And on to a new battle ......

Months have gone by.....our lives have been on hold..... I'm so relieved and blessed to be able to report that Meggie is still in remission, thank God. That's 16 months now. She's incredible....just incredible. Her recent CT scan and blood tests all came back normal in September. That's always such an anxious time; waiting for results. Cancer, particularly ovarian, is so incidious. The symptoms are so vague. When Meg was disgnosed she had minor symptoms but was a stage 4 when we found out. There is no stage 5. That's how sneeky and vile it is. So you always wonder and worry "is it back?" Waiting in the outpatients department a week after the tests, being called through to the oncologists office, wondering what the hell they're going to tell you, is, to put it mildly, stressful.

Cancer has become very much in the forefront of our minds again recently.... we are devastated that Meg's beautiful friend Evie lost her bravely fought fight with this hideous disease on September 15th. She was only 11 years old. NOTHING can prepare you for that. It's just so wrong on every level that a wonderful, life-loving, magnificent child like Evie should have to leave her family, and in such a cruel way, and that her beautiful parents will now spend their lives in a grief-filled prison. The day after beautiful Evie passed away, we lost another of the gorgeous girls who had been battling. Tayla; aged 16 - stunning, articulate, a gentle soul. Gone. This meant that we as a family attended two children's funerals in two days. Totally and utterly unbelievable.... This is the reality of childhood cancer. And it scares me so much.

Having experienced these two amazing young girls, in life and in death, our lives have changed as a result. I'm 45 years old and Evie's funeral was the first child's funeral I have ever been to. I NEVER want to have to go to another. Ellie and Meg are 15 and 12 and they've been to two in two days. How can that NOT affect you? Meg is such a closed book and keeps things very much to herself most of the time, but she just didn't know what to do with her feelings. And I was lost as to how to help her. In the end I suggested that she write something down, which she did, and it broke my heart. To read about her pain, her fears, her anger, her sadness. It just seems so unfair that she has to go through this. And lovely Ellie.....she's feeling all those things too..... As much as she fights with Meg, she loves her much more and is so fearful that she may lose her one day. Cancer makes everyone so vulnerable...


We continue to battle with the Immigration Department and have recently heard that in spite of Meg being in remission for 16 months and in spite of them extending the decision time for our Permanent Residency by another 6 months to see how Meg's health went, she apparently still doesn't meet their criteria... I couldn't believe what they were telling me. What did they want to happen during that extra 6 months? She stayed well and in remission. Wasn't that what they wanted to hear? Could there have been a better result after 6 months?? NO! I feel like they're just dangling our whole lives on the end of a swinging string. They can either allow us to continue living in a country, a house and a community that we call HOME or they can totally turn our lives upside-down and inside-out and tell us to leave. All because my then 9 year old daughter was unlucky enough to get cancer two years after we arrived in Australia. So we now have to put a case together to state why we think we would be good people to keep in Australia. They want to know what assets we have, savings, property etc...I'll find out more when the huge amount of paperwork hits our doorstep. We've done all this, several times. We filled out the copious forms, we've paid the extortionate application fee, we've been patient....very.....and now they want more. So more we will give them. We will continue to cross our "t's" and dot our "i's", to be patient, and to try not to let it affect us too badly (although this is getting harder and harder), AND we will fight. As part of the fight we have an online petition running, asking for support from people who either know us, know of us, or are just human beings who can see the injustice in this. The link to the petition is http://www.ipetitions.com/petition/keep-the-stanley-family-in-australia/ Please feel free to sign it!

I think that's enough for now. Who knows what the next posting will say....

Jane xxx

Beautiful Angels Evie and Tayla

xxxxxxx

It's been a while.....

Well, we have been blessed with 11 months of remission......what an amazing achievement for Meggie. She's doing so well, and sometimes, we even forget momentarily that cancer has been a part of lives. We still have monthly blood tests and three monthly CT scans, and that does give us reassurance that a close eye is being kept on her.

We've had such a busy time of late; Ellie & Meg's nana and Grandad came out for 6 weeks which was wonderful. The girls really miss spending time with them, especially Nana, who is just like her Mum was, and I LOVED that lady so much. I can see the same relationship with my mum and my girls. The distance between us isn't good, but in lots of ways the world is a very small place and we speak almost every day on the phone....

