Only 2 more radiotherapy treatments to go.
Holly is doing really well. She is feeling good and looks great. We saw her consultant up at Addenbrookes today and he is very pleased with the way she has handled the radiotherapy. Her blood counts have remained good and her weight continues to be good. He went through the next stage with us. Holly will have 6 months of maintenance meds. 2 weeks on and 2 weeks off. She will be taking retinoic acid which is a medicine usually used in very severe acne! This is the normal drug they use and her only side effects could be dry lips / skin and thin hair. Compared to all the other things she has been through this is small fry and she isn't phased by any of it. Holly got to see one of her friends, Jess, from C2 today at the day unit. They chat regularly on MSN but haven't seen each other for ages so Holly was really pleased. It also helps time pass a little quicker as you are waiting for appointments.
All being well Holly is back to school on Friday. We will have to go back to Addenbrookes for clinic on a Tuesday for a couple of weeks but she will hopefully be able to go back to school straight after.
Our lovely friend Martina has organised another fundraiser for Holly. We are taking over a local curry restaurant on Sunday and half the proceeds are going towards Holly's holiday fund. This should be fun, it will be lovely to see everyone and enjoy some good food (and a few drinks!). I am taking Izzy with us and am interested to see what her first impressions of curry are!
Totally off topic but my gorgeous little man is now walking at the grand old age of nearly 17months! He is very pleased with himself and he is managing to create even more havoc than I thought possible. He is a great distraction and keeps us all very busy. Any tips on getting him talking now would be appreciated!
Tuesday 29 September 2009
Wednesday 23 September 2009
Half Way Through
Well actually more than half way through radiotherapy now. 8 sessions done, 6 to go. Holly has been doing great. She has been sick twice and a little tired, but most of the time she is feeling really good.
Dad took Holly to her radiotherapy on Thursday and Nana and Nanu took her on Friday. This was great because Holly got to show them round and I got to not have to drive up and down the A10 again. Dad also took Holly yesterday because I have been quite poorly and just couldn't manage it. We have all come down with Holly's bug from last week and are all on antibiotics. Just great.
We would like to wish Nana a very happy big birthday today. She has been fab looking after my little monsters, especially as they have been under the weather and quite hard work!
Dad took Holly to her radiotherapy on Thursday and Nana and Nanu took her on Friday. This was great because Holly got to show them round and I got to not have to drive up and down the A10 again. Dad also took Holly yesterday because I have been quite poorly and just couldn't manage it. We have all come down with Holly's bug from last week and are all on antibiotics. Just great.
We would like to wish Nana a very happy big birthday today. She has been fab looking after my little monsters, especially as they have been under the weather and quite hard work!
Monday 14 September 2009
Rough Weekend Then Radiotherapy Begins
Holly came home from her first week at school with a sore throat on Friday. This then progressed to a temperature and a headache on Saturday morning. Any temp over 38 degrees means a visit to the local hospital so it was off to Lister at 9am.
I wasn't allowed to give her any paracetamol until they had taken bloods, but once she had it her temp came straight back down. As she had a cough they also decided to do a chest x-ray. By this time Holly was feeling fine and I was hopeful that we would be allowed home. All the tests came back clear but we then had to wait to be signed off by the docs so it ended up being 6 hours in hospital! We went home with anti-biotics for her throat and cough.
She was ok on Sunday but her temp was still hovering near the 38 mark so I decided to wait until Monday (when we were due in Addenbrookes) to see the team there if needed.
I am happy to report that she has been loads better today. Her temp has been normal all day and her appetite is returning. She has been much brighter and it has been wonderful to see. It is amazing, a typical cold that most parents wouldn't bat an eyelid at, has me in knots! I even got up at 1am last night to check her temp. It is unfortunate, but even the simplest of infections can be devastating to someone in Holly's position so I am delighted she seems to have seen this one off without too much effort!
Today saw the start of Holly's 14 day stint of radiotherapy. It was so straightforward. It took about 10mins to get her into position but the actual radiotherapy took less than 5 minutes. It will get quicker each time we go as the team and Holly will be used to each other, and know what to expect. Holly had her music playing and, as usual, took it all in her stride. I am so proud of her.
Friday 11 September 2009
A Good, If Hectic, Week
I have to say Holly seems to be absolutely thriving at her new school.
She is becoming very independant and has even started walking (most of the way) home from school. She is enjoying most of her lessons (some are just regarded as "boring!") and has made lots of new friends.
Her uniform has also had a bit of a makeover too. As you can see from her picture on the previous blog she was very tidy and studious looking. When I picked her up the other day her uniform had altered somewhat. The skirt had dramatically shortened to well above her knee, her shirt was hanging loose and she was very pleased with herself! Seeing as most of her peers also look like this I am not too bothered, I have faith that school will put a stop to any overt flouting of rules and I am pleased she is finding a "look" for herself. I did tell her I did exactly the same when I went to school but she just gave me a disdainful look and laughed. I don't think she believes I was ever cool!
It has been a very hectic week. Izzy started pre-school on Thursday and she was a dream. She went straight in and had a wonderful time. This morning, however, was a different matter. After telling me all morning that she wasn't going to go to school she had to be prised from my leg screaming. Although this was horrible I am quite used to it. Holly spent the whole time in pre-school, nursery and reception (3 years!) crying and being prised off me. I had visions of her being a teenager and still crying going to school! Izzy came out today and told me she had a great day so I am hoping she will settle quickly.
