Mia singing

Friday, November 28th, 2008

Following on with the Christmas theme having written to Santa it was now time to start singing about him!  Mia has learnt so many Christmas songs already, thanks to Little Squirrels Nursery and she loves to sing them too!  Harvey seems to think it’s much more fun to try and put Mia off than to join in.  See the singing angel here and here

It has been another good week!  Mia has enjoyed nursery and playgroup today and despite us all now having the winter cold everyone in our household is happy…. fantastic.  I will start getting the Christmas lights out this weekend so that should whip the kids up a bit.

Busy week next week:  Lumber Puncture and Bone Marrow Aspirate on Tuesday then IV (intravenous) Vincristine (chemo) on Thursday and 5 days of the dreaded steroids… once that’s over Mia only has her oral chemo (daily) and yucky weekend medicine (an antibiotic given 2 days a week to prevent pneumonia) to take until after Christmas, providing she stays well of course.  Her intensification block of treatment is scheduled to start the week of 3rd January.

Thanks for all the comments, keep them coming we love reading them XXX

Still got the cold..

Wednesday, November 26th, 2008

We had a good weekend with visits to Busy Bee (garden centre) Christmas world, and B and Q to see the Christmas decorations.  I stirred up a bit of chaos in B and Q by setting all the jingle dancing Santa’s off at once and Harvey and Mia took their lead from me, before we knew it everything that sang or danced was doing it!!!!  It was good fun!

On Sunday we went to Tesco and met up with Sam and James, Hen and Bella for coffee then had a visit from Bede and Julia, Ruby and Oscar for more coffee.  During a minor lapse in parental observation the 4 children managed to spill 10,000 hama beads in the lounge… whoops.

Mia and I did head for Southampton on Monday and stayed at CLIC Haven but on Tuesday morning the doctors up on Piam Brown Ward decided that her cough was still significant and her anaesthetic for Bone Marrow aspirate and intra-thecal chemo was post-poned again.  She did have an echo-cardiogram before we left the hospital though so it wasn’t a completely wasted trip.  The echo was done because one of the chemo drugs that she is due to have in the new year can cause cardiac problems so it is important to have a “normal” reading before the chemo commences, her heart function will be monitored again during/after the treatment.

Today Mia has been to nursery this morning and we had Henry and Bella to play this afternoon, we decorated biscuits and Mia and Henry pulled some very attractive faces for the camera.  Mia’s blood levels have recovered slightly so the risk of infections has reduced again so she will go to nursery again in the morning and we will hopefully get to playgroup on Friday as-well.  Her cough still seems to be hanging on today so we probably won’t go back to Southampton until Monday but Dr Jan has reassured me that it does not matter that we are slightly delayed because all of her oral chemo has continued in between times.

Harvey and Mia have written their letters to Santa this week, Mia even managed to sign her own name!

Slight Change of Plan

Thursday, November 20th, 2008

Due to Mia having had a cough all week it was decided this afternoon that her chemotherapy and bone marrow aspirate due to be done tomorrow under anaesthetic will be postponed until Tuesday next week.  Mia was quite happy to spend an hour on the children’s ward playing Donutters !!!

 

             Thanks to good planning from Mia’s communtity nurses,  she was seen by the Doctor at St Mary’s and a plan to postpone was made before we made the trip over the water.   Although Mia is well in herself and does not have a chest infection her cough is quite “chesty” and the anaesthetic could potentially make it worse.  It has been explained to us that through out treatment there will occasionally be times that chemotherapy is delayed due to illness or low blood levels and that a postponement of a few days will not affect the efficiency of the treatment.  Mia will continue on her oral chemotherapy over the weekend and we will be Southampton bound on Monday afternoon for our overnight stay at CLIC Haven and treatment on Tuesday.

Popsy and Sue Visit.

Thursday, November 20th, 2008

On Wednesday Grandad Popsy and Sue travelled from Devon to come and see us, bearing gifts for Harvey and Mia.  It was lovely to see them both looking so well and the children were really pleased with theirpresents.  Harvey had 2 lego sets which he quickly set about constructing and Mia had a Jumbo set of Crayola pens, paints, stamps and stickers and a Jumbo set of Blo Pens which proved to be an instant hit (with all of us!).On Wednesday evening we all went out for a chinese meal, and on Thursday evening a trip to Pizza Express.  What more could a girl ask for?  Her two favourite restaurants in two days and with Popsy and Sue to listen to her stories… Mia was in her element. We are all well fed and have really enjoyed the week.

Normal Week!

