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.
Friday 26 February 2010
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.
Thursday 18 February 2010
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.
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.
Tuesday 16 February 2010
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.
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.
Saturday 13 February 2010
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.
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.
Tuesday 9 February 2010
Hickman Line In
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
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
Saturday 6 February 2010
A Better Few Days
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
Thursday 4 February 2010
Addenbrookes and Platelets
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.
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.
Monday 1 February 2010
My View On The Amazing Holiday
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
Subscribe to:
Posts (Atom)
