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

Emily is amazing

Emily's bowel operation went well, and it is now four days since she had it done, she is now off the morphine ( although had to have a small amount tonight as she was in a little pain, poor girl),she is still nil by mouth ( including milk) and is coping so well. I hope she can start drinking tomorrow, she really wants to, it has been a week since she has eaten or drank anything.

Here is Emily the day after her operation, sitting up! strong wee girl.

Dad had to go home that day back to work so that was sad, but it has to be done.
Emily was allowed to go back to her room in the cancer ward yesterday, feels more like home, much better than hdu (no offence, the nurses there were great).
So Emily's chemo will resume again next week so I am told. Her system has already reacted to the first two days worth, and Emily had to have a platelet transfusion this morning and more neutrophil injections.
Emily has a larger nasal gastric tube in at the moment to monitor the amount of bile is coming up, today they took it off free drainage to see if the gases in her tummy will work the other way - so she will use her bowels!, as they have gone on strike since the op, -thats why we are still not allowed to feed her, she needs to pass wind!
It was dress up as disney character day today, so Emily was a fairy princess - or maybe tinkerbell?

I can't believe how well Emily is coping with everything that is going on all the time, she really is a wee trooper, It is so cruel for a wee babe to go through so much, but she tries to keep smiling, dear wee soul. She is an angel.

 

Hit hard by chemo, and more problems arising!

Poor wee Emily, what a horrible few days we have had, this dose of chemo knocked her for six, she was very lethargic, almost like in a coma for two days, vomiting all the time, but there was another problem.
I have had my concerns about her tummy since she was born, with violent vomiting, then as she got older very smelly burping and fermented smelling vomit, I kept expressing my concerns with the doctor and paeds, but they were not concerned, put it down to reflux. ( I was not convinced).
So after the chch doctors getting a wee bit concerend about Emily's reaction to this lot of chemo, they sent her off for an xray, and sure enough, there was someting funny going on.
Duodenal web, almost always discovered at birth, and a problem found in down syndrome babies.
It basically means, the top of her intestine, near the bottom of her stomach, is too narrow, so food cannot pass through properly. Emily has developed a ball of old food that is sitting in her tummy with nowhere to go, ( might explain some of the feeding problems I have been having before chemo as well).
It will get more severe with time too, so Emily is to have an operation on friday.
She has to fast, as her tummy needs to be competely empty for op, so she is finding it hard, and is not happy with me at all, just wants booby. I feel so mean wish I could comfort her.
She is not allowed to eat or drink at all untill quite a few days after op too so not looking forward to that, poor wee bubba. (luckly they give her vitamins and minerals through her iv tube).
Other than that Emily is coping quite well considering, she has been sitting up again today and playing a wee bit, she is a wee fighter.
So I am off to the maternity ward again now to express some more milk,  will keep you posted.

Still waiting for neutrophils to rise....

Hi,
Ended up Emily didnt start her chemo last week, as her neutrophils ( cells that fight infection) were too low, they needed to be 1 before you can start chemo and hers were 0.5, went in for bloods today and they 0.8, so another test tomorrow and all going well, Emi should start on Monday morning.

The canterbury rugby team came to ronald mcdonald house on thursday and cooked everyone breakfast, Emily was fasting as she had to have a bone marrow sample, (that why she looks unimpressed...or it it because she would rather have seen otago players?....) anyway the food was great, a big thankyou to them.

also we would lke to thank the following lovely people,
Sarah Nolan, Cassidy and Nikita, S. Rusch, K J Harihari, Asha Norman, Ashton Lahood, Mark Jackson, McDowel family, Grae family and Sheree Honan,  thankyou all so much for your support.

Emily is doing really well at the moment and started putting weight back on, so in a way it is good that the chemo has been postponed a wee bit so she is more prepaired. For the meantime we will keep on making the most of the nice weather and enjoy the walks and picnics in the park.

Fun in the park before hospital stay

Emily has been  almost back to her her normal, happy self this past week, and we made the most of the nice weather before she goes back to hospital.
We went in for Emi's blood test and I signed the consent form for her bone marrow sample that is being done tomorrow ( a simple procedure where she goes under a general anesthetic and they take a sample from her bone marrow).
Then we are to stay from wedensday, when Emily starts her next lot of treatment.
I am a bit scared about this one, as the dose of chemo is 15 times stronger than last time, and it will probably knock her back quite a bit. Seeing Emily get sick and miserable after the first lot was bad enough, so am not looking forward to it.
One of the things that worries me is that she cannot have  the liquid suppliment they give paitents to help their nutrition, as Emily is too small and young!

on a brighter note, we went to the park three days in a row and had picnics on the grass, more swings and feeding ducks. Emily had a taste of her first lollipop.
Emily has been dong more - yes more painting , man blue is a hard colour to get off!

Emily's auntie and daughter are here in chch for a few days, Emi enjoys their company.

Emily has learned a few new 'tricks' in the last couple of days, - shaking her head, growling ( not too fussed on that one) and overall becoming more alert and active.

Off to bed now, big day tomorrow with Emilys wee 'op' will blog again soon.

Second lot of chemo to start on Monday ...

What a beautiful day here in christchurh, Emily has just been in to have her 'meds' - Ambisone (she has every second day, takes about two hours) She is fast asleep now,  lovely.
Emily was weighed and measured again, she has lost a wee bit more weight despite starting to eat solids again on monday, but she has finally started to grow longer, 67cms now! , sweet wee shortie :)
Not looking forward to starting the chemo again, just when we are starting to get her to eat and then she will get sick again, but they assure me they will make sure she dosent lose too much weight.
We have been staying at Ronald Mcdonald House for last few days bfore her next lot of treatment starts, as Emily has been well enough, so that is great.
Wish Hubby could be here while Emi is having Chemo tho, I will just have to get the nurses to give me a hand with Emi when I need to I guess.
Took Emily to the park yesterday and she had her first go on a swing all by herself! she loves it, will have to take her there as much as I can.
It is a shame Emily will miss out on interaction with other children for 6 months, I dont suppose it will matter too much though, as she certainly gets heaps of interaction with the nurses!

Thanks Sharlene, Karla, and everyone who has wished us well

A big thankyou to Sharlene for setting up this blog ( i hardly knew what one was untill now), and to all the people who suggested it. We are amazed by the number of kind thoughts and well wishes for Emily.

I went and brought more canvases and paints for Emily's artwork, she just loves painting!! the hospital wall will be covered in her works by the time she leaves!

Emily is on day 16 after finishing her first lot of chemo, her hair is falling out and she is feeling grotty, but much better than last week when she spiked a fever, having platlets and a blood transfusion helped. It is scary seeing babies go downhill so fast.

Emily has always been a fussy eater but now she hardly has solids at all, and when she does it is usually one paticular type of food, she ate a small amount of tea tonight, good girl Emily.

So at the moment Emilys blood cells are starting to recover, when they do, she will start her next lot of chemo.

Dad arrived up yesterday for a few days and Emily was sooo happy to see him :)

WELCOME

Welcome

 Hello all and welcome to the blog of Princess Emily.

Where you will find updates of how Emily is going.

Please click to the right hand side and follow the blog.

Thanks to everyone for the support so far.

Words cant explain how everything is happening.

Please feel free to leave comments for the family under posts:) im sure the family will be very grateful

To Emilys family this is easy to use, and i hope you like it.

Sharlene:)