Hi Courtney

Hi courtney

Hopefully i spelt your name right?? Yes pmh is really nice. I have seen the clown doctors!! dont tell them if you see them i don't really like them they are so annoying but there ok. What about you how are you feeling? Back to school? Is it nice not having cancer but we wont go there sorry!!


Ill cya later
take care

Megan
xx xxxxps your a really good friendxxxxxxxx

A few pics....

A few photos of my beautiful girls, Daddy and one of our new kitties, Romeo! (Ellie named him!!)

Now the waiting.....

Well, the second cycle of the chemo is done and we came home on Sunday. Meg was so keen to get home, and had been told by one of the oncologists that there was a possibility that she could come home on Saturday, but the poor love had probably the worst day of nausea and vomiting that she's every had and the only way it could be controlled was to knock her out with strong drugs. She was so disappointed and we had a few tears, but fortunately her medication kicked in and she slept through the night (apart from the routine loo trips) and felt fine the next morning.

We're back on the injections in the leg every day to get her blood count up, but she seems to be tolerating them better this time. We just got back from her weekly trip to the hospital for a full blood count and she's very neutropenic again. I guessed that she was as her energy level has dropped quite a bit and she's feeling very tired. As we were on our way to hospital this morning she was very quiet and then suddenly sat up and looked at me. We were in the middle of heavy traffic and stuck on the middle lane of a three way highway. I asked her what was wrong and she said "I feel sick"... bit of a problem that as I had nothing with me for such an event. I couldn't pull over for her to get out of the car, so I went scrambling in my handbag and found a nylon shopping bag that I keep in there. So, the nylon shopping bag got it and she felt much better. It's hard to know if it was a late effect of the chemo or a bit of car sickness.

So...now the 2nd cycle of chemo is done, now we wait. Meg has a series of tests booked for the week of 9th Feb; blood tests, CT scan, bone scan, kidney function and hearing tests and THEN a decision will be made as to where we go from here. It will probably either be surgery to remove the diseased areas on her liver and lymph nodes, or more chemo. It's the waiting that drives us mad. All the parents I speak to at PMH oncology say the same - so much waiting and worrying.

While we've been home, and with the help of Nana, Meggie's room has had a bit of a spruce up and she now has some of the nice pink on her bedroom walls that Ellie has. Can't let nice pink paint go to waste eh!? Meg got into it and did a pretty good job with the roller! She's off to the movies this afternoon with Nana to see "Hotel for Dogs" and is really looking forward to that special treat - it's so much better when Nana takes her!

It's lovely to see all the comments that we're getting on this blog - thank you everyone for taking the time to read about our journey and for all your wonderful wishes. Please know that we read every single comment and are truly thankful for your caring......

We're back in...

Well as you saw from Meg's last post, we came into hospital bright and early on Monday, packed and ready to go into the next round of chemo, had the routine blood test to check that Meg was well enough to have the chemo, and then it occurred to the staff that they hadn't given her the dose of dexamethazone that she should have had 12 hours earlier! So....they sent us home again with the medicine this time, and asked us to come back in on Tuesday morning, very early and very hydrated so that the chemo could be started pretty much straight away. Meg drank a litre of water on the 30 minute journey into the hospital so they were very pleased with her and things started happening. It was pretty nerve wracking again when they were preparing to give Meg her paclitaxel (the new trial chemo). They load up a trolley with emergency resuscitation drugs and have the oxygen ready in case she has a sever reaction to it, and watch her very closely for 3 hours while the infusion goes into her body. Fortunately for Meg, she was pretty dozey from the pre-med and slept through most of it while I watched her like a hawk, feeling her heartbeat, watching her breathing, asking questions, and praying. After that 3 hour infusion, she has another hour infusion of carboplatin followed by an hour infusion of ifosfomide. Meg knows all the names of the drugs and rattles them off like she's talking about her favourite movies!

I bumped into her surgeon yesterday too, and he confirmed that the plan was to remove as much of the lobe of the liver that was diseased, plus her lymph nodes, if her chemo has significantly reduced the size of the tumours. When I relayed this information to Meg (she did know the plan but was feeling quite fuzzy at the time) she said "But how can he take the two lymph nodes when I've only got one left?" I was a bit nonplussed as to what she meant and told her she's got lots of lymph nodes all over her body. She then blurted out "Oh! I've only got one fallopian tube!!" That was quite a bizarre conversation.....

