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

"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......

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..........

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

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

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.

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!!