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.

Tuesday, March 17, 2009


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!!!! :)

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.

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

I went home last night to get some decent sleep, Ellie went to her best friend Toneal's house and stayed over, and Phil stayed with Meg. It was nice to be home, but I missed being with Meg so much. I was a bit of a pest, texting Phil so often for an update on how she was. It's strange; I wanted to be home and have some alone time to think, but when I actually got it I was wandering around like a lost soul and felt very restless. I do know though, that it's important for me to get away from the hospital when I have the opportunity - it makes me a better carer when I come back. Poor Phil got very little sleep last night; the recliners that they have in the room are not the most comfortable to spend a whole night on, and Meg was restless. He'll go home today and hopefully sleep well tonight.

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.
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


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

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".