It was lovely to see Lisa, Jay and Donna last night who popped in for a visit and a natter last night. Meg wasn't feeling too chipper so was very quiet (sorry Jay....) but seeing bright, friendly faces was great. We're always happy to have visitors; you'll always find us on ward 3B!

Meg was doing pretty well with the chemo in that she wasn't feeling sick; just very tired and "wiped out". We slept OK ( I have a bed again which is wonderful!), and only had 3 trips to the bathroom through the night. We were woken by the cleaning lady, busily cleaning all the hard surfaces, mopping the floor and making a bit of a racket, so I got up!! Meg didn't fancy any breakfast but I tempted her to try scrambled egg which the kitchen made specially for her. She managed to eat about half of it then gave up. Our lovely room mates, Ali and Evie arrived and much to Evie's delight was able to receive her chemo because her bloods were good. After a good strong coffee from the cafe upstairs, the rest of the morning was then spent doing a little bit of craft, then playing a new game that Lisa and Jay generously bought for Meg called Bananagrams. (Lisa - it's really good!) Ali beat us all but she's a bit of a scrabble queen so we didn't really stand a chance, and Meggie really wasn't in the mood to do anything but still had a go.

Next came the dreaded mouthcare..........(insert a dastardly tune here...). What a nightmare. Poor Meg just cannot stand to do her mouthcare when she's on chemo. As well as feeling nauseous, the drugs change her sense of taste and smell and she just retches at the thought of it. The nurse had to get quite firm because it's vital that she does it to avoid mucositis which can put a cancer patient in hospital for days/weeks. Poor thing, she was damned if she did, and damned if she didn't. After 25 minutes of standing at the sink holding her toothbrush, retching and weeping, she began to gently brush her teeth. It was awful. But I've seen mucositis and I want to avoid Meggie getting that. It's horrible. We then did the mouthwash which took another 10 minutes to work up to and she was immediately very sick. I WISH that she didn't have to do this and it would be very easy for me to "let it go" but if we did, the alternative would be worse. We finished off with a smearing of protective gel on her gums and a shower, and then got her tucked back into bed where she's stayed since, watching TV and dozing. I'm going to try and persuade her to have a little walk in a while, just to get her body moving, and then Daddy, Ellie and Nana will arrive - Daddy and Nana to provide cuddles and TLC and Ellie to provide the entertainment.......she's a goon!

what happend today

Hi Everyone its me Megan

I was in hospital this mornig for chemo yuck!! i was in room seven with my friend Evie. I had a blood test and it really hurt when i got back Evie and myself were playing connect four while watching Michael jackson (My favourite singer) the doctors said that we both have to go home. we were really disapointed except for me i was really happy because i didnt want to stay in because they didnt give me dexamethozone which i have to have twelve hours before the chemo.
so now im home and have to go back tomorrow morning. when i got home i did some work then i went in the pool it was really nice .so yeah thats all i can tell you now so ill talk to all for you some other time.

Bye for now
Megan take care
xxxxxxxxxxx

My beautiful blonde!

Well, as you see from Meg's previous post, her hair began to fall out in clumps a couple of days ago. A sure sign that the chemo is well in her system. Meg finds this partmore traumatic than anything she has to endure. Her hair is literally her crowning glory; many, many people comment on the beautiful colour, and the gorgeous curls. However, this morning, her first words to me were "mum, will you shave my hair off today please?" I was relieved that she had come to her own realization that it's best for it to be done now, and not to wait for it to fall out completely on it's own. So, with good old Nana holding her hand (and the promise of $5!!) I shaved what was left of her beautuful hair. It's another day we won't forget, not only because of Meg's hair, but also that it coincides with Phil's birthday. Meg was very excited about it, and made a wool trail around the garden for Dad to follow to find his pressies. We bought him a punch bag, boxing gloves and a chain to hang it from the beams of our pergola - a very apt present for all the family really, considering how many angers and frustrations we have. So, we'll be having a good punch out there on a regular basis.....

