It has been really nice not to have to get up at the crack of dawn to get everyone up and ready for school. Really nice until about 9am when they are all driving me mad and I find myself wishing it wasn't the school holidays!
Holly is doing great. We were up in Addenbrookes on Tuesday for her first day of blood tests to see whether the dose of retinoic acid needs to be altered. It was a very long day. The tests are done at 1,2,4 and 6 hours after her meds so we were in from 9 til 4. No big deal, Day Unit is perfectly pleasant and we caught up with a few friends. We also did "lunch". Holly brought her laptop as she couldn't possibly be away from MSN for that long in the holidays.
Holly went to see the new MJ film with Dad and Kirsty yesterday and then met up with Nanna and Nanu for lunch and then shopping. Pretty much a perfect day for Holly!
Not much else to report, life has really settled down into a "normal" routine now, and for this I am immensely grateful.
Next week is the Community Awards night at Hertford. Its going to be a wonderful night and I am really looking forward to it. We have a large group going so I am sure it will be a fun (and sober, hahaha!!!) night.
Friday 30 October 2009
Friday 23 October 2009
An Amazing Phone Call
Just a quick post. Today has been amazing.
Holly had a phone call this evening from her favourite X-Factor contestant, Stacey. She was so lovely to her and had a nice chat, even though Holly had burst into tears when she found out who it was! She is still floating on excitement!
Thank you so much to our wonderful friend Emily (whose daughter Ellen has Neuroblastoma too) for making this possible. You have made Holly's day/month/year (and mine too).
It truly makes you think, although this has been a horrible year, we have made some wonderful, lifelong friends. There have been lots and lots of lows but some wonderful highs. It is amazing that, just a phone call, can make so much difference and be so magical. Thank you.
Holly had a phone call this evening from her favourite X-Factor contestant, Stacey. She was so lovely to her and had a nice chat, even though Holly had burst into tears when she found out who it was! She is still floating on excitement!
Thank you so much to our wonderful friend Emily (whose daughter Ellen has Neuroblastoma too) for making this possible. You have made Holly's day/month/year (and mine too).
It truly makes you think, although this has been a horrible year, we have made some wonderful, lifelong friends. There have been lots and lots of lows but some wonderful highs. It is amazing that, just a phone call, can make so much difference and be so magical. Thank you.
Monday 19 October 2009
Happy Birthday Izzy
This has been a lovely week.
Holly has been healthy, the retinoic acid is going well. She is just starting to get some of the side effects, sore lips and dry skin. She has some vitamin E cream to put on and we are trying various different things for her lips. It probably doesn't help that the weather is getting colder so the heating is on. It also probably doesn't help that she has got very into make up and always has some sort of lip gloss on!
We see Amos again tomorrow but only have to go to our local hospital as he is doing a clinic there.
As the title says it was Izzy's birthday on Saturday. We had a lovely day, Izzy (helped by Holly and Harry) opened all her presents and was over the moon with her new kitchen. They played with it for hours (all of them!). We headed over to Auntie Clares in the afternoon (it was also her birthday but, due to me selfishly having Izzy on the same day, it has been somewhat overshadowed). It was a fun afternoon and I had to drag the kids, kicking and screaming, home.
Sunday was Izzy's party. It was lovely to see everyone and it all seemed to go well. Even the little ones first experience of pass the parcel worked, sort of! Thank you everyone for all the lovely cards and presents. Elmer in particular has been everywhere with Izzy today.
I will end on Holly's new youtube video, as with her other video it will probably make you cry (but this time with laughter!!!). I can't believe what she gets up to in her little brothers bedroom!
http://www.youtube.com/watch?v=OjJLvllGYCI
(for some reason it won't link, just copy and paste)
Wednesday 14 October 2009
A Normal Week
Holly is doing great.
Her blood counts are good and she has been at school every day, apart from clinic day. We were up in Addenbrookes on Tuesday to see Amos. He is delighted at how Holly is doing and everyone has commented on how well she looks. We were given the start of the maintenance meds and sent on our way.
