Day 8

Last night Holly's new morphine side effect became apparent. She is having very vivid dreams which involve her either moaning or shouting out frequently throughout the night. The has caused me to nearly have heart failure each time she does it as I jump up and attempt to soothe her, only to find her sleeping peacefully.

She is again better today, and the docs are pleased with her progress. She has had an unfortunate time with her new nose tube today and has managed to cough it up twice. It hurts more now to put it down as her throat is very sore but she has coped really well with it and been very brave. She did, however, shout at our lovely nurse putting it in that the nurse that did it last week was much quicker! Holly was very apologetic afterwards...

Although she slept through the afternoon she has been awake and even talking a bit this morning and all evening, and I can see my normal Holly is starting to return. Her hair (which had grown back all over as short fuzz) is coming out. She looks like she has a flat mohican as she has rubbed all the hair off the sides from lying down. She has also lost all her eyelashes and some of her eyebrows.

Although all her blood counts are very very low her neutrophil count has gone from 0.00 (which it has been for the last week) to 0.01. Only a small increase but hopefully the start of the upward climb. Now we only have to wait for them to get to 1.00 and she can some out of isolation!

Day 7

Holly had a better night and looked better to me when I arrived this morning. The sickness is loads better and, although still in a lot of pain, she is brighter.

She was awake for most of the morning but then slept most of the afternoon. There has been nothing particular happening today, just the usual round of medicines and anti-biotics.

Holly had some visitors today. Nana and Nanu came to visit for a while with Dad.

Holly's nose tube (which has become invaluable) came out tonight after a particular strong bout of coughing up mucous so she will need to have it re-inserted tomorrow. Hopefully it will a lot less upsetting than last time as she knows exactly what to expect.

I can definitely see an improvement today so I am hoping that this continues.

Day 6

Holly had an ok night, much the same as previous nights. Although there isn't a marked improvement in how she is feeling, she isn't any worse. The docs have once again re-iterated that by the end of this week she should be feeling better.

She has had a quiet day but has managed to watch some tv. Her mouth is still very sore so they are trying some new mouthwash medication that should help ease the pain. She must have had fun with Dad and Kirsty today because, once again, I was told my presence wasn't needed tonight and it would be ok if I came back tomorrow. This was fine with me, I am feeling a little tired and could do with a good nights sleep.

We have had a wonderful day today. Julie and Louise had organised a sponsored 80s aerobathon in aid of Holly and the Neuroblastoma Society. Myself and Izzy decided to take part (only for the last hour!) and we had a blast. Harry also enjoyed himself as you can see from the picture. I was very overwhelmed to see so many people taking part. The Neuroblastoma charity needs all the publicity it can get as it gets very little funding. The local paper came down and took photos and Holly is hoping to get her story in print! Izzy proved herself to be naturally talented and co-ordinated...

I am back to Cambridge tomorrow morning feeling refreshed and ready to face the next week. Many thanks for all your kind wishes and messages. They are much appreciated.

Day 5

Holly had an ok night. She was sick once a few times and also quite restless.

The doc came round this morning and she told Holly that, although she was feeling rubbish, she promised that she would be feeling better very soon. I could tell Holly didn't believe her!

She told me she didn't want me to go home but, for the sake of the both of us, I needed to. I really needed to see Ben and the Little Monsters. We have had a lovely afternoon. It was Little Cousins Gracies birthday so we spent the afternoon with them playing in the garden. I had a wonderful phone call while there. Holly had instructed Dad to call me to let me know she was "fine". She had been up and had a bath and was currently reading some magazines. I was so happy to hear this. She hasn't moved (apart from the toilet) from her bed for the last couple of days, so this felt like a huge breakthrough.

She was sleeping when I called later and didn't need me back. Therefore we have had a lovely dinner and a sneaky few glasses of wine. Much appreciated...

Day 4

Holly has been quite restless. She doesn't seem to be able to get into that deep sleep to have quality rest.

Her temperature is still up a bit so the docs decided to do a CT scan to check to see if there is any infection in her chest. This was clear so we are still in the dark as to where the infection is but this is also "quite normal". Although it is reassuring to know what Holly is going through is normal it doesn't make it any easier. The docs have added another antibiotic to the mix to try and clear the infection. Her heart rate has also been up today but again this is normal when fighting off infection and they will just keep an eye on it.