After getting the girls out from under my feet Harry is proving to be a bit of a challenge. He is totally adorable but is becoming a very naughty boy. He has very definite ideas of what he wants and certainly makes them known! He is so cute that it is very difficult to tell him off and even when I am being stern he just laughs at me. This is my next challenge so any ideas would be welcome. I am relying on enrolling him into the creche at the gym to instill some discipline. I am sure this is probably not the right thing, but hey, it works for me!
Next week is the start of radiotherapy. After everything Holly has been through I am sure she will sail through this. Even if only for the fact she will be missing 3 weeks of school!
PS - TV is nearly up! Plastering is done, painting has just been finished tonight. TV is going up tomorrow. Ben is very excited.
She is becoming very independant and has even started walking (most of the way) home from school. She is enjoying most of her lessons (some are just regarded as "boring!") and has made lots of new friends.
Her uniform has also had a bit of a makeover too. As you can see from her picture on the previous blog she was very tidy and studious looking. When I picked her up the other day her uniform had altered somewhat. The skirt had dramatically shortened to well above her knee, her shirt was hanging loose and she was very pleased with herself! Seeing as most of her peers also look like this I am not too bothered, I have faith that school will put a stop to any overt flouting of rules and I am pleased she is finding a "look" for herself. I did tell her I did exactly the same when I went to school but she just gave me a disdainful look and laughed. I don't think she believes I was ever cool!
It has been a very hectic week. Izzy started pre-school on Thursday and she was a dream. She went straight in and had a wonderful time. This morning, however, was a different matter. After telling me all morning that she wasn't going to go to school she had to be prised from my leg screaming. Although this was horrible I am quite used to it. Holly spent the whole time in pre-school, nursery and reception (3 years!) crying and being prised off me. I had visions of her being a teenager and still crying going to school! Izzy came out today and told me she had a great day so I am hoping she will settle quickly.
After getting the girls out from under my feet Harry is proving to be a bit of a challenge. He is totally adorable but is becoming a very naughty boy. He has very definite ideas of what he wants and certainly makes them known! He is so cute that it is very difficult to tell him off and even when I am being stern he just laughs at me. This is my next challenge so any ideas would be welcome. I am relying on enrolling him into the creche at the gym to instill some discipline. I am sure this is probably not the right thing, but hey, it works for me!
Next week is the start of radiotherapy. After everything Holly has been through I am sure she will sail through this. Even if only for the fact she will be missing 3 weeks of school!
PS - TV is nearly up! Plastering is done, painting has just been finished tonight. TV is going up tomorrow. Ben is very excited.
Friday 4 September 2009
New School
A day of mixed emotions.
Holly started her new secondary school today.
I must admit to feeling a bit apprehensive about this new step. For 6 months we have lived our life inbetween Addenbrookes and home. Our world has revolved around chemo appointments, tests and blood counts. I have had Holly with me pretty much the whole time. I have cared for her, done her meds, changed her dressings and have been with her all the time. I now have to take a step back and let someone else care for her during the day. I thank God that I am in this position. I am thankful that she is well enough to start school with all her classmates. 6 months ago I doubted that we would get to this point. She is so ready for this, she has missed this normality. She needs this normality.
She has been remarkably calm and collected about the whole thing. It was only a short day but she has worn a uniform for the first time in 6 months and thoroughly enjoyed her day. She got her timetable and met the rest of her clasmates. She has been the same as everyone else. Life feels good today.
Wednesday 2 September 2009
MRI Results
One of the team from Addenbrookes called with Holly's results today.
All great news!
The MRI showed more improvement, this is great because the previous scan had also showed great improvement and meant Holly didn't need to have surgery.
Her MIBG scan (this shows any neuroblastoma cells in the body) was also normal.
I am so relieved to get this phone call out of the way. I know that the team all get together and have a big meeting on a Wednesday to discuss all scans and test results, so I was half expecting a call today. It was such a relief to hear the words that told me all was going well.
It has been a very good day today and I intend to break my not drinking during the week promise, and celebrate with a very large glass of wine.
PS...Ben is also very happy tonight as his new huge tv has been delivered. This tv is not just a tv. In order for him to be allowed it, I, very nicely, insisted it needed to be wall mounted to avoid Harry being crushed. This has resulted in the old fireplace being removed and the chimney breast needing to be replastered. This is happening tomorrow and it then needs to be painted! So his new tv has meant a rather large DIY job! Thanks to some lovely and talented neighbours this has been pretty painless. I am sure Ben has great visions of the children watching Disney films in HD but I fear he will be disappointed when Fireman Sam (in non HD!) is demanded.
All great news!
The MRI showed more improvement, this is great because the previous scan had also showed great improvement and meant Holly didn't need to have surgery.
Her MIBG scan (this shows any neuroblastoma cells in the body) was also normal.
I am so relieved to get this phone call out of the way. I know that the team all get together and have a big meeting on a Wednesday to discuss all scans and test results, so I was half expecting a call today. It was such a relief to hear the words that told me all was going well.
It has been a very good day today and I intend to break my not drinking during the week promise, and celebrate with a very large glass of wine.
PS...Ben is also very happy tonight as his new huge tv has been delivered. This tv is not just a tv. In order for him to be allowed it, I, very nicely, insisted it needed to be wall mounted to avoid Harry being crushed. This has resulted in the old fireplace being removed and the chimney breast needing to be replastered. This is happening tomorrow and it then needs to be painted! So his new tv has meant a rather large DIY job! Thanks to some lovely and talented neighbours this has been pretty painless. I am sure Ben has great visions of the children watching Disney films in HD but I fear he will be disappointed when Fireman Sam (in non HD!) is demanded.
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