Meg has started having extra tuition, which has been so kindly provided by The Ronald McDonald House. She has 40 hours to do, and it's with her class teacher after school. We're hoping she can get back "up to speed" before she starts high school in January. I can't believe that she's going to be a high schooler.... I was looking back on the photographs of when she was first diagnosed in 2008, and she looks such a baby.....She's spent so much of her life dealing with health issues.....it makes me so sad when I think about what she's gone through; what Ellie has gone through too as a result of Meg's health. I still find myself going over my pregnancy with Meg in detail. What if I hadn't had the ultrasounds? What if I hadn't worked with dogs? What if....as my old English Literature teacher used to say......"What if....the two saddest words in the dictionary". I know that I'll never find the answers to my questions, and that there's a possibility that it was nothing that I did, just bloody bad luck...

It's strange...I've put off writing on here for a while because I didn't think I'd have anything interesting to say, but having read that first paragraph, it just confirms that in spite of remission, this nightmare never goes away. It's not as prominent in our minds, but it's always there. Especially when Meg complains of pain, anywhere. Cancer and relapse always come flooding into my mind, then I give myself a good talking to and remind myself that all her blood work is good, the last CT scan was good, so it's just the pains of a growing teenager.

We recently did the big fundraiser for the Cancer Council's Relay For Life. We tag teamed with our wonderful friends Ali, Michelle and Evie. It was a very emotional, but very positive 24 hours and over half a million dollars was raised. I was so proud of Meg when she did the Lap of Honour" wearing her "Survivors Sash"!

Our visa saga continues.....I got everything in to immigration that they required for our permanent residency application. THAT was a lot of work! They sat on it for a while and after a couple of "prompt emails" from me, the decision came back......The Commonwealth doctor who deliberates on major health issues of applicants, has decided that he would like to wait another 6 months before he makes a decision on whether he will grant Meg residency...... My first reaction was not a particulary pretty one, but having spoken with friends and family, we have to be grateful that it wasn't a "no". At least there's still a chance.

We recenly met Sir Richard Branson! He was over to help promote http://www.strikeachord.org.au/ who have been so amazing for our family - Meg was in awe of him! Couldn't believe how much he was worth!!! I think she had designs on his island "necker" but alas it wasn't to be...! She's also going to her first camp! It's been arranged by Princess Margaret Hospital oncology, and is finded by the Broome Community. About 14 years ago a young boy named Karl from Broome was diagnosed with Leukaemia and during his treatment, really wanted his friends on the ward to experience his hometown of Broome. The community began to raise funds so that this could be achieved. Tragically, Karl didn't win his battle with cancer and passed away. The Broome Community decided to continue this funding in memory of Karl and since then, each year, kids from 3B get to have the most awesome week away - riding camels, hovercrafts, fishing, swimming and all sorts of mad things! Two oncology nurses and a play therapist go along too. I was flabbergasted when Meg agreed to go. She's never been keen on going away without us (neither am I keen to let her go without us!) but I suppose it's all part of growing up and spreading her wings....so I'll be so delighted for her, but will miss her terribly - the mobile phones will be hot!

Meggie went riding with her Aunty Sharron - something that you know she LOVES to do! She had a great time (after they tooke her off quite a feisty little gelding and put her on a nice, steady mare!)

It was Mother's Day yesterday......it turned out to be a very busy and quite stressful day, which didn't allow me the time to reflect on how very, very lucky I am to still have my two girls. So many people we know have lost their child.... It's 4am now. The house is peaceful. Now I can reflect... And I am thanking the universe, God, and whoever wants to listen, for the blessings of my beautiful daughters.

Closure......hopefully

I'm writing this from PMH again, but this time, it's a positive thing! Meggie is having her infusaport out in about half an hour! For us, it gives us hope that we're at the end of treatment, and hopefully none of us, especially Meggie, will ever have to go through this again. Meg's pretty nervous about going into theatre again. The further into this experience we go, the harder Meggie seems to find it and the more insular she becomes. She's asking loads of questions at the moment; "do you think anyone has ever woken up during surgery before?" "how long will I be in there?" "why do they have to put a tube down my throat?" Last night she said she was quite excited about having the port out because it means that she's finished with her treatment. But she then said that she's worried too that the same thing will happen as before. She had her first port removed and then 2 weeks later relapsed and had to have another one put in and started chamo again. I can't imagine what it's like for her to have such worries. Obviously I worry every day about her, as her mum, but I've never faced that fear that I may not make it, and that I will have to go through such huge and serious surgeries. That I have a disease that could kill me.....Too much for an 11 year old to have to deal with......

