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!