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
Monday, December 28, 2009
Saturday, December 5, 2009
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
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
Sunday, October 25, 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!
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!
Tuesday, September 22, 2009
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........
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........
Tuesday, September 15, 2009
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
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
Monday, August 24, 2009
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
WELL DONE MEGGIE MOO!!!!
XXXXXXX
Thursday, August 20, 2009
Friday, August 14, 2009
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???"
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!
http://www.strikeachord.org.au/viewStory/Audio
Please comment to let me know if you heard it!
Monday, August 10, 2009
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
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
Friday, August 7, 2009
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.......:)
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.......:)
Tuesday, July 28, 2009
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!!!
Thursday, July 23, 2009
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...... :)
Tuesday, July 21, 2009
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
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
Tuesday, June 30, 2009
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
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
Sunday, June 21, 2009
"Sigh"......
We're back to PMH tomorrow and starting all of Meggie's tests. CT scan, bone scan, kidney function, hearing test, blood tests..... and then the waiting for the results.........It all sounds pretty straightforward but there are a lot of needles, infusions of tracers and blood taking involved, so Meg's not looking forward to it at all.
I had a "meltdown" again this morning. It came from nowhere and it's many hours later now and I still feel so......not sure what the word is........dread-ful, as in, full of dread.....and afraid....... I suppose it's because I know that we're coming closer to knowing whether the chemo and surgery have done what we want them to do, and if they have, which I'm fully expecting, then we're going to be watching, worrying and waiting every month for the results of blood tests. I know that sounds terribly negative, and most of the time, I'm really not negative. I'm just so scared.....
Meg's had lots of fun during the time we're been free of hospital visits (almost three weeks!) She's had two whole weeks at school and she's started riding lessons, and spends as much tme as she can at the stables, looking after the horses, mucking out, tacking up and generally learning about the groundwork of horse care. She even has her own jodphurs and looks fab in them! The other girls at the stables are really lovely to Meg, and she feels very welcome there. Yesterday I took her for her riding lesson at 8am and she spent the rest of the day helping out, and got a free ride at the end of the day and did her first jump which she was absolutely delighted about. Phil went to collect her and it was pouring with rain so when she called me from the car after the ride I asked her if she was drenched and she said she was so I said I'd have a nice warm bath ready for her when she got home. She said "No! I want to keep smelling like horse!!" How gorgeous......
I had a "meltdown" again this morning. It came from nowhere and it's many hours later now and I still feel so......not sure what the word is........dread-ful, as in, full of dread.....and afraid....... I suppose it's because I know that we're coming closer to knowing whether the chemo and surgery have done what we want them to do, and if they have, which I'm fully expecting, then we're going to be watching, worrying and waiting every month for the results of blood tests. I know that sounds terribly negative, and most of the time, I'm really not negative. I'm just so scared.....
Meg's had lots of fun during the time we're been free of hospital visits (almost three weeks!) She's had two whole weeks at school and she's started riding lessons, and spends as much tme as she can at the stables, looking after the horses, mucking out, tacking up and generally learning about the groundwork of horse care. She even has her own jodphurs and looks fab in them! The other girls at the stables are really lovely to Meg, and she feels very welcome there. Yesterday I took her for her riding lesson at 8am and she spent the rest of the day helping out, and got a free ride at the end of the day and did her first jump which she was absolutely delighted about. Phil went to collect her and it was pouring with rain so when she called me from the car after the ride I asked her if she was drenched and she said she was so I said I'd have a nice warm bath ready for her when she got home. She said "No! I want to keep smelling like horse!!" How gorgeous......
Monday, June 1, 2009
And we thought we were done......
