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.
Thursday, 18 March 2010
Wednesday, 17 March 2010
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.
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.
Sunday, 14 March 2010
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.
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.
Wednesday, 10 March 2010
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...
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...
Monday, 8 March 2010
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.
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.
Thursday, 4 March 2010
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.
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.
Monday, 1 March 2010
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!!!
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!!!
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