hollys journey

A Year On......

2011-03-26T05:34:00.000-07:00

Well, its a year later. A year without my precious Holly. A year of "firsts".

Yesterday a year ago we said our last goodbyes to Holly as she was buried. We've had her birthday, her angelversary and many other firsts without her. Everyone says the "firsts" are the hardest, I have to say I'm not sure I believe them.....

This is going to be my very last post. We are doing ok, life has gone on. There was no other option to that.

Izzy and Harry are amazing and keep the laughter (and shouting!) echoing round the house. Ben, my family and my wonderful friends have kept me going.

Holly is still the first and last thing I think of each day. She will never be forgotten. She was only 12 but I am so very very proud that I was chosen to be her mum. Love you baby xxxxxxxxxxxx

A Message

2010-05-05T14:33:00.001-07:00

I decided to clear out some of Holly's room yesterday, a job I have been putting off for so many reasons. I know she isn't coming back but her room is so totally filled with Holly. I find it very emotional just going in there, so many memories.
In one of the boxes under her bed I found a notebook, she had written a poem in it. A poem about being ill. I read it and just cried:

I may be ill and have little hair
But everything you have to bear
Coz if you don't you wont get through a single day
Watching hours tide away
This past year has gone so quick
Watching the clock, tick tock tick
To all the friends I've met on the way
Just be happy day by day
Look to the future, don't look back on the past
Always be positive and time will go fast

She was so brave, so knowing. It was almost as if she left it for me to find.

One Month

2010-04-19T04:32:00.000-07:00

A month has passed since Holly became an Angel.

I don't really know what to say, except it doesn't get any easier.

Life has settled into the "new normal". I think I am doing ok until something reminds me and I feel like I have been punched in the stomach. There is a constant ache and a constant feeling that my baby isn't with me. Don't get me wrong, I laugh and have a great life at home with Ben, Izzy and Harry but I just don't feel like a whole person. A huge part of me is missing and I don't know if I will ever feel like I used to.

Surprisingly I feel a great calmness going to the cemetary. It took me ages to go and now I feel drawn there all the time. I feel close to her there. Izzy likes to come with me and we potter about, adding water to the plants and flowers and bringing something with us each time we go. Izzy talks to Holly there and we call it Holly's Special Place. She is buried amongst other children and it is so peaceful, especially beautiful on a warm summers day. I have decided not to take Harry with me as he is very inquisitive and brought me a toy car off a little boys grave!

I am delighted to say we raised £2252 in Holly's memory to be split between Families Against Neuroblastoma and The Sick Childrens Trust. These are 2 charities that are very close to our hearts and have helped us through this journey.

I want to thank everyone for all your kind messages, letters and cards. I have been overwhelmed by how much Holly touched peoples lives and I feel blessed to have been her mum for 12 years.

It just wasn't long enough....

A Week Ago...

2010-03-26T14:41:00.000-07:00

...since Holly left us.

The funeral was perfect (if any funeral can be). I truly feel we did her proud. The service was beautiful, simple and meaningful. Holly didn't particularly like hymns, we always went to the services that didn't have any (they were also quicker!). I chose 2 songs that Holly loved and I felt would mean a lot to her. They were Defying Gravity (from Wicked but Holly preferred the Glee version so thats what we had!) and Halo by Beyonce. Truly lovely songs with words that really meant something.
I also chose a poem:

God looked around his garden
And found an empty place,
He then looked down upon the earth
And saw your tired face.
He put his arms around you
And lifted you to rest.
God's garden must be beautiful
He always takes the best.
He knew that you were suffering
He knew you were in pain.
He knew that you would never
Get well on earth again.
He saw the road was getting rough
And the hills were hard to climb.
So he closed your weary eyelids
And whispered, 'Peace be Thine'.
It broke our hearts to lose you
But you didn't go alone,
For part of us went with you
The day God called you home.

I think that says it all. On the way to the funeral we took a route that took us past Holly's primary and secondary schools, it was so moving as both schools had pupils and parents outside to pay their respects to Holly. The sun came out as we went into church. However the rain came down as we said our final goodbyes at the cemetary. I think it was definitely Holly's sense of humour, I'm sure she watched me spend ages straightening my hair and thought it would be amusing to ensure it went frizzy!

It was so wonderful to see so many friends and family, and also to see so many of Holly's school friends. It was also amazing to see so many of my wonderful friends from ward C2. It must be so tough for them, they also live with the fear of losing their children and I felt truly humbled to see them. It shows how much Holly was loved by everyone she met.

Thanks to the generosity of everyone at the funeral we have raised in excess of £1700 for Families Against Neuroblastoma and The Sick Childrens Trust, an amazing amount and money still coming in.

The local paper (who have followed Holly's journey) did a lovely front page tribute to Holly -

http://www.hertfordshiremercury.co.uk/Cheshunt-and-Waltham/Farewell-to-courageous-Holly-12.htm
(sorry, it doesn't let me link it so please copy and paste to see article)

This week has been so busy. I have thrown myself into organising the "perfect" day for Holly, I now feel a little lost. I don't want to have too much time to think, to remember, to hurt. I know I have to let go, I know I have to grieve but it is just too hard at the moment. I know she was too poorly, I know she wasn't going to get better, I know she is in a better place and her body is healthy again now. As any cancer mum will tell you, you start grieving as soon as you get the diagnosis. I have been grieving for 13 months. I don't know what I would have done without all my fantastic family, my friends, my beautiful children and Ben. He has held my hand through all of this and I am truly grateful for his strength (and at times his very dark sense of humour!!!!). I know he wants me to properly grieve and cry, and I will I'm sure. I am glad that he will be the one that I can do that with.

I started this blog to chart Holly's brave journey, now that journey is at an end I am not sure what to do about the blog. I do hope that it will help other people who find themselves facing the awful diagnosis of neuroblastoma. I do hope that one day it will help Izzy and Harry to realise what a truly amazingly brave big sister they have.

Funeral

2010-03-22T12:07:00.001-07:00

Today has been a hard day, but we have finalised all the funeral details.

The funeral will be at 12.30pm on Thursday 25March at:

St Pauls RC Church
17, Churchfield Path,
Cheshunt,
Hertfordshire,
EN8 9EG

Then afterwards at :

Cheshunt Golf Club
Park Lane,
Cheshunt,
Hertfordshire,
EN7 6QD

Everyone is welcome to help us celebrate Holly's life. Please don't wear all black, Holly loved bright colours, lets honour her by wearing some.

We ask only for immediate family flowers. Donations in Holly's memory will be accepted on the day for Families Against Neuroblastoma and The Sick Childrens Trust.

She's Really Gone

2010-03-21T15:26:00.000-07:00

Its been more than 2 days and I can't quite believe that Holly has really gone.

Letting them take her body away on Friday was so hard, I wanted to stay with her and hold onto her. I kissed her one last time and let her go, I cried my eyes out.

After all the organising on Friday the weekend was one where nothing else could be achieved. I felt useless, bereft, felt like I should be doing something. I felt guilty that I was doing "normal" things like helping mum move house and doing the Tesco shop. How could I be in Tescos when my daughter had died on Friday?
The feelings are all over the place, I feel totally heartbroken that she is gone, yet relief that no one will be able to poke and prod her and put any more poison in her body.

We told Izzy that Holly was now an angel in Heaven with Jesus. She asked if Jesus would let her come back and be better so that they could do dancing again. Just when you think you are "dealing" with things, Izzy will say something totally innocent about Holly and it will set us off. Tonight she went to say goodnight to Holly. She shouted to make sure that Holly could hear her.

I have always believed that there is a Heaven and take comfort that she is happy and healthy now. I don't think it would be possible to carry on if I didn't believe that. I will share something with you and it may sound totally absurd. I was dozing on the bed with Izzy at lunchtime today. We were in the loft conversion, so the highest floor. I was just drifting off when I heard Holly's voice, so clearly, saying "Mum, I'm upstairs". It was so so clear. Please let it have been her, telling me she was ok. I am struggling a little at the moment, every time I let myself think, I keep going back to the moment she died. I keep thinking of her in my arms taking her last breath. I need to be able to think of her laughing and having fun. I am sure that will come in time.

Izzy and Harry are keeping us sane at the moment, indulging in naked wrestling after their bath last night! They are so innocent and life (thank goodness) has remained safe and stable for them. They are not really aware that anything has happened and they are so full of joy it is impossible not to be happy with them. I just have to learn not to feel guilty for enjoying them.

I will post funeral information as soon as I have it. We will see the funeral directors tomorrow. I know Holly touched a lot of people. Please know that everyone will be welcome to help us celebrate her life.

Flying High

2010-03-19T04:14:00.000-07:00

My beautiful baby earned her angel wings at 4.22am.

She was lying next to me holding my hand, peaceful throughout.

Fly high, baby. Heaven has got a very special angel today.

Rule The World

2010-03-18T16:48:00.000-07:00

Holly has unfortunately deteriorated since we got home. It almost seems like she was holding on to get home and now her fight and strength are deserting her.

She is in no pain, thank God but she is now pretty much non responsive. We have had a few waves of acknowledgement and Harry and Izzy both got a "night" at bedtime but not much else. It is just so heartbreaking to watch and I feel so helpless. I am sitting here with her and a song came into my head and I just wanted to share it with you because it sort of sums up how I am feeling.

Rule the World by Take That

You light, the skies up above me
A star, so bright you blind me
Don't close your eyes
Don't fade away
Don't fade away

Yeh you and me we can ride on a star
If you stay with me girl, we can rule the world
Yeh you and me we can light up the sky
If you stay by my side, we can rule the world.

If walls, break down, I will come for you
If angels cry, oh I'll be there for you
You've saved my soul
Don't leave me now
Don't leave me now

Yeh you and me we can ride on a star
If you stay with me girl, we can rule the world
Yeh you and me we can light up the sky
If you stay by my side, we can rule the world.

All the stars are coming out tonight
They're lighting up the sky tonight
For you
For you

Please pray so hard that Holly stays at peace until she gets her angel wings.

We Are Home

2010-03-17T02:39:00.000-07:00

We came home yesterday.

As Holly cannot walk she came home in an ambulance. Blue lighted to avoid the traffic, it is a shame she is so poorly because she would have really enjoyed that. She was more concerned about being dropped by the two lovely ambulancemen carrying her up the stairs!

Once she was in her own bed her agitation eased and she seemed to sink into her pillows with relief. She is very weak and totally exhausted. Her nose seems to be permanently bleeding as are various other parts of her body. Her platelets are now non existant so her blood isn't able to clot.

Harry and Izzy came home to find Holly back and were so excited, they ran round her and were up on the bed to get close to her. I think Harry seemed to know because he was uncharacteristically gentle with her. She got a little fed up with them after a while and they were removed swiftly into the bath. I think short doses is the way forward!

Vince and Kirsty stayed with Holly most of the evening and then I slept next to her. She needs someone with her at all times, if only for reassurance.

We are getting great support with visits every day from the nurses at Addenbrookes and our wonderful Community team.

It can't explain how good it is to have her home, this is where she belongs.

So Sad

2010-03-14T11:54:00.001-07:00

I thought some of the other blogs have been hard to write but this is the hardest ever.

Holly had a bone marrow aspirate on Friday morning to see what was happening as she just isn't getting better. Amos did it himself. Holly has had loads of aspirates and I have never ever seen Amos do it. It is usually a member of his team. I think I already knew, so did he. He wanted to do it himself and check it as soon as possible. We got the results at lunchtime.

The TVD hasn't worked. The neuroblastoma has progressed and is now just too aggressive. Her counts have never recovered (and they were too low to begin with). Her bone marrow just doesn't work anymore. Her body is too tired. We are out of options.

Holly is aware of what this means, she is such an amazing brave little girl. No mother should have to tell her 12year old that, no 12year old should have to hear that.

We are now working on getting her comfortable and getting her home.

I can't write any more.

Friends

2010-03-10T02:07:00.000-08:00

I realise that the last few posts have been quite miserable, I don't intend them to be but there just seems to be no end in sight at the moment.

Holly is ok, her pain in under control now but her temp is still spiking. She will have a chest ct later to see if there is any infection there. Her infection markers in her blood are coming down and the line infection seems to have cleared so this is good news.

I have had a lot of emails and texts in the past few weeks from friends, thank you all so much. Please don't think that I am wallowing in misery here on C2, it is actually a very nice place to be. Women who are fighting for their little cubs bond in the most extraordinary way. I have made some wonderful friends here, all of whom are going through the same as me. I would like to say a huge thank you to some of those friends who have got me through this week. Emily who brought me wine for my birthday, Hayley who brought me champagne (which we polished off late on Sunday night whilst putting the world to rights in the parents room, tut tut), and Chris who brought Holly goodies and me more supplies (wine). Is there a pattern there? Ok, I quite like wine...

One Step Forward....

2010-03-08T02:17:00.000-08:00

It feels like we are taking one step forward and two steps backward at the moment.

Holly is still in pain, her mouth is very sore and she is also having some pain in her leg and arm. She is obviously quite worried about this but we are hoping that it could be due to her lack of mobility at the moment and all the drugs she is on.

We were due to start the next course of TVD chemo today, but that has now been postponed indefinitely. Her counts are still low, she is having daily nose bleeds so she is needing platelets every 2 days and she is still suffering the effects of the norovirus.

Understandably she is very low. It is so hard to see her like this.

