Back to school has gone really well, Harvey is now in year 4 and hopefully being good :-)   He seems happy and is really enjoying seeing all his friends again after the summer holidays.  Mia is going to nursery 4 mornings a week and has a lovely group of friends that she loves to see, so she is definately happy to be there. 

The one year aniversery of Mia’s treatment was marked by returning to swimming classes which Mia has missed over the past year and the start of ballet classes which she is now more than strong enough to do!!!  It is not that she wasn’t able to do these things over the last year but she would not have managed regular lessons due to hospital visits and stays and also long periods of just not feeling up to it, so it’s great that we started this year off with a few new challenges.

There has been lots of reminising over the last few weeks with many discussions about ” this time last year…”  but it has not been a sad time at all, we are so greatful that Mia has been strong and determined and that we have had really good support for us all to come through the year with lots of very happy memories despite the circumstances.  The experience has been very similar in so many ways to that of having your first baby, the trauma of the diagnosis and the uncertainty that comes with it soon becomes part of the routine of your life and although it is hard at times there are so many positives to be found along the way.  We have had to learn new ways of caring for Mia both physically and emotionally we have had to accept that things can change in the blink of an eye so planning anything is very difficult, and our priorities have alltered dramatically, however now 1 year on it all feels familiar and normal and i feel very proud that we have got through a very tough year and we are all settled with our “new” normal.  Having said that I can’t wait to celebrate the completion of treatment and a proper normal next year

Bestival 2009 was fantastic, beautiful weather, 50,000 people having fun everywhere you turn and great entertainment …. what more could you want?  Mia enjoyed seeing Lily Allen and Mika (so did I) and Scott and Harvey got to see Kraftwerk so everyone was happy.

On the 16th September Mia was 4 !!

The day started early at 6.30 with cries of it’s today, it’s today… Mia was very excited!   Lots of balloons and presents followed before Harvey had to go off to school, Mia had a little time to play before her swimming lesson

and the playdoh proved that it is still popular even when you’re 4.

 Auntie Gemma was staying with us for the week after the Bestival and in the afternoon we set about making a pin the bow on Hello Kitty for Mia’s birthday party on Sunday…

and Mia’s birthday cake to have at teatime.

Mia took ages to blow out all those candles and Harvey was desperate to help out but knew that Mia would tell him off… he was very patient.

Mia is still doing fabulously, since I last wrote there has been another camping trip, swimming, scooting, many more beach days and lots of catch ups with friends and family.  Mia has just finished her 5 days of steroids for this month and it was ok… a few dramas but nothing too bad, she definitely feels weak after he vincristine which she has once a month followed by the 5 days of steroid.  She was complaining of leg pains and was very easily defeated by any physical challenges for a few days, but almost as soon as her steroids stop she picks up again and her feisty determination returns.

I cannot believe the summer is nearly over!!!  Harvey goes back to school on Thursday and lots of Mia’s good friends who have already turned 4 will be going to school this year, Mia doesn’t mind that she is staying at nursery (because she loves it) but she will miss her friends that are going to big school!

We have the Bestival coming up in a couple of weeks which we are all looking forward to and we Will also be celebrating Mia’s first anniversary of her treatment, she is a much stronger little girl than she was this time last year and she has shown such courage and bravery in this last year.  However the most important upcoming date will be Mia’s 4th birthday on September 16th……  I must get organised!!  She didn’t have the best of birthdays last year so is definitely expecting a party!

I will update this post with pictures in the next day or so but meanwhile thanks again for all the support XXXx

HAPPY BIRTHDAY AUNTIE GEMMA XXXXX

GOOD LUCK AT BIG SCHOOL TO JACK, HENRY, EVIE, GEORGE, HARRY, JOSHUA, LOREN, ELLA, BLAKE AND JONTEE xxx 

I have decided to do a bit of a photo diary to fill you all in on our summer so far, Mia as you will see has been on great form, even steroid week has been fairly smooth!  Most importantly we have only had to go to the hospital for planned appointments, no mad high temperature panic visits ;-}

Photo Diary starts with a Visit to Barton Manor with Grandad Don Don at the end of July.

And now for our camping trip (just 5 miles down the road!) with Auntie Sam, Caleb and Jack.  We had a really lovely week, the weather was very changeable but we were so close to the beach (2 mins) that we were able to make the most of all the sunny moments.  The children loved having each other for company, and it is definately something that we will all do again, despite how tiring it was at times.

