Holiday Lowdown

Sunday, March 29th, 2009

We have been back from our holiday for over a week and all is well but I have been so busy spring cleaning that I haven’t found the time to update Mia’s Diary!  (Our house is very tidy though :-) )

Our holiday was fantastic, the Old Mill that we stayed in was beautiful, the swimming pool and gardens were perfect and the children and us adults had a really good time.  We visited Wookey Hole Caves which was very interesting and the children enjoyed making paper, playing old slot machines and crazy golf.  We also visited Brean beach and climbed a winding path up the cliffs for a fantastic view of the coast.  Basically it was very busy but also very restful and Mia being well was just the icing on the cake, her favourite bit about the holiday was definately the swimming pool, she really is a brilliant little swimmer despite not being able to go much over the last 6 months.

Since our return Mia has remained well, lots of people have said that they haven’t seen her looking so bright for a long time so the break obviously did her the world of good.  Her hair is also growing back and she has been nicknamed “the family cat” because we just have to keep stroking her!  This week she had her Vincristine (chemo) on Thursday and 5 days of steroids which is almost over and she has coped really well, without to many tantrums.   

I will leave you now with lots of holiday snaps and I promise to write again soon XXXX

Just one night till our holiday…

Sunday, March 15th, 2009

I have been anxious all week !!!  We are going away tomorrow for 4 days to a beautiful house in Somerset, but at the beginningof the week I began to worry that it might never happen.  On Monday Mia’s blood levels had dropped dramatically from last week and her neutrophils were just 1.2, by Thursday they had gone down to 0.7 and if she had continued to drop at that rate we would be expecting a hospital admission with an opportunist infection NOT a nice week away with friends!  So on Thursday when I knew her results I spoke to Mia’s oncology link nurse in Southampton asking her if she could find Dr Jan and ask (beg!) her to either reduce the dose of Mia’s Mercaptopurine (daily chemo) or even stop it all together for a few days so that her neutrophils could recover a little to ensure that we managed to get away!  It was a big ask but the doctors agreed that it was a very reasonable request and Mia stopped her Mercaptopurine on Thursday, I will take her bloods again in the morning (Mon) and the community nurses Will collect them and get them processed while we head off to Somerset and they will call me with a plan to restart her chemo either at half or full dose depending on the results.  So after 3 nights of anxiety, hoping that Mia did not develop an infection I just have to get through tonight and then we will get our break!!!  Fingers crossed all the way XXXXXXXXXXXXXX

PS.  Today was a beautiful day and we spent it scootering along the seafront in Ryde, Mia has mastered her scooter and managed about 2 miles on it!  I will add a picture when I return from our little holiday.

Why, Charlie Brown, Why?

Thursday, March 12th, 2009

On Tuesday night I was catching up with our “online friends” and read on Bianca’s mums blog about a Peanuts special produced in 1990 by Charles Schulz to tell the story of a little girl who has Leukaemia.  I followed the links to youtube and spent 20 minutes watching the Charlie Brown cartoon, I loved it!!!  Mia and Harvey watched it as soon as they got up on Wednesday morning and they loved it!!!  Mia has watched it 4 times already including first thing this morning.  It really is a great way of sharing the ups and downs of Leukaemia with young children, but more than that because most of us adults remember watching/reading Peanuts during childhood it will reach out to us too!  I have been on Amazon Uk and have ordered a book of the story and the video for the grand price of £5… Money well spent.

So go and get a drink (coffee,tea,wine,juice whatever), grab the kids, turn up the sound on the computer and enjoy!  It will probably provoke discussion with your children but all the answers to their questions will be in the cartoon… Mia wanted to know why we didn’t get enough snow to go sledging?  Harvey asked if Charlie Brown had cancer too because he only has a tuft of hair?  Please leave a comment to let me know what you thought and especially what your children thought of it… Thank You XX

Why, Charlie Brown, Why? Part 1

Why, Charlie Brown, Why? Part 2

Why, Charlie Brown, Why? Part 3

BIG Pink Hair

Thursday, March 12th, 2009

This morning Mia and Harvey had a great time with BIG Pink Hair (no further words required!)….

Grandad is 60.

Thursday, March 12th, 2009

On Saturday we all travelled to High Wycombe for my Dad’s (Mia’s Grandad) 60th birthday.  Mia and Harvey had some fun running races on the ferry then got to see all their Aunts and Uncles before settling down for a night in a hotel with Nana babysitting, whilst the rest of us went out to dance Salsa! 

 

It was a really nice evening, Dad had a brilliant time dancing all evening, it was really nice to meet some of Dad’s friends and to spend time with my brother and sisters and their partners, we also got to see a few old friends and do some reminiscing.  Dad had a birthday collection for CLIC Sargent and raised over £240, I’d like to say a big thank you to everyone who came and donated XXX 

Also a massive thank you to Mum (Nana) who travelled 40 mins each way to babysit and managed to get 2 very excited children settled to sleep without any problems…. this was the first time that Scott and I have had a night out since August!!!

On Sunday we took Harvey and Mia to the play park on the Rye, which my Mum and Dad took me to when I was little, it’s much better now!  Sam and I enjoyed telling the children the story about me falling in the river Wye when I was about 5 years old, Mia loved the fact that I fell because I was sucking my thumb and looking behind me!

We then had a really nice family lunch before heading home… very tired. 

 

 

 

XXXXXXXX HAPPY BIRTHDAY GRANDAD DON DON XXXXXXXX

Play Parks and Pizza!

Friday, March 6th, 2009

I can’t believe we are already in March, it’s actually really exciting because the Isle of Wight is such a great place to live when the weather is good.  We have already spent a good 10 hours over the last couple of weeks going for walks along the Seafront, stopping at play parks as we go. 

Last Sunday we headed out with Amy, Maisie and Evie at lunch time and didn’t get home till 8pm following a long beach front walk and a visit to Bembridge Bakery where the children made us Pizza’s for tea.

Mia has settled again after her 5 days of steroids and she is on fantastic form today.  We are heading to my Dad’s 60th Salsa Bash tomorrow evening although Mia and Harvey will just be having a sleep in a hotel with my Mum as their babysitter!  I couldn’t have left them behind with anyone on the Island because we never know when Mia might become unwell so they will be staying just 5 mins down the road from the party!!!

We have also booked a midweek break with friends at a beautiful House in Somerset that has an indoor pool whoo!!  It is going to be so nice to get some quality time together and with great friends, I think I am more excited than the kids, although Mia asks every morning if we are going to our “special House” today?

Mia and I went swimming on Tuesday for the first time since Nov/dec last year (to get some practice before our holiday), she did brilliantly, swimming upto5 metres with very little help and with such confidence Bless her.

Nursery is going well for Mia at the moment and we are definitely enjoying a more relaxed pace following the daily changes during the intensification.

Thanks for checking in, I will try not to leave it so long before the next update XXXXX