Doing OK

2010-03-04T08:54:00.000-08:00

Things finally seem to be improving, albeit slowly.

Holly still has a line infection but the infection markers in her blood are reducing slowly. This means the anti-biotics are doing their thing, this is noticeable in the fact that Holly looks and feels quite a bit better.

We have also found out that Holly has caught the dreaded Norovirus bug (winter sickness and diarrhoea bug). This means that Holly is on barrier nursing and isn't allowed out of her room. Not too much of a problem at the moment as she doesn't feel like moving very far. I was quite upset when I found out as I just keep thinking, what else???

She is slowly managing to eat although her mouth is still very sore. She is really trying as she knows that the next step will be the dreaded nose (NG) tube. She is adamant that she won't have one, but if the doctors decide that she has to have one then she must.

I managed a night at home last night for my birthday. We had a lovely night but it wasn't the same without Holly. I was looking forward to a morning without any doctors but ended up in the local surgery at 8.30am to get Harry some eye drops.

There are quite a few old faces on ward this week so it has been nice to catch up and chat, Mick is also back so Holly has been able to pick and choose what she wants to eat (or not eat).

A big thank you to Lynne and Steve for the lovely balloons they sent Holly. This has been a long miserable stint in hospital and its so nice to know that people are thinking of her.

Addenbrookes Thank Goodness

2010-03-01T01:59:00.000-08:00

Holly has had a rough weekend.

I got to go home for the weekend as Daddy and Kirsty came to take over on Friday night. Holly's sickness seems to have been sorted and she is now left with the infection and diarrohea. Her nose is still a source of concern as it has been bleeding quite a bit.

Holly told the docs at the local exactly what she thought of them and the hospital on Saturday morning. When Holly is grumpy and fed up you know it, and the docs certainly realised pretty quickly that she wasn't a fan. I think they were struggling with treating her as much as we were struggling being there so it was to everyone's delight that a bed had become available at Addenbrookes. Holly was transferred there by ambulance on Saturday night.

The nose was the major problem that night. Holly couldn't sleep because her nose needed wiping every 5 seconds, this meant that no one got much sleep. Kirsty took over the wiping duties and the ENT on call doctor was called. He came about 2.30am and had a look. They decided to suction the nose which stopped the bleeding for about 5 minutes! Various things were tried but what worked eventually was some gauze soaked in a kind of acid and stuck up her nose. Not pleasant, but effective.

I came back last night and Holly was ok. Her poor face is very sore from the bleeding and all the excess saliva she is producing. She is also suffering from mouth ulcers. After a bath and change of bed sheets, she settled into a relatively peaceful night only interrupted by her sore mouth. This was helped by some paracetamol.

I have had a lovely weekend. We spent Saturday with Ben's mum and dad. The Little Ones love going there, Anne has kept all of Ben's old cars, airplanes and space ships so Harry was ecstatic. Izzy loves spending time with Nanny and Grandpa and they both came home with smart new hair cuts. Harry still has all his curls though, I was adamant about that.

Grandad (my dad) is over from Ireland so we popped up to see them on Sunday with his belated birthday present. Much excitement from Harry (and me) as there was a flood near them and the road was filled with fire engines and police cars. We stood and watched and Harry waved (I think my motives were slightly different from his!)

It was nice to have a normal weekend though my thoughts are never far away from Holly. It is difficult being away from her but essential for all of us.

I am sure Addenbrookes will get to grips with Holly and get her home as soon as possible, they better as Izzy has stated that she will not brush her teeth until Holly is back from hospital!!!

Rollercoaster

2010-02-26T13:19:00.000-08:00

The last few days have been something of a rollercoaster.

Holly was still being sick and thoroughly miserable on Thursday morning. The doctors were scratching their heads and admitting that they were struggling to get on top of it. Her temperature was also up and down. They called Amos and came back armed with a plan. They were going to take one anti-sickness med away and replace it with another that was run over a 24hr infusion into her Hickman line. If that didn't help there was also a Plan B.

The day passed uneventfully until late afternoon when the consultant came to ask if he could have a word. Privately. Now any oncology parent will tell you that this never brings good news. I was taken into a room and told that there had been a terrible mistake. The new med that was supposed to be run slowly over 24hrs had actually been put into Holly over the space of 1hr!!! I just stood there, I didn't even get angry stright away. I think I was probably just numb. How much more could my little girl's body take? They weren't sure what the effects would/could be. They told me first and then rushed off to speak to pharmacy to find out what could happen. I couldn't tell Holly, she didn't neeed to know at that point.

When the consultant came back I was told that she would probably just become sleepy as the med contained a sedative. The other possible effects were a drop in blood pressure, heart problems and her body could become distorted. They had an antidote on the ward just in case but wouldn't give it unless necessary. She would need constant heart and oxygen saturation monitoring, hourly observations which included the coma test (checking eyes and reflexes for any brain problems) and watching throughout the night. They brought in a nurse that would only be looking after Holly. I spent the evening watching her and the monitors. What else was going to be thrown at us?

Addenbrookes were aware of the situation but it was decided it wasn't safe to move her for 24hrs until they considered her stable.

She actually had an ok night. She had a relatively peaceful sleep despite all the constant monitoring. She is much brighter today, much to everyones relief. She has watched tv and been on her computer, something I haven't seen her do all week. I had been adamant last night that she was to be transferred to Addenbrookes today but things don't always work out that way. The ward was full. I accepted that she would have to stay at Lister but only because she had improved. I dread to think how difficult and heated discussions would have got had she still been so unwell. Amos is on call all weekend so I have been assured that I can speak to him at any time if I have any concerns.

We also found out today that the cause of Holly's high temp is a line infection. Now that this has been established the anti-biotics have been changed to those specific to attacking this bacteria.

We have had quite a few issues with the local hospital, mainly regarding the time taken to do blood products but this was our first stay and I was prepared to have an open mind. To say I am disappointed is an understatement. I have lost all my confidence in them. I have to trust them with my little girls life. We were lucky that nothing more serious happened, this isn't how it is supposed to be.

Awful Few Days

2010-02-24T03:11:00.000-08:00

Holly got home on Sunday night and you could say it has all gone downhill ever since.

She started vomiting at 4am on Monday morning and was sick throughout the day. Monday night was dreadful, she was sick every hour so no sleep was had.
Tuesday we were due at clinic at Lister (our local hospital) to see Amos as he was visiting there. It was touch and go whether I would be able to get Holly there as, by now, she was extremeley weak and not wanting to move anywhere. The nurses had come in the morning to do a blood count and her platelets had dropped to 1!!!! She was also neutropenic so was very susceptible to any infection. This left me no choice, I had to get her to the hospital as she was going to need a platelet transfusion.

We got there in one, slight bedraggled piece and saw Amos. He had been worried at how poorly she was being but told me, after examining her, that he was really pleased that she was actually better than she was the last time he had seen her (about 3 weeks ago). He is cautiously optimistic that we are seeing a response to the chemo. He did insist on her being admitted to local to try and get the sickness under control. I will also be taught how to give the extra anti-sickness through her Hickman line, this means we won't have to struggle to give the meds orally. Holly had 2 bags of platelets and all her various meds and I was looking forward to a peaceful (ish) night.

No chance. Holly spiked a temperature of 38.5 at 2am this morning. This now means we are in for a minimum of 48hrs while they try and find the source of the infection and start anti-biotic treatment. Holly is so weak that any infection is not good news so we have to get on top of this.

Addenbrookes seems like luxury compared to the local hospital, I am sleeping (or not) on a camp bed! The doctors do not know her and I am constantly explaining things and chasing things. Temperature has just been checked again 39.4! Looks like we will be here for a while...

Holly is thoroughly miserable and I don't blame her. She feels so sick and is being constantly poked, prodded and being asked questions. It has really made me appreciate the fantastic care we receive at Addenbrookes and the doctors who are always on top of things.

This feels like a really depressing post, I didn't mean it to be, this is all normal after the chemo Holly has just had. Its just tough to go through.

Nearly There

2010-02-21T04:34:00.000-08:00

Holly is doing really well.

I came home on Friday night after a good couple of days. Holly has been up and about although she gets tired very easily (which makes her a little grumpy).
We were very lucky to have visitors. A big thanks to Martina, Megan and Millie who came to see Holly and brighten her day. They had to come up by train so it was really appreciated.

Daddy and Kirsty came to take over on Friday night so I escaped for the weekend. As usual I felt really guilty, sad to leave Holly but happy to get home and see Harry and Izzy (and Ben!).

She had a restless night and was sick once. Holly had some more visitors on Saturday. Nanna and Nanu came bearing chicken noodle soup (one of Holly's faves) and spent a couple of hours with her. She had a good day and was up and about for most of the afternoon.

Last night was much better than Friday night and she was apparantly up and demanding a Macdonalds breakfast this morning. She seems to be tolerating the chemo well and the doctors have said she can come home tonight.

I have had a lovely weekend although not a minute goes by that I don't wonder how Holly is getting on. I am so pleased that she will be back later, the house just doesn't feel right without her.

A Better Day

2010-02-18T10:40:00.000-08:00

Holly has had a much better day today.

Yesterday she steadily improved and had a visit from Daddy and Kirsty. They came bearing strawberries and jelly at Holly's request and today she has actually started eating again.

The sickness has eased off and today has been vomit free (fingers crossed it stays that way). After a major nose bleed on Tuesday night, last night was completely uneventful.

We have been out and about today with the wheelchair to get various snacks and drinks so I think that has really helped. She has also been awake all day so we watched the new Harry Potter film (which we both loved).

After a really rough couple of days today has definitely been a nice day.

TVD

2010-02-16T01:09:00.000-08:00

Well, the best laid plans...................

Holly bloods were only slightly improved yesterday so I was completely surprised to get a phone call from Addenbrookes at 2pm to tell me Holly's bed was ready and could I bring her straight in! What! Holly was still asleep! It turns out that because the neuroblastoma is in the bone marrow her bloods would be unlikely to recover on their own so the decision was made to go ahead anyway. This is what I had been trying to say since Friday.

Now anyone that knows me knows that I like to be organised. I like my lists. I even write things on my list that I have already done just to have the satisfaction of crossing them off! A week in hospital takes planning. I have to make my lists, clothes / meds / food. I had no lists, aaarrrhhhhhh!!!!!!!

I got Holly up, organised our stuff and we were out of the door in an hour. Pretty good I reckon. It was a good thing Ben was working at home as he speedily phoned his boss to explain he wouldn't be around for a few hours as he had to put his "daddy" hat on. Mum was also summonsed into action and she was packing to come and stay for the rest of the week with the Little Ones. Harry is delighted, he loves his nanna (she calls him Happy on her predictive text, makes me smile every time). Not so sure nanna will still be smiling as its half term week so no respite!

The chemo lasts 5 days and the first few are the T part - Topotecan. It is just a half an hour bag but it has produced some impressive green sick already. Holly is feeling pretty rough and sick most of the time. I am hoping all the anti-sickness will start to help soon as she is just miserable.

Frustrated

2010-02-13T05:08:00.000-08:00

Well, guess what, I'm frustrated!

Thankfully Holly's GFR (kidney function) and heart echo tests all came back fine meaning that she can start TVD. However, due to the oral chemo she has been taking, her blood counts have now plummeted. They are too low for us to begin the TVD chemo so we have to wait until they come back up. It is impossible to know how long this will take but we should see what trend they are taking during next week. It feels like everything is taking so long. I feel as if we take one step forward and then get stuck!

As you can see by Holly's blogs she is remaining very strong and sleeping and facebooking her way through the days. Her hair has started falling out again this week and she is looking fairly dramatic. Ben has offered to take the clippers to her hair but, not surprisingly, she politely (not) declined. I think that she will be so fed up of hair falling all over her and her bed that she will be doing it herself soon. I have found the hair falling out harder than Holly has. It makes me sad watching it happen all over again, her new hair signified her health and now it is going.

We have had so many messages, texts and emails of support that I am sorry if I haven't replied to everybody. Please know we appreciate all your prayers and kind words and they mean so much.

Hickman Line In

2010-02-09T15:13:00.001-08:00

Well, as the title says, my new hickman line has been inserted. Early yesterday afternoon I was taken down to theatre and was very upset :(

Before I was put to sleep they gave me something through my canula to make me feel relaxed but that didn't seem to make a difference, so they gave me something else and it made me feel so sleepy and relaxed I fell asleep before the white stuff as I call it, went in!

I was very sore and stiff when I woke up and couldn't move easily at all. Amos had said that I would have to stay over night on the ward as I did not go into surgery untill the afternoon, but of course there had to be a drama! They did not have any beds on C2 so mum said we should book into a hotel near Addenbrookes as she did not want to drive over an hour away when I was in such a bad state.

We did not have to do that when we got a bed on COU - Childrens Observation Unit. The 5-bed ward was very noisy at night as there were people coming & going all night, cleaners banging and crashing all night and the phone ringing all night!

Today I had a ultra sound on my heart and that was all fine, then a GFR - Kidney Function Test and also the doctors wanted an ultra sound of my tummy/back area as I have been getting pain in my back, but that was all fine too!

It has been a really long couple of days and I am really glad to be home and back in my own bed and be able to have facebook!

I am feeling so much better now and I am going to to bed, night everyone! xxxx

A Better Few Days

2010-02-06T11:25:00.000-08:00

The last few days have been a lot better, I have not been sick too much and I find that when I am up and moving I'm not in as much pain and feel a lot less sick. I think being curled up in bed all day everyday did me NO good!