Meggie came home last Wednesday after having her "last" cycle of chemo. She was doing pretty well. She still had some nausea and her energy levels were a bit low but she soon picked up when I arranged for her to have her first horseriding lesson on Wednesday! She also went to the riding stables on Saturday as a "warm up" to help out and do some ground work; tacking up, grooming etc. She was in her element!! Unfortunately her nausea kicked in around lunchtime and she needed to come home. This was obviously a sign of things to come......... She remained pretty low for the rest of the day with no appetite, but no temperature, but by Sunday morning she was feeling worse. Her temp started creeping up so we called the hospital and were told to bring her in. By the time we got here her temp was 40.3 degrees C (or 104.5 degrees F if you still use that!) She was really sick. She said she was freezing cold but to the touch her skin was roasting. She was immediately given a dose of antibiotics and then put onto an IV. She was very neutropenic (i.e. no immunity) and anaemic. So much so that she ended up having four units of blood transfused throughout the whole of the night. By yesterday morning she was so much better. Her temp had gone right down and after having all that blood she was feeling great. We're still in PMH at the moment. She needs to be clear of a temperature for 48 hours before they're happy for her to go home. The also need to get the results of her blood cultures to see if there is an infection in her infusaport which may have caused her infection..... So we're waiting for these results now and if we get to 6pm this evening without a temp spike and as long as her blood cultures are negative, we should be able to get out......fingers crossed! We have to be out in time for tomorrow's riding lesson!
It's really ironic.....Throughout all of the chemo that Meg's had, she's never once had a temperature that caused her to be admitted, and she's never needed blood transfusions (other than during her surgeries), and now after her last chemo, she gets both! We're just very lucky that she's been as well as she has between all of her treatment, and that we've only had to do this once in the last 16 months.......
We're back in to PMH on 22nd and 23rd June for all of her final tests; bone scan, CT scan, kidney function test, hearing test and bloods. A week later we'll meet with Meg's oncologist to find out the results. THAT will be a big day, and hopefully one full of good, positive news..........
It's really ironic.....Throughout all of the chemo that Meg's had, she's never once had a temperature that caused her to be admitted, and she's never needed blood transfusions (other than during her surgeries), and now after her last chemo, she gets both! We're just very lucky that she's been as well as she has between all of her treatment, and that we've only had to do this once in the last 16 months.......
We're back in to PMH on 22nd and 23rd June for all of her final tests; bone scan, CT scan, kidney function test, hearing test and bloods. A week later we'll meet with Meg's oncologist to find out the results. THAT will be a big day, and hopefully one full of good, positive news..........
Friday, May 22, 2009
Arrrrggggghhhhhhh!
I'm sick! I've got myself a cold and cough so couldn't go into hospital with Meg for her chemo. Phil's had to take her which is absolutely fine; I know Meg will be very well taken care of by her Daddy. It's just me! I feel really weird not being with her. I keep texting and calling to talk to her; it's so frustrating. I know it couldn't be helped, getting sick, but I still feel like I'm letting her down by not being there. I just like to know exactly what's happening and make sure they don't forget anything....silly I know.... I can't even visit because the ward staff have told me not to visit until I'm well. I thought I was feeling a bit better yesterday, but I've woken up this morning feeling really wretched, and have a temp of 38, so I'm hoping this is the worst day and I start to improve quickly so I can be with Meg. Apparently it's a problem for a number of parents on ward 3B at the moment. There's a nasty strain of the cold going around and it could be very serious for the children if they got it as they're all immuno-compromised. I think I'll go down to the hospital anyway and wavethrough the window to her from outside - I might not be the only parent there!
So, if you have any miracle remedies to get rid of a cold quickly, please pass them on! Thanks!
J xxx
So, if you have any miracle remedies to get rid of a cold quickly, please pass them on! Thanks!
J xxx
Tuesday, May 19, 2009
Last one.....(hopefully)
Hi Everyone. So sorry for the long gap in between posts. I'm now back at work and I seem to run around like a headless chicken most of the time!
Well, as the title of the post says, we're going in on Friday for what we're hoping and praying will be Meg's last cycle of chemo. I'm so glad for her that she feels that this part of her journey is coming to an end, but I'm not jumping up and down about it because I know that her cancer is very unpredictable. We just have to say goodbye to that part of the journey and hope that we never have to face bad news again.