She has been very sick again today but this has eased off throughout the afternoon.

I really hope that things start to improve soon as I feel all I am doing is posting how awful things are. I promise that I will try and have some cheerier posts asap! On a brighter note I am hoping to get back home tomorrow for the weekend again, all being well.

Day 3

Last night was pretty awful. Holly was sick lots. I had lots of strategically placed sick bowls around both beds so I was pretty confident I could lay my hands on them in the dark and with very little notice! She was quite comfortable after each time though, because she was asleep within seconds of being sick. I, however, found myself wide awake and reading at 4.30am.

This morning carried on in the same way. The docs upped her anti-sickness meds and this afternoon has been a bit better. The last two bags of stem cells were given today so that is the end of another stage. This should hopefully mean that the nausea should start to ease. I so hope that Holly will now start to feel a little better. She is very very quiet and that is not Holly. She is feeling totally fed up and I don't blame her.

She has just fell asleep now and I am hoping she gets to have a peaceful night (me too!).

Day 2

Holly had another comfortable night.

She is still feeling and being sick so is very quiet and subdued at the moment. She had platelets this morning and then it was time for her nose tube to be inserted. She was a bit upset at the beginning as it is quite unpleasant. The nurses just insert the tube into her nose and thread it down her throat and into her stomach. It is over very quickly and once Holly realised that, she let them do it. I cuddled her as they did it and it wasn't as traumatic as I thought it would be. This is possibly due to the efficiency and kindness of the wonderful nurses. I had debated leaving the room as they did it but I am very glad that I was there to hold her hand.

Holly's day got considerably brighter this afternoon. We had some "celebrity" visiters to the ward. Sam and Mark (CBBC presenters and former Pop Idol finalists) came to see Holly and brought a huge smile to her face. They stayed and chatted for a while and gave her some signed photos. It was great to see her so happy with them. Baring in mind she hadn't spoken all day (I am getting proficient at sign language as her throat is sore), she managed to say "they were cute!". I had to agree.

Two bags of stem cells today and two more tomorrow. Then hopefully the sickness will start to ease and the recovery process can begin.

Dad and Kirsty came to visit tonight so I took the opportunity to go for a long walk around the hospital grounds. It was a good way to blow off the cobwebs and have a break.

Day 1

After a very busy day Holly was exhausted. She slept and snored from about 7.30pm right through the night. She even missed Eastenders!

Her mouth looks a lot better today although she is still struggling with swallowing. She is managing to take some medicine but not others. After a discussion with the doctors it has been decided that the easiest thing may be to put a nose tube in tomorrow for taking medicine. This will not be a pleasant procedure but it will make things more comfortable for Holly while she is feeling rubbish.

I had a lovely coffee with my c2 friend Chris and her gorgeous little boy Gabe who were visiting the day unit. Gabe has also been through this process (with flying colours) and is an inspiration. I must say a huge thank you for Hollys presents (and thanks Aunty Toe too), and Gabes wonderful picture has pride of place on Hollys wall now. She was delighted but sad she couldn't see them both as she is in isolation. Its very theraputic to be able to talk to someone who really understands and I returned feeling very positive and refreshed.

The second lot of stem cells were transplanted today and all went smoothly. The taste and smell are still pretty overwhelming and it has made Holly sick a few times. She is still being incredibly brave and keeps apologising when she is sick! Considering what she is going through she is doing really well and I am so proud of her.

I would like to send all my thanks and love to Julie and all the girls for Sunday. They are doing a sponsored aerobathon to raise money for Holly and the Neuroblastoma Society. Good luck girls, we will be with you in spirit.

Day Zero

Well it was back to my home for the week this morning. I would love to say Holly was delighted to see me but she barely raised an eye when I arrived.

She had a comfortable night but has now got mucositis. This is an infection in the mouth and is a common side effect of chemo. It is very painful so therefore taking medicine is proving to be somewhat of a challenge. We have managed to take the most important medicines, but the rest have been relegated to the bin! The docs are ok with this and hopefully her mouth will improve in the next few days. If not the other option would be a nose tube to put the medicines through.

