8th September 2011 (T +13, 14 and 15)

Well today is Transplant Day +15.  Over the last 3 days  Chiara has still remained amazingly well.  No sore mouth, sickness or loss of appetite.  She is still eating and drinking as normal.  She is playing or rather throwing herself around and being boisterous but I would rather this than see her lying in hospital cot. 

Yesterday Chiara got her Immunoglobulin and coped well with this as usual with no effects.  She had a rather large vomit last night but unfortunately this was "mouthwash" induced and I wont be repeating that experience again.

Today she ate very well again all day. She received her weekly treatment of ERT which she will continue to receive until we are certain she has fully engrafted. 

The good good good news is today her blood level of Neutrafils were 0.7, so we are on the up.  Please please don't start coming down.............if they keep rising then before long we can have visitors again.  As much as Chiara loves me I am sure sometimes she looks and thinks how long have we been locked up together.  She looks longingly at the double doors as if to think "I wonder what is beyond there". ......one day Chiara you will find out.

Her skin is marking very easily at the moment but I am guessing this is because her platelets are still sitting too low.  She will probably require another platelet transfusion but hopefully after that she will start holding her platelet count.

She no longer gets her anti-sickness infusion but still receives 6 oral medicines at night, slowly but surely these are reducing.

Over the next few days she will be assessed by respiratory who will make the decision if they feel she is well enough to have a sleep study carried out in view of her requirements of the BIPAP at night.

I know it is a huge hope but if Chiara could leave here having had a transplant with minimal complications and no longer needing her ventilator at night I would be absolutely on cloud 9. 

Having said this Chiara is so used to being put to sleep with her ventilator that she jumps around the cot with no intention of sleeping and then the minute I put her mask on she just rolls over onto her side and goes straight to sleep.  Without the mask she doesn't seem to associate night time with sleep, I think it will be a case of giving the ventilator back but keeping the headgear and mask so she can have that to put her to sleep at night.................or a more drastic action of a balaclava so she knows its bedtime. 

This weekend I look forward to spending time with the boys and maybe have them stay overnight with me.  I miss them so much and last night Lindsay was upset talking to me as he misses Chiara and me so much.  I cant wait for day when we all can become a family again or rather start living a normal family life.  From the day and hour Chiara has been born her whole first year of life has been spent mostly in hospital.  I know the boys understand why I am away and the reason why Chiara has to spend so much time in hospital but at the same time they are only children themselves and it is hard on everyone. 

Having one child with a health problem doesn't just affect that child it affects a whole family and more.

Anyway, happy September weekend everyone whatever you are doing and thanks to everyone who  has been following Chiara's progress and has been sending us messages through Facebook etc.  Although I dont reply to them all I read every one and realise how much my wee princess has touched so many people's lives. 

You will see by the pictures she is still as happy and certainly still as cheeky..

5th September 2011 (T +10,11 and 12)

Well today is T + 12 and Chiara is absolutely great.  She is still eating well, drinking well, taking all oral medicines no problem and is still her happy wild self. 

On Saturday she required a platelet transfusion as her platelets had dropped to 17 but she tolerated this very well and had no problems related to this. 

She continues to get her GCSF which hopefully should start to help stimulate her new cells to grow as her neutrafils are now currently sitting at 0 and she is at risk of getting infections so the quicker the neutrafils increase the happier I will feel.

She is continuing to try her best to walk and she is certainly not far off it now. 

What is left of her hair is still sadly falling out but to me she is still as cute as ever but it is sad after her bath not to be able to brush her hair like I always did. I am sure I will be more than making up for it in the years to come when I am sure her hair will grow back beautiful and healthy.

She still settles well at night and is still on her BIPAP. 

Fingers crossed the next few days will remain as good and as positive.  I cant really believe that I have been here for nearly 3 weeks already, in some ways it seems ages and in others it has flown by and yet so much has happened in a short space of time.