Once this cycle of chemo is over, Meg has to go through loads of tests again to see what the chemo has done, and then, if "all clear" she'll go to having monthly blood tests indefinitely. The way that they'll be able to tell if anything is going on will be from her AFP (Alpha Feta Protein) level. Her oncologist has said that she has a 50% chance of the cancer not coming back. If it does come back, it depends WHEN it comes back. If it's in a few years time, then she can be treated again with the same protocol of chemo that she's just had. If the cancer returns sooner than that, then we have a very serious problem in that there isn't anything else that they can treat her with. As you can imagine, we don't even want to "go there". We have to believe that she's going to be fine and well and that this vile disease is gone from her body.
Meg's doing really well at the moment. She's got colour in her cheeks, and enough energy to have a really good scrap with her sister on a fairly regular basis, so she's obviously feeling OK! Obviously this next cycle will knock her down again, but she always bounces back quickly even though with each one she gets more and more depleted.
I just can't wait for her to be able to get back to some sort of normality; start a sport, grow her hair so I can go back to nagging her to wash it again!! I can't believe that she's been bald (apart from a brief spell during remission) for a year. She's starting to think about what she would like for her "Make a Wish". They like the children to make their wish when they're off treatment. She's still veering towards a cruise! Great choice Meg :)!
Last weekend, we had a very special treat..... Our lovely friend Lisa had organised for a chef (Ritz London trained no less!) to come to our house and cook for us! Meg chose the menu, and we had a group of friends come along as well. What a meal! Meg loved it and asked if Chef Richard could come and cook for us every weekend! I wish! We ate amazing antipasto, traditional roast beef and the most fantastic roasties and yorkies ever, followed by creme brulee. It was wonderful. And he washed up afterwards!!
So....two more days and then back to Hotel 3B for 6 days, and then who knows what.......? I'm believing, praying, hoping that my feisty redhead will be well for a long, long time, and be able to go back to being a normal, carefree child again.
Keep those prayers and positive thoughts flying through to us!
Jane xxxxx
Well, as the title of the post says, we're going in on Friday for what we're hoping and praying will be Meg's last cycle of chemo. I'm so glad for her that she feels that this part of her journey is coming to an end, but I'm not jumping up and down about it because I know that her cancer is very unpredictable. We just have to say goodbye to that part of the journey and hope that we never have to face bad news again.
Once this cycle of chemo is over, Meg has to go through loads of tests again to see what the chemo has done, and then, if "all clear" she'll go to having monthly blood tests indefinitely. The way that they'll be able to tell if anything is going on will be from her AFP (Alpha Feta Protein) level. Her oncologist has said that she has a 50% chance of the cancer not coming back. If it does come back, it depends WHEN it comes back. If it's in a few years time, then she can be treated again with the same protocol of chemo that she's just had. If the cancer returns sooner than that, then we have a very serious problem in that there isn't anything else that they can treat her with. As you can imagine, we don't even want to "go there". We have to believe that she's going to be fine and well and that this vile disease is gone from her body.
Meg's doing really well at the moment. She's got colour in her cheeks, and enough energy to have a really good scrap with her sister on a fairly regular basis, so she's obviously feeling OK! Obviously this next cycle will knock her down again, but she always bounces back quickly even though with each one she gets more and more depleted.
I just can't wait for her to be able to get back to some sort of normality; start a sport, grow her hair so I can go back to nagging her to wash it again!! I can't believe that she's been bald (apart from a brief spell during remission) for a year. She's starting to think about what she would like for her "Make a Wish". They like the children to make their wish when they're off treatment. She's still veering towards a cruise! Great choice Meg :)!
Last weekend, we had a very special treat..... Our lovely friend Lisa had organised for a chef (Ritz London trained no less!) to come to our house and cook for us! Meg chose the menu, and we had a group of friends come along as well. What a meal! Meg loved it and asked if Chef Richard could come and cook for us every weekend! I wish! We ate amazing antipasto, traditional roast beef and the most fantastic roasties and yorkies ever, followed by creme brulee. It was wonderful. And he washed up afterwards!!
So....two more days and then back to Hotel 3B for 6 days, and then who knows what.......? I'm believing, praying, hoping that my feisty redhead will be well for a long, long time, and be able to go back to being a normal, carefree child again.