I have had a really good 2 days at dads, it started off making a tent out of airers and sheets from nanas ( thanks nana! ) And me and dad sleeping in there. That all went a bit down hill when at 3:00 am me and dad decided to have a shouting competition and I got a bit emotional and went into Kirsty's bed! HAHA fun times!

Me and my AMAZING friend Morgan who used to live over the road from dads, but moved to Cambridge went to Lakeside for a bit of retail therapy. To be honest walking round the whole of Primark, New Look, Accessorize, Next, Clairs and all of the make-up aisles in boots, I was very tired by the end of it and was a LITTLE moody!

It has been a very long day which was made even better when me, dad & Kirsty went to pick up my hoodie from the shop. It had a piccy of me on the front with my name underneath and an even BIGGER picture of me on the back saying 'What's Occurring?' from Gavin & Stacey :)

I am now watching my fave programme Take Me Out with dad & Kirsty, and am going to go back home to mummy tonight :D xxxxxxxxxx

Addenbrookes and Platelets

2010-02-04T05:38:00.000-08:00

What a long day!

We arrived at Addenbrookes at 1230pm for a blood test then a meeting with Amos at 2pm. It was always going to be a tough day as we were going to discuss what options we had for Holly's treatment.

After Amos had examined Holly she made it quite clear that she didn't want to be around to hear all the details so took herself off for a lie down and a bit of TV watching in the day unit recovery room. This was better for me because it meant I could fully concentrate on what Amos had to say and try and remember what I wanted to ask. He agreed with me that the oral chemo doesn't seem to have had any effect as Holly has not got any better so we have decided to get straight on with the TVD chemo. This is a mixture of Topotecan, Vincristine and Doxorubicin. We would hope to get a response within 2 courses (there is a 3 week break between courses).
Holly will be admitted on Monday to have a new line put in in surgery. She will then need a GFR test (kidney function test). So long as the results of the GFR are ok we are aiming to start TVD on Wednesday/Thursday next week. The chemo involves a 5day stay in hospital so we are, once again, going to be residents of Ward C2.

The blood results on Tuesday showed Holly's platelets were extremely low so we were not allowed home until she had a top up. This was due at 5.30pm. This was then delayed to 8pm, and then finally delayed until 10pm. Needless to say both Holly and myself were not impressed but we had no option but to stay. We finally got home at 11.40pm, with Holly trying to decide whether she wanted a curry or not when she got home. We decided that probably wasn't a good idea so she compromised and had a pot noodle, yum!

A very tired girl spent most of yesterday in bed recovering.

This week has been hard, tomorrow is exactly one year since we found out Holly had cancer. I think I will spend quite a lot of time thinking what was going on this time last year, not particularly healthy I'm sure, but inevitable.

My View On The Amazing Holiday

2010-02-01T17:02:00.000-08:00

Well, as mum promised, I am now ready to tell you about my views on our amazing holiday!

Of course the night before I could not sleep! Typical!! I was just too excited as I was about to go to a place I have wanted to go my whole life. The next day when we got there the first thing I wanted to do - I think all of us, well at least all of us kids, was go swimming! So of course my wish was granted and after we had settled in and un-packed ( well sort of ) we went to the bike hire place, got our bike & helmet - which I was not too pleased about, and went to the pool.

I have to say that the pool was the best pool I have ever seen! Now every pool I go to will seem rather rubbish in comparison to Center Parcs tropical paradise!

We also went bowling which was AMAZING!!!!! To be honest I was rather suprised when I heard that Izzy had won, wow thats certainly the first time I have seen a 3yr old win bowling!

There was also a bit of archery - not from me of course!!! A lot of wine and beer, again not from me. Before we knew it this amazing paradise holiday was over :(

I was really sad to be leaving, not just because I would miss going to the pool everyday, but also because I know I have a hard battle ahead of me once again. I have fought it once and I am prepared to fight it again!

So thanks for the amazing holiday everyone! x

Well I think I should go to bed now as it is 1:20!! Night Night xxxx

A Lovely Holiday

2010-01-31T09:35:00.000-08:00

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

2010-01-24T13:14:00.001-08:00

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

2010-01-20T13:31:00.000-08:00

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

2010-01-17T10:44:00.000-08:00

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

2010-01-15T11:09:00.000-08:00

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

2010-01-14T10:44:00.001-08:00

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!!!

2010-01-12T02:45:00.000-08:00

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!

2010-01-05T11:05:00.000-08:00

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!!!!!!

2010-01-01T09:52:00.000-08:00

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.

Tough Few Days

2009-12-29T11:15:00.000-08:00

Life has become somewhat of a rollercoaster at the moment and I really want to get off!

The weekend saw another trip to A&E with Holly. She has been having some leg pain since Christmas Eve and as this was one of her first symptoms in February we decided that it needed to be checked out. All was ok with her bloods and general mot,
but we would need to go and see Amos in Addenbrookes to run some more tests.

Today was clinic with Amos. He reassured Holly that he wasn't unduly worried but it obviously needed checking out. It was possible that her magnesium levels were low (this causes leg pain, especially at night) but there is also the possibility that the neuroblastoma has come back. He reassured Holly that if this was the case he has a "plan B" up his sleeve.

This is obviously a worrying time and we won't have any results until the end of the week/beginning of next week. Please keep Holly in your thoughts and I will update as soon as I can.

Christmas Eve

2009-12-24T13:50:00.000-08:00

I would like to wish all our friends and family, who have supported us through a very difficult year, a wonderful Christmas.

I am very thankful to have all my family here with me and my thoughts go out to those that we have met this year that have not been so lucky.

Fun Saturday Night!

2009-12-20T05:02:00.000-08:00

Well let no one say I don't know how to have fun on a Saturday night!

Ben and I had plans to go out for dinner with friends and I was really looking forward to getting dressed up, having some good food and wine and just catching up (especially after our last night out a few weeks ago had been cancelled because of Harry's sick bug, and he now has chicken pox!!!!)

Holly had told me she had a couple of bruises on her leg that morning but I didn't worry because her platelets have been stable ever since her stem cell transplant in July. Also there had been no nosebleeds (another sure sign her platelets are low). Holly called at about 5pm to let me know that she had had a nosebleed, so then I worried. I called the out of hours number and they insisted that Holly was taken straight to A&E to have a full blood count done. As far as I could think, there was only one reason for her platelets to dive dramatically, possible relapse.
I think I drove to hospital on autopilot, convincing Holly (and myself) that it was probably nothing, but in the back of my head wondering, not again? Not just before Christmas? Haven't we been through enough already?

A&E was manic which was not surprising considering the snow and ice. We waited an hour for her bloods to be taken and then had to wait for the results. By 9.15pm they hadn't let us know anything, then I spotted the oncology doctor. My God, why was he here. They must have called him in specially because it was bad news. I actually thought I was going to throw up.

He waved us over and then just calmly told us all her results were fine! He was just the doctor on call and had come down to see a poorly child, had spotted Holly was here and wanted to say hello! The conclusion is - Holly is just clumsy and her nosebleed (only very small when she blew!) was because of a cold.

What a night, my children seem to be conspiring together to stop me having a night out. Ben has promised me I will get to wear my new trousers soon!!!!

I am truly going to appreciate Christmas this year.

MILEY CYRUS!!

2009-12-14T09:13:00.001-08:00

Last night I had an amazing treat, to go and see Miley Cyrus live at the o2!

I was taken by suprise when I was picked up by a pink limo and driven all the way to the o2.Me,my great cousin Lauren and Best friend Megan were completely over the moon! Kirsty on the other hand knew about the limo and was a bit more calm about it! It took about 45 minutes to get there but it felt like 5 minutes because we were having such a laugh in the limo!!

When we got to the o2 Megan, Lauren and I could not stop taking photos! LOL. The sights were amazing. We got in the o2, all of us did a music video (well, not kirsty :S) had some dinner and before we knew it, we had 30 minutes before the show started!

At 7:30 Miley's brothers band-Metro Station were due to perfrom, they were totally brill! Then at half 8, Miley herself Performed, she was absolutely amazing!!!!

After the show finished at 10ish we all got back into our limo and thought we would be home in 45 minutes, but we were wrong, it took 45 minutes just to get out of the car park! Me, Lauren and Megan found this very amusing but Kirsty was just fed up and wanted to get home! Then when we finally got out of the car park the limo broke down! So another limo(this time white)came to pick us up. We finally got home at 12 and I went staright to sleep-well, after a few meds atleast!!

Thank you daddy & Kirsty for an AMAZING night!! love u 2 soo much xxx

Holly xxxxxxxxxxx

Cambridge

2009-12-10T05:17:00.000-08:00

Tuesday was our monthly appointment with Holly's consultant, Amos in Cambridge. All her blood results were good and she got a clean bill of health. Therefore we are fine to start round 3 of the retinoic acid.

I felt a little down after the appointment. The reason being the the GD2 Antibody treatment that has now been approved in the UK. It is similar to the treatment available only in New York but has a different make up. It is given after the first round of retinoic acid so Holly is not eligible, we are about 6 weeks too late. I knew about this antibody from the conference I attended in November but hearing that it is actually going to be used from now was a little upsetting. However it is very very toxic and means a huge change in quality of life. Holly is having all her 6 months retinoic acid treatment at home and has no hospital stays. The antibody treatment would entail 5 days of outpatient and then 5 days in PICU (intensive care) as an inpatient. During the antibody they are given morphine and ketamine as the pain is very intense. There is a long list of side effects, many of them serious. The antibody has only been tested on 15 children so is at a very early stage and the doctors in Addenbrookes are wary of what will happen.

In a way I am glad I do not have to make the decision whether Holly should have it (she is adamant that she wouldn't!). I have to admit I would have put her through it, I think I would have had to. I think any parent would make that choice, you take any hope offered.

I want to send all the love and prayers to the beautiful Ellen who is starting antibody treatment this week. We have been on this journey together with only a couple of weeks seperating their diagnoses. I think she is the first in the country. Her parents have had to make this choice, I am sure it is the right one.

What a wonderful night!

2009-12-05T05:08:00.000-08:00

Wow, what an amazing night. Holly, myself and our friends Max and Sophie headed into London last night to see the musical Hairspray. It was a VIP trip for Holly's Child of Courage award.

The planning was meticulous. Cab was booked, we were going to have dinner first and then a taxi to the theatre. Well, that was the plan.
The cab never turned up. Every cab company we tried were full. Holly took the initiative and went out and found one of our lovely neighbours to take us to the station. We had a great dinner in TGIs and after a few glasses of wine my frayed nerves were chilled. The girls decided that, instead of a black taxi, they wanted to get a taxi bike to the theatre. Even though it was raining we decided, whatever the girls want they were going to get. Anyway it was bound to be as quick as a taxi, haha (we were running against the clock by this point). We managed to find the only 2 bikes that didn't speak English and got us lost. It was 10mins to show time, cue nervous giggling, then hysterical giggling!

We got there with minutes to spare and were met by the lovely Mark, theatre company manager. He rushed us through and straight to the bar (my kind of man). He gave Holly some gifts and we were seated. All of the rushing around was forgotten as the show began. What a totally amazing, amazing show. The songs and the acting were so outrageously over the top and camp. I urge everyone to go and see it. Holly laughed her way through the whole show and it flew past!
As the show finished we were taken through a door and led onto the stage and met some of the main cast. Phil Jupitus was so lovely and chatted away to us. I think I was ever so slightly star struck, but I had a great cuddle with him. Holly got to explore the stage, climb the dancing stages and try on some props.

Holly was on cloud nine all the way home, she got to see London at its best (including the drunken man who insisted on chatting to me, on an escalator, swaying alarmingly, at quite a height!)

A totally awesome night that Holly, and me, will remember forever.

Happy Birthday Holly

2009-12-02T11:04:00.000-08:00

Holly is 12 today.

She has been feeling a little run down but, after a good rest, is getting back up to form now.

The events of the last year have made me grateful that we are able to celebrate today. Thank you for all your thoughts and prayers, I am sure they have helped get us here.

Ticking Along

2009-11-26T12:30:00.000-08:00

Holly is doing so well. Tuesday was the last day of this months retinoic acid. I think we are both delighted with this. Not only does it make Holly's skin incredibly dry and sore but it is a total pain in the neck to prepare. During the 2 weeks off her skin repairs and looks so wonderful. She has had a momentous week, she has enjoyed her first proper shower in over 9 months. It must have been good because she has been in and out of there ever since!

December is going to be such a busy month (as it is for everyone!). Holly will be 12 on the 2nd December. What a wonderful day that is going to be. Back in February I never dared look forward to her birthday, never mind Christmas, but I am determined to celebrate how well Holly is doing and the simple fact that she is here with us. She is keeping us busy with her lists of presents for the birthday fairy and Santa! Unfortunately she knows Santa is actually me, but she is enjoying making it special for Izzy and Harry. Izzy is at that magical age where she is so believing. I am so going to relish having the 3 of them opening their presents and eating their dinner together.

I am very lucky. Holly is well, Izzy is going to be a shepherd in her first Christmas nativity play and Harry is, just Harry. I have so much to be thankful for.

A Few Words...

2009-11-20T04:40:00.000-08:00

New Shoes

I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.

Each day I wear them,
and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.

I get funny looks wearing these shoes.
I can tell in others' eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.