2nd September 2011 (T + 8 + 9)

There was no entry to Chiara's diary yesterday which was T+8 as there was nothing really happening which I suppose is good news.  She remains very well, still has frequent soiled nappies which is resulting in a bit of a red bottom but apart from that she is very very well.  She is still eating normally and drinking normally therefore to date we have had no need for an NG tube and hopefully this will continue.  Yesterday Chiara received her weekly ERT which will continue for the next few weeks until her new marrow has hopefully engrafted.  She settled well last night and still requires her BI PAP for overnight sleeping.  The only distressing thing more for myself rather than Chiara was yesterday her hair was noticeably falling out.  She became extremely thin at the sides and her wee cot sheets etc were full of hair.

Today I made the horrible decision to have what remained of her hair shaved off.  I came to the decision at lunch time when her hair was falling in her lunch, it was in her fingers and all over her clothes.  It was unfair to have her go through all that when really the only reason I was putting off shaving her head for was me.  After all I knew in my head that after the Chemotherapy had stopped then loosing her hair was ineviatable.  At 4.15pm we started shaving.  She tolerated the clippers very well and in the end it was not as bad as what I thought it would be.  Tonight she was bathed, fed and was looking extremely clean and hygienic again. 

She restarted her GCSF tonight which hopefully will stimulate her new cells to grow.  Her Neutrafils are 0.1 so now we just need to see them go up and we will all be happy happy happy.

She settled well tonight and still remains on BIPAP.

Tomorrow I look forward to my boys coming through for a wee visit.

31st August 2011 (T + 7 )

Well yesterday was T + 6 but nothing had really changed. Chiara remained very well, still energetic and eating well.  She received her GSCF which is a grow factor for the new cells.  She settled well last night and still remains on her BIPAP. 

Today she was as happy as ever, she was sitting in her cot waiting patiently for Richard and I to arrive and pick her up for cuddles.  The smile she gives us in the morning is enough to lighten up the day.

She is still eating very well.  Her weight has dropped slightly by a couple of ounce but I suppose given the amount of soiled nappies she produces its not surprising. 

She received her Immunoglobulin today and will receive her ERT tomorrow. 

She had some physiotherapy this morning and has lots of new exercises for both of us to practice.  We are trying to encourage her to pull herself up by herself from her knees rather than pulling up straight from a sitting position.  She is able to perform all the different positions on the exercise sheet she just requires a little practice to put then all together in correct sequence. With a lot of hard work and determination I am hopeful Chiara will be walking by the time we leave here in a couple of months.

All in all I am delighted with her progress.

29th August 2011 (T + 5)

Chiara still remains really good today.   She had bright red cheeks when I arrived first thing this morning and I think she is in a bit of pain with her teeth.  She ate very well again today.  Another of her medicines have stopped therefore we are now down to 6 syringes of medicine. 

Today I was holding her hands trying to encourage her to walk around the room. She managed very well and with any luck we could even leave this hospital in a couple of months with her walking.

She was a bit cranky throughout the afternoon but her naps today hadn't went accordingly to plan and I am hoping her mood was due to lack of sleep and sore teeth rather than anything else.

A blood test today revealed her Haemoglobin was only 6.9 therefore she was given a blood transfusion today.  This was transfused over about 3 hours.  Before the transfusion she certainly didn't have a look of having a low Haemoglobin as she was quite pink around the face and still had lots of energy.  However the transfusion took place and the blood result afterwards showed her to have a Haemoglobin of over 12.

She settled down very well tonight and she even managed a wee flying visit from Daddy today. As Chiara is still in total strict isolation visitors are only myself and Richard therefore the day can be quite long when Chiara only has myself for company along with her non stop DVD Toy Story.

I on the other hand am finding it difficult to sleep and today felt extremely tired and drained. Richard stayed a couple of hours tonight so that he could have dinner with me as eating alone every night in a huge kitchen with a wee microwave meal for one proves to be very lonely after a while.   He left and I returned to my lonely little bedroom only to find a lovely bunch of flowers in my bathroom left by Richard to brighten up my wee home for now.

2 weeks down hopefully only about another 8 to 10 to go.

