!

Elijah getting sucked down the drain pipe...
I wouldn't usually add a photo of Elijah in the nuddy but this one is just too cute! 

Ok, guys I hope your hanging in there because I have some more good news to come.  This has been an especially hard update to write.  By the time I got my draft down it was two days before Elijah's MRI so I typed it up and hit save so that I could add the news about his MRI.  So the MRI was on Tuesday the 1st of May and everything went exceptionally well.  Elijah was like a little angel and everything went so smoothly.  I got a call on Thursday the 3rd to say that the scans look good, tumour stable, no growth, yippee!  Then that night  Elijah woke at 12:30 so upset and crying/complaining for the next two hours before he finally went back to sleep again.  When he woke up the next morning crying I wasn't about to waste any time I had a shower and took him to A&E at Starship where they gave Elijah some good pain relief.  Elijah had a good sleep and they continued with various tests with no positive results and Elijah was hardly even showing any symptoms but he definitely wasn't himself.  Anyway, there were concerns for his tummy area but Elijah had been improving by the afternoon  He was laughing and playing and by 7pm Elijah still wasn't "allowed" to eat anything and we were still waiting for the Neurosurgeons to do an examination on him.  (Please note... that I am not complaining here, just stating a fact... ) So we were taken to the ward to be kept on observation for the night.  On arriving at our room I notice two beds, one empty one for Elijah and the other contains a writhing, crying baby.  A man slumped at the bed side doesn't acknowledge the new room mate, TV blaring, Elijah now tired, hungry and upset some more faffing around and the next thing I know I'm signing 'leaving against medical advice papers' and making a b-line for the van.  This is the first time we have ever done that and it felt good knowing we were making the right decision as a parent.

Where's Wally?

It is important that parents follow their parenting instincts and don't always rely solely on the opinion of a Dr.  My heart has grieved for the few times I have ignored my parenting instincts and followed the rules.  Best not to dwell on those times.

I think we have finally come to the end of this long awaited update. I've managed to find some random pics of Elijah along the way but will leave you with the most recent one that I took on Saturday with my beautiful sister, Georgia before her ball and Elijah....

much love.

 

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.