A Lovely Holiday

I say holiday, I think I need one even more now!

It was a wonderful, happy, funny and very tiring week. Holly and the little ones have had so much fun. Harry was so excited to be allowed free rein that I think he has run further this week than in his whole life. We have run most of that after him.

We have swam, cycled, bowled, walked, cycled some more and swam lots more. I haven't ridden a bike since I was Holly's age and my body was certainly feeling it. I was also the nominated one to have the trailer for the 2 little ones attached to my bike. How did that happen?

Holly managed admirably, although she was tired most of the time she attacked the pool with gusto (the bike with less gusto I have to admit). The meds are definitely taking their toll though. She is very pale, tired all the time and suffering with sickness. Her appetite has disappeared and she has lost a lot of weight. It is horrible to see and I find myself wishing that she would ask me for bacon sandwiches at all hours again.

I would like to once again ask for your positive thoughts and prayers as we are back at Addenbrookes on Tuesday to discuss what we are going to do next. This is going to be a tough week. It has also been a tough week for some good friends of ours, please also think of them and pray they have a restful, healing week.

Holly was going to do this blog but she is currently asleep. I am hoping she will give you her own unique view on Center Parcs and how she is feeling when she is a bit more alert.

Away For a Few Days

Thanks again for all the lovely comments, texts and emails.

We are off the Center Parcs in the morning for some much needed R+R.

We will be back on Friday, ready to face our new journey.

A Hard Day

This is of the hardest blogs I have ever had to write.

Holly has relapsed.

It is the most dreadful news and I think we are all still in shock. The cancer has returned in her bone marrow and is very aggressive.

We have brought our holiday to Center Parcs forward and are now going next week. Holly has started a course of oral chemo and after the holiday we will look at starting TVD (a very strong course of chemo).

I am too sad to write much, just know we appreciate all your messages and prayers. They are needed now more than ever.

A Lovely Day at Auntie Clares

I have had a really good day today :~) My leg pain was so much better last night & I only woke up once!!!! YAY. That is definitely a positive sign!

My pain has been under control much more today which is also a very good sign, I have not had any number 10s as I call them & I have stayed at about a 3-4! :)

Today we all went to Auntie Clares for Millies 5th birthday party, the past 5 years have gone soooooooo quick!! We all had a great time catching up with Uncle Steves side of the family :). The little twins, Max and Alex are absolutely gorgeous!!!!

I am now back home and the afternoon has gone really quick - I suppose time does when you are having fun!

Thats it from me now, I need to check facebook LOL!! bye all!! xxxxxxxxxxxxxxxxxxxxxxx

Addenbrookes

Well, as predicted, Holly is not a morning person.

After a very early start, we spent the day at Addenbrookes. Holly had a bone marrow aspirate and trephine procedure (this basically involves syringing up some of Holly bone marrow and also a sample that has to be crystallized). As it can be very painful Holly was put to sleep. As always, she complained that she didn't want to be put to sleep and, as always, she thoroughly enjoyed it!!!
We wont get these results until next week.

After coming round she had a ct scan of her tummy. Neuroblastoma starts in the adrenal gland and causes tumours (generally in the tummy and pelvis) so Amos was looking for any lumps and to see if the adrenal glands looked unusual. I was expecting to get these results next week too but Amos told me he would look at them today and, if we waited, he would come and see us. Only 45mins after the scan Amos came rushing over to tell us that the scan was all clear. No tumours and the adrenal glands are completely normal. Thank God. He also told us that he was not worried at all and was just doing all these tests to confirm (what he suspects) that the nb has not come back. He is also speculating that the leg pain could be a side effect of the retinoic acid.

I consider us so lucky to have Amos as our consultant. He is so good with Holly and is always scrupulously honest with her (and me). He knows how worried we have been (Holly bursting into tears each time she has seen him recently is probably a give away!). We trust him implicitly and if he tells me not to worry I am going to try my hardest not to.

