Here we are, only two more treatments to go and it is 'home james' ! woohoo.
Emily should have started chemo last week, but her neutrophils do not want to rise, they are still sitting at 0.6 and have to be 1 before chemo, After all the treatment she has had so far, the bone marrow is taking longer and longer each time to recover.
Today Emily had a bone marrow sample taken. They found it tricky this time and had to have three tries at it, and still only got a tiny amount of bone marrow. They say it is because she has had so many treatments and her marrow will still be suppressed, and she has soft bones now as well. Poor bub.
But Emi has been very well, she has not needed antibiotics this time during her neutropeania. (which is amazing, she is very healthy - must be mums good milk eh,  ha)
We are staying at ronald house for the time being untill she is ready for round number 5 ( probably by the end of the week).
It has been sooooo good staying out of hospital though, real food, privacy, freedom to explore the outside. we have spent most of the time in the park, Emily loves being outside - I don't think there is a tree left where we havent sat for an afternoon.
Emily is gaining weight a little bit because of her night feeds, and she is slowly starting to eat a tiny amount at most mealtimes.
Since we have been staying out of hospital, Emily has seen a few other children around, ( although has not been able to play with them) but she is quite interested. Can't wait untill we get home, I will be taking her out to socalise as much as I can.
Emi's new tricks are clapping hands on command, waving, and turning herself around on the floor whilst sitting. Still no signs of crawling yet, but she hopefully will one day..

Over halfway!

Well, here we are, christmas just two sleeps away, and we are lucky enough to be staying at Ronald house.
Emily finished her 4th round of chemo on tuesday, - only two more to go!!! yahoo, lets hope all goes well.
We had a scare mid december when Emily got a fever, and went downhill so fast, I was scared, but the doctors and nurses are, luckly, on to it straight away, and Emily got better within a few days. But her hickman line was still infected, so out it came!
two lines were put in her hands for three days untill she had a temporary pick put in her arm (more trips to theatre - I hate taking her there, never gets easier).
And the chemo was put through the pick in her arm. then on tuesday, Emily had a new hickman (chest) line put in, it took ages this time, over two hours, and I was so pleased to get her back in my arms after the op.
(Happened to be Daddy's birthday too).
I think Emily had a sore mouth , maybe teething or something, as she would not drink for two and a half days! I ended up putting water and milk in her nasal gastric tube! but she is feeding again now and that is good.
as you know, we put an auction on trademe for Emily's painting, to help us out, and whooa! ( I was hesitant when tv asked to interview us, but they insisted) it went crazy! we have more than enough now, and so I am using all that we do not need, as a trust for Emily when she is older (special education etc - she will need it, I want to help her be the best she can be, and she will be something special, I can tell).
We are also giving back to the hospital playroom (as toys seem to go walkabout alot from there) and to Ronald Mcdonald house.
So a huge, huge thankyou to everyone who has been so kind to us, Emily is such a special girl, and we appreciate it so much.
And, I knew I would get at least one nasty comment, I feel sad for that person, that they must must feel that way, it must've been hard. I know we are doing something that is right, as it is all for Emily,  she is a good cause, and she WILL contribute to society, she has the whole future to spread her inspiration, who knows what she will achieve, but I know it will be something pretty amazing. 

Tis the season..

As the nurse aide unpacked the christmas decorations today It suddenly dawned on me - omg, xmas is nearly here! I havent even thought about christmas pressies this year, not sure if i will, I will try get something for the nieces and nephews, - can't let the kiddies go without.
We have had a good week this week, Brendan is up, staying at ronald mcdonald house, and Emily and I in hospital, but for most of the week Emily has been allowed out for a few hours each day,as her neutrophil count has been high enough.
Emily stll isn't really eating, but having a few spoons a day so that is someting at least.
The nutricionist has put Emily on 20hour per day feeds to keep her calorie intake up, so that is good.
I think the next lot of chemo is due to start around the 14th dec, so I am expecting to be stuck in hospital for christmas day, but if there is a way we can get Emily over to ronald mcdonalds for the day I will do it! fingers crossed.
I am surprised that Emi hasnt lost all of her hair yet, she lost most of it after the very first lot of treatment and was left with a wee 'ring' of it around her forehead - cutey, and now some is starting to grow back on the rest of her head! but I wont be surprised if she does lose it again.
Emily has had a really good week, off the morphine and panadol, anti nausia drug finished, only one lot of meds a day at the moment, so very low matinence for the nurses, great! keep it up Emi!

This is how I find Emily most mornings.....can't be comfortable :)lol

Morning, Emily is still sleeping, so thought I would do a quick update.
Emily has had her chemo, and now waiting on her blood count to drop again. Yesterday her hemaglobin was low so she had a blood transfusion. Emily is on morphine again, as the mucusitis is back. But think the morphine helping, and she has been able to breasfeed occasionally. She bit me yesterday oowww! little madam.
Emily's heartrate has been pretty high the past few days, they are keeping a close eye on her, as one of the drugs they use can affect the funtion of her heart - scary.
I have birthday pics!

this is before she pulled out her nasal tube.........

and after, beautiful in her birthday dress! awesome photos thanks to my dad, thanks dad xx
We took Emi in to hosp later that day to get the tube put down again.

