OVERWHELMED

Emily is one loved little girl here in Dunedin.
There are cancer awareness campaigns happening at the moment, and some Dunedin Locals have decided to go bald for our little Emily!!!!
Last year, after the garage sale that Robyn organised, so much support was coming in that Robyn decided to create a trust fund for Emily! Now a lovely lady called Debbie, and I have just heard of a couple more people, are going to shave their heads to support Emi!
Wow, it is just amazing, I dont know what to say, I feel so lucky to be given the chance to do the best we can in the years ahead for Emily's health and education , and I am gobsmacked at how kind these 'strangers' are!
Brendan (hubby) and his workmate have decided to go ahead and shave their heads too, for the leukemia and blood foundation.

but also, I know i have said it before, thankyou to all who have supported us throughout the last 8 months, it brings hope and warmth to know there are wonderful people everywhere in new zealand,who do care.

Home at last!!

This is it, we are home! Emily had her last lot of chemo, that went for a week, and then they sent us home for her to count recover,(as ronald Mcdonald House still closed due to quake, and hosp pretty empty too, think they trying to send as many people away as possible). Dunedin hospital are taking over the rest (which should only involve transfusions and blood tests etc)
I didn't have the internet on for a while, which is why I havnt posted sooner.
Emily is doin really well. She is still neutropeanic but her counts should be up in a month or so. When they do come up, I can't wait to get her out to all the normal things like playgroups, swimming, socalising etc
She will need to have her hickman line surgically removed, which will probably happen in 2 months.
I have been busy as trying to catch up with everyone, Emily's early intervention team etc. It will be good to get a plan for her intervention set in place.
So the chemo is all over, finally. We did it, or, rather, Emily did it!
Emily will have regular blood tests, and I think it is after 3 years, she gets the all clear! so, fingers crossed...
But I feel she will be fine now. The people at choc did the trick with their 'jungle juice' however nasty it was.

Glad to be alive. Not glad to be in Chch

Emily and I are fine and well, -we were sitting beside the avon river at the park at the time of the quake. lucky. As for the hospital and ronald Mcdonald house, I do not know what is going to happen yet.
 We were allowed into Ronald Mcdonald House for 5 minutes today to grab some belongings, so I just got a few things, I was shocked at the state of the inside of the building, Our bedroom seems to be on a slope now so I do not know if we will be allowed back.
I am waiting to see what will happen with Emily, as she is due to start chemo next week. I have no idea if she will have her treatment here or in auckland or?
There was no room for Emily and I at the hospital, so Luckily I have been taken in by my Dad's lovely relations (whom I have never met before now). I am glad to be out of the city centre.
The people at Ronalds have been great and I know they are devestated, as it is so uncertain as to what will happen to Ronald McDonald House and the families staying there.
I told my hubby today to come up cause I need him,so he will come up tomorrow.
We are just so thankful to be safe and well, and i feel for all those who are going through such a traumatic time.

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!