Another delayed update…sorry!  But no further delay on treatment!  Mia continued on her antibiotics in Hospital until Tuesday moring when we were discharged with antibiotics to continue at home for  further 3 or 4 days depending on her neutrophil count.  So back at home we got back into routine thinking tht her count would not be good enough till next week to restart her chemo, however neutrophils on Thursday were 6 and the doctors over on Piam Brown felt that bcause they were rising it was fair to assume that by Friday they would be up to 7 which would mean she could have her Cyclophosphomide and Cytarabin.  So at 6pm on Thursday I hastily got on the phone to book a ferry on what would be one of the busiest days of the year due to the Isle of Wight Festival, we were very lucky and managed to secure our return journey for Friday.  We were on the ferry by 7.30 and after a long day on Piam Brown getting 3 different chemotherapy drugs we were back on the ferry by 6pm with lots of Festival goers. Mia was a superstar all day, I was so pleased thatwe got through such a long day without any tears or tantrums, she really does “pull it out of the bag” when needed… love her. 

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

On Monday we were discharged home with IV antibiotics to continue once daily until Mia’s neutrophils had recovered to 0.5, this meant that her treatment was delayed for the week because she was not well enough to start the next cycle of chemotherapy.  She was happy to be back home and thoroughly enjoyed our first proper swimsuits on the beach day this year on Tuesday. 

 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.

Whilst I was writing last nights post I mentioned that Mia was restless, hungry and awake again!  But what I didn’t know until 5.30 this morning was that an infection was brewing which would explain her antics.  Mia’s temperature went up to 38.2 at 6am and because we had not checked her bloods since Tuesday I had to assume that she was neutropenic and head into St Marys for monitoring.  On arrival at the hospital Mia’s temp hit 38.5 and her blood draw confirmed that she was neutropenic at 0.3 so antibiotics and a hospital stay it is…

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

It has truly been a very hectic couple of weeks since I last wrote Mia’s diary, I have attempted to write on a number of occassions and have been hindered by regular requests for my culinary delights, loss of our broadband connection, Mia waking up in the evenings and just this week with it being Half Term I have been out cycling with Harvey each evening (or watching Britain’s got Talent!) 

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…

We are actually a little over one week into this block of treatment but the heavy steroid doses of last week have left me very little time to catch up on Mia’s diary!  So…. Tuesday 5Th May was a long one!  Mia had her lumbar puncture at around 10.30, she was brilliant at waiting despite being awake from 6am and not being able to eat or drink, she really doesn’t get that bothered about being starved she just knows that if she went to sleep with a really full tummy she might be sick and that wouldn’t feel very nice.  After her anaesthetic and recovery (laying still for 1 hour to prevent headaches) Mia and I headed to the cafe to get a cheese and ham Mezzaluna (toasted flat bread) and then returned to the ward for her next 2 chemotherapy drugs.  Unfortunately due to the bank holiday weekend the pharmacy department were back logged and we had to wait around till 3pm to get her vincristine and Doxorubicin, it was a long and tiring wait but gave us a nice chance to catch up with other children and families who we have met along the way and who were also enduring the long wait for their chemotherapy.  Gradually one by one all the children were either hooked up to their “Robby robot’s” or given their vincristine (or both) and we all headed off for home, Mia and I managed to catch the 5pm ferry so we were home by 6.30pm and she was tucked up in bed within the hour.  On Wednesday Mia spent the morning in nursery and then in the afternoon we went scooting along the seafront with Henry and Bella.  We covered a distance of at least a mile and half before it all became to much for Mia who literally seized up in front of us and she could barely stand let alone walk.  I Had to carry her the last 1/2 mile home and felt very guilty for forgetting quite how week the chemotherapy makes her.  That was the last real walking Mia as done!  She has been managing up to 2 hours in nursery but only every other day and she has been totally exhausted as well as grumpy and hungry thanks to the dexamethasone.  On Friday we went to St Marys for Mia’s last dose of Asparaginase (IM injection in thigh) and Mia was very brave, she had been dreading it since Tuesday!  She got a prize from me and one from “Mad Helen” the nurse which helped he to forget it.  She has done remarkably well with only a few big tantrums this week, although she has needed lots of carries and wants to be my shadow again at all times, mainly she has just been very tired and if she gets enough rest she seems to cope better with the low mood broguht on by all the drugs ahe has had.  On Wednesday this week we returned to Southampton for her second doses of Vincristine and Doxorubicin, so far her blood results are still good and she is staying well.  With the Dexamethasone stopped for one week Mia is a lot brighter and managed a full morning in nursery yesterday, however the sleep disruptions have been huge, iniialy it started with waking for food (last Saturday) and then last night she was just wide awake between 12 and 3am telling me that she was not going to go back to sleep!  She didn’t ask for food and I managed to get her to stay in her bed (don’t know how!), I crept back to be and cat napped in between visits to her room each time she called out to ak me the time, or to line up the bears, give her a drink blah blah blah… I can only hope that tonight is more settled.   Thanks for checking in XXXXX 

With neutrophils now at 0.2 Mia was still not fit for her intensive treatment so we had a long bank holiday weekend to look forward to. 

Scott has been doing lots of gardening and we are now the proud owners of a sweetcorn patch and lots of tubs growing lettuces, onions, tomatoes, beans and courgettes.  Harvey and Mia have enjoyed planting and watering over the last couple of weeks but the biggest joy comes from finding insects and grubs!  On Friday afternoon Scott found 2 slow worms which was the best discovery yet…

On Saturday afternoon after a bit of dressing up and some gardening Harvey and Mia chose to have a trip to Peter Pans.  It’s a mini amusement park on Ryde Seafront, for £5 each they had free access and they went on electric boats (6 times!), a helter skelter, a train ride, carousel and finished it off with a go on the trampolines.  The weather continued to be brilliant here on the Isle of Wight and we also met up with Sam, James, Henry and Bella so it was a really nice afternoon.

Sunday brought us lots of visitors… Bede, Julia, Ruby and Oscar arrived at 10.30 armed with croissants and a mini bouncy castle and then at 11.30 Nana and Gary arrived to spend a beautiful sunny day on the Isle of Wight.  We spent much of the day in the garden enjoying the sunshine but we did make a trip to Brading Down in the afternoon to soak up some views and a Minghella’s ice cream.

On Monday the weather was not so good and after a very chilly trip to a car boot sale we headed to a pub for some lunch!  In the afternoon Harvey had a major achievement, he cycled his bike for the first time solo and without stabilisers.  He was very determined and was definitely ready to succeed because it took less that 5 minutes for him to be balanced and peddling like mad, he was so chuffed and Scott, Mia and I were almost as excited as him!  Mia also had a go on Harvey’s old bike (with stabilisers) she mastered it very quickly and was equally as determined as Harvey to go it alone, however a the slightest incline she needed a push to keep her moving forwards.  It was a great weekend with some very proud moments XXXX

And to top it all off neutrophils are 1 and all systems are go for Mia to recommence her treatment… we were Southampton bound at 6.45am on Tuesday.