Keep those prayers and positive thoughts flying through to us!
Jane xxxxx
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!!
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
update
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
Meggy
xxxxxxxxxxxx
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
Meggy
xxxxxxxxxxxx
Sunday, April 12, 2009
Children of Courage Award
Just to let anyone know that's interested in coming along.....
Meg will be receiving a
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!
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
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 ho.....at 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.
Wednesday, March 18, 2009
Home Sweet Home.......
We got home around 3pm today after Meg had her drainage tubes removed and lots of faffing around was completed..... Removing the tubes was quite traumatic and painful and the wounds are pretty sore and bruised, but all in all she's doing great and nobody can believe that it's only a week to the day since her operation! Marianne (the oncologist) came to see us before we left to give us the results of the tumour histology. All of the tumour was removed with a good margin of healthy tissue around the whole thing. Most of the tumour was necrotic, but some of it was still active. This could mean that there are other diseased cells in Meg's body that could become problematic in the future so more chemotherapy is vital. After a long discussion about working around the much anticipated visit of my brother Simon and his youngest daughter Jennifer, on 29th March, we agreed that 8th April would be the next round of chemo. Marianne feels that we have an advantage over this disease now, and that she wants to maintain that advantage by bombarding it with 3 more cycles of chemo. We all pray that this plan of action will do the trick and leave our little girl to get on with her life.....
I went to pathology yesterday and saw the right lobe of Meg's liver that was removed and the tumour. I'm sure lots of people think that I'm strange wanting to do that, but it does help me process the whole thing. I did the same with the first huge tumour that she had removed. I wanted to see this cancer; this monstrous disease, that is threatening my Meggie's life. My first sight of it made me gasp a little and the first thing that came out of my mouth was "oh bless....that's part of my little girl...." The lobe of her liver was much bigger than I expected, as was the tumour, but I could clearly see that it was all out, and there in front of me. It made me feel so sad that this "specimin" and all the slices next to it came from my Meg's body, but when I saw the tumour I felt so mad. It was so obviously different and sinister to me. Maybe that's what helps me - being able to actually direct my anger at something physical, instead of just the word "cancer". Whatever it is, I'm glad that I did it, but I hope I never have to see another piece of my little girl on a sterile tray ever again.
Here are a couple of photos taken this afternoon - both sleeping (again!) but she has had a very big week so I'm sure you'll all understand.
I went to pathology yesterday and saw the right lobe of Meg's liver that was removed and the tumour. I'm sure lots of people think that I'm strange wanting to do that, but it does help me process the whole thing. I did the same with the first huge tumour that she had removed. I wanted to see this cancer; this monstrous disease, that is threatening my Meggie's life. My first sight of it made me gasp a little and the first thing that came out of my mouth was "oh bless....that's part of my little girl...." The lobe of her liver was much bigger than I expected, as was the tumour, but I could clearly see that it was all out, and there in front of me. It made me feel so sad that this "specimin" and all the slices next to it came from my Meg's body, but when I saw the tumour I felt so mad. It was so obviously different and sinister to me. Maybe that's what helps me - being able to actually direct my anger at something physical, instead of just the word "cancer". Whatever it is, I'm glad that I did it, but I hope I never have to see another piece of my little girl on a sterile tray ever again.
Here are a couple of photos taken this afternoon - both sleeping (again!) but she has had a very big week so I'm sure you'll all understand.
Tuesday, March 17, 2009
WE'RE GOING HOME!!!!
Just a quick post to let you know that the docs are happy for Meg to have her two drainage tubes out of her abdomen today and then we can go home! We're amazed that she's bounced back so very quickly after having us so worried for the first few days! It's only a week today since her surgery! So I'm starting to pack up now and hoping that Marianne (Meg's oncologist) will be up to see us with results of the tumour histology before we go.......