Thank you all once again for all your kind messages and texts. I am sure all your positive vibes and prayers are working.

Lister

Today started off badly, after being up most of the night with the bad leg pain it was still no better in the morning, infact worse! :(

Mum had to take Izzy to school which meant I had to be up early and trust me I am soooooo not a morning person! When we got back mum phoned the hospital because the pain was getting worse, and they said we should go to Lister for an examination.

It was not busy at all and we were seen almost straight away by a doctor who gave me a full M.O.T and could find nothing wrong with me ( I'm such a mystery ) She then got another doctor and he had a look at me and could not find anything wrong!!!

I was given some new pain killers as the 3 I was already on were not working :@
It only comes in tablets which I can't take, so we will have to do it the hard way and sqeeze the contents of it into a drink-LOVELY!!!!

When we got home I was given some medicine and I was feeling loads better untill the phone rang at 6! It was a nurse from Addenbrookes telling us that I have to have a CT scan & a bone marrow test tomorrow GREAT! so we will have to leave at 6:30 to get there for 8. I have to admit I burst into tears when I found out but I know that it will all be fine and even nicer being put to sleep as it will not be going through my hickman line but through a canula.

Thats all from me as I am off to have to 2nd part of my dinner :P bye all xxxxxxxx

It's Snow Fun Being Stuck At Home!!!

It has been quite a tough week.

On a positive note Holly's back has improved enormously, only to be replaced by the leg pain back again. Last night was quite bad with Holly being spectacularly cross with the pain. Calpol and Ibuprofen are managing the pain but we know that this virus could take a while to clear. We are both suffering from lack of sleep which is not helped by the fact that Holly's school is still shut. This has now been 5 days and year 7 are not expected to be allowed back until Thursday at the earliest. It is all down to a broken heater, not impressed.

The childen have all been loving the snow. I have never particularly liked the snow but it holds such awful memories now that I can't stand it. It was during the snow last Jan/Feb that I became sure there was something seriously wrong with Holly. That her pains and lack of appetite weren't just hormonal. Everyone told me I was imagining things but I just knew. Everytime I look at the snow thats what I think of. I have been trying hard to make new memories with Holly, Izzy and Harry playing and enjoying themselves, but it isn't easy.

I know as we head towards a year since diagnosis that I will look back and remember things that I have blocked out, and I am sure it will be really tough. I can't believe its been almost a year. Time has flown, but it certainly didn't feel like it at the time.

As to making new memories, we have booked a holiday to Center Parcs in February. There will be 10 of us going and Holly is so excited. She has informed me that she needs to take 3 bags (outfits, make up and jewellery!!!) and will be in the pool all day every day. She wasn't too impressed to be told wellies, jeans and a swimsuit would be all she needed.

No Relapse!

Holly's tests came back ALL CLEAR!!!!

The likely cause of her pain (which was in her leg and has now been replaced by bad back pain) is viral, and quite possibly something to do with Harry and Izzy's chicken pox. The symptoms are very similar to shingles and are kept at bay with plenty of ibuprofen.

It has been a truly awful week, I have felt unable to celebrate the arrival of 2010 as I had convinced myself that it was going to be even worse than 2009. I have a feeling I will have to get used to feeling like this, maybe one day I will even become used to it.

Thank you so much for all your positive messages and texts, I really appreciate them and I can honestly say they have helped me through this last week.

Ben summed it up nicely, "please can we have the last week of Christmas back..."

Happy New Year!!!!!!

Today has been great! Me, dad, Auntie Marie, Uncle Dave, Lauren and Jack went to nanas for lunch.

Me and Lauren had a great time taking photos and dancing to my new CD. We made a routine for nana to watch as she had been so good making 3 starters, 2 dinners and 4 puddings! You deserve a BIG well done nana!!!

I want to wish all of our C2 friends, or should I say family? A really happy new year and that 2010 is better for all of them.