Many, many thanks to everyone who supported us with the recent garage sale, it was amazing! thankyou so much everyone!

Emily 1 already

I know it has been a while since my last post, have been a bit hectic and I had problems with my computer and had to get it fixed - damn viruses...
To my delight, Emily and I were allowed to spend a few days out of hospital for her birthday, as her counts were nearly recovered, getting ready for next round of chemo. We had a nice time over the weekend, Dad came up, and so did my parents, Brendan's parents and a couple of friends and their children came up for the day on Emily's birthday. We spent the day in the park.
We are back in  hospital now to stay, Emily started chemo on tuesday. I think she is teething again too. Emily still is not eating a thing. wish she would try.
She is being watched closely at the moment as there are a few things happening - she has a rash ( probably a reaction to the chemo drug cytarabine, her heartrate has been fast and temp up a bit sometimes, and her bio chemistry has been out - whatever that means.

Garage sale for Emily! read on...

Hi all,
Saturday night and Emily is finally off to sleep, She usually goes down around 9 - 9.30, wish I could get her to go to sleep earlier, but I can't complain, she sleeps all night ( unless she is woken by a nurse taking her obs......).
Emily has had another trying week, she has ok days and bad days, today she was a bit happier.

But I feel that Emily is regressing a bit in hospital, the early intervention therapy  that she can have at the moment is limited compared to what we were doing before hospital, (especially being stuck in one small room), and it makes a difference.
Emily cannot crawl yet, but is happy sitting, and playing with my help.
I keep trying to think -'what does it matter anyway, she will be the way she is going to be, as long as she is happy it dosent matter', but I still stress about it.

I am a wee bit concerend now as Emily has not eaten any solids for a week now and living on breastmilk, her weight is dropping. She only weighs 7.5 kilos now.
She is having night feeds through her nasal gastric tube, they were breastmilk but I cannot express any extra now and so tonight she has started on night time formula feeds, with a suppliment added to give her extra calories.I hope this helps.
I don't think she has the mucusitis anymore so it must be that her tastebuds have all changed from the chemo - that and probably just feeling lousy, must make her not want to eat.
All I have to do is put the bib on and she gets upset.

Emily had another blood transfusion today as her haemoglobin was low, and she is very neutropeanic at the moment (this is normal, it is the chemo doing what it ought to). Hopefully her bloods will recover from here and she will feel like eating again soon.

Dad is going home to Dunedin to work tomorrow morning so I will be by myself for the week. We will miss him. - not looking forward to it at all, but hopefully the week will go fast and I will have company again soon.

To all my friends - yes you!
Brendan's work friend is having a garage sale just for Emily!
And Brendan's auntie has kindly offered to help out too, If any of you have anything lying around that you would like to donate, please ring
Gail - 03 487 9441 (evenings)
The garage sale will be held on Emily's birthday, saturday 13th november.
more information can be found on flyers at warehouse stationary and lighting direct, Dunedin, and i am sure the garage sale will be advertised in the odt.
just wish I could be there to be part of it...feel a bit helpless stuck up here in chch

Thanks so much guys, for helping us out

mucusitis, morphine and ... teeth!

It has been a full-on week with Emily, she has been up and down, giving us a scare and then a surpise ( as she seems to have been doing lately).
Emily had the rest of her chemo (it had been postponed due to her bowel op) on monday, tues, and then the chemo injection on weds, as well as another nasal gastric tube put down. Wasnt pretty, poor Emi, Im sure I wouldnt like having a tube shoved down my nose into my stomach either!, then a nasty jab in the thigh to finish it off, talk about scream!
Needless to say Emily didnt eat while on chemo, and wasnt all that happy, but still drank well, untill weds afternoon it all went downhill.
Emily started to refuse to drink, and by thursday morning she was so upset, I could see her mouth was sore, she wouldnt even move her tounge or swallow.
Emily has a common side effect of the chemo, mucusitis - where the lining of the mouth, throat, gut and intestine can all be affected, and ulcers form, can be very cruel so I am told.
Emily was beside herself, I think it is the worst I have seen her and it was quite upsetting. Emily was sent for another xray just to check things out, but everything was fine,
So out came the morphine infusion and nasal feeds, and finally she was comfortable.
Yesterday ( friday) things started to look better and the rate of morphine was lowered, as the day went on she got much better, and started eating again!
Emily had so much food I was amazed! I think her operation is making a difference already.
Then I was rubbing Emily's gums and noticed a tooth! yay! finally, her first tooth just stsrting to cut through. And here I was thinking Emily would be one year old and still have no teeth.  Good girl Emily!
(made me wonder tho if the teething contributed to her lousy few days.....but I told her she cant have morphine every time she cuts a tooth, wee madam.)
So this morning they stopped the morphine infusion, Emi is asleep at the mo so will be interesting to see if she still happy and ok to eat when she wakes up.
I am told she probably will get mucusitis again once the effects of the chemo that she has just finished sets in, but at least they can make her comfortable.
Looks like a nice day outside, I wish I could take Emily for a walk, I was hoping I can take her out on her birthday but have been advised probably not, She has to stay in her filtered room... man, think I am gettin cabin fever, they dont call it protective isolation for nothing do they!

daddy's girl