To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.

Some women ache daily as they try and walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have worn the shoes so long that days will go by before they think about how much they hurt.
No woman deserves to wear these shoes.

Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in the shoes of a woman who has a child with cancer.

~Author Unknown

This has been shamelessly stolen from my wonderful friends blog, just says it all.

Hectic Weekend

2009-11-15T12:41:00.000-08:00

I can't believe its gone! Holly's Hickman line was taken out on Friday.

It was all very straightforward, Holly got a little upset before (this is normal, she always panics that she won't wake up from the anaesthetic). I found it very, very emotional. This line has, quite literally, saved her life. It has gone now.

Holly is very matter of fact, she just can't wait to have a proper shower and go swimming.

Holly spent the weekend with Dad and Kirsty and had a fab time at Lakeside (spending some of her winnings from last week).

I spent Saturday at New Scotland Yard at a conference all about Neuroblastoma. It was really interesting and some very eminent doctors spoke. There were a lot of positive things to take away and in particular a new antibody treatment that has just been approved and will be available from January. A lot to think about.

Holly will be back at school tomorrow. I, on the other hand will be spending the day at The Sanctuary in Covent Garden. This is an amazing spa that (along with Sis and Mum) I am going to be totally pampered at and (hopefully) completely relax. I want to say a huge thank you to my lovely Ben for being a fab dad, and looking after Izzy and Harry so well this weekend (and tomorrow!).

Hickman Line Coming Out!

2009-11-12T11:49:00.001-08:00

After speaking to Amos on Tuesday it has been decided (due to Holly's very adamant stance!) that Holly's Hickman line can come out. Addenbrookes phoned today, it is coming out tomorrow!!!

This is her central line which was put in when she was first diagnosed in February. It gives immediate and constant access to a central vein for blood tests, blood products, drugs and chemo. It has, quite literally, been a life saver.

Holly is so excited that it is coming out and can't wait to be able to have a proper shower and go swimming.

I am finding this a quite emotional time. This brings it home that her treatment is nearly at an end. What a long way we have come, how amazingly Holly has battled this illness, how life has changed this year.

And The Winner Is.......

2009-11-06T09:53:00.000-08:00

Holly!!!!!!!!!!!!!

Holly was the well deserved winner of the Child of Courage award at the Mercury Community Awards on Wednesday night.

It was an amazing night, very emotional. Holly was really nervous and all her earlier bravado deserted her as her category got closer. There were a few tears shed. Her prize is a night out to London to see Hairspray and then meet the cast on the 4th December. This is just 2 days after her birthday so it should be a great night. She also received some money to go shopping.

My lovely brother-in-law had also nominated me as Carer of the Year and I was totally gobsmacked to win it. I don't see myself as a carer, I'm just Holly's mum doing what any mum would do. My prize is a 2 night stay at Champneys Henlow Grange! I think he had second thoughts after I won though, as I will be taking my sis so he will be left with the kids (sorry Steve!).

I was so proud of her. It was a fantastic way to round off the last 9 months. A good night, with great friends, lovely food (and plenty of wine!)

I would also like to thank Val and Keith for the lovely cards. xx

Half Term

2009-10-30T05:45:00.001-07:00

It has been really nice not to have to get up at the crack of dawn to get everyone up and ready for school. Really nice until about 9am when they are all driving me mad and I find myself wishing it wasn't the school holidays!

Holly is doing great. We were up in Addenbrookes on Tuesday for her first day of blood tests to see whether the dose of retinoic acid needs to be altered. It was a very long day. The tests are done at 1,2,4 and 6 hours after her meds so we were in from 9 til 4. No big deal, Day Unit is perfectly pleasant and we caught up with a few friends. We also did "lunch". Holly brought her laptop as she couldn't possibly be away from MSN for that long in the holidays.

Holly went to see the new MJ film with Dad and Kirsty yesterday and then met up with Nanna and Nanu for lunch and then shopping. Pretty much a perfect day for Holly!

Not much else to report, life has really settled down into a "normal" routine now, and for this I am immensely grateful.

Next week is the Community Awards night at Hertford. Its going to be a wonderful night and I am really looking forward to it. We have a large group going so I am sure it will be a fun (and sober, hahaha!!!) night.

An Amazing Phone Call

2009-10-23T13:30:00.000-07:00

Just a quick post. Today has been amazing.

Holly had a phone call this evening from her favourite X-Factor contestant, Stacey. She was so lovely to her and had a nice chat, even though Holly had burst into tears when she found out who it was! She is still floating on excitement!

Thank you so much to our wonderful friend Emily (whose daughter Ellen has Neuroblastoma too) for making this possible. You have made Holly's day/month/year (and mine too).

It truly makes you think, although this has been a horrible year, we have made some wonderful, lifelong friends. There have been lots and lots of lows but some wonderful highs. It is amazing that, just a phone call, can make so much difference and be so magical. Thank you.

Happy Birthday Izzy

2009-10-19T04:58:00.000-07:00

This has been a lovely week.

Holly has been healthy, the retinoic acid is going well. She is just starting to get some of the side effects, sore lips and dry skin. She has some vitamin E cream to put on and we are trying various different things for her lips. It probably doesn't help that the weather is getting colder so the heating is on. It also probably doesn't help that she has got very into make up and always has some sort of lip gloss on!
We see Amos again tomorrow but only have to go to our local hospital as he is doing a clinic there.

As the title says it was Izzy's birthday on Saturday. We had a lovely day, Izzy (helped by Holly and Harry) opened all her presents and was over the moon with her new kitchen. They played with it for hours (all of them!). We headed over to Auntie Clares in the afternoon (it was also her birthday but, due to me selfishly having Izzy on the same day, it has been somewhat overshadowed). It was a fun afternoon and I had to drag the kids, kicking and screaming, home.
Sunday was Izzy's party. It was lovely to see everyone and it all seemed to go well. Even the little ones first experience of pass the parcel worked, sort of! Thank you everyone for all the lovely cards and presents. Elmer in particular has been everywhere with Izzy today.

I will end on Holly's new youtube video, as with her other video it will probably make you cry (but this time with laughter!!!). I can't believe what she gets up to in her little brothers bedroom!

http://www.youtube.com/watch?v=OjJLvllGYCI

(for some reason it won't link, just copy and paste)

A Normal Week

2009-10-14T13:15:00.000-07:00

Holly is doing great.

Her blood counts are good and she has been at school every day, apart from clinic day. We were up in Addenbrookes on Tuesday to see Amos. He is delighted at how Holly is doing and everyone has commented on how well she looks. We were given the start of the maintenance meds and sent on our way.

Today has been the first day of the retinoic acid meds. It is going to take a while to get to grips with it (to say the least!). Holly has to have 5 capsules twice a day. Holly doesn't take tablets/capsules! There is a leaflet all about how to open the capsules and get the meds out (very complicated, involving heating the capsules on a spoon, snipping the end off and squeezing the goo out). It took ages as the capsules are tiny and they kept slipping out of my gloved hands and goo was shooting everywhere! I am sure it will become easier the more I do it. Next appointment is Tuesday at Lister as Amos is doing a clinic there.

Izzy and Harry both have nasty coughs and colds (again). They are both on anti-biotics to try and clear it quickly to try and avoid Holly getting it. They are fine though, Izzy is very much looking forward to being 3 on Saturday and her party on Sunday. Heres hoping all are well.

Child Of Courage

2009-10-09T13:10:00.000-07:00

I had a phone call from out local newspaper today to tell me that Holly has been nominated in their community awards for a "Child of Courage" award.

I saw these awards advertised a while ago and wrote a letter about Holly and everything she has been through. I have to admit to this letter being shamelessly about how proud I am of Holly, and how she has dealt with her treatment. She has also helped others in the same situation on the ward by talking to them and showing them things like her Hickman line and her wig. The paper obviously agreed with me and we will be attending an awards dinner on the 4th November where Holly will find out whether she has won.

Holly has had a good week and (apart from clinic) has managed to be at school all week. I have had a good (if hectic) week and it has been great to have a "normal" mums life. This week has revolved around Hollys school runs, Izzys pre-school runs and Harry's baby groups. He has also enjoyed his first full stay in the gym creche which has allowed me to enjoy getting back into the swing of the gym and classes. Thanks to a particularly intense spinning class I am now quite "saddle sore!".

I am looking forward to a night off tomorrow. Holly is going to Dads and Ben and I are actually going out together! We haven't had a night out for absolutely ages so, thanks to Nanna babysitting, we are going out for a chinese. I am really looking forward to a night out and spending some quality time together (along with a few glasses of wine!)

Curry and Addenbrookes

2009-10-06T13:07:00.000-07:00

Sunday was the curry afternoon organised by out wonderful friend Martina. It was a fab day, the food was fantastic and everyone seemed to be having a great time. Izzy enjoyed her first time in a restaurant (never mind her first time with Indian food) and thoroughly enjoyed trying all the new tastes. Her particular favourites were rice, sausage (smuggled in by nanna) and ketchup! She was also partial to the chocolates being passed around. She followed Holly round and even helped her with the raffle.

Today was clinic day up in Addenbrookes. Amos took one look at Holly and said that she looked much too well and he didn't need to see her! That was great, after an hours drive! Only joking, Holly also needed bloods doing and a few tests so we had to be up there anyway. It seems strange to say this but we actually had a great time at day unit today. We saw lots of friends and it was a real time to catch up. It was particularly great to see Gabe and his mum Chris - www.ourpreciousgabriel.blogspot.com. I haven't seen Chris for so long and although we have texted and kept in touch it was wonderful to see her. For those that don't remember I credit Chris with getting me through Holly's diagnosis in February. The Davies4 are a truly inspirational family and have been great friends to myself and Holly and it was good, after comparing notes, to realise that I am not totally neurotic, just another cancer mum.

I have to admire Holly for trying to delay our departure from day unit (to ensure she got to school later) but into school she went. She had a good afternoon and then walked all the way home. I was sceptical that she would be able to do this (it is quite a long way and it was also raining!) but she arrived home shortly after 4pm. She was tired and sweaty and adamantly announced she was never doing that again! It was very funny to see my independant little lady flopped on the sofa saying she was too exhausted to do anything.

Holly should hopefully now have a full week at school until our next clinic appointment on Tuesday. This is where we will get our supply of maintenance medicine and then start the final phase of treatment.

Looking back is tough, going forward is scary.

Back At School

2009-10-02T13:11:00.000-07:00

Well as the title says, Holly is back at school having sailed through radiotherapy.

I am so very proud of the way she has handled this stage of her treatment, and the positive way she has dealt with the travelling up to Addenbrookes every day.

She had a little wobble at the thought of going back in today and how she was going to answer the many questions sure to be asked of her. Not many people knew that she has cancer and that she was going to be off for radiotherapy. The teachers left it to Holly to tell people when she was ready. I am pleased to report that all went well today and most people now know the real reason for Holly's absence. She decided to tell them herself and they all took it in their stride (as most kids do). She has had a good day and settled back into the school routine (early start!) with no problems.

Heres to a good weekend, I am off out to a party tomorrow night (and very looking forward to it, it is within stumbling distance home but I have decided to behave myself!) and our curry afternoon is on Sunday. I am hopeful life will now be able to settle into a more "normal" routine and we can be a "normal" family again.

Nearly There

2009-09-29T14:14:00.000-07:00

Only 2 more radiotherapy treatments to go.

Holly is doing really well. She is feeling good and looks great. We saw her consultant up at Addenbrookes today and he is very pleased with the way she has handled the radiotherapy. Her blood counts have remained good and her weight continues to be good. He went through the next stage with us. Holly will have 6 months of maintenance meds. 2 weeks on and 2 weeks off. She will be taking retinoic acid which is a medicine usually used in very severe acne! This is the normal drug they use and her only side effects could be dry lips / skin and thin hair. Compared to all the other things she has been through this is small fry and she isn't phased by any of it. Holly got to see one of her friends, Jess, from C2 today at the day unit. They chat regularly on MSN but haven't seen each other for ages so Holly was really pleased. It also helps time pass a little quicker as you are waiting for appointments.

All being well Holly is back to school on Friday. We will have to go back to Addenbrookes for clinic on a Tuesday for a couple of weeks but she will hopefully be able to go back to school straight after.

Our lovely friend Martina has organised another fundraiser for Holly. We are taking over a local curry restaurant on Sunday and half the proceeds are going towards Holly's holiday fund. This should be fun, it will be lovely to see everyone and enjoy some good food (and a few drinks!). I am taking Izzy with us and am interested to see what her first impressions of curry are!

Totally off topic but my gorgeous little man is now walking at the grand old age of nearly 17months! He is very pleased with himself and he is managing to create even more havoc than I thought possible. He is a great distraction and keeps us all very busy. Any tips on getting him talking now would be appreciated!

Half Way Through

2009-09-23T11:15:00.000-07:00

Well actually more than half way through radiotherapy now. 8 sessions done, 6 to go. Holly has been doing great. She has been sick twice and a little tired, but most of the time she is feeling really good.

Dad took Holly to her radiotherapy on Thursday and Nana and Nanu took her on Friday. This was great because Holly got to show them round and I got to not have to drive up and down the A10 again. Dad also took Holly yesterday because I have been quite poorly and just couldn't manage it. We have all come down with Holly's bug from last week and are all on antibiotics. Just great.

We would like to wish Nana a very happy big birthday today. She has been fab looking after my little monsters, especially as they have been under the weather and quite hard work!

