Well, Holly is still doing really well. She is feeling good and eating like a horse! Bacon sandwiches are still the fave but I had a substantial list of "extras" when I went to Tescos! The nurse came out today for bloods and all the levels were fine, they are holding really well and no transfusions are needed.
Today started as a good day and ended as a great day. I had a call from Boo (one of the team at Addenbrookes) with the preliminary results from Hollys MIBG scans last week. These scans involved Holly being injected with a radioactive substance and then scanned over a period of 2 days. The substance is attracted to all the neuroblastoma cells and shows on the scan. They are compared to the same scans taken on first diagnosis. The results all came back "WITHIN NORMAL LIMITS". This is amazing, amazing news. I feel quite overwhelmed that my beautiful little girl seems to be winning this battle at the moment. I know we have a long road left to travel but have allowed myself to feel positive today. I have run a lot at the gym tonight as my emotions were running riot!
Holly is also very happy at this news and is currently attempting to stay awake to watch her new fave program - Surgery Live on Channel 4! She loves this program (it is gruesome) and is particularly interested tonight as it is from Addenbrookes.
Wednesday 27 May 2009
Wednesday 20 May 2009
MRI Results
Thanks to everyone for all your good wishes and prayers - they worked!
Initial MRI results show that Hollys primary tumour has gone! According to the docs there is absolutely NO NEED FOR SURGERY!!!!!!!
This is the most amazing news and shows that the chemo (which had a chance of not working) has done its job. Next stop is stem cell harvest and transplant.
Enough said xxx
Initial MRI results show that Hollys primary tumour has gone! According to the docs there is absolutely NO NEED FOR SURGERY!!!!!!!
This is the most amazing news and shows that the chemo (which had a chance of not working) has done its job. Next stop is stem cell harvest and transplant.
Enough said xxx
Sunday 17 May 2009
A Wonderful Night
Friday was a wonderful day. Holly was really excited about the disco and having fun with all her friends. She was feeling good and we made sure we had a quiet morning to conserve energy for the night ahead.
We had an appointment arranged for us at a local hairdressers and they were anazing. Holly had her nails done to match her outfit (blue with black and silver bits) and all her hair curled. I (encouraged by Holly) had some false eyelashes put on and my hair done. She looked amazing. The false eyelashes were quite disconcerting, Izzy thought I had some kind of insect on my eyes, and I have to say I felt I did look rather like a tranny! I loved my hair and they even insisted on me coming back on Monday to get my colour done, they were so kind.
Friday night was so so so amazing. The hall was packed with our friends and Holly really enjoyed being the centre of attention. She spent all night with her friends, dancing and running around. She only came back to see me when she needed a drink or to tell me off for dancing as I was "soooo embarrassing".
There was an auction for some amazing prizes and also a raffle. I must say a HUGE thank you to Martina who is a human whirlwind. She organised the whole night, from the DJ to all the prizes and auction items. It is impossible to find the words I want to say to her and her wonderful family, they are amazing friends and I thank them from the bottom of my heart (as does Holly).
Holly also got some extra surprises, a Nintendo DSi, 6 tickets to Thorpe Park and, best of all, a promise of a villa in Florida as soon as she is better and able to travel!
Thanks to the wonderful generosity of our friends the night raised a whopping total of £4995!!!!!!!! She really will be able to have the holiday of a lifetime.
Thank you to everyone for a really wonderful, overwhelming night.
Wednesday 13 May 2009
MRI
Early start today (for Holly) as we had to be at Addenbrookes for 10am. She was not impressed with having to get out of bed by 8am and in typical teenage style took quite a lot of encouraging and coaxing to get up and about.
The first test today was a hearing test. This is a routine test for children having chemo as one of the side effects is hearing loss. It was very quick and easy (even though the lady doing the test was obviously more used to dealing with much younger children and spoke to Holly like she was 4!). Holly passed with flying colours, with even better results than her previous test.
It was then MRI time. This can be very daunting as it is very loud and quite claustrophobic. It is Hollys 3rd MRI so she was not too worried. I was informed in no uncertain terms that she didn't need me to touch her face when she was in the tunnel and I could just sit and watch. It takes about an hour in total and she was very quiet. I couldn't believe it when she came out and had actually been asleep! OMG it was so noisy, yet she even had a dream about Eastenders!
Blood results were all good so we don't need to get them checked again until next week. Holly is very excited that nothing is going to interfere with her disco on Friday so she is very busy. Outfits to organise, accessories to match etc etc....
I am so very very proud of how well she has done today. She has showed great maturity in everything she has dealt with, and carries on dealing with. Well done baby.
The first test today was a hearing test. This is a routine test for children having chemo as one of the side effects is hearing loss. It was very quick and easy (even though the lady doing the test was obviously more used to dealing with much younger children and spoke to Holly like she was 4!). Holly passed with flying colours, with even better results than her previous test.