And as if Camping wasn’t tiring enough we had our Race for Life event in the middle of our holiday!!!

Mum (Nana) and Gary, and Gemma arrived on Saturday and had a BBQ with us at our campsite.  Gemma stayed with us in the tent whilst Mum and Gary had the comfort of my house…. At 10am on Sunday morning we were in the pink and heading into Newport to complete our 5KM run.  The Run was fun, emotional and a little bit tiring but we all completed it together in 41 minutes and I even carried Mia, our inspiration, for the last 1000 meters.  Thank you to everyone who has sponsored us, we were very proud to raise over a thousand pounds between the four of us. 

 We had a really lovely family lunch before heading off in our different directions again, with most of us back to a tent!  Mum was off to France and Gemma had to head back to London but it was a fantastic weekend.  

On 30th July we packed up our tent and headed for home.  Mia had had her Vincristine and started on her steroids and was obviously washed out with all the activities during our holiday so we really did very little other than watch TV for the next few days.  Harvey went to stay with Sam, Dan, Caleb and Jack and did a summer Tennis club with the boys in Hove Park which he loved and we went and picked him up last Wednesday and rolled in a 3 night stay at Grandmas which was really nice and relaxing. 

On our return from Grandma’s we decided that it was time to harvest our crops!  We have had a veggie patch in the garden this year and everything was ready for eating.  Harvey and Mia went from bickering and whinging to having a ball pulling up leeks, spring onions, onions, potatoes and cutting down sweetcorn plants.  Our lunch was homemade leek and potato soup.. Mia’s favourite and for tea we had a BBQ of chicken and vegetable kebabs, sweetcorn and frech couscous salad, YUM.

And finally, big news:

Harvey is 8 years old today …. His presents included lots of money from grandparents and friends, an Xbox, a new bike, some lego and lots of balls..football, rugbyball and basketball.  He’s had a friend over for the day and we have been out for lunch and to Magic Island (softplay). 

Mia’s bloods were good on Monday and she continues on her daily chemotherapy tablet, all being well we are looking forward to another camping trip on the Isle of Wight, this time near Sandown from Monday to Friday next week with Sam, James, Herny and Bella. 

I promise not to leave it so long before the next update, thank you for checking in XXXXXXXXX

Despite her depleting blood count Mia has, as always, had a busy couple of weeks of activity.  She continues to enjoy nursery 3 days a week and we have also fitted in lots of Bike riding, trampolining, scooting and visits to the beach and play parks. 

Last Thursday Jack (cousin) and Auntie Sam visited for the day to make up for us missing Jacks birthday party at the weekend.  They arrived from Hove before Harvey had even left for school which was really exciting.  Mia and Jack really enjoyed spending the day together, it was a beautiful day and Sam and I took them for a long scooter ride down to the beach where we enjoyed lunch before Jack ran ‘Baywatch’ syle into the sea.  Mia stayed on the shore and played on her scooter (and ate extra lunch)! 

It was sad to see them head off for home and Mia was a little teary eyed as she watched them board the Hovercraft, she turned to me and said that “me and Jack were having a really nice time together, I don’t want him to go” sniff sniff… Love you Sammy, Jack and Caleb and Dan (currently enjoying Sardinia then Italy).

Nana and Gary are visiting tomorrow, very excited.  Oh and Mia has a new challenge, if she can go to bed without the oscar winning delay performances every night until Harvey breaks up from school we will buy a swing set including swinging seesaw thing for the garden… watch this space.  XXXX

Scott (Daddy) had his birthday on 7th June and because Mia was still in hospital at the time I completely forgot to write it in her diary… It was an important birthday for Mia (not Scott ) because she had completed her challenge of doing all her Poo’s on the toilet or potty and that of course meant that she would get her pink bike! 

During our day release from St Mary’s the day before Scott’s Birthday Harvey, Mia and I baked a chocolate cake, we had to leave Harvey in charge of decorating because we didn’t have enough time before going back to the Hospital, he did a very good job.  

On Scott’s birthday, Mia and I were allowed out by 11am, we arrived home to find that Harvey had made a banner and Scott had only just got up  (An excellent birthday present)! 

Our friends Amy and Matt, Maisie and Evie visited and bought all of the supplies for homemade burgers which we cooked on the BBQ.  Mia was still having temperatures and was on antibiotics 4 times a day so after a quick birthday tea we had to head back to the hospital for the night.

