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'