The stem cell transplant started today. Holly was very underwhelmed by the whole thing but I found it fascinating. She had 3 bags today and will have more on Tues / Weds and Thurs. This is due to the fact they managed to get quite a lot of cells and they are restricted to how much they can put back in per day due to the preservatives used. The bags are removed from the deep freeze container and then very quickly defrosted in a bath (shown in the photo). They then have to be put into her straight away and it takes 15mins. Holly had to be very closely monitored throughout and after the transplant. She was fine and pretty much dozed throughout it.

I was warned prior to the transplant that I would notice a strong smell of sweetcorn due to the preservatives. OMG it is overwhelming. Everything Holly does smells of sweetcorn, from her wee to her breath! This can last for a week, or maybe longer. I think it is safe to say that sweetcorn is very definitely off the menu for the forseeable future.

Even though she is very uncomfortable, everything that is happening is very common. We have been very lucky before this that she has had very little side effects of chemo. She is still being very brave and takes everything in her stride. It is difficult to see her so quiet and subdued. Never have I wished more for a bit of backchat and stroppiness!

Holly would like to say a huge thank you to Jane, Kev and their lovely kids for her present. Her eyes lit up at the huge box full of balloons, they were amazing. They made her smile so a big thank you from me too. The docs were also very impressed as they were all standing in the room when they were delivered.

Day Minus 1

It feels really strange to be posting from home.

Holly is still doing well. Her temperature has been fine and the only issue has been trying to convince her to take her medicines. Dad and Kirsty have done a great job, so much so that I have been advised today that I wasn't needed tonight either! I didn't know whether to feel insulted or pleased. I am actually incredibly pleased that she has overcome the need for me to be with her every night. This was the first time she has let anyone else stay since her diagnosis and I feel it is a huge step forward. Her levels have now dropped and she is neutropenic. She is officially in isolation and is not allowed out of her room until they have recovered.

She is still quite sleepy but has been awake more today. She is not in pain and says she feels better. She doesn't want to eat but that is only to be expected. Her throat is raw and she has been through so much this week. She is still being incredibly brave and I am amazed how strong she is.

I have had a lovely 2 days at home. Despite always thinking of Holly (and even dreaming of hospitals), I have needed this time away. The Little Monsters have made me laugh, Ben has been my rock and I am truly grateful for them all.

I will not be sorry to say goodbye to this week. It has been a tough one. Tomorrow is Holly's stem cell transplant, I am a little apprehensive and also a little excited. Please remember Holly in your thoughts and hope that these lovely new cells go and do their job.

I have to admit to being a very poor daughter this week. Happy Fathers Day Dad. I am sorry I didn't send you a card (I have phoned and grovelled). I know you are very busy looking after the "estate" in Ireland (haha). Looking forward to seeing you soon. You are the best. xxx

Day Minus 2

Well the drugs are certainly working.

Last night after her cocktail of anti-sickness and morphine she slept really well. Her temperature decided to spike about midnight so the doc came and had a look at her to see if there was any obvious infection. None found but it is very common after this much chemo so antibiotics were started as a precaution.

She has basically just slept and slept, which is what she needs. Her little body has been through so much this week and I think sleep is the best escape. The sickness has eased right off today and her temperature has been under control so it looks like the sleep is really helping.

Dad and Kirsty came up to stay this morning which has enabled me to come home for the weekend. I did feel guilty (what with being a mum and a Catholic guilt is a permanent fixture!) for leaving her, but I needed to spend some time with the Little Monsters and Ben. I know she is fine and she is probably glad to get a break from me fussing. As long as all is ok I will go back tomorrow evening.

Day Minus 3

Holly had a bad night last night. The constant vomiting left her in a lot of pain in her throat and sinuses. She eventually slept from around midnight til 7am when the sickness started again.

I have to admit seeing her so rough has knocked me. I knew it was going to be hard but nothing has prepared me for this.

When the docs came round I explained how much pain she was in when actually being sick. Mike decided to go straight for the hard stuff and prescibed her some morphine. I couldn't believe the difference! Within 5 minutes she had a silly smile on her face and was saying she was ok. It was the first smile I have seen for days (albeit drug induced) and it was very welcome. She has been in a lot better spirits this afternoon and, although she has been sick a few times, it doesn't hurt. She even demanded a diet coke (I miss her being bossy and demanding). Her chemo is nearly finished now and her tpn feeding is due to start. This will take the pressure off worrying about her not eating. The sickness has eased this afternoon so today has definitely been a better day.

