Happy at Home

Thursday, January 29th, 2009

Since her discharge from hospital on Monday Mia has been on fantastic form.  She continues on her antibiotics but they are only once a day so she has been able to go to nursery (everyday this week) which she is loving at the moment. 

Bed times have been a breeze I had a long chat with the troublesome teddies who are now doing as they are asked and Mia is settling quickly after her stories and sleeping soundly for at least 11 hours a night.  We are all thoroughly enjoying this very calm time.

I have taken some time out today to sort out my Race for Life application and online fundraising page, Anyone on the Isle of Wight who wants a friend to run (or walk) with please join me on the day by clicking here to register.  Everyone else click here and sponsor me…. Thank-you XXXXXXX

Infection strikes… 5 days in hospital

Tuesday, January 27th, 2009

Tuesday was officially Hair loss day… Mia’s hair was coming out in clumps and her pillow was positively fluffy on Wednesday morning.  She does not seem bothered by this and I am really pleased for that, we have been lucky that she has lost it slowly up till now so it has not been a big shock.  And she is so beautiful… I love this picture :-)

On Wednesday Mia was very grumpy for much of the day and by the evening her temperature was beginning to creep up, by the time she went to bed it was 37.6.  She slept soundly for only 2 hours before waking for food (steroids still not quite clear of the system!) whilst she was awake I checked her temperature again and it was up to 38.1.  Because of the profound neutropenia Mia’s temperature is the first indication of an infection so once a temp reaches 38 it needs to be monitored and if it isn’t down under 38 within 4 hours or if it gets up to 38.5 we need to high tail it to the hospital for antibiotics.  By the time Mia had finished eating and gone back to bed her temp was down again to 37.6 so I settled to bed knowing that more food demands were imminent.  At 12 Mia was up again and her temp was still below 38 so she had a snack and went back to bed!  4am up again but this time temp was up to 38.7 so no snacks just a very quick exit into a very cold car heading along the very dark roads to St Marys Hospital.  It was not a panicky journey though because despite obviously feeling a bit unwell Mia was chatty on the way which was very reasuring for me… I don’t like it if she’s quiet!! (It’s very rare).

On arrival at the hospital blood cultures (to check for infection in the blood), blood tests and observations were carried out and IV antibiotics started.  Once this had all been done Mia could have a dose of paracetamol and we both managed a couple of hours sleep before Mia was hungry again.

Our 5 day stay in hospital went really quickly and Mia actually quite enjoyed it!  Dionne (play specialist) came up with some fantastic make and do activities….  She is TOPS!

Mia’s temperature did not settle within 48 hours so she started on another antibiotic which will continue for 10 days in total (I am doing it once a day at home now), once this drug was in her system she started to bounce back and he bloods have recovered from the chemotherapy too.  Her neutrophils are back up to 1.1 which is great news because she is at much less risk of infections at that level.

Her night time snacking and constant grazing continued until Monday but has definitely slowed up now and back at home last night Mia slept through again for the first time in about 10 days.. I spent much of the evening panicking and checking her of course :-)   It is almost impossible to rationalize my fears, but I’m determined not to miss any signs that she might be unwell.

Today was great, Mia went to nursery, I watched ER (recorded from Thursday), Scott oiled the kitchen worktops (they look like new!) and then we had a nice evening a home with Harvey and Mia both in excellent moods.  We are looking forward to a quite week, Mia’s next chemotherapy treatment starts on 2nd Feb.

Please can everyone take at look at this link and sign the petition to get Government support to raise Leukaemia awareness XXX

Only 2 more days of the dreaded STEROIDS…

Monday, January 19th, 2009

Today was tough!!!!  Mia is very sad at the moment, she is irritable about the most irrelevant things… tonight she had a complete meltdown because her teddies have to be lined up on the pillow next to her, like they are queing for a bus, but everytime she laid her head on the pillow the teddies moved!!!  She is totally unable to understand a) why the teddies won’t stay still and b) why she cares if they stay still! She does know that it wouldn’t normally bother her, and all I can do is expain that the grumpy medicine is making her upset about the Teddies and that they don’t mean to keep moving!  She is also physically exhausted and has done little more than sit on the sofa all day, she went to bed this evening at 5.30pm which probably means she’ll be up lots tonight! but she was just so tired.  It is so sad to see her so sad… but there are only 2 days of steroids left and it will take a few more days for her to get over them But hopefully by the end f he weekend she’ll be feeling happy again.  Her blood results today showed a dramatic platelet recovery with them now being 301 (they were 40 on Wednesday), however her neutrophils are down to 0.0 it doesn’t get much lower than that!  We are keeping our fingers crossed that opportunist infections don’t attack.

On a lighter note our friend Paul West has set up a fundraising page for Mia’s fund, he will compete in the Western Beach Race on 11th October 2009.  On Sunday we enjoyed a couple of hours on the beach taking photos and watching him ride along the sand pulling wheelies!  It was very exciting, please visit his fundraising page by clicking on either photo.  Thank-you.

 

 

 

 

 

 

Finally the Cancer Research UK Race for Life 2009 is launched so…..Ladies please click on the Logo to find your local Race and join in!  Regular visitors to this website will know that Mia received her “Little Star Award” from Cancer Research UK in December 2008.  Please support someone running the race for life if you yourself are a man, or are unable to Race.  (The word race can be supplemented with walk, crawl, or hobble….. You don’t have to run! :-) ).

Intensive!!!

Friday, January 16th, 2009

I have worked it out!!!!  Delayed Intensification is INTENSIVE!