Rough Weekend Then Radiotherapy Begins

2009-09-14T13:44:00.000-07:00

Holly came home from her first week at school with a sore throat on Friday. This then progressed to a temperature and a headache on Saturday morning. Any temp over 38 degrees means a visit to the local hospital so it was off to Lister at 9am.
I wasn't allowed to give her any paracetamol until they had taken bloods, but once she had it her temp came straight back down. As she had a cough they also decided to do a chest x-ray. By this time Holly was feeling fine and I was hopeful that we would be allowed home. All the tests came back clear but we then had to wait to be signed off by the docs so it ended up being 6 hours in hospital! We went home with anti-biotics for her throat and cough.
She was ok on Sunday but her temp was still hovering near the 38 mark so I decided to wait until Monday (when we were due in Addenbrookes) to see the team there if needed.

I am happy to report that she has been loads better today. Her temp has been normal all day and her appetite is returning. She has been much brighter and it has been wonderful to see. It is amazing, a typical cold that most parents wouldn't bat an eyelid at, has me in knots! I even got up at 1am last night to check her temp. It is unfortunate, but even the simplest of infections can be devastating to someone in Holly's position so I am delighted she seems to have seen this one off without too much effort!

Today saw the start of Holly's 14 day stint of radiotherapy. It was so straightforward. It took about 10mins to get her into position but the actual radiotherapy took less than 5 minutes. It will get quicker each time we go as the team and Holly will be used to each other, and know what to expect. Holly had her music playing and, as usual, took it all in her stride. I am so proud of her.

A Good, If Hectic, Week

2009-09-11T14:05:00.000-07:00

I have to say Holly seems to be absolutely thriving at her new school.

She is becoming very independant and has even started walking (most of the way) home from school. She is enjoying most of her lessons (some are just regarded as "boring!") and has made lots of new friends.
Her uniform has also had a bit of a makeover too. As you can see from her picture on the previous blog she was very tidy and studious looking. When I picked her up the other day her uniform had altered somewhat. The skirt had dramatically shortened to well above her knee, her shirt was hanging loose and she was very pleased with herself! Seeing as most of her peers also look like this I am not too bothered, I have faith that school will put a stop to any overt flouting of rules and I am pleased she is finding a "look" for herself. I did tell her I did exactly the same when I went to school but she just gave me a disdainful look and laughed. I don't think she believes I was ever cool!

It has been a very hectic week. Izzy started pre-school on Thursday and she was a dream. She went straight in and had a wonderful time. This morning, however, was a different matter. After telling me all morning that she wasn't going to go to school she had to be prised from my leg screaming. Although this was horrible I am quite used to it. Holly spent the whole time in pre-school, nursery and reception (3 years!) crying and being prised off me. I had visions of her being a teenager and still crying going to school! Izzy came out today and told me she had a great day so I am hoping she will settle quickly.

After getting the girls out from under my feet Harry is proving to be a bit of a challenge. He is totally adorable but is becoming a very naughty boy. He has very definite ideas of what he wants and certainly makes them known! He is so cute that it is very difficult to tell him off and even when I am being stern he just laughs at me. This is my next challenge so any ideas would be welcome. I am relying on enrolling him into the creche at the gym to instill some discipline. I am sure this is probably not the right thing, but hey, it works for me!

Next week is the start of radiotherapy. After everything Holly has been through I am sure she will sail through this. Even if only for the fact she will be missing 3 weeks of school!

PS - TV is nearly up! Plastering is done, painting has just been finished tonight. TV is going up tomorrow. Ben is very excited.

New School

2009-09-04T12:59:00.000-07:00

A day of mixed emotions.

Holly started her new secondary school today.

I must admit to feeling a bit apprehensive about this new step. For 6 months we have lived our life inbetween Addenbrookes and home. Our world has revolved around chemo appointments, tests and blood counts. I have had Holly with me pretty much the whole time. I have cared for her, done her meds, changed her dressings and have been with her all the time. I now have to take a step back and let someone else care for her during the day. I thank God that I am in this position. I am thankful that she is well enough to start school with all her classmates. 6 months ago I doubted that we would get to this point. She is so ready for this, she has missed this normality. She needs this normality.

She has been remarkably calm and collected about the whole thing. It was only a short day but she has worn a uniform for the first time in 6 months and thoroughly enjoyed her day. She got her timetable and met the rest of her clasmates. She has been the same as everyone else. Life feels good today.

MRI Results

2009-09-02T11:33:00.001-07:00

One of the team from Addenbrookes called with Holly's results today.

All great news!

The MRI showed more improvement, this is great because the previous scan had also showed great improvement and meant Holly didn't need to have surgery.
Her MIBG scan (this shows any neuroblastoma cells in the body) was also normal.

I am so relieved to get this phone call out of the way. I know that the team all get together and have a big meeting on a Wednesday to discuss all scans and test results, so I was half expecting a call today. It was such a relief to hear the words that told me all was going well.

It has been a very good day today and I intend to break my not drinking during the week promise, and celebrate with a very large glass of wine.

PS...Ben is also very happy tonight as his new huge tv has been delivered. This tv is not just a tv. In order for him to be allowed it, I, very nicely, insisted it needed to be wall mounted to avoid Harry being crushed. This has resulted in the old fireplace being removed and the chimney breast needing to be replastered. This is happening tomorrow and it then needs to be painted! So his new tv has meant a rather large DIY job! Thanks to some lovely and talented neighbours this has been pretty painless. I am sure Ben has great visions of the children watching Disney films in HD but I fear he will be disappointed when Fireman Sam (in non HD!) is demanded.

A Normal Week

2009-08-31T13:20:00.000-07:00

Sorry I haven't written much but it has been a very non eventful week. Holly is feeling great and eating really well.

She had a fun day on Thursday last week as she was going to Megan's for sleepover part 2. They went bowling during the day and were then had to be told to go to sleep when they were still up at 1am! She has had a ball, as you can see from her picture. They then went shopping by themselves on Friday and, as usual, Holly managed to spend every penny given to her. She reminds me of the film Brewsters Millions (sorry if anyone is too young to remember that!)

She has also been in our local paper once again. I had written a letter to them to nominate Holly for the Child of Courage award in the Community Awards and thought no more about it. Next thing I know she is on the front of the paper and my letter is printed in an article inside. This was done to publicise the awards. I must admit to it being shamelessly soppy, and I really didn't expect it to by printed in the paper so felt somewhat embarrassed. However I have had nothing but positive comments, and Holly is quite pleased to be in the news yet again.

This week will see the build up to Holly starting her new secondary school on Friday. She is very excited and not at all nervous. I am sure I will be running around getting the last few essential items all week. We are not in Addenbrookes at all this week (as far as we know!) so heres hoping for a peaceful run up to Friday.

MRI

2009-08-26T13:57:00.000-07:00

Today was Holly's MRI scan followed by a CT scan in radiotherapy.

She has been feeling fine since Friday and had her promised sleepover with Megan on Sunday night. They stayed up very late (not sure exactly until when, but we think about 2am!). They watched dvds and ate copious amounts of rubbish. The floor was littered with space ship sweets the next morning! They seemed to have a fun day and Holly is going to stay with Megan tomorrow night. It is lovely that she is able to do this and is well enough for it to be no problem. I have noticed though, that a tired Holly plus an audience, equals a little madam. I am assured that they are all like it at this age. I can't wait for the teenage years!

Holly's MRI scan went smoothly today. I can't begin to explain how noisy this scan is. You need earplugs in and it is still horrendously loud. Yet Holly fell asleep. Maybe thats what I need to do at home? We don't have any results yet and I don't expect to hear much. They are doing these scans as planning for radiotherapy and it isn't very long since her last scan.

She then had her CT scan. This is the scan where they get her positioned correctly for all her radiotherapy. Once lined up they drew 3 points on her which were then tattoed. They are only tiny pin pricks but will be there forever, fading over time. These will be used to line her in place each time she goes. She was quite impressed to be tattooed at 11 years old. It made me feel quite sad. It will be a permanent reminder of everything she has been through.

I must say a huge thank you to my wonderful mum for looking after Harry and Izzy so well while I have been up and down to Cambridge these last few weeks. She has made sure that they haven't really noticed that Mummy has been away so much. I wouldn't have been able to spend all this time looking after Holly without her help.

A Rough Day

2009-08-22T14:07:00.000-07:00

Holly's bone marrow aspirate went well. She was initially very apprehensive about being put to sleep again but it was remarkably calm. I was very proud how well she handled it and we were both very brave!
We left Addenbrookes about 1.15pm but by the time we got home Holly was shaking violently and her temperature was climbing. In the space of 20mins it had gone from37.8 to 39 degrees. Anything over 38degress is regarded as a fever and needs checking out. After calling Addenbrookes back it was decided that I needed to take Holly to Lister A&E for observation.

Holly was not impressed, but we had to go. They checked her out and there were no signs of any problems. They thought it was probably an adverse reaction to the general anaesthetic and a long car journey home in the warm that had caused the temp rise. They decided to observe for a while and do some bloods. We were then able to go home as she was not neutropenic and the hospital would call us back if we needed to go back in. Her temp had started to drop by itself by this point so I was quite happy with this. By the time we were home her temp was normal and has, thankfully, remained this way since. Our lovely community nurse came by this morning and re-checked her bloods and all was fine. Her white counts had risen yesterday which may have indicated an infection, but her body seems to have fought it off by itself. She is feeling fine, eating fine and her temp is ok so I am quite confident that it was just a blip from the GA.

She is spending the night with Dad and Kirsty (as she is no longer having NG feeds this is much easier) so I have enjoyed a peaceful night with a glass of wine and a marathon watching of 3 episopes of House. It is amazing what is boring to some is absolute bliss for me.

Next week is quieter (thank god). Holly has her MRI and a CT scan for radiology on Wednesday. This should be it to be ready for the radiotherapy. I am thankful this week is over but am so proud of the way Holly has dealt with it all.

Nose Tube Gone

2009-08-19T13:23:00.000-07:00

Holly wanted me to update to let you all know that the dreaded nose tube is no more. The dietician agreed with me that as she has put on 2 kilos in 2 weeks (!) she was obviously eating enough. It is lovely to see her pretty face properly again.

We had a good check up on Tuesday and Holly's hearing test was fine. The chemo hasn't caused any deterioration which is great. We also met the consultant radiologist who went through everything and answered all of Holly's questions. Holly will be starting 14days of radiotherapy on 14Sept at a very low dose.
Today was the MIBG scan which Holly took in her stride (as usual). As we were hanging around in day unit we got the opportunity to go and have a look at the radiotherapy department and see the machines. Holly seems remarkably unphased about this new chapter. She just wanted to know if she could have a picture on the machine to put on the blog when it all starts.

I get a day off from Addenbrookes tomorrow as Kirsty is taking Holly for her follow up scan. I am looking forward to spending the day with Izzy and Harry (and the plumber!). We are back in Addenbrookes again on Friday for Holly's bone marrow aspirate. She has decided that she doesn't like being put to sleep now but she will try and be brave. I have also decided to try and be brave...

Strawberry Picking

2009-08-17T13:22:00.000-07:00

Holly is doing really well. She is eating brilliantly and is keeping me on my toes as she is constantly hungry. I am hoping that this will mean that the NG tube can come out very soon. Holly is desperate to get rid of it in time to start school, even if this means that she will need to take her meds orally.

We have a very busy week this week and are in Addenbrookes every day except today. Holly has to have a hearing test, MIBG scans and a bone marrow aspirate this week. Next week is an MRI scan. The results of all these are needed before radiotherapy can start.

We decided to take advantage of our only "free" day with a strawberry picking afternoon. The little ones had great fun and Holly couldn't help but be buoyed by their enthusiasm. The strawberries were very few and far between but we had much better luck with the raspberries. Holly filled her basket and has now washed them ready for eating. She is, however, more interested in her chocolate crispy cakes!

I am hoping that she is getting ready for bed now. My little night owl was not impressed when I informed her that it was an early night tonight as we have to leave early tomorrow. Please keep Holly in your thoughts and prayers for good results from all her tests.

Becoming Independant!

2009-08-12T13:13:00.000-07:00

Holly has had a good week since my last post. The blood counts on Monday were good and we haven't had to make any trips to Lister.
We have had a quiet week as next week is pretty packed. We are in Addenbrookes on Tuesday for our clinic appointment, back again on Wednesday for an injection and a scan and then back on Thursday for a follow up scan. We will have quite a few tests over the next few weeks in readiness for the radiotherapy.

Holly has turned into a teenager. She is watching tv until quite late and then is a total nightmare to get up in the morning. She surfaces about 10.30 (if I'm lucky) and then is ready for her fry-up! Her eating has come on so much in the last week that I am confident we will be stopping the nose tube feeding very soon. Hopefully I can see the dietician at clinic next week and we can decide it isn't needed. I know Holly will be very glad to see the back of it. We have also cut down on the number of meds she is having.
The late nights are going to become earlier nights as we head towards September in anticipation of school. She is expected to be in school from around 8.15am. Looking at the time she sleeps she will need to be in bed at about 6pm!
One of Holly's teachers from her new school is coming to meet us on Friday to have a chat and answer any questions that we might have. They are really positive and I am sure they will support Holly throughout the transition into secondary school.