So....onwards and upwards for us....... We have to believe that this is the beginning of the end of this nightmare. We still have the monthly blood tests and three monthly CT scans, so it never goes away. On the one hand it's such a relief that the doctors are keeping a close eye on Meg, and on the other hand I go though major anxiety after every blood test - hoping and praying that I don't get a phone call to say there are abnormalities.

15 mins later...

I've just come back from taking Meggie to theatre and she was great. We had a first this time! Once the doctors had her cannula in and attached the syringe of anaesthetic to it, they asked Meg to push the syringe! She sent herself to sleep which was a bit bizarre.... And now we wait in the "Friendship Room" again. Here's hoping and praying that this is the last time we ever have to sit here.

1 hour later.......

And it's all done! Everything went really well and Phil's just gone through to recovery. So I'm off to see my gorgeous girl waking up...

Tomorrow...

Happy "in between Christmas and New Year!" to all of our wonderful family and friends. No cards were sent this year as we've made a nice donation to "Redkite" who have been a fantastic source of support to our family.

Our Christmas has been quiet, but blessed....this time last year we didn't think there would be four of us for Christmas 2009. BUT....there is!! And Meggie is doing great. She has reached her 6 months remission mark, which has been confirmed even more by a clear CT scan (the results of which we received on 23rd December, along with a HUGE sigh of relief!). Monthly blood tests and 3 monthly CT scans will continue until at least next June, and she'll be declared cancer free after 5 years without relapse. THAT IS GOING TO HAPPEN......

Tomorrow is a significant date in our lives. It's one year since Meggie began her second cocktail of chemo which she endured for 5 months. It's also going mark the beginning of the second round of chemo for our lovely friends, Ali, Michelle and their amazing daughter Evie. Our hearts and thoughts are with them and we're praying for a positive outcome. It's also our wedding anniversary....15 years....which is apparently our crystal anniversary.

We wish you a very happy new year. Let's hope that 2010 brings peace, stability, love, calm and health to us all...... Jane xxxx

Six months down....!

Just a quick post to let you all know that we had the results from Meggie's last blood test and everything is still good! Yay!! That's 6 months in remission now! Awesome! Obviously we're still not "out of the woods" but we just try and take every day as it comes and it's so fantastic seeing Meg enjoying a normal life again.....school, parties, riding, dancing to Michael Jackson,fighting with her sister (well, that part isn't very enjoyable for Phil and I!) We're starting to gear up for Christmas, although I think it'll be quite a laid back and quiet time, which actually suits us fine. The weather has been really kind to us so far - only a couple of stinking hot days, so we're able to enjoy the sunshine and the ocean.

Last Friday we were asked to go back into the local radio station for a follow up interview. Meggie went dressed like Michael Jackson (her obsession is impressive!) They wanted to catch up with all the special kids that they're met over the year. Em and Sam Mac were pleased to see how well Meggie was looking and surprised to see that thick head of red hair!

Please spare a thought and prayers for Meggies little friend Evie who is back in battle with her cancer. She and her parents are having a really tough time at the moment, and we know how that feels. We were in the same boat this time last year and I can't find the words to explain how terrible it is.

Meggie has another CT scan and blood test on 16th December and then results on 23rd. Hoping and praying that things continue the way they have been and that everything is good. She's doing amazingly well - L O N G may it last....

Have a very Happy Christmas and a wonderful 2010!

Jane x

BALI - October 2009

The new normal....

Hi Everyone. Long time, no post....sorry!

Well, we're back from Bali and had a good time, although it really wasn't what we expected. I suppose as Pommies, we were expecting a beautiful island paradise, but the reality is rather different in that the island is really very dirty, and sometimes quite smelly too. We just didn't expect to see that so it was a bit of a shock. Also the condition of the animals, especially the dogs, made our hearts ache too.....We ended up travelling 3 hours to the only animal welfare organisation in Bali so that we could offer some help.....!