Today has been the first day of the retinoic acid meds. It is going to take a while to get to grips with it (to say the least!). Holly has to have 5 capsules twice a day. Holly doesn't take tablets/capsules! There is a leaflet all about how to open the capsules and get the meds out (very complicated, involving heating the capsules on a spoon, snipping the end off and squeezing the goo out). It took ages as the capsules are tiny and they kept slipping out of my gloved hands and goo was shooting everywhere! I am sure it will become easier the more I do it. Next appointment is Tuesday at Lister as Amos is doing a clinic there.
Izzy and Harry both have nasty coughs and colds (again). They are both on anti-biotics to try and clear it quickly to try and avoid Holly getting it. They are fine though, Izzy is very much looking forward to being 3 on Saturday and her party on Sunday. Heres hoping all are well.
Her blood counts are good and she has been at school every day, apart from clinic day. We were up in Addenbrookes on Tuesday to see Amos. He is delighted at how Holly is doing and everyone has commented on how well she looks. We were given the start of the maintenance meds and sent on our way.
Today has been the first day of the retinoic acid meds. It is going to take a while to get to grips with it (to say the least!). Holly has to have 5 capsules twice a day. Holly doesn't take tablets/capsules! There is a leaflet all about how to open the capsules and get the meds out (very complicated, involving heating the capsules on a spoon, snipping the end off and squeezing the goo out). It took ages as the capsules are tiny and they kept slipping out of my gloved hands and goo was shooting everywhere! I am sure it will become easier the more I do it. Next appointment is Tuesday at Lister as Amos is doing a clinic there.
Izzy and Harry both have nasty coughs and colds (again). They are both on anti-biotics to try and clear it quickly to try and avoid Holly getting it. They are fine though, Izzy is very much looking forward to being 3 on Saturday and her party on Sunday. Heres hoping all are well.
Friday 9 October 2009
Child Of Courage
I had a phone call from out local newspaper today to tell me that Holly has been nominated in their community awards for a "Child of Courage" award.
I saw these awards advertised a while ago and wrote a letter about Holly and everything she has been through. I have to admit to this letter being shamelessly about how proud I am of Holly, and how she has dealt with her treatment. She has also helped others in the same situation on the ward by talking to them and showing them things like her Hickman line and her wig. The paper obviously agreed with me and we will be attending an awards dinner on the 4th November where Holly will find out whether she has won.
Holly has had a good week and (apart from clinic) has managed to be at school all week. I have had a good (if hectic) week and it has been great to have a "normal" mums life. This week has revolved around Hollys school runs, Izzys pre-school runs and Harry's baby groups. He has also enjoyed his first full stay in the gym creche which has allowed me to enjoy getting back into the swing of the gym and classes. Thanks to a particularly intense spinning class I am now quite "saddle sore!".
I am looking forward to a night off tomorrow. Holly is going to Dads and Ben and I are actually going out together! We haven't had a night out for absolutely ages so, thanks to Nanna babysitting, we are going out for a chinese. I am really looking forward to a night out and spending some quality time together (along with a few glasses of wine!)
I saw these awards advertised a while ago and wrote a letter about Holly and everything she has been through. I have to admit to this letter being shamelessly about how proud I am of Holly, and how she has dealt with her treatment. She has also helped others in the same situation on the ward by talking to them and showing them things like her Hickman line and her wig. The paper obviously agreed with me and we will be attending an awards dinner on the 4th November where Holly will find out whether she has won.
Holly has had a good week and (apart from clinic) has managed to be at school all week. I have had a good (if hectic) week and it has been great to have a "normal" mums life. This week has revolved around Hollys school runs, Izzys pre-school runs and Harry's baby groups. He has also enjoyed his first full stay in the gym creche which has allowed me to enjoy getting back into the swing of the gym and classes. Thanks to a particularly intense spinning class I am now quite "saddle sore!".