We were in hospital yesterday for Meg to have a kidney function test. Sounds simple doesn't it.... but it's not. She has to be extremely hydrated which she managed to do orally and nt have to go on IV fluids. She has an IV cannula put into her arm, and also has her port needled. We then have to go to Nuclear Medicine for a tracer to be injected into her arm and bloods to be taken. Then we go back down to oncology and she has blood taken after one hour, two hours, two and a half hours and three hours, all through her port. We finally got out at around 3pm after getting there at 8.30am. We then went to the Cancer Council's Wig Library - (same a books but with wigs!) where Meggie chose her wig. She can change it as often as she likes, but she seems to like the blonde one best.

We're back to hospital on Monday for the next round of chemo and then following that, the all important tests to see what, if anything the chemo has done.

On a final note, I'd really like to thank a wonderful group of ladies that I don't even know (except Lisa!)! They all cooked meals for us, and made some of them into individual portions so that I can have a decent meal in the hospital which is so needed! So thank you, thank you Sam, Sam, Kiera, Jo, Nikki, Jacqui, Lisa and Tracy. Your thought, effort and generosity is so appreciated.

How im feeling today

Hi

im feeling really sad today because my mom just shaved off all my hair because it's starting to fall out. Im angry and sad in the same way but it has to happen. I'll be going horse riding on the weekend hopefully if its not to hot for my mom and the horses. so yeah i dont have anything else to say so ill talk to you some other time

Bye Megan

It wasn't too hot so here I am riding Gringo in the Aussie bush!

This gives me strength....

Hi all

Just wanted to share this "you Tube" clip with you. I found it before Christmas and it really made me feel strong - it's the music. So please have your speakers on - the louder the better. And please send all that positive energy to our Meggie-Moo!

The band is a Christian Rock band called Fireflight. I find the whole thing very powerful.....

Jane xxxxx

http://www.youtube.com/watch?v=zAAcau-Yze4

A fab poem for Meg from Lisa

I thought this deserved a post all to itself! Thank you so much Lisa - we love it!!


My Ode to Meg
By Lisa aged 39 ¾
(One time nanny to a poet laurette..!! not that you would know!)

So, I watched Meg playing swing ball,
She was playing with her dad,
She leapt, she sprang, he huffed, he puffed
He really was quite bad!

As Jane and I sipped at our wine
The ball was bashed about
It soon became so clear to me,
What this was all about

She had just had chemo, so she was tired and probably feeling bad
But her courage, strength and love of life had her beating dad.
They were smiling, having fun, the love was all to clear,
Her face shone.. his was red (the cost to him was dear!)

But eventually, they came and sat, rested, had a snack,
Meggie laughed as her dad moaned and rubbed his aching back.
Jane sipped another mouth of wine, her face was all concerned…
“Phil be a dear, come rub my neck..my headache has returned!”

And as I sit, a stranger really, amongst these crazy folk,
My heart aches for them, it really does, for truly it's no joke,
What they face, is so very hard, a condition, all too rare
and as a family, more than any should ever have to bear.

But then I see sweet Meg, with her cheeky “Jack Black” eyes
And I know beyond all certainty, they are fighting for the prize
They will stand with Meg, at every step, , this family has not finished
Their love, their hope, their very core..tested, yet undiminished.

So Meg, what ever happens, the one thing you must see
your family love you Oh, SO MUCH,
they won't want to set you free.
They just won't want to be without you, your mum, your dad and Ellie
So picture yourself, at 46, 4 kids, a car and a dog that’s very smelly

Be proud, walk tall, just remember who you are,
Meg Stanley, a winner, swing ball extraordinaire,
a poet, a comic, a card player….(I hear with promising flair)
Cheeky, funny, a champ,
and loved beyond compare!!!!

Home....

Well, we were in hospital for a week and Meg did so, so well. She took all the new treatment on the chin again and didn't grumble or complain about anything, in spite of feeling absolutely wretched most of the time. It's good to be back home, and Meg is so relieved to be sleeping in her own bed again. We've been home for 5 days now and Meg's nausea is still coming in waves, poor love. I've had to give her anti-nausea medications every day, just to get her through. The problem is that if she starts to vomit, and we can't control it, she'll get very dehydrated quickly, especially as it's 35 degrees here. Dehydration can be extremely dangerous for chemo recipients as the toxins in her system can cause irreversable damage to her kidneys.

