A Week Ago...

...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

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

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

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

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

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

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

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....

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

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

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!!!