Going off in a totally different direction, Izzy has now been out of nappies for 2 weeks! I kept putting off doing it because we were in and out of hospital so much. She did it in a day and with only 2 accidents. My main problem now is getting to the potty before Harry as he has a fascination with splashing it all over the place. He is very pleased with himself!

Holly has decided that as she is nearly 12 (!!!!!) I should be giving her some independance. This week she asked if she could walk to the farm shop (5mins round the corner, no main roads) with Sophie from next door (also 12). I agreed with some trepidation. It turned out that the farm shop was shut so they went to the Tesco Express (round the other corner and across a main road). Luckily I found this out after they came back safely.
The next request was to go shopping to Brookfield with Sophie the next day. Sophie's mum would drop them and then collect them after an hour. I said yes, as long as she took her mobile. This was followed by a mass debate as to how much money she could take. She wanted £50!!!!! No way.
The shopping trip went fine. I called her on my way out and she was having fun. I did, however, drive past where she was just to make sure all was ok (she doesn't know this though). It was hard to let her go, I don't know if it would be so tough if she wasn't poorly. Probably would be. We have fought so hard over the last 6 months that I don't want anything to happen to her. On the other hand its wonderful that she is well enough to go and do normal teenage things, and I don't want to stifle that. Being a mum can be tough...

A Normal Week

2009-08-07T14:10:00.000-07:00

This week has been good. As it is the school holidays Holly has been "normal" by being at home with us. That has felt good.

We saw Amos in Addenbrookes on Tuesday, all is going well after the stem cell transplant and he is very happy with Hollys numbers. We have to give her body at least 60days to recover from the high dose chemo she had, so it is looking like radiotherapy will start some time mid September. How long the radiotherapy will take is dependant on what the plan is going to be. This will be decided over the next few weeks with the team of doctors and radiotherapists. They will decide which site will receive the therapy (either the adrenal gland or the site of the larger tumour on her hip). It may be that they decide to do both areas. It will take between 2-5 weeks of daily trips to Cambridge but the actual therapy is quite quick. We are now down to twice weekly blood counts (instead of almost daily) and her counts are recovering well on their own. She hasn't needed any bloods, platelets or stem cell rescue. This is amazing and shows that her bone marrow has started working correctly. We are back in Cambridge on the 18th.

Today was a bit of a milestone for me. I took Holly shopping to get her new school uniform. I remember thinking, back in February, that she may not start her new school. I thought she might be too poorly, and never go back to school. I remember thinking that I didn't care which school she was allocated, it wouldn't matter anyway. I was wrong. She has proved me so wrong. Thank God. I would love to say she was a joy to take shopping but, the skirt was too long (on her knee!), the shoes were not cool enough and I can't tell you what she thought of the blazer! Suffice to say, she looked wonderful in it and I can't wait for this new chapter in her life to begin.

Go Neil!!!!!!!!

2009-08-03T12:50:00.000-07:00

Wow, what an amazing weekend!

Our very good friend Neil (Hollys friend Megans dad) was competing in the London Triathlon on Sunday at the Excel Centre. This comprises a 1500m swim in the Thames, a 40km bike ride and a 10km run. He was doing this for Cancer Research and Holly. Wow...

He has been training hard and we all turned out to support him. It was an amazing atmosphere, all these people pushing themselves to the limit, most for charity. Martina (Neils wife, who also arranged the huge benefit disco for Holly) had arranged t-shirts for everyone with Hollys picture on and Neil had the 3hr barrier to beat. We waved him off to the start with cuddles from his girls, and also from Holly. I have to admit, I wobbled at this point. He was doing all this for Holly. It was huge.

He was amazing. Top 20 in the swim and the whole course finished in 2hrs 45mins! We tried to support him at key points, he did not look amused by the run! This has got to be tough, I have so much admiration for him.

Holly had a fun, if tiring day. We all went back to Neil and Martinas for dinner and drinks in the garden. Holly was having so much fun she didn't want to come home. I had to practically drag her out at 10.30pm, even though her eyes were drooping. She was on her feet for a lot of the day and was totally, happily, exhausted by the end. I was bitten horrendously by the mossies (I think!) last night, and my foot has swelled up terribly. Although I am suffering, I am sure it is nothing compared to the athletes from yesterday. I am with you in spirit Neil!

We are off to Addenbrookes tomorrow for a check up so I will just leave you with my thoughts from yesterday.

Wow, wow, wow.............................

Shopping, shopping and more shopping!

2009-07-31T07:46:00.000-07:00

Hi, it's Holly again and I must say I'm really enjoying being in contol of the blog.
:)

Today has been good. This morning I just chilled on the sofa and then at lunch time mum took me to Harlow to do some shopping. I must say that Harlow shopping centre is not as good as Brookfield. We went to Primark, New Look, Peacocks, Next and matalan but all I managed to find was a pair of leggings.

Mum has taken Izzy to a garden centre to meet up with Aunty Clare, Millie and Gracie.(I really could not be bothered to go as I am still recovering from my long walks around the shops.) LOL.

I'm off to dads tonight to have my fave chicken fajitas....YUM!!!!! I must make sure I am back for 10 though for my feed.(Mum will be cross if I'm late as she likes to go to bed by 10.)

:)xxxxxxxxxx

Chocolate Crispy Cakes

2009-07-30T14:04:00.000-07:00

Hi, it's Holly here, this is the first post I have ever done so forgive me if it's not as good as mums.

I have had a lovely day today. The nurse came in the morning and did a full blood count. My neutrophils were 0.93 so I needed GCSF.

Then we all walked to the shop to get the very important chocolate I needed to make to make my crispy cakes. I made them at home after and I have to say they were LOVELY!!!!!!

Well, I'm gonna go to bed now but first I just want to say a huge hello to grandad who has come over from Ireland today.(I love having hime here!)

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2009-07-25T13:45:00.000-07:00

Its been a whirlwind couple of days. Getting back into the swing of "normality" has been very welcome.

Normal, however, is different. Our normal means almost daily nurses visits and blood counts. Our normal (we were told) would be regular visits to the local hospital for platelets and blood transfusions. Luckily, this hasn't happened this week. Holly's counts have remained good so no transfusions have been needed. We have been able to be at home, go shopping (Holly is very good at this!) and go out.

I have got to grips with all the meds, 5 in the morning and 5 in the evening (6 at the weekend). Holly has got to grips with her ng tube (flushing it and putting in her meds). I have mastered her feed and pump. I think we are achieving "normal".

Holly has spent today at Dad and Kirstys and has had a great time.

I spent the afternoon at a steam rally near Hemel Hempstead. It was a fab day, Harry loved all the engines and tractors. He was amazed at the shire horses and the big balloon. It was all for charity. When Holly is stronger I am sure she would love it (she gave me a look that said not when I asked her!).

Another huge thank you to my friends Julie and Louise. They organised and did the aerobathon for Holly and the Neuroblastoma society. They came round today with the proceeds, amazing generosity from everyone. We are all totally chuffed.

Day 30

2009-07-22T12:59:00.001-07:00

Well, 30days post transplant, WE ARE HOME!!!!!!!!!!!!!!!!

Day 29

2009-07-21T13:23:00.000-07:00

We are still hoping to go home tomorrow.

Holly has been fine today and had a good night. She had some platelets and then a blood test an hour later to see how her body is dealing with them. We are waiting to see the results of this and then hopefully be out in the morning.

I successfully managed to do Hollys NG tube feed last night and it all went well. I am quite confident about going home with it now, and am sure that between myself and Holly,
we can deal with it.

Holly made some cakes today, they look good but she has been reluctant to try them! The swine flu has caused some changes on C2. The playroom is now closed and all the toys have been sent to storage to prevent any germs spreading. The children cannot socialise together in there and all activites are now done at the bedside individually. I am quite glad that Holly is not a 3 year old whining to play in there as it is the favourite place of most of the children (and the parents).

We have had a good day, however it has been a sad day on the ward. One of our number has had some very bad news, and is going home tomorrow. It is heartbreaking, even the nurses were crying. It must be very hard for them, they are so wonderful and must get so attached to the children. I am sad tonight, this disease is too cruel.

Day 28

2009-07-20T14:20:00.000-07:00

The doctors have said we may be coming home on Wednesday!

As Holly is doing so well they don't see any problem with us going home this week. All her meds can be done by herself, and platelets can be done at the local hospital. I can give her any additional meds, and I have now been shown how to set up and give her NG tube feed. This will be given overnight until she is up and eating normally again. It is quite easy to do and I am willing to learn whatever, to ensure that we can do as much as possible at home.

I am looking round our room, wondering how on earth we have accumulated so much stuff, and how we are going to pack it all up!

Holly has done well today. She hasn't felt very sick and has managed to eat 2 bags of skips, an ice cream and some banana. This is so good compared to the last month, I am hopeful that the NG tube shouldn't be for too long.

I have had an enjoyable evening in the parents room tonight with some of my C2 friends. We have had a gossip and a laugh over a few glasses (ok white plastic cups) of pimms. I think some of the new parents were a bit bemused by how we could be cheerful, but they will come to see it is all part of the process. I get great comfort from the solidarity here. Holly was so engrossed in her tv and computer that she was quite happy for me to leave her. This also shows how far Holly has come over the last 5 months. She is so comfortable here now.

Day 27

2009-07-19T13:25:00.000-07:00

Holly had another good night. Her bloods were done early and her platelets were low. She is needing platelets roughly even 2nd day at the moment. This is quite normal and should become further apart as her counts improve. It was doubtful that she would be allowed out for the afternoon.

Holly passed the morning watching tv and on the computer. Her platelets were done quite quickly so it turned out that she was allowed out. Kirsty brought her home to me and she got to spend the afternoon at home with us all. Izzy was delighted to see her and was fascinated about her hair (you would think she was used to it by now!). She asked me if Holly was back because she was better now, I told her that Holly was nearly better and she would be home properly soon. Izzy wisely told me that the docotors were making Holly better again, even though they had taken away her hair.

It was lovely to have her home again, even if it was only for a few hours.

We are now back in Addenbrookes, Holly is just doing her meds. The nurse made the mistake of telling Holly that she could take her time doing them, and she is doing just that! I think the 7 medicines have now taken 35mins. She is multi-tasking, pushing her meds in and chatting on MSN.

It is good to think that we are approaching the end of this horrible stem cell journey. I know it was something that we had to put her through, but it has been so very tough, both mentally and physically. I cannot wait to be back at home with Holly. She cannot wait to be back at home. Lets hope that it will be very soon.

Day 26

2009-07-18T13:36:00.000-07:00

Holly had a good night and again woke feeling a little sick.

She has been fine though and the docs remain pleased with her. Her nose tube has stayed in and she is still tolerating her tummy feeds well. The dieticians have said they are going to stop her TPN feeding (through her Hickman line) as the NG (tummy) feeds are going so well. This should ensure she starts to feel more hungry but there is no pressure as the NG feed will provide her with calories.

I had a very enjoyable morning catching up with domestic chores and taking Izzy for the big Tescos shop. Just doing this normal weekly task was fun, Izzy was great company and we really had some fun.

After lunch Harry had his sleep. Izzy wanted a rest with Mummy and Daddy, so we all went up to our bed and had a lovely rest. We were all snoozing along very nicely when something disturbed me, I opened my eyes and Holly was there! OMG I thought it was a dream but there she was, smiling at me. The docs had said she could go out for the afternoon again so she thought she would pop home to collect her wig. It was all quite surreal because my mum had also popped over to collect her car and as she was leaving (while we were all asleep upstairs!) she let Holly in. It doesn't say much for our "on alert" capacities. Anything could have been going on and I think we would have just slept through! It was wonderful to see her and she looked great. She has now gone back to the hospital after some cheesy pasta and a sausage with Dad and Kirsty.

We took the kids to see the animals at the garden centre and then dinner at Auntie Clares. Much fun was had, but they were certainly ready for bed by 7.

I am feeling better today, my back has eased and I am hoping it will stay that way. I also want to say a belated Happy Birthday to Julie (my wonderful friend who organised the aerobathon), I am so sorry I forgot, it's been a long week is my only excuse. I will make it up her with a night out very soon hopefully.

Day 25

2009-07-17T14:08:00.000-07:00

At the risk of sounding very boring I am delighted to report another good night.

Holly woke feeling a bit sick but was immediately buoyed by the thought of getting out for a few hours this afternoon.
I did suggest, as she was feeling well, that she go into the school here for an hour this morning. This was dismissed as there was something much more important going on. It was Fern's last day on This Morning! This was not to be missed and I have to admit to watching too, Phil and Fern have been a happy distraction for the last 5 weeks.

The docs were very late on their rounds today and then thought it would be highly amusing to tell Holly that her neutrophils were below 1 (this would mean she was not allowed out!). Holly saw the funny side, I however was slower on the uptake and was about to crawl under the bed and hide. Once established as a joke we were given the all clear for our afternoon out.

We came home for the afternoon, it was great. Izzy and Harry were delighted to see their sister and the feeling was mutual. I had a lump in my throat watching all my children together again, as it should be. Izzy was drawing a picture of Holly on the etch a sketch and trying to work out what the new tube on her face was. She was examining Hollys new very bald head and said it was ok don't worry, she had found Holly's hair, it was over there on the couch!

Holly was also delighted to see that she is in our local newspaper. The Hertfordshire Mercury have covered the Aerobathon that my friend Julie organised for the Neuroblastoma charity and they have done a lovely article about Holly and she has her picture in print. I am going to take a copy to the hospital to put up on the wall.