We went to the hospital yesterday (just outpatients) to get Meg's blood checked and to see her oncologist. She is VERY neutrapenic now. This means that she has absolutely no immune system - the chemo has destroyed it. The thing about chemo is that it can't differentiate between healthy cells and cancer cells, so in the process of trying to destroy the cancer, her normal healthy cells get wiped too. This leaves her looking very pale, feeling weak and tearful and very susceptible to getting temperatures and infections, mainly from the normal bacteria that she has on and in her own body. She now has a canula in her leg into which I have to inject a medication every day to try to help her neutophils recover sufficiently for her to receive the next cycle of chemo. She hates this, although never resists it, but it really stings and I feel so bad hurting her. She now has to do "mouth care" which she also absolutely hates. It's a regime where she has to use a nasty tasting mouthwash and hold it in her mouth for about 20 seconds, followed by coating the inside of the mouth with a protective gel. People on intensive chemo like Meg's often suffer from mucositis. This is where the lining of the mouth sloughs away, sometimes along with the lining of the oesophagus, causing lots of painful ulcers. Unfortunately for Meg, she just seems to find it impossible to do her mouthcare without vomiting. I'm really not sure how we're going to get around that..... but we're going to have to work something out or she's going to be back in hospital with mucositis.

On a positive note, we're looking forward to my mum arriving in Perth tomorrow. It's been so hard for her to be so far away from us all and we need her to be here as much as she needs to be be here. Meg's very excited about meeting Nana at the airport! Another plus is that our lovely big girl Ellie came back yesterday from her holiday at our wonderful friends, Ross and Tanya's farm in beautiful Nannup. It was so good to see her. We all missed her loads but it was better for her to be away and enjoying herself with her best bud, than to-ing and fro-ing to PMH.

Whilst we were in hospital I spent quite a bit of time searching out other "top" people in the oncology world, just to see if I could find out any more about the treatment protocol that Meg's on. I had a lovely email from a very well regarded oncologist in the US yesterday who told me that they had 8 other patients who are on this protocol and that at the moment the outcomes are looking quite good, so that was reassuring. He also said that he'd be interested in following Meg's case so I'll be keeping in touch with him, and hopefullly manage to find someone else who I can talk to who's having, or has had this experience too.


So, we're all back together, at home for now, and I'm glad.... Meggie has had a pretty rough day today and is now sleeping, cuddled up to her favourite fluffy unicorn, Rainbow. She's so stubborn sometimes though. I had to insist that she had a rest and she continued to say "I'm not tired, I'm not tired". 5 minutes later she was sound asleep! I hope she feels better when she wakes up.....

One for Nana

My Nana is a game old bird
To say she's 66!
If you give her lots of G and T
She tries to do cool tricks!!

Love and kisses from Meg xxxxxxxxxx

One for Grandad

My Grandad can be a jolly old chap
He can also be quite grumpy
When he puts his swimming trunks on
His belly looks all lumpy!

:) Love Meg xxxxxxxxxxx

Poor Uncle Simon

Simon is my Uncle
he had a large carbuncle
he chopped it off
that made him cough
that was the end of my uncle! bum-bum

Love you hope you enjoy ha ha
xxxxxxxxxxxxxxxxxxxxxxxxxx

Love Megan

Last day of chemo for this cycle

Well, we're on day 5 of chemo so are nearly at the end of Meg's first cycle. She's done so well with it, but has become incresingly sick. The only way we can alleviate that is by giving her strong medication to make her sleep. She resists taking medication but constatntly straining to vomit is exhausting for her and sleep is a much better option. She was well enough for about 10 minutes this morning to read her "Meg's Rib Ticklers". That brought many smiles to her face. And Tracey - what else could we expect from you!!!!

We had an OK night. Meg slept well apart from the regular trips to the loo. A little boy was admitted yesterday into the room next to us and he woke in the night alone - his Dad was asleep in the parent's accommodation. That poor little chap (only about 5 yrs old) cried and cried until the nurses woke his Dad and he came to soothe his son. I felt so bad for them...the little boy, the dad.... you can just tell the new parents on the ward. They just wander around looking dumbfounded - just like we did when we were admitted to oncology. You can see the disbelief in their faces. "What are we doing here?" "This can't be happening". I just want to put my arms round them. Their whole lives have turned upside down in a moment. I'm often woken in the night by a child screaming; not with pain, but fear. They might be having a "push" of some drug or other into their central line and the child is so scared. It doesn't hurt but it's just so alien to them and they expect it to hurt. Plus they feel terrible from the chemo and that makes everything seem worse. I think you have to be someone very special to work in pediatric oncology. The nurse I was speaking with yesterday said she often goes home after work and gives her boys an extra hug. Just because....

