A Year On......

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

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

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...

...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!!!

Rollercoaster

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

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

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

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

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

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.