Day Minus 4

Today has truly been a horrible day.

After a good night, which was only interrupted by the constant beeping of her pumps, Holly woke feeling sick again.
This is how she has felt all day and I have lost count of how many times she has actually been sick. She has dozed a bit but has been unable to get into a deep enough sleep to stop the sickness. As a result her throat is now quite raw and she is very miserable. The docs have prescribed another anti-sickness med and we will try that later. A good rest is probably the best thing at the moment and she has just now fell asleep. She has been unable to eat anything today so the docs will decide tomorrow whether to give her a bit of help in that department, and give a nutrient feed through her hickman line evernight.

At least the end of this chemo is in sight, it should be finished by around 9pm tomorrow night and she will have the weekend free before the stem cell transplant on Monday.

Day Minus 5

Today has been an improvement on yesterday, thank god.

Holly slept really well and woke feeling just slightly sick. After her anti-sickness meds kicked in she felt fine and proceeded to have weetabix for breakfast, followed by a bacon sandwich,, followed by 2 cakes followed by scrambled eggs on toast!!!
After all this food she slept most of the afternoon on a very full tummy. It was fantastic to see her eating so well and feeling better.

After her sleep she felt rubbish. She has felt sick throughout the evening and has not improved much since. It is a good job she ate so much earlier as her appetite has now disappeared though she is still drinking. I think we will all be glad when this chemo is over.

On a happier note the Little Monsters are doing great without me (thanks to my wonderful mum) and Ben is also coping! Apparently the house is "calm and quiet", I'm not sure what he was implying by that....

Day Minus 6

Today has been tough.

The effects of the large amounts of chemo are taking their toll on Holly. She had a good night but woke feeling grotty and was sick too many times to count. The docs added to her anti sickness meds to try and ease it but it took a while to work. This afternoon has been better. The meds make Holly drowsy so she slept much of the afternoon. She hasn't eaten or drunk anything but they are putting plenty of fluids through her so this isn't a problem. She rallied this evening and had a bath whilst watching Eastenders (the room has an ensuite and the bed telly swivels round). She was quite chatty and even managed some water.

I have found today really hard, watching her feeling so terrible, knowing we have to poison her body in order to make it better. It hasn't helped that the docs have warned me it may get worse, and she is unlikely to feel better for at least 2 weeks. I just keep telling myself that how she is feeling is "normal", and make sure we have plenty of sick bowls at hand!

Day Minus 7

Well the chemo has started and the countdown has begun to Hollys stem cell transplant next week. Holly had a good night, albeit slightly marred by a very snory lady in the next bed (it was just like being at home). The morning was spent at school doing maths and english. Even though she pretends not to like it I think Holly actually enjoys it now. It helps the time pass and keeps her brain active.

Holly has had 3 hours of hydration and then the chemo started. It will run throughout the week in various combinations. We have a record 4 pumps running at once due to all the different drugs. She felt a bit sick for an hour this evening but her new anti-sickness meds seem to be working and she is currently feeling ok.

We are now in our new home for the transplant. It is a special room which has purified air, extra care is needed to keep out bugs when Hollys levels drop. Holly has decorated it and it now looks like a tatty teddy/fairy grotto. The photos of home are lovely but make me very homesick. I am missing the Little Ones and Ben very much but I have to be here and it will all be worth it in the long run.

Off to Addenbrookes.....

Well, we are here, residents of C2 for the next 4-6 weeks. Holly has packed, packed and packed some more, my car has limped up the a10 due to excess weight, and the nurses have laughed at the amount of stuff we have!

Nothing much to report today, just some new medicine to protect Holly's liver and a quick check over to ensure all is ok to go ahead with the chemo tomorrow. We are not in our isolation room as yet but will probably move into it during the week. Holly will have to wait until then to decorate. I will update daily as we go through this process, fingers crossed it will all go well and Holly doesn't feel too poorly.

GFR

The harvesting of the stem cells went well yesterday and we finally got to leave late afternoon. Just before we left we got the good news from the lab that they got well over the amount of stem cells needed, this is great and the extra will be put back into Holly at transplant.