Holly has now gone back to Addenbrookes with Dad and Kirsty. She has sent me a text and all is ok. I did have to send her a few texts back to establish this, as I didn't quite understand her messages. She uses as few as letters as possible (as per MSN) and I think I am just too old!

I am now in my lovely huge bed nursing a very sore back. It has been very bad this afternoon so I am hoping it improves after a good nights sleep.

Day 24

2009-07-16T13:21:00.000-07:00

Sorry if I'm repeating myself but another good night (not sorry really).

Holly was feeling good today, a little nauseous but hasn't been sick. Her feed has been upped into her tummy and she is tolerating that well. The other feed that was going into her Hickman line has been reduced. This should have the effect of making Holly actually feel more hungry. She has managed some crisps, sweets and a bit of potato today. Drinking has also improved.

The morning passed with Holly doing some arts and crafts. My friend Lynne came to see us now that Holly is up to having visitors. It was great to see her, and Holly thoroughly enjoyed having someone else around. (She particularly liked listening to us having a gossip!) Thank you Lynne xx

In the afternoon Holly was up for another wander. Again we went all over the hospital and the grounds. I managed to convince her to have a little sit in the gardens but the midges started attacking her head, so she was adamant we moved on, and on, and on! My back has had enough and I am in some discomfort tonight. I don't think that a night in this bed is going to help matters either.

We have had some mixed news about getting out tomorrow. The school have had some confirmed cases of swine flu (as with most places) so the docs are not happy for her to spend the afternoon there with a large number of people. This is fine, she has been so poorly the last couple of weeks that it just isn't worth the risk. However, we have a plan B. Holly is desperate to get home and see Izzy and Harry, so that is what we shall do. Holly will be able to catch up with her friends in the holidays when she is stronger.

Well done to Mum and Sis. Apparently it was an amazing night with a great atmosphere. They completed the course and there were no injuries. Poor Mum had the pleasure of the Little Monsters all day today (again), so rest and recouperation will have to wait until the weekend.

Thanks to everyone for your kind messages, we really appreciate them.

Day 23

2009-07-15T13:06:00.000-07:00

Holly had another good night.

She has been feeling good all day (although a bit queasy). She has only been sick once but has managed to keep her tube down. She has managed a few crisps, a bit of banana and some sweets.

Her neutrophils are up again so we were allowed out this afternoon. She wanted to explore the hospital (again) and had me taking her all over the place. She seems to have a particularly gruesome need to see the worst places possible and insisted on me taking her up to see all the theatres and also the intensive care units! Quite what she expected to see through the doors I'm not sure. I think she was expecting an episode of ER going on in front of her! I am just waiting for what she wants to see tomorrow (I wouldn't be surprised if the mortuary was mentioned!).

The docs have said that if she continues improving this way we could look at going home late next week. This would be wonderful, a light at the end of a very long tunnel for Holly. Our consultant has also said he is quite happy (as long as things stay the same) for Holly to go to her Leavers Mass on Friday. We are keeping everything crossed that this comes to fruition, Holly truly deserves it.

I just also want to say a huge thanks and good luck to my wonderful Mum and Sister who are running Race for Life tonight in Hollys name. I wish I could be with them running (or walking) for this great cause, I will definitely be there next year. I would truly pay good money to see them!

Day 22

2009-07-14T12:51:00.000-07:00

Another very good night.

Holly felt sick this morning and managed to bring the dreaded tube up. After a pretty painless re-insertion order was restored and she has tolerated her increased feed today. She has managed to eat a little today. some ice cream and a mini cheddar. Also a starburst. Still only a small amount but we are getting there.

Holly had a visitor today. Dad came to see her as she had told him yesterday on MSN that she fancied a trifle! He has brought her some but they haven't been sampled yet. She wanted to go out for a wander again this afternoon but due to her not having had any special stem cell rescue meds (GCSF) for the last 2 days her neutrophils had dropped below 1 and she wasn't allowed out. They have given her GCSF tonight so they will be back up again tomorrow. This is completely normal and usually has to be given every other day, so the fact that she went 2 days without it is good. To say she was not happy was an understatement. She managed to get over it when I got her a magnum (and chocolate buttons). My stroppy little madam certainly came back a bit today (I am secretly very grateful for this).

It should be Hollys last week at school today and, as she is in year 6, she would be leaving to go onto secondary school. I am so sad she has missed so much of this special year in this wonderful school. She has grown up there and become a very special, clever young lady. I am hoping, if all is ok, that she may be able to get out of hospital for a few hours on Friday to go to the Leavers Mass and say goodbye to all her friends and teachers. This is dependant on her blood counts and outside factors such as swine flu etc... Wig has been duly washed and straightened in readiness, I hope she gets a chance to wear it.

Day 21

2009-07-13T12:48:00.000-07:00

Holly had a great night. She has tolerated the feed into her tummy and there has been no sickness.

The doctors came round en masse today and say that she is doing amazingly well for 3 weeks post stem cell transplant. She has felt a bit sick today but hasn't thrown up at all. The nose tube has been in now since yesterday morning and Holly is now doing her own meds. She has found it better to push them into the tube herself because then she can control how quickly they are done. It was a great idea of the nurses to let her do it, and it seems to have helped.

She has had a good day today. She did music therapy this morning. This was on a laptop and she created her own cd. The lady is coming next week with a keyboard so she can add some "live" sounds to her masterpiece. This afternoon she has spent some time with the teacher and done a little bit of schoolwork. Then we decided, as she was off her pumps, to go for a wander. Well I wandered and Holly sat there, enjoying being pushed about! We walked for about an hour and a half, all over the hospital and around the grounds. We even went up to the 10th floor to check out the view. I was knackered. Holly wasn't...

Since we have been back she has been re-attached to her pumps and has done her meds. She is now chatting away on MSN and watching all the soaps. It has been lovely to see her so good today.

Day 20

2009-07-12T13:32:00.001-07:00

Holly is doing well today. Dad stayed with her and reported all was good last night.

Her nose tube was re-inserted and has (so far) stayed in. All her meds have been done and she has a feed going into her tummy too.
When Holly was off her pumps this afternoon she went out and about with Dad and Kirsty. They took her (in a wheelchair, Holly doesn't do "walking" if there is the possibility of being pushed!) around the grounds of the hospital for about an hour. This fresh air has got to be good for her and hopefully she can have much more of it.

I have had another lovely weekend at home, even though today has been shopping (food so not fun!) and loads of washing. That hasn't bothered me though, because the Little Ones have been under my feet and that is wonderful. I am relishing every moment with them, Harry was particularly cuddly tonight after his milk, climbing and slobbering all over me.

I am now back in Addenbrookes, refreshed and ready for a new week. Holly looks good tonight, smiling and chatting. She is tired from her fresh air though and is dropping off as I type. Heres hoping for another week of improvement that brings home closer.

Day 19

2009-07-11T13:10:00.000-07:00

Last night was not very nice. For the third time Holly managed to sick up her nose tube at midnight. We (and the nurses) decided enough was enough and, as no medicines were needed, made the decision to leave the new tube until the morning.

This played on my mind a bit and I have to admit to having a really awful nights sleep. Holly had an ok sleep, slightly disturbed and restless but generally ok.

Holly needed platelets so we had to wait for them to be done before it was ok to do the new NG tube. Once done Holly visibly relaxed and was happy for me to go home. I eventually got back at 1.30pm and have had a lovely afternoon. We took the Little Ones to see the animals at the garden centre and they have played all afternoon.
Holly did text me to let me know that the tube was back out but she wasn't too concerned. A new one will have to go in later for her medicines. She has also managed to get out and about this afternoon and had a little shopping spree in the hospital shops.

She is still doing really well and the tummy is the only problem for her at the moment. The doctor told her this morning that she was doing so well, even if she didn't feel it. He has assured her that the tummy issue will get better, it will just be a slow process.

She has managed to have her new tube and her medicines tonight. This was short lived however. The tube lasted half an hour. At least her meds are in, this looks like becoming the pattern for the next few days!

I am savouring being at home, and am typing this in my lovely huge bed. I have certainly become much more appreciative of all the things I took for granted before. Holly said earlier that she just wanted to come home, I can completely agree. She will be here soon.

Day 18

2009-07-10T14:36:00.000-07:00

Holly had a good night, just waking to ask me to re-tape her nose tube as it was a bit loose.

She is now off her morphine and is only on the general meds which are normal during the stem cell process. She has been awake all day and managed some more sips of drink again too. Still not eating but has tolerated a special feed into her tummy which should build the tummy up so it is less sensitive.

Holly decided she wanted to do some baking and, as nothing is too much trouble here, all ingredients and utensils were duly brought. She had great fun making the cakes and decorating them. The best thing of all was that she came out of her room (for the first time since she was in isolation 3wks ago) and distributed them to her friends and the nurses. We also went into the garden for some much needed fresh air, until Holly informed me that she was bored and wanted to go back and watch Come Dine With Me!

This evening has been really tough for me. Holly was sick and had to have a new nose tube down. The nurses had some probs testing it was in the right place, so after much poking and prodding (and waking Holly up) it was declared ok. 3 minutes later she was sick and up it came again! By this time it was gone 9pm and another tube was needed. Holly was so upset and frustrated that this keeps happening, and I just feel so helpless. I have to admit this tube saga is now getting me down, and I am trying so hard to be positive. I have had a few tears tonight and am feeling overwhelmed. I know that getting home tomorrow will be a huge boost for me and I am counting down the days until I can bring Holly back with me...

Day 17

2009-07-09T13:57:00.000-07:00

Holly had a really good, peaceful night.

She has only been sick twice today so again an improvement. Her tummy is so sensitive still and she has managed to drink a little bit again today. It is such a slow process and it is starting to get to Holly now. She is hungry but struggling to swallow food. Her body needs to adjust after being so long without eating. She just wants it to all be normal now.

She managed to cough up a nose tube today so they re-inserted it this morning. Unfortunately she managed to cough that one up tonight (before it had been used) so she has had to have another one this evening. Two nose tubes in one day is not pleasant but Holly takes it all in her stride (just getting cross with herself for it coming out!)

Her voice has now returned as her mouth has healed. She isn't as vocal as normal, but makes her opinions known when she feels like it.

It has been another good day all in all and for that I am thankful.

Day 16

2009-07-08T13:11:00.000-07:00

Holly had a really good night and seemed to wake really refreshed.

The first thing she said to me was that she was thirsty. This was music to my ears as she hasn't eaten or drunk anything for weeks. She has managed sips throughout the day and even had a wotsit! Only a small thing but a huge milestone for her both physically and mentally.

She has been awake all day, another first for weeks. This is probably due to the fact she is feeling better and her morphine is at a very low level now. The sickness is still hanging around but it is a bit better today.

Kirsty came up to visit armed with a huge balloon and some presents. Holly's room looks amazing and she really deserves it.

I went into Cambridge for a wander. I walked for miles (getting a little lost in the process). My feet are killing me as I had totally inappropriate footwear on, this will be no surprise to anyone that knows me! It was a lovely afternoon and I certainly feel I know Cambridge (and its shops) a bit better now!

Holly's improvement has made this a good day.

Day 15

2009-07-07T12:39:00.000-07:00

I do feel as though every post is the same at the moment but I want to make sure I update every day (during this stem cell process) so we can look back on this in the future. I want Holly to be able to read back and see how brave she has been and how well she has coped throughout these last couple of weeks.

The sickness is still hanging around but in between she has been really good. She is still not managing to eat or drink but this is going to be a slow process, and healing the tummy is going to take a while.

I want to say a huge thank you to Jane & co for the wonderful present for Holly. She feels very important when she gets post delivered, and I am very grateful for the smile it brings to her face.

Day 14

2009-07-06T13:41:00.000-07:00

Holly had quite a good night. Now that her morphine has been reduced by quite a bit the night time shouts have diminished. She has always been one for shouting in her sleep so I don't think they will go away completely.

Monday is quite daunting. Usual doctors rounds consist of 2 doctors. On Mondays there are a few doctors and there were 3 consultants. That many people in our small room was quite a sight. Our consultant was very pleased with Holly and even went as far as to say that her progress was "impressive". More good news later this afternoon, Hollys neutrophils were 1.91, she is officially out of isolation! Not that she is going anywhere, she is still sleeping a lot and has no intention of being anywhere other than bed!

Unfortunately she managed to sick up her nose tube this evening but had another put in with no bother. She is getting quite used to it now.

Holly decided she wanted to watch Teenagers Fighting Cancer on C4 tonight. She does seem to have a gruesome fascination to watch anything about cancer. I suppose it is understandable, I just worry she will find it all too upsetting. She was fine. I was not. It was shown from the perspectives of the children and also the parents and it was all a bit close to home.

I decided to get away from it all and escape to the parents room for some dinner and something light and airy on tv. However there was another very upset parent in there and we talked for quite a while. I hope I helped but it has left me feeling quite sad.

Day 13

2009-07-05T14:05:00.000-07:00

Holly had an ok night. She was sick a couple of times but this is only to be expected with all the mucous and her sensitive tummy.

The docs were once again pleased with Holly's progress. They do a quick examination every day and all is going well.

Holly had some more platelets today, she seems to be needing these every other day. This is all normal and all her other counts are climbing. Her neutrophils have now jumped to 0.91 which is really good. They have been giving her GCSF (which support the blood counts), so this is definitely doing its job.

