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

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

Monday, February 9, 2009

Fingers crossed.....

Well, we've been back to PMH today to start the series of tests to see what, if anything the chemo has done. Today was audiology followed by a CT scan. Her audiology test went fine and there's been no damage to Meggie's hearing thank goodness. We won't know the CT scan results until Thursday when we go in for a kidney function tests and bone scan. So, it's more waiting ... We're getting pretty good at this; professional waiters we are!

Meg's been feeling pretty "flat" this weekend, and has been having a constant headache which we've been unable to get rid of with medication. Obviously as parents of a child with cancer, that makes us quite "twitchy", more so than if Meggie didn't have any health problems. We'll be speaking to her oncologist on Thursday about this new development. It could be Meg's way of showing her anxiety about this "big week" of tests, it could be the heat, it could just be a normal headache, we don't know, but we will need to get it checked out.

I was lying in bed unable to sleep the other night and I was thinking how life has been so "normal" this last week. Meg has been pretty active and well, she's been at school all week, she's argued with her sister(!)........ You almost find yourself temporarily forgetting that she has cancer. In lots of ways it's nice to have that relief - feeling normal, but then it all comes crashing back when you have another appointment or test.

Meg has established a friendship with a wonderful 17 year old young lady called Elizabeth in the USA who also has been diagnosed with Ovarian Germ Cell Tumour. She began her journey just before Christmas this year and I contacted her to offer our support and friendship. I was so pleased when she replied and now she and Meg are emailing which is great! You can catch up on her journey by typing in "Ohcancergirl" in the You Tube search box. She has a wonderful attitude to her illness and Meggie thinks it's really cool to have Elizabeth as her buddy!

I had a big "fix" of lovely women last week. I met with three of my lovely doula friends on Thursday night and we had a good natter and an indian meal - absolutely loved it! Then, on Friday, while Meg went off to the movies with friends, mum and I met up with my gorgeous Community Midwifery ladies. It was so good to catch up with them again and feel their love and caring. Thank you all ladies!!

Meg's birthday falls on the 19th Feb and that will also mark 1 year since she was diagnosed. As her 10th birthday got lost amongst all of the surgery and tests last year, she missed out on a proper celebration, so this year she's having a bowling afternoon followed by party food at home with silly games! Our wonderful friends Ross, Tanya and Toneal, and the whole gorgeous McGurnaghan clan will be celebrating with us so we should have a great day!

So, time to sign off for now. Hopefully, our next blog will be a positive one with good news. We should find out by the end of the week. Keep everything crossed!!!

Jane xxx

Monday, February 2, 2009

Positive news.....and where are your comments???

Meg and I (Jane!) went to hospital again today for a blood test and to see if she needed to continue with her injections in her leg to boost her immunity. Her bloods were good and her neutrophils were almost normal which was great. The BEST news is that the recent AFP (Alpha Feta Protein) tumour marker which was the indicator of the fact that her cancer had reared it's very ugly head again, and was starting to creep up, is starting to go down! That means that the chemo is doing what it should and we're hoping that it also means that her tumours have shrunk and she is able to have surgery to remove them.

Meg was D E L I G H T E D!!!! And so she should be! She's had the most miserable summer holiday and it really brought it home today when I took her into school and all of the other children were talking about all the wonderful, exciting things they'd done, and in contrast, Meg had gone through two cycles of chemo. We're definitely not "out of the woods" yet, but at least we're heading in the right direction.

And Meggie needs more comments!!! Where are you Uncle Simon??? Has your hangover gone yet??!! :) Happy Birthday Aunty Tracey!!! XXXX

Sunday, February 1, 2009

First day back at school!!!