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...
Wednesday, 10 March 2010
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!!!
Friday, 26 February 2010
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.
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.
Wednesday, 24 February 2010
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.
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.
Sunday, 21 February 2010
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.
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.
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