I am now back here with Holly. I have had a lovely weekend with the Little Ones and Ben, and had great fun at Little Cousins birthday party. It was a real family afternoon, it was a shame that Holly wasn't able to be there. She was very much missed. I love being able to get home at the weekend and am very grateful that Holly is well enough for me to be able to go. However, it is getting harder and harder to say goodbye to the Little Ones. I kiss them goodnight knowing I won't see them for another week and it breaks my heart. I am just glad that they are being looked after so well by Mum and Ben that they don't seem to miss me!

Day 12

2009-07-04T13:30:00.000-07:00

Holly had a good night. She is certainly sleeping well and I don't recall any shouting either.

I have been able to get home today so haven't been with Holly since this morning. According to my updates she is fine, and the docs are still very pleased with her progress.

It has been great being at home today and I have had fun with the little ones. We took them to the park and they have had so much fun. Izzy was most put out when she realised I hadn't brought Holly home. She has made me promise to bring her home with me soon.

It feels very strange to be away from the hospital and I miss Holly very much. What I don't miss is the constant beep of the pumps and the very small bed!

Day 11

2009-07-03T12:56:00.000-07:00

Not much to post today. It has been a very quiet day which Holly has pretty much slept through.

The docs are very pleased and she is progressing well. Her neutrophils have jumped up to 0.26 which is great. She is still having some pain in her mouth but it comes in waves and passes very quickly. The morphine has been reduced again and the night time shouting seems to be better, or maybe I was so tired I slept through it?

I am hoping to get home tomorrow and Sunday while dad comes up to stay with Holly.

Day 10

2009-07-02T13:10:00.000-07:00

Me again.

Another ok night, a few shouts but nothing major.

Holly has slept on and off all morning, again sleeping through the doctors rounds. They are getting quite used to her grunts when they ask her anything. They were pleased again with her and said she is doing great. Her mouth is slowing improving and I am hoping she may be able to try a drink tomorrow.

She has been very bright this afternoon, watching tv and on the computer. She even picked a couple of things out on the Next website. I think she senses I am in a weak position and is making the most of it. She knows she is well set for maximum indulgence, and I think she deserves it!

She is currently very happily watching Katie and Peter on the tv.

Its been a good day but being on C2 inevitably brings sad news as well. One set of parents and their son have left today with very bad news. It is a sad reminder of how horrible cancer is and my heart goes out to them. It is the very news we all dread being told here.

However, (I feel very selfish saying this), I am going to savour the fact that Holly is getting better every day at the moment and pray that it continues.

Day 9

2009-07-01T12:46:00.000-07:00

Another shouty night, but otherwise very settled and Holly slept until after 10am. She even practically slept through the docs doing their rounds. She did manage to mumble and do a bit of sign language when they asked her anything, but made it quite clear that she was going to stay asleep! I think she knew that when she woke up properly the nose tube was going to be re-done!

She has had another day of improvement and the docs are pleased with her progress. They have reduced her morphine dose today as she is doing so well. Her mouth was covered by a hugh blister this morning. She couldn't help playing with it and, all of a sudden, squealed and showed me it. It was half hanging off! I got our nurse, who took one look and got our doc. She looked and told Holly not to pull the rest of it off. Holly then proceeded to close her mouth, smile and then produce the huge blister out of her mouth! It was truly disgusting and the nurse, doc and myself were horrified. Holly just smiled and seemed very proud of it!

She has been reading quite a bit today and watching tv. It has definitely been a better day again. Her neutrophils have now risen to 0.02 which is also good news.

Day 8

2009-06-30T15:07:00.000-07:00

Last night Holly's new morphine side effect became apparent. She is having very vivid dreams which involve her either moaning or shouting out frequently throughout the night. The has caused me to nearly have heart failure each time she does it as I jump up and attempt to soothe her, only to find her sleeping peacefully.

She is again better today, and the docs are pleased with her progress. She has had an unfortunate time with her new nose tube today and has managed to cough it up twice. It hurts more now to put it down as her throat is very sore but she has coped really well with it and been very brave. She did, however, shout at our lovely nurse putting it in that the nurse that did it last week was much quicker! Holly was very apologetic afterwards...

Although she slept through the afternoon she has been awake and even talking a bit this morning and all evening, and I can see my normal Holly is starting to return. Her hair (which had grown back all over as short fuzz) is coming out. She looks like she has a flat mohican as she has rubbed all the hair off the sides from lying down. She has also lost all her eyelashes and some of her eyebrows.

Although all her blood counts are very very low her neutrophil count has gone from 0.00 (which it has been for the last week) to 0.01. Only a small increase but hopefully the start of the upward climb. Now we only have to wait for them to get to 1.00 and she can some out of isolation!

Day 7

2009-06-29T13:14:00.000-07:00

Holly had a better night and looked better to me when I arrived this morning. The sickness is loads better and, although still in a lot of pain, she is brighter.

She was awake for most of the morning but then slept most of the afternoon. There has been nothing particular happening today, just the usual round of medicines and anti-biotics.

Holly had some visitors today. Nana and Nanu came to visit for a while with Dad.

Holly's nose tube (which has become invaluable) came out tonight after a particular strong bout of coughing up mucous so she will need to have it re-inserted tomorrow. Hopefully it will a lot less upsetting than last time as she knows exactly what to expect.

I can definitely see an improvement today so I am hoping that this continues.

Day 6

2009-06-28T13:46:00.000-07:00

Holly had an ok night, much the same as previous nights. Although there isn't a marked improvement in how she is feeling, she isn't any worse. The docs have once again re-iterated that by the end of this week she should be feeling better.

She has had a quiet day but has managed to watch some tv. Her mouth is still very sore so they are trying some new mouthwash medication that should help ease the pain. She must have had fun with Dad and Kirsty today because, once again, I was told my presence wasn't needed tonight and it would be ok if I came back tomorrow. This was fine with me, I am feeling a little tired and could do with a good nights sleep.

We have had a wonderful day today. Julie and Louise had organised a sponsored 80s aerobathon in aid of Holly and the Neuroblastoma Society. Myself and Izzy decided to take part (only for the last hour!) and we had a blast. Harry also enjoyed himself as you can see from the picture. I was very overwhelmed to see so many people taking part. The Neuroblastoma charity needs all the publicity it can get as it gets very little funding. The local paper came down and took photos and Holly is hoping to get her story in print! Izzy proved herself to be naturally talented and co-ordinated...

I am back to Cambridge tomorrow morning feeling refreshed and ready to face the next week. Many thanks for all your kind wishes and messages. They are much appreciated.

Day 5

2009-06-27T13:41:00.000-07:00

Holly had an ok night. She was sick once a few times and also quite restless.

The doc came round this morning and she told Holly that, although she was feeling rubbish, she promised that she would be feeling better very soon. I could tell Holly didn't believe her!

She told me she didn't want me to go home but, for the sake of the both of us, I needed to. I really needed to see Ben and the Little Monsters. We have had a lovely afternoon. It was Little Cousins Gracies birthday so we spent the afternoon with them playing in the garden. I had a wonderful phone call while there. Holly had instructed Dad to call me to let me know she was "fine". She had been up and had a bath and was currently reading some magazines. I was so happy to hear this. She hasn't moved (apart from the toilet) from her bed for the last couple of days, so this felt like a huge breakthrough.

She was sleeping when I called later and didn't need me back. Therefore we have had a lovely dinner and a sneaky few glasses of wine. Much appreciated...

Day 4

2009-06-26T14:49:00.000-07:00

Holly has been quite restless. She doesn't seem to be able to get into that deep sleep to have quality rest.

Her temperature is still up a bit so the docs decided to do a CT scan to check to see if there is any infection in her chest. This was clear so we are still in the dark as to where the infection is but this is also "quite normal". Although it is reassuring to know what Holly is going through is normal it doesn't make it any easier. The docs have added another antibiotic to the mix to try and clear the infection. Her heart rate has also been up today but again this is normal when fighting off infection and they will just keep an eye on it.

She has been very sick again today but this has eased off throughout the afternoon.

I really hope that things start to improve soon as I feel all I am doing is posting how awful things are. I promise that I will try and have some cheerier posts asap! On a brighter note I am hoping to get back home tomorrow for the weekend again, all being well.

Day 3

2009-06-25T12:19:00.000-07:00

Last night was pretty awful. Holly was sick lots. I had lots of strategically placed sick bowls around both beds so I was pretty confident I could lay my hands on them in the dark and with very little notice! She was quite comfortable after each time though, because she was asleep within seconds of being sick. I, however, found myself wide awake and reading at 4.30am.

This morning carried on in the same way. The docs upped her anti-sickness meds and this afternoon has been a bit better. The last two bags of stem cells were given today so that is the end of another stage. This should hopefully mean that the nausea should start to ease. I so hope that Holly will now start to feel a little better. She is very very quiet and that is not Holly. She is feeling totally fed up and I don't blame her.

She has just fell asleep now and I am hoping she gets to have a peaceful night (me too!).

Day 2

2009-06-24T12:49:00.000-07:00

Holly had another comfortable night.

She is still feeling and being sick so is very quiet and subdued at the moment. She had platelets this morning and then it was time for her nose tube to be inserted. She was a bit upset at the beginning as it is quite unpleasant. The nurses just insert the tube into her nose and thread it down her throat and into her stomach. It is over very quickly and once Holly realised that, she let them do it. I cuddled her as they did it and it wasn't as traumatic as I thought it would be. This is possibly due to the efficiency and kindness of the wonderful nurses. I had debated leaving the room as they did it but I am very glad that I was there to hold her hand.

Holly's day got considerably brighter this afternoon. We had some "celebrity" visiters to the ward. Sam and Mark (CBBC presenters and former Pop Idol finalists) came to see Holly and brought a huge smile to her face. They stayed and chatted for a while and gave her some signed photos. It was great to see her so happy with them. Baring in mind she hadn't spoken all day (I am getting proficient at sign language as her throat is sore), she managed to say "they were cute!". I had to agree.

Two bags of stem cells today and two more tomorrow. Then hopefully the sickness will start to ease and the recovery process can begin.

Dad and Kirsty came to visit tonight so I took the opportunity to go for a long walk around the hospital grounds. It was a good way to blow off the cobwebs and have a break.

Day 1

2009-06-23T13:47:00.000-07:00

After a very busy day Holly was exhausted. She slept and snored from about 7.30pm right through the night. She even missed Eastenders!

Her mouth looks a lot better today although she is still struggling with swallowing. She is managing to take some medicine but not others. After a discussion with the doctors it has been decided that the easiest thing may be to put a nose tube in tomorrow for taking medicine. This will not be a pleasant procedure but it will make things more comfortable for Holly while she is feeling rubbish.

I had a lovely coffee with my c2 friend Chris and her gorgeous little boy Gabe who were visiting the day unit. Gabe has also been through this process (with flying colours) and is an inspiration. I must say a huge thank you for Hollys presents (and thanks Aunty Toe too), and Gabes wonderful picture has pride of place on Hollys wall now. She was delighted but sad she couldn't see them both as she is in isolation. Its very theraputic to be able to talk to someone who really understands and I returned feeling very positive and refreshed.

The second lot of stem cells were transplanted today and all went smoothly. The taste and smell are still pretty overwhelming and it has made Holly sick a few times. She is still being incredibly brave and keeps apologising when she is sick! Considering what she is going through she is doing really well and I am so proud of her.

I would like to send all my thanks and love to Julie and all the girls for Sunday. They are doing a sponsored aerobathon to raise money for Holly and the Neuroblastoma Society. Good luck girls, we will be with you in spirit.

Day Zero

2009-06-22T12:46:00.000-07:00

Well it was back to my home for the week this morning. I would love to say Holly was delighted to see me but she barely raised an eye when I arrived.

She had a comfortable night but has now got mucositis. This is an infection in the mouth and is a common side effect of chemo. It is very painful so therefore taking medicine is proving to be somewhat of a challenge. We have managed to take the most important medicines, but the rest have been relegated to the bin! The docs are ok with this and hopefully her mouth will improve in the next few days. If not the other option would be a nose tube to put the medicines through.

The stem cell transplant started today. Holly was very underwhelmed by the whole thing but I found it fascinating. She had 3 bags today and will have more on Tues / Weds and Thurs. This is due to the fact they managed to get quite a lot of cells and they are restricted to how much they can put back in per day due to the preservatives used. The bags are removed from the deep freeze container and then very quickly defrosted in a bath (shown in the photo). They then have to be put into her straight away and it takes 15mins. Holly had to be very closely monitored throughout and after the transplant. She was fine and pretty much dozed throughout it.

I was warned prior to the transplant that I would notice a strong smell of sweetcorn due to the preservatives. OMG it is overwhelming. Everything Holly does smells of sweetcorn, from her wee to her breath! This can last for a week, or maybe longer. I think it is safe to say that sweetcorn is very definitely off the menu for the forseeable future.

Even though she is very uncomfortable, everything that is happening is very common. We have been very lucky before this that she has had very little side effects of chemo. She is still being very brave and takes everything in her stride. It is difficult to see her so quiet and subdued. Never have I wished more for a bit of backchat and stroppiness!

Holly would like to say a huge thank you to Jane, Kev and their lovely kids for her present. Her eyes lit up at the huge box full of balloons, they were amazing. They made her smile so a big thank you from me too. The docs were also very impressed as they were all standing in the room when they were delivered.