Eeehhhh, my Meg....she 'int 'arf tuff!!!! :)
Eeehhhh, my Meg....she 'int 'arf tuff!!!! :)
Saturday, March 14, 2009
Day 4 post op
Well, our Meggie has had a hard few days..... She's been very low and "flat" and it's been awful to see her looking so defeated, but as one of her surgeons reminded us, she began this surgery at a low point. She was still under the affects of the chemo and she was anaemic too, so it's understandable that she is taking a while to pick up. Plus, she's had a massive surgery during which the surgeons looked all around her abdomen and pelvis for signs of the disease. Thankfully, they couldn't see any evidence of further disease, so we're now waiting for the results of the histology on the tumour that was removed from her liver. Over the past 24 hours she's had a few more "lines" removed. Her epidural has been taken out and she's now on a self administering pain medication that goes straight into her port. She just presses a button when she feels the need for more relief, but she can't overdose herself. Actually, Meg is in the habit of under-dosing herself and has to be reminded to use the medication! She's had another peripheral cannula removed too so both her arms are line free now. She's also off the oxygen as she's now able to maintain her oxygen saturation with her own breathing. She's had some physio to help her with this. She has to deep breathe every hour in order to fill the lower part of her lungs. She's tending to shallow breathe and only use the top part of her lungs because of the size of her incision but she's doing really well with her exercises. She's also got to move her legs and feet regulalry to prevent blood clots developing. She stood and walked about 5 steps today and then walked on the spot for 10 steps which was great. We had our first standing up cuddle for 5 days :) One of her surgeons came to see her this morning and felt that she had "turned the corner" which is very reassuring for us.
So, Meg and I are now watching Harry Potter - The Goblet of Fire - Meg on the chair and me on the bed! I gave her a bed bath earlier and a change of PJ's and she's nibbling on grapes and drinking lots of water. Her appetite hasn't returned yet but she is managing to eat bits of soft fruit.
Here's my little warrior.......I love her so much..... It's not the best shot of her - she didn't want her photo taken!
Yesterday, three of the wonderful oncology nurses; Kate, Michelle and Ramina, came to visit Meg and sang "My Girl" to her which was just gorgeous. I videoed it on my mobile phone with the intention of posting it on the blog, but couldn't get it to work (sorry girls! I know how much you were looking forward to seeing your "moves" on here!) Thanks so much you lovely ladies for making the effort and taking the time out for "my girl" XXX
So, Meg and I are now watching Harry Potter - The Goblet of Fire - Meg on the chair and me on the bed! I gave her a bed bath earlier and a change of PJ's and she's nibbling on grapes and drinking lots of water. Her appetite hasn't returned yet but she is managing to eat bits of soft fruit.
Here's my little warrior.......I love her so much..... It's not the best shot of her - she didn't want her photo taken!
Wednesday, March 11, 2009
Update from PMH...
Just a very quick update about how things went with Meg's surgery because I'm really tired and can't think straight having sat in a hard chair in ICU all night!
Meg is doing really well. The surgery had no complications. She only needed two units of blood during the operation and they removed the right lobe of her liver, her gall bladder and shaved an area off her diaphragm where the tumour had stuck to it. When she came into ICU we were expecting her to still be intubated, but she wasn't, thankfully, and she was breathing on her own. She still had lots of "lines" in; central line in her neck, an arterial line in her wrist, two peripheral lines, a naso-gastric tube, nasal oxygen prongs, two drains coming out of her abdomen, a catheter and an epidural. She was pretty sick when she first came out and vomitted quite a lot, but that settled down eventually. Her central line, one periheral and the arterial lines are now out and she's doing so well that we've been transferred onto the ward and out of ICU! We were originally expecting to be in ICU for up to 4 days so that just shows how incredible she is.
So, we're now in room 7 on ward 5c (if anyone is passing) and she's still very "out of it". She can manage to nod or shake her head, but movement of any kind is really painful for her at the moment (even with the epidural).
All of your prayers and positive thoughts worked wonders - thank you all. Please keep them coming for a speedy recovery.