Thursday, November 20th, 2008

Despite her cough and cold which has kept Mia awake a bit at night, It has been such a ‘normal’ week!  She has not had a temperature and has obviously not felt too unwell and has carried on regardless.  In fact she went to nursery on Tuesday and Thursday mornings and one of her teachers reported that she has had her best days yet, her confidence is back, she is more mobile and gets stuck in with all activities.  Mia absolutely loves her nursery and they make her so welcome that I feel confident sending her whenever she is well enough to go, even if it is only for a few hours.  I think it has been really important that she has got back into going to nursery because it helps to keep things normal for all of us.  Mia’s blood tests on Wednesday indicated that she is almost neutropaenic again (this makes her more prone to bacterial infections) so it was great that she has had such a good week because we will be being a little more cautious about where we go whilst her blood levels are low.

Mums get Muddy for Mia’s fund

Monday, November 17th, 2008

Today was a good one!!!!  One of the Mums (Emma Watts) from Harvey’s school was so shocked when she first read Mia’s diary that she felt she had to do something to help out and so she spread the word and got 10 other Mums to volunteer for a day of sponsored team activities and personal challenges including a quite scary zip line and a tricky assault course.  At 10.30 this morning, in the rain the mum’s set out on the assault course at Kingswood it involved both team and individual challenges, lots of mud (due to the rain) and generally quite strenuous activities that  Mums don’t get to do that often (they are normally watching the kids do them).  Everyone had a great time and there was lots of laughter… Mia loved watching them all get filthy and wet.  By 12.00 all 11 were queuing patiently for their turn on the zip line (some more anxiously than others) but one by one everybody did it!!! And I did too, which I secretly enjoyed.  The activity morning was followed by lunch for all of us courtesy of the Kingswood team.  Scotty and I were so touched that everybody involved had taken days off work, rescheduled childcare and got sponsors from friends and family to raise money in Mia’s name.  It was truly touching… especially as I only knew half of these Mums by sight and had probably only ever said “Hello” whilst doing the school run.  We are very grateful for their time and effort and can’t wait to see how much they managed to raise, Emma has estimated that it is around £500 which is fantastic.  Thank-you from us all XXXXX

Busy Week..

Saturday, November 15th, 2008

Apologies for not posting sooner…it has been a busy week.  Mia and I were home on Tuesday morning and her 5 days of steroids ended on Wednesday but by Tuesday night the appetite had really kicked in so I have spent much of the week being tired as a result of the hospital stay and Mia waking in the night to eat.  Thankfully she hasn’t been demanding full meals just a marmite sandwich and crisps (salty ones of course).  By last night I was not so amused and she is back on strict instructions that any further night-time snacks will only be bread sticks and water….Hopefully she will realise they are not worth waking for.  It has however been nice to see her with a good appetite again even if it only lasts a couple of weeks, the chubby cheeks got a little chubbier this week too!  Mia had lots of discomfort from her central line stitches on Wednesday and Thursday this week as well so she was quite grumpy for a couple of days. 

Friday was a great day, we went to playgroup and spent a great hour catching up with friends and we even went to the school celebration assembly and saw Harvey recieve a red letter for good behaviour during the last term.  Harvey desperately needed a hair cut so that was the next outing on Friday and Mia could not resist getting one last trim, her hair is getting really thin now. 

The weekend has been a good one, and included a visit from Grandad Don Don which was really nice… Mia clambered all over him and was a perfect little chatterbox for most of the day, she also showed off her rock and roll dancing this evening which kept us all entertained.

Next week should hopefully be more settled! 

It is however, being kicked of in style because 10 of the mums from Harvey’s school are doing lots of crazy (muddy) out door activities including Zip lines to raise some money for Mia’s Especially for you Fund. 

I can’t wait to spectate!!

New Central Line is in.

Monday, November 10th, 2008

Mia went to theatre at 10.30 this morning for her new central line, she was very anxious but went to sleep OK and by 11.45 was back on the ward with her new baby snake!  She was quite stroppy and very hungry but we had Auntie Sam with us to help entertain and after a dose of codeine we were able to change her dressing for a nice clean one and take out the cannula that had survived since Friday.  We stayed on the ward till just after teatime and then were allowed to come back to CLIC Haven for the night.  We will go up to the ward in the morning to get baby snake flushed and then head back to the Island.  All in all it was a good day and Mia thoroughly enjoyed chatting to the staff especially Dr Steff who Mia impressed with her knowledge of drug names and procedure explanations… she is a proper little nurse.

Weekend update.

