Thursday, April 30, 2009

My "pwecious wittle fwower"!!!

Meg and I had a bit of makeover evening on Sunday and this was the result!! Her hair has started to fall out again so we got creative and I tried to make a flower (although Phil thinks it looks like a cannabis plant!). I started making the stem and leaves at the back of her head but she got fed up! Bless her; she's such a good sport! A bit of turquoise eyeshadow was the final touch!
We were in PMH again today for kidney function testing, hearing test and blood tests to check that Meg's well enough to have chemo tomorrow, which she is - so back we go again in the morning. She has to have a large dose of steroids 12 hours before her chemo starts, and I'd negotiated with them today to give her the steroid at 11pm tonight and for her chemo to start at 11am tomorrow. But....another change of plan (and that happens a LOT)....I had a call this evening from one of the doctors and she now has to have her steroid at 2am! At least the steroid is in tablet form instead of liquid like last time (at 1am :~( ) so it won't take long to get them down her and back to bed!!
My next blog will probably be done while sitting in the dark in Hotel 3B at PMH, during what I hope with my whole soul, spirit and mother's love will be Meg's last but one cycle of chemo. We have a very vague light at the end of the tunnel. Not anything that we can truly rely on, but something......that we HAVE to hang on to , and believe in, that our "pwecious wittle fwower" will beat this and that we'll see an end to this nightmare journey and watch her grow and blossom into a wonderful, healthy adult.

Sunday, April 19, 2009

My Award!!

Hi eveyone

I got my award today!!! At the beginning I didn't really want to go or even get it.(sad i know)but.... once i saw other children go up I didn't feel so scared. When i got there i was feeling really scared. But its all over now so i feel so much better now and very proud of myself!! There was this one little girl who could not speak. It was really sad .... She had red hair like me !! There was a little boy who lost some of his fingers and both of his feet from meningitis that was really sad too. :( Just a really big thanks to Lisa,Jay,Heather,Courtney and her mum for coming to support me!! thankyou :) My friend Evie was there with her parents Ali and Michelle!!

p.s please can you comment on this one because i love to read them!!

Saturday, April 18, 2009

We're so proud!

Meggie received her Lions Children of Courage Award this morning, and what an emotional experience it was. Not only because of what Meggie has been through, and continues to face, but what all of the other children have also faced. The stories we heard were just so humbling; some of these children have had to deal with huge challenges, and they all had a smile on their face (well almost all of them!) It's a good job Doula Heather lent me some tissues.......
Meg was SO nervous about this morning; didn't want to get dressed, didn't like the outfit, didn't want the award, didn't even want to go! When we arrived and she saw the stage she was terrified, and we had a few tears. Thankfully, the children were called out in alphabetical order so Meg had time to see how it all worked and how the children seemed to enjoy it, so by the time it was her turn to go up, she was "champing at the bit"! She did really well. She asked me to go up to the stage with her, which I did as far as the side of the stage, then off she went to receive her certificate, her medal and her teddies! She came back to her seat beaming! We're SO proud of her!!
Thank you to those of you that came to support Meg - it was really special to have you there and sharing in Meg's award.

Hope you enjoy the pics!

Friday, April 17, 2009


Hi everyone its Meggy!!

Just to let you know im feeling a bit down today. I was feeling sick this morning but im feeling better now still a bit sick-ish but im doing good!! Enough about me how about everyone else.
How everyone else doing ?
I dont really have much to say so yeah
Cya later

Sunday, April 12, 2009

Children of Courage Award

Just to let anyone know that's interested in coming along.....

Meg will be receiving a

"Lions Children of Courage Award"

When: Sunday 19th April 2008
Where: St Mary's Anglican Girls School, Elliot Rd, Karrinyup
Time: 10am

All friends and supporters are very welcome to come along!

Almost end of round 4.....

Well, we're on the last day of the fourth round of chemo; two more to go...... Meg's handled it very well as is her way, inspite of day 3 and 4 causing her lots of vomiting, and we're hoping to be discharged sometime today if she's able to tolerate oral fluids. This time, she insisted on sleeping in a recliner chair - she feels much more comfortable in it, partly because of her wound from her recent liver surgery and partly because she's all packed into it and feels very snug!

Yesterday we said a sad goodbye to my brother Simon, and my neice Jennifer. It's been lovely having them with us for a couple of weeks and we've laughed so much which in itself is great medicine, especially for Meg. Unfortunately, Simon and Jen had to say goodbye to Meg in the hospital, but we had lots of fun before he left and what made it even better was that Meg was feeling well enough to enjoy it.

I've finally made arrangements to get some counselling; something that I've been encouraged to do by lots of people, but have kept putting off for various reasons. The counselling is provided by The Cancer Council and they link you with a counsellor they feel is best suited for your particular situation. I'll be taking Ellie with me for a joint session and then hopefully Ellie will feel comfortable meeting with the counsellor on her own from time to time. Meggie still sees her Occupational Therapist. She gets on very well with her and is able to open up to her which is great. So much more goes through her mind than she lets on so it's really good that she had a place where she can talk about things without worrying about upsetting us.