It was then MRI time. This can be very daunting as it is very loud and quite claustrophobic. It is Hollys 3rd MRI so she was not too worried. I was informed in no uncertain terms that she didn't need me to touch her face when she was in the tunnel and I could just sit and watch. It takes about an hour in total and she was very quiet. I couldn't believe it when she came out and had actually been asleep! OMG it was so noisy, yet she even had a dream about Eastenders!
Blood results were all good so we don't need to get them checked again until next week. Holly is very excited that nothing is going to interfere with her disco on Friday so she is very busy. Outfits to organise, accessories to match etc etc....
I am so very very proud of how well she has done today. She has showed great maturity in everything she has dealt with, and carries on dealing with. Well done baby.
Monday 11 May 2009
Calm Before The Tests
Since Hollys blood results were good on Thursday we have had a lovely relaxed weekend with no blood transfusions or nurses visits.
Holly is feeling better everyday and I am pleased to report her appetite is also improving daily, to the point I am struggling to keep up with all her demands!
The Little Monsters went to toddler group with Ben on Saturday (it is called Sat Dads) and I am sure that the nice women that run it are actually sympathetic social worker sorts trying to help the dads who just get their children on a weekend! Ben doesn't seem to mind, they loved it and he got a bacon sandwich (everyones happy).
Me and Holly had a nice chilled morning and we all spent the afternoon in the park.
Holly spent Saturday night at Dad and Kirstys and had a great time. She saw Hannah Montana on Sunday afternoon and apparently it was fab. She was worried I would miss out so she has told me she is quite happy to see it again with me!
She called me at 5pm on Sunday to tell me her insuflon (injection port in her leg where I inject her stem cell rescue into) had come out a bit and "wasn't right". Quite why this would be a problem on a Sunday night was a mystery to Holly, as I explained that the community nurses don't work all hours. The other option is to inject the needle directly into her leg, I was willing to give it a go but, surprisingly, Holly didn't share my optimism. Luckily our lovely neighbour (who is a midwife) was on hand and duly did the deed for me.
The nurse came round for Hollys bloods again today, they are good again and the great news is that her counts are recovering well without any transfusions.
Our next appointment is on Wedsnesday at Addenbrookes for Hollys hearing test (one if the side effects if the chemo can be hearing loss) and her MRI scan. We then have some more scans next week and a bone marrow biopsy when hopefully the Team can then make the decision regarding surgery.
Holly is feeling better everyday and I am pleased to report her appetite is also improving daily, to the point I am struggling to keep up with all her demands!
The Little Monsters went to toddler group with Ben on Saturday (it is called Sat Dads) and I am sure that the nice women that run it are actually sympathetic social worker sorts trying to help the dads who just get their children on a weekend! Ben doesn't seem to mind, they loved it and he got a bacon sandwich (everyones happy).
Me and Holly had a nice chilled morning and we all spent the afternoon in the park.
Holly spent Saturday night at Dad and Kirstys and had a great time. She saw Hannah Montana on Sunday afternoon and apparently it was fab. She was worried I would miss out so she has told me she is quite happy to see it again with me!
She called me at 5pm on Sunday to tell me her insuflon (injection port in her leg where I inject her stem cell rescue into) had come out a bit and "wasn't right". Quite why this would be a problem on a Sunday night was a mystery to Holly, as I explained that the community nurses don't work all hours. The other option is to inject the needle directly into her leg, I was willing to give it a go but, surprisingly, Holly didn't share my optimism. Luckily our lovely neighbour (who is a midwife) was on hand and duly did the deed for me.
The nurse came round for Hollys bloods again today, they are good again and the great news is that her counts are recovering well without any transfusions.
Our next appointment is on Wedsnesday at Addenbrookes for Hollys hearing test (one if the side effects if the chemo can be hearing loss) and her MRI scan. We then have some more scans next week and a bone marrow biopsy when hopefully the Team can then make the decision regarding surgery.
Thursday 7 May 2009
Birthdays, Ikea, School and Chelsea
It was great to leave hospital on Sunday night. Holly was feeling good and we were all able to enjoy Harrys birthday party.
The presents were unwrapped (mostly by Izzy), the food was bought (bbq fare) and what happened? It rained!
In true British style we carried on regardless, it has to be said Ben was not amused. BBQing in the rain was not his idea of fun on a Bank Holiday Monday. Meanwhile the rest of us giggled from the warmth on the living room with a glass of wine. It didn't spoil a lovely day and Harry didn't seem to mind where his dinner came from.
Apart from being sick (in true diva style all over her carpet!) on Monday night Holly had a great day.
The nurse came on Tuesday to do Hollys blood counts as they had been borderline when we left hospital so we were all prepared to have to go in for platelets or a transfusion. However her results were good so anothers days grace. We took advantage of this and Holly decided she had a sudden craving for Ikea meatballs. Thus it was to Ikea we went for the afternoon. She managed to con me out of yet another lamp for her bedroom and some bits and pieces and also managed a full plate of meatballs (she did have to fight Harry though!). It was wonderful to see her enjoying her food so much and great to get out and about.
