It started with spicy sausage demands….

And it didn’t stop there!

The Devil (steroid) reared it’s hungry head on about the 7th day of treatment and the demand was from spicy sausage which was provided by Amy when she came to visit, it is very hard to source spicy sausage in a hospital that is a least a 30 minute walk away from any decent food shop!

The eating just continued to increase in frequency and the demand for new and sometimes very odd food was a daily occurance.  At it’s worst Mia would eat at least 5 times during the day and 3 times during the night.  Her cheeks got chubby and her tummy got big the huge!

We did consider buying shares in Marmite and Rollmops (pickled Herring) as these were definate favourites.

We also considered installing beds in the lounge!

Let us out…please

On Monday 22nd September 2008 Mia was discharged from Piam Brown Ward at Southampton Hospital and instantly became an in-patient at St Mary’s Childrens Ward on the Isle of Wight.  Luckily she was well overnight and they let us go home on the Tuesday.  Being back at home after more than 2 weeks away was fantastic………  Scotty and his Mum (Grandma) had hired a carpet cleaning machine and spent 5 days cleaning and tidying the house.  It was perfect!

Mia continued to take everything in her stride and over the first week at home she met all of the community nurses who come to the house to take her blood and deliver medicines and supplies. 

Hair cut.

On Friday 1st October Mia had her last hair cut for a while (I think….. I say that because as I’m writing this almost 3 weeks later she still has quite alot of hair).  The Doctors and Nurses had explained that she is very likely to lose all of her hair during the first few weeks of chemo so I thaught it would be a nice treat to go to the hairdressers and get a little princess pampering.  The result was a beautiful chic bob (which over recent weeks is often more fluffy and fuzzy than chic but never mind.)

On 17th September we were reliably informed by Karon (play specialist) that we were to be visited by a famous Sailor… Not popeye!

So in true Mia form the nail polish came out..

Mia was in a fantastic mood and was really excited that Ben (not Benny from 2-3’s at nursery) was visiting HER!

He was a charming visitor who bought GOLD with him… What more can we say but thanks Ben Ainsley you really did brighten our day. 

One week into her treatment, on 16th September Mia turned three.  Auntie Sam had stayed the night with us so was there for the morning photo shoot, although only her hands featured in the pictures. 

 Later on that day Scott and Harvey came over to help the staff on the ward sing happy birthday and to help Mia and Mummy  eat the cake. (Thanks Sam Matthias for buying said pooh cake :-))

All things considered Mia had a great 3rd birthday  and thank-you to everyone who sent cards and gifts XXXX

Over the next 3 or 4 days Mia enjoyed having visitors and generally getting used to being in the Hospital, there was a slight twist to the settling in period though and that was Dexamethasone (The Devil).

The Devil is a steroid given in large doses for 28 days to help attack the Leukaemia cells but it has side effects….   Tantrums (BIG ONES), mood swings, restlessness and increased appetite.

Scott and I had a favourite saying during these early days, “The highs are high and the lows are low”!

Harvey’s second visit to see Mia was pretty good she was happy to see him and even let him sit on her bed

Dressing up and Making up became favourite past-times.

Visitors who got snapped during these few days include Grandad John (The Little Fat Guy…Mia’s words)

and Henry, Mia’s bestest boyfriend (Most of the time).  High praise has to go to Henry who did not snap back at Mia’s outbursts and he even wore make-up too!

DAY 2                        

11th September 2008

Today Mia went to theatre for the first time ever!  She was really brave and went to sleep without any distress which made it so much easier for me….

She had a central venous line (Mia calls it “Baby Snake”) inserted so that all of her chemotherapy drugs can be given directly into her vein without the need for repeated stabs (Mia’s word!). 

If all goes well and her line does not get damaged or badly infected then it will stay in for the whole 2 years of treatment.  It’s a good job Mia coped so well with it. 

We took this picture to show to Harvey so the line is cunningly presented by cuddly dog…..Not everybody gets the dog!

The first job for Mia’s new central line was to give her a blood transfusion as you can see by now she is very pale!

Mia had an anaesthetic again 2 days later for her first dose of intra-thecal chemotherapy and a bone marrow aspirate which confirmed her diagnosis as common Acute Lymphoblastic Leukaemia (cALL).  Her prognosis is good and for now at least she is commenced on the lowest risk treatment protocol known as Regimen A.

With hindsight I can see that towards the end of August Mia was starting to become poorly, She had 2 colds in a row and had started waking in the night and napping in the day.  

Because it was the summer holidays and we were having late nights and busy days I didn’t think that much of this.

On the 6th and 7th of September we went to the Bestival, despite the mud!  Mia had a bit of a cold so I carried her in a backpack so that she could enjoy the sights without her getting her purple croc wellies dirty! ( that was her main concern).  Scott and I both thought that Mia was looking a bit pale and that she was more grumpy than usual but because it was a busy weekend we didn’t really worry too much. 

On Monday 8th September I went to work and Mia was still tired and grumpy so she stayed at home with Scott and watched lots of telly.  At teatime I noticed some tiny red spots on her tummy (like a meningitis rash but she had no other symptoms), I was also worried that some old bruises on her knee’s had still not faded.  It did cross my mind that we should check it out with the GP but the surgery was already closed (like it always seems to be when my kids are poorly) and Mia was tired so I put me to bed as usual and was going to see how she was in the morning. 

At 9.30pm She woke up really cross and a bit confused, shouting at me and Scott and telling us to go away and that she wanted to go home.  She was very disorientated and very uncomfortable so I decided to give her a bath to calm her down.  While she was in the bath Mia became very calm but was hallucinating and giggling, not aware of my presence in the room.  I  noticed lots more of the little red spots, this time all over her body and she also looked incredibly pale.  I decided that I couldn’t wait till the morning and decided to take Mia to A&E. 

She was (of course) instantly “normal” again as soon as I got her in the car and headed off on the 20 minute drive to the hospital and there were a couple of times when the thought crossed my mind that I was over reacting but I carried on and by 11.30 she was checked in and was being seen by the Doctor. I gave the account of the episode that evening and told the doctor about the bruises and tiny red spots so they took some blood and admitted us to the Children’s Ward for the night.

On the morning of 9th September on the Children’s Ward the paediatrician started saying that her platlets and haemoglobin were low and then when examining her he said her liver and spleen were palpable, panic was begining to take hold but I couldn’t workout what all this meant (despite being a paediatric nurse).  At about 11am Scott and I were called into see the Paediatrician who explained that he believed the blood tests showed that Mia had Leukaemia and that we needed to go to Southampton hospital where more blood tests could be carried out to confirm this.

By 5pm the same day Mia and I arrived at Southampton Hospital where Dr Jan confirmed the diagnosis and Mia’s treatment began……..