Meg is doing really well. The surgery had no complications. She only needed two units of blood during the operation and they removed the right lobe of her liver, her gall bladder and shaved an area off her diaphragm where the tumour had stuck to it. When she came into ICU we were expecting her to still be intubated, but she wasn't, thankfully, and she was breathing on her own. She still had lots of "lines" in; central line in her neck, an arterial line in her wrist, two peripheral lines, a naso-gastric tube, nasal oxygen prongs, two drains coming out of her abdomen, a catheter and an epidural. She was pretty sick when she first came out and vomitted quite a lot, but that settled down eventually. Her central line, one periheral and the arterial lines are now out and she's doing so well that we've been transferred onto the ward and out of ICU! We were originally expecting to be in ICU for up to 4 days so that just shows how incredible she is.
So, we're now in room 7 on ward 5c (if anyone is passing) and she's still very "out of it". She can manage to nod or shake her head, but movement of any kind is really painful for her at the moment (even with the epidural).
All of your prayers and positive thoughts worked wonders - thank you all. Please keep them coming for a speedy recovery.
The first two pictures were taken this morning in ICU and the second one was taken about half an hour ago on the ward.
Tuesday, March 10, 2009
Today's the day.....
Today Meggie will be having a very long and large surgery to remove up to half of her liver. I could follow that up with lots of technical information, but I just don't feel like going over all of that again. Sorry. Suffice to say that we're dreading today and will be relying on the skilled hands of her surgical team, and all of the prayers and positive vibes winging her way from across the globe. Thank you all......
Below is a photograph (which some of you have already seen) that was taken at a recent session we had done. The studio very kindly gave this to Meg, along with a card wishing her all the best, to keep by her bedside and make her smile.
Wednesday, March 4, 2009
Results...
We went to PMH yesterday for Meg to have a full blood count and to hear the results of her PET scan that she had last week. There are two sides to the results. The good being that the tumour at the top of her liver was not "lighting up" on the scan. This is a good indication that it's necrotic and not active which is great. The PET scanner did however report an area of concern in a different part of her liver (although it's not very clear at all) and in her remaining ovary. As Dr Nick told us, the people that "read" these scans tend to "sit on the fence" when diagnosing so basically they're saying that it could be something, but it could be nothing....... PMH have a paedricatric PET scan reader (not sure what they're officially called) who will give his opinion on Meg's results at a meeting on Monday. So.......good news, and maybe some bad news...... It's so frustrating, worrying, sickening....emotions that I can't find words for.. What is it about Meg's cancer that it's resistant to the usually successful treatments?? I know that she's receiving the best oncologic care, and Phil and I were reasurred again yesterday to hear that Meg's oncologist, Marianne is a world expert on Germ Cell Tumours, but this cancer is, and I quote Dr Nick,"challenging us all". Meg's also anaemic so is on iron tablets and lots of green leafy veg now to get her bloods up before the surgery. She's probably going to have a transfusion on Monday so get her as well as she can be for the huge challenge ahead of her.
Meggie is really keen to go riding again this weekend so I'm going to make a few calls now to see if I can book it. Thanks to everyone for texts, facebook messages, emails and phone calls......we appreciate every single one of them, so even though we don't reply individually, please know that you're making a difference.
Jane xxx
Meggie is really keen to go riding again this weekend so I'm going to make a few calls now to see if I can book it. Thanks to everyone for texts, facebook messages, emails and phone calls......we appreciate every single one of them, so even though we don't reply individually, please know that you're making a difference.
Jane xxx
Monday, March 2, 2009
You HAVE to listen to this......
Meggie has been "surfing" and she really wanted me to hear this. It's so poignant..... She just wants to "throw caution to the wind" and "run with the wild horses".
http://www.youtube.com/watch?v=-lI5_Afk_Xg
XXX
http://www.youtube.com/watch?v=-lI5_Afk_Xg
XXX
Tuesday, February 24, 2009
Monday, February 23, 2009
Another cycle down...
So, Meg's unexpected cycle of chemo is over and done. We're still in the hospital, and hooked up to fluids etc,. but with a bit of luck the docs will be happy for her to go home as long as her nausea is under control.