28th August 2011 (T +4)

Today Chiara remained very well again.  No sign of any mouth sores as yet.  She does have quite a lot of loose nappies though which I think at times maybe giving her a bit stomach cramp.  Also into the bargain she is teething.............nightmare at the best of time but we have waited a whole year for teeth and they now pick their time to come through.

At the moment Chiara is still taking loads of medicines, she has antibiotics, 3 anti-reflux, medication  to reduce risk of any Herpes virus as well as Cyclosporin (which is the medicine which is given Intravenous to hopefully help any rejection of the BMT)  She has blood levels taken for this first thing in the morning before she receives the medication. 

She had no routine bloods taken today but I think tomorrow she may have bloods taken to see what her levels of Neutrafils, Platelets and Haemaglobin are sitting at. 

Chiara still remains on her BI PAP at night but the good news is when she is off it during the day and sleeping her Oxygen levels are staying high so fingers crossed maybe sometime soon another sleep study will be performed to see if she is ready to come off her BI PAP at night, this would be another massive achievement for her and it would be great just to be able to put her to sleep at night without a mask.

She was eating and drinking excellent today. 

Sadly her hair has went thin, in a couple of days I am sure it is going to just fall out and I dread the day that happens although I knew it was coming.  Even although the hospital prepares you for everything that lies ahead you are never really completely ready for it.  Having said that I do have her the cutest little bandannas and head scarves so she will always still look gorgeous.

Today back home a charity fashion show was organised by a good friend with proceeds going to MPS Society and Yorkhill.  It never fails to amaze me how everyone shows their support in such are lovely way when times are tough.  I would have loved to have attended as everyone knows how I love a "wee social event" but my time was needed more through here.  Thanks to all of my family and friends who were able to attend and give their support to a great cause.  To the organisers, I will always be grateful to you for thinking of Chiara when nominating the charity.

I hope tomorrow continues to be a good day.

27th August 2011 (T + 3)

Well after a quiet day yesterday with Chiara and only a small update on her blog my night ended up eventful but through no fault of Chiara. I arrived back at Ronald McDonald and gave mum and dad a skype call.  Mum and dad are just getting used to all this fancy technology so I need to give them some practice (plus as my dad pointed out he had splashed out £30 on a dongle so he is going to make sure he gets his money worth ) so anyway as I just get into the start of the conversation with dad I hear my son Joshua shouting in the background something about blood and saying he is nearly fainting, my dad shouting at him to shut up and my mum saying "im alright", next thing I know my dad is saying he is needing to cut the call short as he has to take mum to hospital as she has split her leg and there is blood everywhere.  O M G, next thing I know, here I am, while on Skype to them I'm calling my sister to go and get them and take them to hospital. Through all this I then realise that they all must have forgot they were on to me and I find myself skyping a bloody cushion.  Anyway it all ended up fine in the end. 

Today Chiara was brilliant.  She is still so happy and alert and content.  Her eating is still fantastic for someone who has just went through Chemo and transplant.  Her diet today was readybreak, soup and 2 slice of bread, yogurt, chicken casserole and crisps and snacks.  I am still really anxious everyday though that she is going to start going off her food due to the side effects of the Chemotherapy coming out of her system.  This can result in gut problems and sore mouths.  Thankfully she has none of those yet but I am sure one of these days she is going to be not so lucky and that day I do not look forward to.  Her hair today had a mind of its own, I am unsure if this is the normal before it falls out or if she is just like every other woman in the world who does just have "bad hair days". 

Her dad and brothers were through today.  Sadly the boys could not see her but I had a lovely afternoon with them even if it was just watching DVDs and a takeaway.  I didn't realise how much I missed them until I spend time with them and then they go. 

Chiara had a great bath as always, she spends so much time in the bath here that I am sure one day she will grow a tail....................

She settled well after taking her syringes of medicine like a wee trouper.

All in all I am really happy with the progress she is making and hope that any hitches that may crop up in the coming months are only minor.  Now we just need the cells to grow, grow,grow.