So....we should be able to go home in the next couple of days as long as Meg's nausea and vomiting can be controlled. She's determined to keep fluids down herself and her determination has paid off in the past - she just wants to get home so badly. We'll just have to play it by ear, and if we have to stay in longer than expected, then so be it. We've been told that when she goes home, she'll have another canula put into her leg so that she can have a medication called GCSF injected every day (by me). This is because her chemo is much more intensive than her last lot and destroys the bone marrow and white cells. Her body would be able to recuperate on it's own from this but it would take a long time, and while she's trying to recuperate, she'll be very prone to infection as she'll have no immunity. The GCSF boosts the replacement of the bone marrow so that she won't be at risk for as long and will be well enough to receive her second cycle of chemo in a couple of weeks.

Just a couple of pics below. First one is Meggie and her amazing friend Evie having a home-made ice lolly (before her chemo kicked in) and the second is last night with a lovely illuminated glass angel that Phil brought in for her.

MEG'S RIB TICKLERS!

As suggested by the Pieman (aka Uncle Simon), here's a place for funny rhymes, poems, limericks (please note the spelling Pieman!), etc. Meg's going to love this!

Especially for my wondeful uncle Simon( who owes ME money)

I have an uncle called Simon

Who' s large and round like a pieman

He says I owe him money

I think that's really funny

Only when pigs fly man!!!!!

To my wonderful uncle Simon (hope you enjoyed my little poem!)

Meg

xxxxxxxxxxxxxxxxxxxxxxxxxx

A different start to the new year........

Well, 2009 didn't start at all as we wanted or anticiptated. At 1.30am, I was woken up at home by what sounded like somone trying to kick the door in. I was terrified as I was on my own. The dogs were barking and wouldn't stop. I was feeling really emotional anyway and when this happened I was crying and shaking and just stood in the dark dining room feeling petrified. I finally called the police and they were great. They arrived around 2.45am and checked all around the house. The banging turned out to be a door that we're removed from the house and propped against the outside wall, which had blown over and hit the garden fence and juddered down the fence making the banging sound. What a relief that was. The weird thing was that the police woman that came asked why I was at home alone so I explained that Meggie was in the hospital having chemo, and her eyes filled with tears. She explained that her 10 year old daughter had been diagnosed with cancer of the skull but that she was fine now. So, at 3am on New Years Day, me and a policewoman I'd never met before were crying in my back garden....

Meggie and Phil had a good night's sleep apart from the normal trips to the bathroom. However, once Meggie was awake, her chemo really kicked in and her vomiting started. When I arrived at the hospital (much to my relief) she was vomiting and she looked dreadful. I gave her a quick shower which in itself is a bit of a military operation as her port site on her chest has to be covered to protect it from the water, and she was feeling pretty weak so had to be showered sitting down, still connected to her pump. She eventually agreed to have some medication to reduce the sickness and this worked and she slept for a few hours. I spent the time making her a bracelet with my beads, painting and decorating little boxes and a picture frame.

She's been drifting between sleep and wakefulness all day but managed to eat 6 pretzels which was a positive. Her anti-nausea medication is being topped up regularly and right now she's sound asleep listening to Mr Bean.

I had a long talk with one of the lovely nurses on the ward this afternoon. They're pretty quiet here at the moment so she had time to sit on the bed and spend some time. I was telling her how scared I was for Meg and how much I hated her having to go through this awful chemo. She was so great and very understanding. She was saying that as nurses they never give up hope on the children even if they've never known a child survive from a particular type of cancer. There's always hope because everyone is different. I'm really not articulating the conversation very well but it was good to chat with her and get more of an insight into how the nurses deal with working with these seriously sick children.

Time to get my PJ's on and tuck myself into my hospital bed now...... Thank you all again for all your thoughts and prayers. XXXX