I should have posted this blog earlier because I know people were waiting to hear how things were going, but something was stopping me.....probably not wanting to truly confront the next phase of our journey. I'll come to that later....
We came in on Thursday morning which as you know was Meggie's 11th birthday. She had a lovely couple of hours at home opening her pressies (pics to come on a separate blog) and then it was off to "Hotel 3B"! We had a wonderful welcome from everyone on the ward; they sang Happy Birthday a few times and she received more pressies from staff and other patients which was lovely! The Camp Quality puppets even sang to her which she found very embarrassing! Her chemo was started in the evening and she did amazingly well for two days; no nausea or sickness and her craving for Subway sandwiches was strong! Late on the second day, her nausea and vomiting kicked in and stayed there until this afternoon. The chemo has a cumulative effect so the further into the cycle she goes, the worse the nausea is and the more medication she needs to control it. Thankfully, everything is under control now and we have our "Oncology show bag" full of medications to keep her feeling well. She's now feeling much better and we're going to be discharged tonight. Yay!
Our next stay is due on March 11th and the thought of it at the moment is quite traumatic. The story so far on Meg's test results is that the tumour on her liver that is causing most concern hasn't changed at all. It hasn't grown and it hasn't shrunk. This could mean that the tumour tissue is necrotic. However, the last time her tumour was biopsied, it showed that the tissue was necrotic, but a few weeks later it sprang back into life again. The oncologists, radiologists and surgeons all felt that it would be best for Meg to remove this problem tumour as it just doesn't react as they expect it to. So, the upshot of this is that Meg will have a partial hepatectomy (removal of the liver) on March 11th. Her surgeon has spoken briefly to me about the surgery and it'll take between 4 - 6 hrs, followed by 2 - 4 days in intensive care, then up to 2 weeks on the ward. It's a huge operation and she'll have two more large incisions on her abdomen in an upside-down T shape. They won't know until they "go in" how much of her liver they'll need to remove, but it could be up to half of it. The tumour is very high in her liver, and close to her diaphragm, and they may have to remove some of that too. The surgeon who's doing the operation is a guy who's a specialist in liver transplants in adults and works from a private hospital here in Perth.
Meg, as usual is taking this news in her stride, but I'm going to try and get her to post a blog on here to "talk" about her feelings. She does keep things quite close to heart at times, and she's been too sick this week for us to really talk about it. I'm feeling very apprehensive about the operation. I remember what it was like waiting for 4 hours for her when she had her open heart surgery in 2000, and it was awful. The waiting is the hardest part. I just want to get back to her and hold her, and kiss her and let her hear my voice.
So, we're sitting here patiently waiting for the doctors to say we can go home. We can't leave until 7pm (it's all to do with the timing of her last dose of chemo and needing to be on IV fluids for 24 hours afterwards). Then we get to stay home for a couple of weeks, apart from a few more day visits for blood tests, a PET scan and cross matching of blood just before her operation. Meg can't wait to get back into her own bed and not have to get up a couple of times for a bathroom trip during the night!
Thanks to everyone for following our journey and posting comments. I know that some of you are having real problems posting comments, and I'm sorry that I can't help....it seems to be very temperamental! We do know that you're all "with us" and we'll be keeping you posted on developments.
Jane xxx
I should have posted this blog earlier because I know people were waiting to hear how things were going, but something was stopping me.....probably not wanting to truly confront the next phase of our journey. I'll come to that later....
We came in on Thursday morning which as you know was Meggie's 11th birthday. She had a lovely couple of hours at home opening her pressies (pics to come on a separate blog) and then it was off to "Hotel 3B"! We had a wonderful welcome from everyone on the ward; they sang Happy Birthday a few times and she received more pressies from staff and other patients which was lovely! The Camp Quality puppets even sang to her which she found very embarrassing! Her chemo was started in the evening and she did amazingly well for two days; no nausea or sickness and her craving for Subway sandwiches was strong! Late on the second day, her nausea and vomiting kicked in and stayed there until this afternoon. The chemo has a cumulative effect so the further into the cycle she goes, the worse the nausea is and the more medication she needs to control it. Thankfully, everything is under control now and we have our "Oncology show bag" full of medications to keep her feeling well. She's now feeling much better and we're going to be discharged tonight. Yay!