Mia was discharged on the Tuesday of that week but there was still no opportunity to go and buy her bike because she restarted her chemotherapy on Friday and it was just a very busy time but the following Tuesday we went and we bought !!!!  It is pink, has tassels and has a baby seat that fits on the back… Mia loves it!!!!

We were due to go and see Auntie Sam, Dan, Caleb and Jack this weekend for Jacks birthday party but Mia is having chemotherapy (Cytarabine) daily and is still neutropenic so travelling was not a good idea.  However, the weekend is a beautiful one and we are enjoying the sunny days.

 XXXXXX  HAPPY BIRTHDAY JACK XXXXXX

 We collected Harvey from school and headed straight for a very quiet beach at Springvale where the two of them had a great time running and splashing in the warm shallow water.

We also had our first BBQ of the year in the evening, it was a really good day.

On Wednesday Mia and I enjoyed another afternoon on the beach this time with Sam, Henry and Bella because Harvey had to go to swimming lessons.  It was great for Mia to catch up with Henry and Bella because she hasn’t seen them for a few weeks and she was full of beans running around on the sand and making sand ice creams with Henry.  We headed of to Puckpool for a real ice cream and a quick play at the park before tea aswell, another great day.

Thursday and it was back to nursery for Mia, she was raring to go and had a great morning.  On returning from nursery I took her daily blood sample and administered her IV antibiotics and we were just getting ready for another trip to the beach when Mia sundenly became very grumpy and poorly looking.  A quick temperature check confirmed that she was not well her temp was 38.2 and she was shivering and irritable, so it was straight back to St Marys for us!  It was a particularly woprrying journey because I knew it must be some sort of infection from her central line because she had been fine until I used it and I could sense from the way she was that Mia was becoming very poorly and quickly!  In fact by the time we got to the hospital her temp was 39.5!  So here we are again having IV antibiotics in St Marys and probably looking at another weeks delay on her chemotherapy.  It is Scotts birthday on Sunday so I have everything crossed that the antibiotics work their magic quickly and we are home with him and Harvey soon.  XXXXX

You will have noticed from the pictures that Mia’s beautiful new hair is all gone again, we did expect this and as ever Mia is totally cool about it and she knows that when it comes back this time she shouldn’t lose it again.

Today was a good one despite the early start, Mia has had regular paracetamol as well as her antibiotics and has been happy, especially when Harvey and Scott arrived, we sat out in the little outdoor play area and enjoyed the sunshine and scooters!  Mia is sleeping soundly and I am going to join her…. XXXXXXX

Mia is doing very well and we have managed to avoid any infections so far during this intensification so I am feeling very positive about that.  The 2nd week of her steroids was a struggle, not particularly due to mood because Mia was a bit more somber and stoic than stroppy this time but her sleep pattern is just so irratic!  She has also been incredibly weak again and has not been attending nursery or wanting to go out at all, i’m not sure who is getting more bored but Mia is able to recite pretty much every episode of Peppa Pig and our SKY + is maxed out with childrens TV recordings.

Right on cue, she has just woken for a snack and alot of restless fussing!  She has been suffering with back pain and joint pain which I think causes the restlessness infact last night I ended up taking her into St Marys Hospital for some morphine because she became very distressed with thigh pain and paracetamol and codine had not done much to alleviate the discomfort.  Mia has also got very chubby again and gained 2 kgs during the last week!  Steroid food fads this time included homemade soup (Asparagus or leek and potato) chicken noodle packet soup, marmite, rollmops, crisps and mini sausages (Marks and Spencer ones :-) ). 

Mia has been back to nursery yesterday and today after more than a week of not feeling up to it so she is obviously feeling a bit stronger.  She has a break from her treatment until Tuesday so we will be making the most of it,  we are looking forward to a more settled weekend and are hoping to enjoy the beautiful sunny weather. 

We do have some fantastic news though… Mia is now using the toilet for her poo’s.. HOORAY  This is such a massive break through because ever since potty training at aged 2 Mia has struggled with constipation and developed a huge aversion to sitting on the loo for a poo, this week she just seemed to decide that it was time she was “a big girl” and with lots of encouragement she has succeeded.  It is gonna cost us though she wants a pink bike with a basket on the front so we struck a deal with her that if she continues to use the toilet until Daddy’s birthday (6th June) then we will buy her the pink bike. 

I will have to sign off for now because Mia is awake again!  But i will add pictures and more news as soon as possible XXXXXXXXX

Here is Mia riding on Harvey’s old rusty red bike with Harvey and Scott spectating…