Wednesday was a quiet morning. Nana took Izzy to playgroup and Harry and I had a peaceful (ish) morning with Holly. We took Harry for his 12mth injections and my little brave soldier didn't even cry, I couldn't believe it. Holly went to Nanas in the afternoon to make pizza and then spent some time with Dad and Kirsty.
Still feeling good on Thursday, a few bruises though which is a sure sign Hollys platelets are dropping. We popped over to Martinas (Hollys friends mum) who has been a total star and has organised a benefit disco on behalf of Holly next Friday. She has worked tirelessly and has arranged some amazing items for the auction, one if which is a signed Chelsea shirt (very kindly donated by Joe Coles dad). Holly posed for somes pictures dressed in the shirt (sorry Grandad who is an avid Arsenal supporter). We are really looking forward to a great night out next Friday and hope everyone can join us.
The nurse came again for bloods (all fine again) and then Holly spent the afternoon at school. Due to the fact she had 2 breakfasts she wasn't hungry. Therefore I had a sheepish phone call from the school secretary to inform me at 2pm that Holly was hungry and could I please bring her a sandwich! Of course, I did. She had a really good day at school and is asking to go again tomorrow. I shall see how enthused she is about that when she gets up in the morning!
The presents were unwrapped (mostly by Izzy), the food was bought (bbq fare) and what happened? It rained!
In true British style we carried on regardless, it has to be said Ben was not amused. BBQing in the rain was not his idea of fun on a Bank Holiday Monday. Meanwhile the rest of us giggled from the warmth on the living room with a glass of wine. It didn't spoil a lovely day and Harry didn't seem to mind where his dinner came from.
Apart from being sick (in true diva style all over her carpet!) on Monday night Holly had a great day.
The nurse came on Tuesday to do Hollys blood counts as they had been borderline when we left hospital so we were all prepared to have to go in for platelets or a transfusion. However her results were good so anothers days grace. We took advantage of this and Holly decided she had a sudden craving for Ikea meatballs. Thus it was to Ikea we went for the afternoon. She managed to con me out of yet another lamp for her bedroom and some bits and pieces and also managed a full plate of meatballs (she did have to fight Harry though!). It was wonderful to see her enjoying her food so much and great to get out and about.
Wednesday was a quiet morning. Nana took Izzy to playgroup and Harry and I had a peaceful (ish) morning with Holly. We took Harry for his 12mth injections and my little brave soldier didn't even cry, I couldn't believe it. Holly went to Nanas in the afternoon to make pizza and then spent some time with Dad and Kirsty.
Still feeling good on Thursday, a few bruises though which is a sure sign Hollys platelets are dropping. We popped over to Martinas (Hollys friends mum) who has been a total star and has organised a benefit disco on behalf of Holly next Friday. She has worked tirelessly and has arranged some amazing items for the auction, one if which is a signed Chelsea shirt (very kindly donated by Joe Coles dad). Holly posed for somes pictures dressed in the shirt (sorry Grandad who is an avid Arsenal supporter). We are really looking forward to a great night out next Friday and hope everyone can join us.
The nurse came again for bloods (all fine again) and then Holly spent the afternoon at school. Due to the fact she had 2 breakfasts she wasn't hungry. Therefore I had a sheepish phone call from the school secretary to inform me at 2pm that Holly was hungry and could I please bring her a sandwich! Of course, I did. She had a really good day at school and is asking to go again tomorrow. I shall see how enthused she is about that when she gets up in the morning!
Sunday 3 May 2009
Saturday 2 May 2009
Round 8
We are back in ward C2 for round 8 of chemo. This is 24hrs of chemo followed by 24hrs of hydration. That, combined with pre-hydration, means the earliest we can get out is Sunday evening.
Holly was good last night. No sickness and a good night sleep (although numerous toilet trips).
Today has been a bit rougher. Holly felt fine this morning and managed a 2 course breakfast. It then went downhill and the sickness kicked in. She has only been sick twice but the constant feeling of nausea has been making her a little grumpy! She did, however, manage to find some energy to do some arts and crafts. The bed is now covered in glitter, as is Holly and the floor! She is even feeling hungry and has sent Dad and Kirsty to the supermarket for more supplies.
The doctors are really pleased with how well Holly is doing and the way she is tolerating all the treatment. Amos (doc) explained that the next step will be to decide whether to do surgery. This will be decided after all her scans which will take place over the next couple of weeks. Her GFR test showed her kidneys are working normally. If she does have surgery then the next step will be very high dose chemo and a stem cell transplant. This is very tough on the body and will require at least 3 weeks in hospital (most of which will be in isolation). If she doesn't have surgery then the stem cell transplant will just be brought forward. It is very strange to know that Holly won't be having any chemo throughout May, her body should have a good chance to recover (and her weight a good chance to build up!).
Whether we get to go home tomorrow depends on Hollys blood results. If she needs platelets then they will be fitted in tomorrow. If she needs blood then they will run into the night, so it will be Monday before we get home. Please keep fingers crossed as it is my gorgeous little Harrys 1st birthday tomorrow and we are having a party for him on Monday. They are coming to visit tomorrow so that should be interesting (if a little noisy).
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