However, the Balinese are just the most gorgeous (inside and out) people. So polite, obliging and happy. Many of them have so little and live a life that we cannot even imagine, yet, they're happy.....

Just before we left for Bali, Meg had a review for the results of her CT scan that was done a couple of weeks earlier. We were told that there seemed to be a follicle on her right ovary, which they're sure is nothing to worry about, but she's having an ultrasound tomorrow just to be sure. We really don't expect this to be a problem, but I personally prefer to err on the side of caution and rule it out.

Meggie is doing great! Still looking good, and even has a bit of a tan now! On the whole, she enjoyed Bali, especially the snorkelling day we had at Mengangan Island. I was really proud of her! She's always very reluctant to get into the ocean here in Oz (probably because there are so many things that can sting or kill you!), but at the island, she slapped on her mask, snorkel and flippers and floated around watching the most amazing variety of fish, AND a turtle(!) for 2 hours! It was awesome!

I joined a telegroup this week that is facilitated by Redkite. We're a group of 6 parents of children fighting cancer, from all over Australia, and once a week we'll be having a "conference call" to talk, support, vent, etc.... This week we talked about "The New Normal". This is a way of us realizing that what we considered to be "normal" will never happen again. Once a child has (had) cancer, they change...... I really can't say how what Meg has gone through, truly affects her.... I see it all, I support her through it all, but I can't do it for her. I don't have to have needles, big operations, poison pumped into me, lose my hair, people staring at me, the uncertainty of my future. At the end of the day, in spite of all the love and support that she receives, MEG is the one that has to go through these ordeals. And that MUST make her angry as hell..... I'd be bloody angry.... and I'd want to vent that anger. And that seems to be what the "new normal" is for us at the moment. Lots of volatility, for the slightest of reasons, but at 11 years old, maybe that's the only way she can get it out....? Even as an adult I have feelings that I just don't know how to process sometimes....frustrations, anger, sadness, fear, .... how hard is that for a child that's only been here for 11 years?! I know I'm rambling, but this is something that we're struggling with and I find that once I start typing, things start to make more sense to me.... The interesting thing is that once I threw this issue into the telegroup, I heard a resounding "I hear ya!" from the other parents. We're all going through similar kinds of behavioural issues. It's like the chemo changes your child's personality....but it's probably more that it changes their reaction to life, based on their horrendous experience of cancer.... I don't know....

The thing is, when your child is in remision, everyone thinks "Fantastic!! That's wonderful news!" And it is! It IS wonderful to see Meg doing regular things, enjoying life and being a normal young girl. BUT, it in no way means that your anxiety, struggles and fear are all gone. I'm constantly scared that it's back. The slightest twinge or pain, and I have a fear that "something" is going on. And there's a "fallout" - the results that are left from the damage that the diagnosis, the treatment, the experience, and the unpredictability of the disease leave. It makes me SO angry.

I know I shouldn't say "Why my Meg?" and I really don't very often. I know that our lives are very blessed compared to millions of people around this globe. But now and then, I do ask that question. I'll never know the answer.

I also did something this week that I'm not sure I should have done..... I watched "My Sister's Keeper" on my own (which was probably better than watching it with anyone at all!). I ended up crying harder than I've cried in a long time.... I would call it a "purge". And like my lovely boss said - it was cheaper that 6 councelling sessions!! The movie covers only the surface of what cancer patients go through, but enough to see what a nightmare it is...

I'm starting to think that this blog is a bit like a virtual councellor....

Anyway, ramble over.....off to PMH for the ultrasound tomorrow. I'm sure it'll all be fine and dandy.

My Meg ROCKS!

WOOOOOO-HOOOOOOOO!!!!!

Just called the hospital (for the third time) and finally got hold of one of the nurses that we know and Meggie's blood results are still all good! This is absolutely fantastic news for us all and yet another major achievement for Meggie. Well done honey!! We have to go back to the hospital next Wednesday for a meeting with the oncologist to go over the results of Meg's CT scan - they won't give those results over the phone - but I'm assuming that as her bloods are fine, everything else is too.

That's three months clear now - bloody fabulous!! My redhead is such a star!!