It was only a brief respite because Holly was needed back at Addenbrookes today for her GFR (kidney function) test. Chemo can affect the kidneys so this is important to check before we begin the high dose chemo next week. They also wanted to do a chest x-ray to check all was still well. Dad took Holly to enable me to spend some time at home with the Little Ones, it was fab to take them to toddler group, they had so much fun. Izzy was most excited and kept checking that I was definitely coming and didn't have to go to the hospital with Holly.
All went well at Addenbrookes and we should have the results next week.

We are due back on Sunday and this is for the long stay. Holly will have a week of high dose chemo followed by the stem cell transplant. The docs have told us to expect to be in for 4-6 weeks and Holly will probably spend at least 2 weeks of that in isolation. The high dose chemo will basically take away her immune system and the blood counts will start to drop. When they have dropped she has to be kept away from anyone who could put her at risk of infection. We will spend the whole stay in one of the special rooms which have purified air pumped into them. The stem cell transplant will take place after the week of chemo. It is done like a blood transfusion and shouldn't be too intrusive. When her counts start to recover she should be allowed to roam around the ward and the worst should be over. I have no doubt this is going to be tough, she will be quite poorly, but I know she will get through this with the same bravery she has shown throughout.

I am getting concerned that my car is not big enough for our stay. I suggested to Holly that we make her hospital room more "homely", she has already started to pack. There doesn't seem to be much left in her bedroom and there is a suspiciously large number of bags by her bed! This, combined with duvets and pillows, makes me wonder if ward C2 has enough space!

Stem Cell Harvest

Holly was delighted with our 6.30am start! As I have said before she is most definitely not a morning person. It was quite a quiet journey with Holly shrouded in her black hoody and snoozing on and off.

Holly bloods showed that she had produced stem cells so the go ahead was given to begin the harvest. She is attached to a huge machine and is basically bed bound for 4 hours. The machine takes out her blood, spins it round, removes the stem cells and then puts it back in (minus the cells). These are then frozen until ready to go back in a couple of weeks. Although it doesn't hurt it is quite a boring procedure. She was therefore delighted to have the boredom relieved with a visit from her little friend Gabe, his sister Immy and mum, Chris. It was so lovely to see them, Gabe has already been through this procedure and looks amazing. He is a cheeky, happy little boy and truly gives me hope for the future.

The time passed quite quickly and they were happy with Holly. We have to have some more harvested tomorrow so have been admitted onto C2 to guarantee a bed space for tomorrow. As we weren't needed Holly and I decided go out for dinner and have had a lovely girlie evening.
If all goes well tomorrow we should be out in the afternoon.

Bone Marrow Results

I can't believe I forgot to put Holly's results in yesterdays blog. The bone marrow biopsy came back ALL CLEAR!

Getting Started

Holly is still doing really well. I can't believe that we have managed to have the whole month of May at home, I am so grateful that it has been a nearly normal month! You really wouldn't know that anything was wrong with Holly (apart from her hair loss). She was delighted to see Grandad over from Ireland last week and was almost tearful when he had to go home! It was lovely to see him, especially as he came armed with lots of chocolate and wine!

Today was the day that, all being well, Holly would start her GCSF injections to boost up her white blood cells ready for stem cell harvest on Monday, so it was off to Cambridge for a review with the Team.
All was well, Hollys blood counts were good and she was feeling great. Her weight has increased to 42kg (most of which is bacon sandwiches), this is even heavier than when first diagnosed and fantastic news as she is likely to lose some weight during the stem cell transplant process. Boo was very pleased with her and gave the go ahead to start with the injections. We saw lots of old faces at the Day Unit and it was nice to catch up on all the news. There is a certain solidarity that comes from being parents of Ward C2, it can be heartbreaking but it can also be very inspiring.

Holly was a little apprehensive about me doing her injection as it is a double dose for 5 days and can sting, but I did it and all was fine. Now we have got the first one out of the way I am sure the rest will be ok.

Next step is stem cell harvest on Monday and we have to be at Addenbrookes for 8am so a very early start (not looking forward to this, Holly is not at her best in the morning!). Depending on how many cells they get we may need to stay in for a few days.

Thank you for all your kind wishes as we enter this next step. Please keep thinking of Holly, I have no doubt that she will carry on amazing me with her bravery and strength.