Our next stay is due on March 11th and the thought of it at the moment is quite traumatic. The story so far on Meg's test results is that the tumour on her liver that is causing most concern hasn't changed at all. It hasn't grown and it hasn't shrunk. This could mean that the tumour tissue is necrotic. However, the last time her tumour was biopsied, it showed that the tissue was necrotic, but a few weeks later it sprang back into life again. The oncologists, radiologists and surgeons all felt that it would be best for Meg to remove this problem tumour as it just doesn't react as they expect it to. So, the upshot of this is that Meg will have a partial hepatectomy (removal of the liver) on March 11th. Her surgeon has spoken briefly to me about the surgery and it'll take between 4 - 6 hrs, followed by 2 - 4 days in intensive care, then up to 2 weeks on the ward. It's a huge operation and she'll have two more large incisions on her abdomen in an upside-down T shape. They won't know until they "go in" how much of her liver they'll need to remove, but it could be up to half of it. The tumour is very high in her liver, and close to her diaphragm, and they may have to remove some of that too. The surgeon who's doing the operation is a guy who's a specialist in liver transplants in adults and works from a private hospital here in Perth.
Meg, as usual is taking this news in her stride, but I'm going to try and get her to post a blog on here to "talk" about her feelings. She does keep things quite close to heart at times, and she's been too sick this week for us to really talk about it. I'm feeling very apprehensive about the operation. I remember what it was like waiting for 4 hours for her when she had her open heart surgery in 2000, and it was awful. The waiting is the hardest part. I just want to get back to her and hold her, and kiss her and let her hear my voice.
So, we're sitting here patiently waiting for the doctors to say we can go home. We can't leave until 7pm (it's all to do with the timing of her last dose of chemo and needing to be on IV fluids for 24 hours afterwards). Then we get to stay home for a couple of weeks, apart from a few more day visits for blood tests, a PET scan and cross matching of blood just before her operation. Meg can't wait to get back into her own bed and not have to get up a couple of times for a bathroom trip during the night!
Thanks to everyone for following our journey and posting comments. I know that some of you are having real problems posting comments, and I'm sorry that I can't help....it seems to be very temperamental! We do know that you're all "with us" and we'll be keeping you posted on developments.
Jane xxx
Tuesday, February 17, 2009
A detour.....
Well, our little Meg gets to spend her birthday in hospital - again...... It's one year today since I took her into PMH emergency room and she was diagnosed with germ cell tumour. Her birthday was the day after and, although we did our best to give her a good day, it was very much overshadowed by events. So, plans were for her to have her birthday at home this year, and to try and make up for last years fiasco. Up until yesterday afternoon, that was what would be happening. Then the phone rang........
Marianne, Meg's oncologist was on the other end. She's spoken to Meg's surgeon and he wants to do a partial hepapectomy (partial removal of the liver) on March 11th. This put them in a dilemma though, because it's over two weeks since Meg had her last lot of chemo, and it's three weeks until the surgery. So, the poor love gets another round of chemo, starting tomorrow - her 11th birthday :(
To top it all off, we had news yesterday that our application for renewal of our visa to live in Australia has been granted for Phil, me and Ellie, but refused for Meg on medical grounds. We're investigating the implications of this, but I fear it's going to take us into yet another battleground... Fortunately, it looks like we have the full backing of Phil's wonderful employers, The Association For The Blind, so we're hoping for a good outcome... I can't bear the thought of having to leave Oz and removing Meg from the fantastic care she's receiving at PMH.
We had a little respite on Sunday afternoon and had a couple of hours at the beach with Nana. It's so beautiful and only 10 minutes away from our house - we're so lucky. Ellie took her camera and took 130 pics in 2 hours!! She's quite the budding photographer! Hope you like her pics.
So, if anyone is going to be around PMH over the next week, we'd love you to drop in and see us.....Ward 3B (we'll probably be in room 7)
Love to all....... Jane x
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