Monday, December 29, 2008

"Round Two"

As many of you know, Meggie's cancer has returned and we are back on the cancer rollercoaster again. So many of you email, phone and write and it would be impossible for us to return the favour. Hence this blog. It's so reassuring to know that there are so many people out there, all around the world, hoping, praying, sending positive thoughts and vibes for Meg to beat this horrible disease, and please, all of you, know that we truly appreciate every one of those prayers and thoughts. Please also keep them coming her way. She needs them very much.


The story so far.....


In September we received the wonderful news that Meg was in remission. The chemotherapy that she'd received seemed to have done the trick, and according to a further biopsy on the areas of concern on her liver, the lesions were just necrotic tumour, so therefore, not of concern. What a relief that was! We celebrated that night at our favourite chinese restaurant, (those of you that know Meg will know that she loves food!) and off we went "back to normal". We went on holiday to Albany on the south coast, and had a wonderful week, fishing, walking on beautiful beaches and just being together....regrouping as it were. The previous months had been really difficult on all of us. Phil and I continued to work; me from the hospital during Meg's treatment, and Phil flying from work to hospital to home to hospital. Ellie was wonderful and so supportive of all of us. She's an absolute gem and very tolerant and understanding of what's going on.


Once back from holiday, Meg continued to have routine blood tests to keep an eye on her tumour markers (mainly her Alpha Feta Protein levels) and things looked good. In November she finally had her infusaport removed which was a real statement that her treatment was over and done with. Meg's behaviour had changed, and whose wouldn't after everything she'd been through? She can be very challenging at times (it's the red hair!) but she was behaving even more erratically. She appeared to be very angry and aggressive from time to time and it became increasingly hard to live with these moments. I finally contacted a wonderful support group called Red Kite, and started the process of getting Meg some occupational therapy to help her deal with her emotions. She had a great first session with her OT and began to open up immediately about her fears and thoughts about her experience. That same week she had a routine CT scan as part of her monitoring protocol, and Meg and I went back into PMH to see her oncologist for results, expecting good news. However, the areas on concern on her liver which were thought to be necrotic, had grown and they needed to biopsy them again. She had lots of urgent tests that week followed by a liver biopsy. The immediate opinion of her surgeon was that the lesions were live tumour but many more tests would need to be done to ascertain exactly what kind/s of tumour they were. So more waiting...... That's one of the many really difficult things about cancer...the waiting.... Waiting for appointments, waiting for blood tests, waiting for scans, waiting for results.....and all so unpredictable. Meg's results came back and it was confirmed that the cancer was deifinitely active again and that not only was it in her liver again, but also in two of her lymph nodes in her stomach. Devastated is not a strong enough word to say how we felt. We were winded, numb, angry, confused, and so many more emotions were raging through us. How could this happen? She's only just had her port removed? She was clear???? WHY??????? Obviously we asked her oncologist all these questions and many, many more. They can't answer some of our questions, and some of the questions are really hard to ask. They explained that an element of Meg's tumour seems to be resistant to the normal protocol of chemo that she received in her first course. The dilemma was to what to do now as this is an unusual result. So, as I've babbled on long enough about this, I'll cut straight to where we're at now.
We came into hospital yesterday to start a new type of chemo. One of the agents in this cocktail is a drug called paclitaxel which is a phase 2 trial drug which has been used on adult cancer patients with reasonably good success in that it slows down the progression of the disease. Meg's on a clinical study with the Children's Oncology Group, and there are 17 children worldwide that have this type of disease and are on the same study. Here's a link to the particulor study http://www.cancer.gov/search/ResultsClinicalTrialsAdvanced.aspx?protocolsearchid=5622601. You can also read more about the COG by going to http://www.curesearch.org
Meg started her chemo an hour ago and because the drugs that she's receiving haven't been used on a child here before, the staff kept a very close eye on her to make sure she had no serious reactions. She had lots of preparatory medications to prevent side effects but they couldn't guarantee that she wouldn't have any. She also had a strong sedative to make her sleep for the morning during the first few hours of the infusion. In true Meggie style, she began to doze while we looked through happy photos that I've compiled for hospital. She slept for 10 minutes and woke to say she needed the toilet. The nurses felt that she'd need to use the comode as she was sedated, but Meg absolutely refused and insisted on having her IV machine unplugged from the wall and walking to the toilet. We came back, Meg had a fresh scone and is now watching Hellboy!! Calm, but not sleepy! She's as tough as nuts and if anyone can beat this awful disease, she can.
So I'm closing now while watching Meg bake cookies with her little friend Evie who started her cancer journey 3 months after Meg. They are both absolutely amazing girls. Strong, brave, accepting and stoic. It's very humbling to watch them. I just don't know where Meg gets her strength from, but thank God she gets it from somewhere.
Jane xxx

13 comments:

Lisa Chalmers said...

What a wonderful idea Jane.. anything that helps you conserve your energy has to be a good thing (-:
Hopefully a bit of a release for you too! I wonder if you can persuade Ellie to share some of her poetry?
Anyway my friend....hope it works..we are all praying for you and your aamazing daughter,
Lisa Pete and the kidsx x x x

Cath said...

Hi there to you all, what a fabulous idea Jane. How super that Meg can receive messages and write things, how awesome. Thinking of you all and sending our love, Cath, Brad, Dillon and Megan xxxx

Uncle Simon said...

Hi Meggie, Uncle Simon here, not sure I am as good as you on this technology bit, but here goes. Just to let you know we are thinking about you every day and hope you are feeling a little bit better today.