Now we can go away on holiday (we're off to Bali on 8th Oct) and really relax........

Week 12 - Bloods and CT scan....

Well it's 6.30am and we're off to PMH for another blood test, and Meggie's three monthly CT scan..... nerves, nerves, nerves.........will get the results next week.

Meg's doing great; looking really well, her hair is growing beautifully, and it's still red! Yay! Her temperament just wouldn't suit any other colour!!

We HATE going back into hospital; it brings on really uncomfortable feelings that I can't even put into words, but THANK GOD for PMH. As much we we don't like going back, we're SO glad and lucky that they're there, and are so thankful for the wonderful care that Meg's received these last 18 months.

Thanks to all of you for your continuing messages of support. Pleasee keep them coming...

I'll post Meggie's results next week.

Jane xx

STILL IN REMISSION!!!!

YAY!!! And PHEW!!! Just called the hospital and Meggie's blood results have come back and she's still CLEAR!!!

WELL DONE MEGGIE MOO!!!!

XXXXXXX

Week 8.....

.....and waiting for the results of her blood test ......

This is bizarre......

Here's another link (that hopefully will work!) to the front page article on our local newspaper. It was so weird walking into the newsagent and seeing a whole rack of Meggie's face! Meg, on the otherhand, is so...."uh...ok...that's me in the paper.....so Mum.....have you booked my riding lesson???"

http://epaper.communitynews.com.au/Archive/skins/CNG/navigator.asp?skin=cng&BP=OK&AW=1250248503376

My beautiful Belle, (Ellie!) is feeling very much in the background, and finding things really tough at the moment. She has dealt with, and continues to deal with what is happening to our family, all very graciously most of the time, but I feel that she's reaching her absolute limit of tolerance...... This gorgeous girl is SO special and has had to deal with things that very few big sisters have had to deal with, and she's done it SO well. Belle is amazing, and has had to grow up and deal with "stuff" way too early. Thank you my darling girl - WE LOVE YOU SOOOOO MUCH.....XXXXXXX

Sorry!

Just seem to be getting these link all wrong...try this one for Meg's interview. If it doesn't work, go to http://www.strikeachord.org.au and click on Audio.

http://www.strikeachord.org.au/viewStory/Audio

Please comment to let me know if you heard it!

The Interview in full!

What a wild weekend we've had!!! Ellie and Meg had an AWESOME time at the P!NK concert, and the ride in the limo (with champers!) was really special! It was lovely to have Lisa and Jay share this with us too - we had a giggle on the way to the Burswood! P!NK actually said "hi" to Meg half way through the concert, and said she can't wait to hear Meggie on her new drums! All this was in front of 19,000 people!! Plus, we've had an email from her drummer, Mark, today. What a very inspiring, energetic and positive man he is! Here's the link to Meggie's full interview for those who'd like to listen.... http://http://www.strikeachord.org.au/viewStory/Audio.



Phil and I had a wonderful time at the Strike a Chord "Sparkle" Ball. It was super emotional and apart from about half an hour in the middle of the proceedings when we were asked to stand up and declare ourselves as Meggie's parents, at which point Phil and I "disintegrated" and blubbed for about 20 minutes, we had a fantastic time!



I can't thank Strike a Chord, 92.9 radio, Automasters and of course Mum and Dad (who got the tickets for the ball for us) enough.....it's been a wonderful and very special experience. (God! I sound like I'm at the Oscars!!)



Jane xx

Radio Star!!!

Well, many of you will probably already know that we're having an amazing weekend at the moment! Meggie was interviewed on 92.9 radio yesterday about her cancer journey, plus she met with Mark Schulman (P!NK's drummer) and received a FABULOUS set of electronic drums, PLUS two tickets to see P!NK tonight at the Burswood!! We're also being taken in a stretch limo!! - Ellie and Meg to the concert, and Phil and I to the Strike A Chord "Sparkle" Ball! What a fabulous treat! As the concert and the ball are happening on the same night (at the same complex), our lovely friend Lisa and her gorgeous daughter Jay are coming along for the limo ride and then Lisa's keeping an eye on my girls, then travelling back (in style again!) with them! We were overwhelmed with this fantastic experience and generosity! You can check out part of the interview here.....http://link.brightcove.com/services/player/bcpid1184801887?bctid=32587392001.