I am looking forward to a night off tomorrow. Holly is going to Dads and Ben and I are actually going out together! We haven't had a night out for absolutely ages so, thanks to Nanna babysitting, we are going out for a chinese. I am really looking forward to a night out and spending some quality time together (along with a few glasses of wine!)
Tuesday 6 October 2009
Curry and Addenbrookes
Sunday was the curry afternoon organised by out wonderful friend Martina. It was a fab day, the food was fantastic and everyone seemed to be having a great time. Izzy enjoyed her first time in a restaurant (never mind her first time with Indian food) and thoroughly enjoyed trying all the new tastes. Her particular favourites were rice, sausage (smuggled in by nanna) and ketchup! She was also partial to the chocolates being passed around. She followed Holly round and even helped her with the raffle.
Today was clinic day up in Addenbrookes. Amos took one look at Holly and said that she looked much too well and he didn't need to see her! That was great, after an hours drive! Only joking, Holly also needed bloods doing and a few tests so we had to be up there anyway. It seems strange to say this but we actually had a great time at day unit today. We saw lots of friends and it was a real time to catch up. It was particularly great to see Gabe and his mum Chris - www.ourpreciousgabriel.blogspot.com. I haven't seen Chris for so long and although we have texted and kept in touch it was wonderful to see her. For those that don't remember I credit Chris with getting me through Holly's diagnosis in February. The Davies4 are a truly inspirational family and have been great friends to myself and Holly and it was good, after comparing notes, to realise that I am not totally neurotic, just another cancer mum.
I have to admire Holly for trying to delay our departure from day unit (to ensure she got to school later) but into school she went. She had a good afternoon and then walked all the way home. I was sceptical that she would be able to do this (it is quite a long way and it was also raining!) but she arrived home shortly after 4pm. She was tired and sweaty and adamantly announced she was never doing that again! It was very funny to see my independant little lady flopped on the sofa saying she was too exhausted to do anything.
Holly should hopefully now have a full week at school until our next clinic appointment on Tuesday. This is where we will get our supply of maintenance medicine and then start the final phase of treatment.
Looking back is tough, going forward is scary.
Friday 2 October 2009
Back At School
Well as the title says, Holly is back at school having sailed through radiotherapy.
I am so very proud of the way she has handled this stage of her treatment, and the positive way she has dealt with the travelling up to Addenbrookes every day.
She had a little wobble at the thought of going back in today and how she was going to answer the many questions sure to be asked of her. Not many people knew that she has cancer and that she was going to be off for radiotherapy. The teachers left it to Holly to tell people when she was ready. I am pleased to report that all went well today and most people now know the real reason for Holly's absence. She decided to tell them herself and they all took it in their stride (as most kids do). She has had a good day and settled back into the school routine (early start!) with no problems.
Heres to a good weekend, I am off out to a party tomorrow night (and very looking forward to it, it is within stumbling distance home but I have decided to behave myself!) and our curry afternoon is on Sunday. I am hopeful life will now be able to settle into a more "normal" routine and we can be a "normal" family again.
I am so very proud of the way she has handled this stage of her treatment, and the positive way she has dealt with the travelling up to Addenbrookes every day.
She had a little wobble at the thought of going back in today and how she was going to answer the many questions sure to be asked of her. Not many people knew that she has cancer and that she was going to be off for radiotherapy. The teachers left it to Holly to tell people when she was ready. I am pleased to report that all went well today and most people now know the real reason for Holly's absence. She decided to tell them herself and they all took it in their stride (as most kids do). She has had a good day and settled back into the school routine (early start!) with no problems.
Heres to a good weekend, I am off out to a party tomorrow night (and very looking forward to it, it is within stumbling distance home but I have decided to behave myself!) and our curry afternoon is on Sunday. I am hopeful life will now be able to settle into a more "normal" routine and we can be a "normal" family again.
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