You better had, because I am not coming over to see you with Jennifer unless you are fighting fit because I owe you a Chinese Burn, you on the other hand owe me $75!!

Just to let you know, I hold the record for the hoola hoop on the Wii fit at 211 spins in one minute, the only problen is I knocked off all the orniments on the window cill and went very dizzy afterwards and needed to sit down..beat that!!

I think this blog is a great idea because I can make you giggle on here from my chair, without even getting up! Again one more problem for you is each blog I make costs you $5 so you now owe me $80 and I will be posting losts of stuff for you to read, it's gunna cost you a fortune Megs!!

Bet your looking forward already to my next one.

Lots of Uncle Simon love xxxx

Kerry M Belliveau said...

Hello Family, its Canada Calling! Just wanted to drop a line and let you know that we are all thinking of you on this side of the world!
Meg, not sure where you found Uncle Simon, but you should probably mail him back to the sender! Your Mum definitely got the looks AND the brains between the two of them! heehee
Erin and Tom say hello and hope you are feeling better soon! I am saying a wee little prayer each night for all of you, I know it will be answered!
Ellie, I miss your smiling face! Hope you know that I am sending you lots of love! Love to you all!
Take care, thank you for this blog...makes the distance melt away..
Lots of Love,
Cousin Kerry in Canada

The Millers said...

Hello, Stanleys - Creigiau calling! We are thinking of you here in cold, wet Wales, and sending all the love, prayers and positive wishes we possibly can. How wonderful to be able to see pictures of the girls online - they are both so lovely, and such a credit to their parents.

I'm still rather blown away by this new technology, and totally in awe of a person who can spare the time to create a blog when there's so much going on in her life, especially as I wouldn't have a clue where to start!

Much love to you all. We still miss you.

The Millers
xxxx

Tiffany Siskey said...

Howdy Stanleys -it's San Antonio! Jane Thank you for this wonderful site it will help Suzanne and I keep up with ya'll. I know it has already been said but I love seeing pics of the girls they are growing into such BEAUTIFUL young ladies it is awesome to watch them grow. We think of ya'll all the time and just know that prayers are a flyin'!!! Meg stay strong my sweet little vixen, you have strength and courage that are beyond compare and I know it will get you through this!!! The Siskey kids send their love and support and say they miss you all tons and loads!!! GREAT BIG HUGS to you all.
Tiff

Harbords said...

Meggie - I like Hellboy - I think he's much misunderstood - do you like him because he looks like your Dad?
Hope you liked the very expensive Christmas present I sent you - hope it didn't get lost in the post!
Did your Dad support South Africa or Australia in the cricket - by the way do you know what the capital of South Africa is?
It's very very cold here today, and Carolyn wishes she was back in Australia.
Tell Uncle Simon that Carolyn can do 680 hoops on the hula-hoop on the Wii - without falling over!!
I wanted to tell you that you still smell of poo, but Carolyn says I can't!
Lots of love Paul and Carolyn

thebeegeez said...

Hi Meggie Moo. I talked to your Mom the night before you went in and she said you are as strong as ever, Way to go Megs !!!! I hope that you go home very soon and will feel much better, you need your strength so that you can drive your Mom up the wall :)

We all send you lots of love from Austin, big slobby kisses from the doggums too

Hugs to you Megs xoxooxooxoxoxo

STEWART said...

Hi Megs,

It was really great to speak to you on Christmas Morning and we are praying that your chemo will be successful and that you will sooon be home.
How did you like the hiding our Cricket Team gave the Aussies today? For your friends Paul and Carolyn - the capital of South Africa is still Pretoria.

Jane - this is a great idea. I'm pretty sure that Doris will not be able to cope with it though so I will keep her up to date with the occasional e-mail and will let her see the blog site when she visits us between the 10th and 17th.

To all of you, keep smiling and keep praying.

Lots of love from

Stewart and Nicky

Clare said...

Hi Meg,

You don't know me but I have known your mum for more years that I care or dare to mention!!
You sound like an incredible young lady with great spirit and fight.Your courage astounds me.
I have a daughter called Megan who is the same age as you I would love you to meet one day as I am sure you would get on like a house on fire.
All our thaughts ,prayers and very best wishes are with you all, stay strong keep smiling sweetheart,love to you all
Fab way of keeping everyone in the loop Jane .
lots of love speak soon ,Clare x x x

phmid said...

Hi Meggie Moo, Nana & Grandad 'ere trying to keep up with these clever people who know how to send 'blogs', whatever they are!

Anyway, Mummy told us today that you have been named by the Hospital staff for a Bravery Award. FANTASTIC!! You wouldn't believe how chuffed we are! Just keep doing what you've been doing, keeping brave & strong and you'll sail through.

Only 10 more sleeps before I'm with you all again. Yippee!!!

Grandad says he's looking forward to seeing you in rude health later in 2009 - when it's a bit cooler!

Loadsa hugs and kisses to y'all,

Nana & Grandad xxxxooooxxxx

phmid said...

Morning sweetheart.Happy New Year to you.We just have to believe it will be.I have just read your blog love and i just wish so much I was with you.I hope you managed to sleep well and get rid of this terrible Year.I know you must have felt lonely last night but I have been with you in spirit all day and night.If you read this when you get up,ring me and iwill ring you straight back.I will be with you very soon nowAll my love.Muxxxx

KG said...

Hi Meg

I am a friend of Lisa's.

My family just wanted to say you are one tough cookie and one special girl. You are an inspiration to us all. My son is having an operation at PMH soon and it is fantastic to know how well you doing. I expect he won't be half as brave as you. You go girl.

Kate, Terry, Nicolae, Anna & Ben