Also, there are a couple of great pics on the Strike a Chord website http://www.strikeachord.org

I'm off to get my wild locks of hair sorted out now, in readiness for the ball.......:)

Oops...

Forgot to tell you the drummers name!!! It's Mark Schulman and you can check him out at http://www.markschulman.net/ !!!

Strike a Chord For Cancer......

Check out the website http://www.strikeachord.org.au/. This fantastic organisation was founded by some very special people who are making a HUGE difference to the lives of kids living with cancer. They are also giving our Meggie a brand new, fantastic set of electronic drums (with headphones!!). But not only that! The drums are being presented to her by Mark Schulman........mmmmm, now WHO is that you ask??? ONLY PINK"S DRUMMER!!!!! Oh.....My.....God...!!!! And not only that........... this amazing gift is being given to Meg on Friday 7th August, at 8.30am LIVE on 92.9 radio!!! She's SO excited!!!! (So am I!!!) I just hope she can speak on the day because she's very much a "one word woman" when people ask her questions about her cancer.....! If you live abroad (which many of our loved ones do) you can always tune in to the broadcast online at http://www.929.com.au/

The day after this fab event, Phil and I are off to the "SPARKLE" ball, held by Strike a Chord - huge thanks to mum and dad for the surprise tickets that came through the post the other day!!! Now Cinderella needs to find something to wear......!! Prince Charming can still fit into his tux from 15 years ago........ Bugger!!!

Phew......

OK....had a call from Meg's oncologist at work yesterday.... scared the wits out of me again because I wasn't expecting to hear from them until next week. Thankfully, it turned out to be good news, and her blood results, which normally take 5 days to come back, only took one day, and they're still clear! So, that's 4 weeks clear now...... :)

3 weeks clear......

Today we're going back to the hospital for Meg's first rouine blood test to keep an eye on her "status". The test they do is checking her Alpha Feta Protein level, which as I've said before, is the first sign of anything amiss if the level goes above 3. (when she was first diagnosed the AFP level was 17,000! That kind of puts it into perspective).She'll have this test every month and we have to wait for at least 5 days for the results.

At the moment Meg is doing fantastically well! She has oodles of energy and even when she's been out all day, mucking out stables, raking arenas, cleaning tack, rugging and feeding horses, and generally being very active, she STILL has energy enough left to annoy poor Ellie!! She's looking really well, has colour in her cheeks and her hair is starting to sprout along with eyelashes and eyebrows. She spent the first 6 days of the school holidays at the riding stables from 8am to 5pm and LOVED it! She then went to our lovely friends, Ross and Tanya's farm in Nannup with Ellie for a week. Acres and acres of beautiful landscape, fresh air, exercise and cows! She called us half way through her farm trip to say she was very homesick and wanted to come home, so Phil ended up going to collect her on the Friday. That was fine, and not totally unexpected; she's been with me constantly for the last 18 months and being away from us was bound to affect her feelings of security. I'm just happy that she had such a great holiday and was able to live her life instead of being holed up in hospital, as has been the case on most of her previous school holidays.

So, the upshot now is that Meg has been "clear" for 3 weeks. She still has a 50/50 chance of the cancer returning or staying in remission. She's relpased twice before; the first time after 9 weeks, and the second time after 8 weeks, so we're aiming for the 8 week mark to start with, and then the black cloud that follows us around may shrink a little...... Then we'll aim for 3 months, then four..... Meg's oncologist has made it very clear that she needs to stay clear for at least 12 months for her to have a chance. So THAT is what we're going to do...... We're not out of the woods yet, but we're going to do everything we can to get there. Please keep praying and sending positive, healing thoughts her way.......

Jane xxxxx

Results

Hi Everyone

Its me Meggy!

I've had all my results and...................They are all clear! Every single one!!! YAY YAY YAY

We're going to celebrate by going to Sizzlers on Friday!
That's good news for me. I am going to go in for monthly blood tests and then see what happens from then on. I think i'm doing really well and i deserve to get a horse!! :):):) ha ha( don't tell mum that!)

Talk to you later bye
xxxxxxxxxxxxxxxxxxxxx