Sunday, November 9th, 2008

So it’s Saturday evening and both Mia and Harvey are in bed… It’s been a busy week!  Mia went back into St Marys Hospital on Friday afternoon for her chemo and was a superstar when she had her new cannula put in.  She is getting increasingly more anxious because she knows it will hurt but on Friday she took back a little control by choosing the snowball spray instead of the “icing” a local anaesthetic cream which she says doesn’t make it not owie.  So the nurse practitioner (Michelle – a great name!) sprayed lots of snowballs and quickly got down to work taking blood and then inserting a cannula, it took 2 attempts and Mia did shout alot but stayed really still and said that it didn’t really hurt ( when it was finished).  She had her chemo and we came home to a fish and chips dinner.  She is back on the steroids for 5 days and we can already see the mood changes this time basically lots more shouting and a few teary meltdowns but she knows why and just says that it’s her grumpy medicine and she’s getting better at calming down and often says sorry for being stroppy.  We had a good day and have managed to book a room in CLIC Haven for tomorrow night which means we don’t have to get up at 5am on Monday to catch the ferry!  We have left her cannula “mini snake” from Friday in and I have been flushing it twice a day so hopefully on Monday morning it will still be working and she can be put to sleep without any further “stabs” or that “stinky gas”.   I will write again on Tuesday or Wednesday when we are home with a new “baby snake”XXX

Thank you Nana for getting Mia’s fundraising page started… for all those who haven’t seen it the link is on the home page and copied here:

Sickness..

Thursday, November 6th, 2008

Well unfortunately Mia did not manage to avoid the sickness bug!  Very shortly after returning home from her swimming on Wednesday morning she started complaining of tummy ache and within 20 minutes she was screaming in pain and I was making a rather frantic journey to St Mary’s Hospital to get her checked out.  I don’t know why but a 15 minute journey (I was driving fast) when you are scared feels like a lifetime, especially when the car in front decides to give way to every horse, lorry and bus on the road!  Anyway on arrival at the hospital Mia vomited in fantastic style all over herself and was instantly in less discomfort, I continued to be frantic and abandoned the car recklessly and ran into the ward carrying my vomit drenched bundle.  The nurses on duty were brilliant and within 20 minutes she had a cannula in, fluids running to rehydrate her and all her bloods had been sent to the labs to make sure she didn’t have an infection which would require antibiotics.  Her observations were stable with no fever and she was given some paracetamol for the discomfort after this she slept for 40 minutes and woke up a lot happier.  Mia spent the afternoon playing playdoh, watching TV and reading books, there were a few more vomits but they stopped by 8pm and we had a fairly good nights sleep.  After a long morning on the ward, with me feeling very frustrated because Mia should have been over in Southampton getting her new central line, we were discharged home at 2pm.  This evening we enjoyed our fireworks in the garden that we could not have yesterday and after a 30 minute protest (disrupted routines again) Mia went to sleep at about 8pm.  Mia will have to go back in to St Marys tomorrow and have another cannula for her IV Vincristine (chemo) then we will hopefully have a bug free weekend and she will be on the theatre list again on Monday morning for her central line insertion.  We have all our fingers crossed again XX  PS. Happy birthday to Auntie Sam and Sam love to you both from all of us XX.

Swimming.

Thursday, November 6th, 2008

Because Mia has no longer got her central line in and the wound where it was removed has healed we have been swimming!  It was fantastic, Mia and I went on Tuesday and Wednesday morning at 8.45 and had 45mins with the pool all to ourselves before the lessons started.  Mia has not forgotten how much she loves it and quickly made herself at home playing with the toys and even swimming a few lengths.   Thank you Jane… Your pool and hospitality are tops XX

A Great Weekend with Friends..

Sunday, November 2nd, 2008

We have had a fantastic weekend with only one drama (not Mia this time!)…. Sharon, Phil, Daniel and Maisie came to visit from Wales.  They nearly didn’t come because Daniel had a bit of a cold but I decided that because Mia’s blood levels were fairly normal due to the week off her oral chemo it was worth the risk especially as Mia had been looking forward to their visit for the last 3 weeks.  They all arrived at 3pm on Saturday and the kids had a great time running round the house (including Mia… she is so much more mobile now), watching “You’ve been Framed” and painting Disney Princesses.

 

 

 

 Bedtime came round very quickly and after a little indecision (from the children) about who was sleeping with whom and in what room, Sharon and I eventually got them all to sleep in record time, Maisie and Daniel slept in Harvey’s room and Harvey and Mia were in Mia’s room (This would soon turn out to be a Godsend!).

Us adults promptly open the wine and enjoyed a curry, it was a really nice evening catching up, laughing and for Sharon and I almost crying!  We headed to bed at about midnight and no sooner had we settled then Maisie woke up being sick, she must have had a bug and was sick quite a few times in the night.  Needless to say Sharon and I slept very little and as soon as the children were up in the morning the Kite family were packed up and headed back to Wales so that Mia did not catch the bug.   Whirlwind Yes, but fantastic too!

We had already planned lunch at Pizza Express with Sam, James Henry and Bella so minus the Kite family we headed in to town and had a great meal with the Matthias family.

It is so good to do normal things with good friends and great that Mia was well and enjoyed it so much.