I'm going back to work this week! My lovely boss Linda asked if I'd like to cover for the lady that stepped into my place when Meg relapsed as she's spending the Easter holidays with her children. I feel that this is a good time to "trickle" back into work as we only have two more cycles of chemo to get through and weekly hospital appointments for bloods. I've missed the camaraderie of work, the support and love of the women I work with (although I know it comes from them in spirit), and it'll be good to earn a living too! So Meg and I will be going to the office in North Freo on Thursday and Friday this week and Tuesday and Thursday the week after. I'm really looking forward to it.

On Sunday of this week, Meggie will be receiving her Children of Courage Award. She's so nervous about it! We'll be taking lots of pics of the day and will be posting them on here. (That's if I can hold the camera along with the box of tissues that I know I'm going to need).

It's cloudy and windy today - lovely! Meg and I have just been for a little walk outside (along with the IV trolley). It was gorgeous to feel the wind and to sit and enjoy the fresh air. We sat and played I Spy, chatted and played a hand game called "Double Double This This"! Now we're back inside Hotel 3B, watching the minutes and hours tick away, and hoping that the doctors say we can escape!

Thank you to all of that visited us during this stay; it was lovely to see you all plus it really helps to break up the monotony of the days.

We hope you all had a lovely Easter break!

Jane xxxxxxx

Saturday, April 4, 2009

A bit or normality....

It's been a while since the last post - sorry! (Thanks to everyone that nagged me!)

Meg's recovery is going well, although a little slower that we were expecting. As I said in my last post we were home within a week of her surgery, but she was still extremely sore and needed quite a lot of help with things. Sleeping was a problem; she couldn't get comfortable because of the large wound, and she was having pain on the opposite side of her body where there was no incision. She did have us particularly worried at one point, because she came through to me in tears one afternoon. The pain had just become too bad, so I spent the next few hours trying to make her comfortable and speaking with the surgeons at the hospital. The pain did lessen somewhat, but even now she's still experiencing discomfort. One thing about children is that they think they can just carry on as normal after surgery, but I've recognized this time that even if Meg feels like she can plod around the shops, I need to limit that or else she ultimately will suffer with more pain. The other thing we have to remind ourselves of is that Meg went into this huge surgery, already on a down note. She was, and still is suffering the effects of chemotherapy, so it's totally understandable that her recovery is slower than if she had gone into the surgery on top form.

We had a visit from the local Lions representatives who came to meet Meg as she's been awarded a Lions Children of Courage Award. the ceremony is going to be held on Sunday 19th April at St Mary's Anglican Collee in Karrinyup at 10am. Meg's really nervous about it. She hates to be the centre of attention and thinks that everyone will be looking at her, but there will be lots of other children there who have also been nominated so hopefully she's feel more relaxed on the day.

Meg's behaviour has changed, and understandably. She's very fragile, emotionally as well as physically. She cries easily, sulks regularly and bickers with Ellie more than ever. As a parent, it's so hard to discipline a sick child. She can really "push my buttons" but I'm always so torn as to how to deal with it. She's been through SO much, more than even I can ever understand. On the one hand I want to wrap her in cotton wool and protect her from everything that could hurt her, and on the other hand I know the importance of keeping things normal, and to keep the discipline going as I would usually. But I feel so guilty if I tell her off for something and upset her. She's had enough upset in her short life, and I shouldn't be adding to that. Is this behaviour a symptom of what she's going through with her illness, or her being a normal 11 yr old pubescent redheaded girl, or a combination of both?

On 29th March, my brother Simon and his youngest daughter Jenny arrived for a 2 week visit from the UK. Ellie and Meg were so excited! We had to get up in the middle of the night to go to the airport which made it even more thrilling! It's great to see Simon and Jen, and Meg is having a great time being teased mercilessly by Uncle Simon which she takes extremely well! We also went down to Albany for a break and were supposed to be there for a week but we only lasted a day and a half. the weather was dismal, so after having sorted out all of our menagerie of animals, packed and travelled 5.5 hrs to Albany, we came home 36 hours later! Whilst we were there, our lovely big girl Ellie turned 14. As there was nowhere for us to get a "proper" cake, we improvised and made a stacked cake which we all ate for breakfast. There's a photo of Meg bringing Ellie's cake to her. Ellie got her first serious camera for her birthday and all of the shots on this blog were taken by her. So, Albany was a bit of a waste of time really but hey least we tried! And it was good to see Kevan, Amber and Merrilyn who own Havana Villas where we stay. So we've been having a holiday from home. We've done Hillarys, the beach, Fremantle Prison and markets and went to the lovely Lisa's 40th birthday bash last night. It was wonderful to finally meet some of the gorgeous ladies who have cooked meals for us during Meg's illness, and to say thankyou to them in person. Today we're going to spend the afternoon with our lovely friends Ross and Tanya, for drinks on their beautiful boat and then dinner. Somehow we're going to have to try and fit AQWA in too before Wednesday, because that's the day we're back in for chemo and our freedom ends.......
So....we have three more cycles of chemo to get through and it just has to work. Our options are running out. Although they removed all of the liver tumour and there was no evidence of disease anywhere else in Meg's body, that doesn't mean that there aren't some rogue cells causing problems that can't be detected yet. So hopefully the next three cycles of chemo will blast any disease that may still be there and we can get on with a "new normal" life.

Thanks you all again for your emails, texts, facebook messages...... we truly, truly appreciate all of your thoughts and love coming Meg's way.