The Panto was a great success for 1 hour…. Then it became Mia versus The Cast and for about 5 minutes Mia stole the show with her screams for “crackers or buttons”  (the Jacobs kind and the Cadburys kind).  I was of course desperately trying out all my distraction techniques but to no avail, so eventually I ran from the theatre with a very cross Mia tucked under my arm!  It was very intense!  Scotty and Harvey followed us out with all the coats and we left with Scott and I exchanging very cross words….  The steroids really put so much stress on all of us, mainly because it is so difficult to keep Mia happy and also so difficult to see her sad!  Anyway we headed off into the night with both children asleep in the car and arrived at Mum and Gary’s at around 11pm (kind of good that we had left the Panto early or it would have been about 1am!)  Mia’s grumps had subsided but the hunger had not so she ate more before going to bed only to wake at 4.30am for more food!  She also had constipation this weekend which is very distressing for her and us and resulted in a few more cross words between Scott and I on Saturday morning.  By lunch time on Saturday though we all chilled out a bit and had a great weekend. 

Mia’s steroid side effects had really worn off by Monday and she was back to herself again, desperate to go to nursery and carry on as normal.  Wednesday saw us on the ferry again for the third vincristine and Doxorubicin which went without a hitch,  Mia coloured her way through the treatment and entertained staff and other parents with her antics and chatter.  The real blow came when we realised that the steroids had to commence again on Thursday morning (we had just had 2 good nights of sleep). 

So it’s Friday now and the steroids have definately kicked in again, Mia is moody, temperamental, restless and hungry (so am I :-) ) We were up for breakfast at 5am and again at 7am!  She is however still well which is fantastic news depite her pretty poor blood results, she has very low neutophils of 0.2 and low platlets of 40.  And she still smiles hundreds of times in a day so we will keep plodding on and smile with her!  XXX Thank you so much for all your comments, keep them coming we love to read them XXX 

Tantrums and Tiaras

Friday, January 9th, 2009

Mia’s had a great week despite the steroid mood swings, which have been dramatic… The hunger set in on Wednesday which was pretty good because it was her 5th day with only 2 days to go!  We went to Southampton as a day case for her Vincristine and Doxorubicin chemo, the journey was easy and Mia had a bit of a sleep in the car which was well timed.  We arrived on the ward at 12.00 and she immediately smelt lunch!  So we got set up on her bed with a melted cheese and ham toasty, lots of smoothie and some Pringles (salty ones).  Dr Steff carried out a full examination with Mia being incredibly cheeky as always and then the chemo was under way.  We left the ward at 3pm and were on the ferry again eating chips at 4pm.  Mia seemed to be exhausted for most of Thursday but did manage a morning at nursery, eating everything she could including the staff’s lunch if it took her fancy. By the afternoon she was having major tantrums, mainly about food which she wanted but then didn’t fancy.  I think she was tired and probably should have gone to bed at 5pm like she had last week but I missed the cues and when I finally did get her to bed at 6pm she Had a massive melt down and shouted that I was a “stupid little girl”, she meant business this time so she had yet another snack in her bed, apologised for shouting at me and then promptly fell asleep.  It didn’t end there though she was up at 9pm, 11pm, 5am and then 7am….. Wow a busy night for all of us!  The Tiara bit refers to how she still loves to dress up and play even when she’ feeling grumpy, it certainly makes the grumps easier for all of us to manage even just a few minutes of happy play help us all get a grip!

Mia has gone to nursery again this morning despite the disturbed night and she is excited to be going to the Panto in Southampton tonight, then staying with Nana And Gary for the weekend.

Delayed Intensification is under way…

Monday, January 5th, 2009

On Friday last week Mia and I made the journey over to Southampton to begin her delayed intensification treatment.  The treatment during the next 7 weeks includes 6 different chemotherapy drugs, 2 of which Mia has never had before, 2 weeks of steroids given at a high doses for 1 week then a rest week before another high dose week (lots of mood swings expected).  Her first day went well, it was an early start but Mia was first on the anaesthetic list and by 12pm she had had her bone marrow aspirate taken, her intra-thecal chemo administered and was wandering around the playroom whilst her other chemo medication was infused over 1 hour into her “baby snake”.  We were back on the ferry by 2.30 pm!  The following day Mia was understandably exhausted and went to bed at 5pm (unheard of!).  The weekend was a good one and we saw Mia’s Auntie Sam and Uncle Dan with cousins Caleb and Jack and caught up with friends Bede, Julia, Ruby and Oscar for Sunday Brunch.  It was a really nice afternoon with the children getting their faces painting and helping the magician with his tricks. 

Today Mia has had an injection of Asparaginase (chemo) into her thigh which of course she did not like, but once again she was amazingly brave and tolerant, telling me afterwards that it didn’t hurt!  The steroids are kicking in and causing hunger and tantrums but she is looking forward to going to nursery in the morning.

Mia and her Central Line

Sunday, January 4th, 2009

Most of you will have read that during the week prior to Christmas Mia had a brief stay in hospital with a chest infection and was allowed to come home with as I had been trained to administer her intra-venous antibiotics.  People have often asked “Doesn’t it seem odd as a Mum, dealing with Mia’s central line?” and the answer has and I think always will be YES!  However, by getting involved in this level of care I can ensure that Mia has as much freedom as possible from the hospital during her treatment, it goes without saying that I also get that freedom!!!  My Dad was visiting during the time that Mia was still on her IV antibiotics and he took some pictures of me administering them into Mia’s “baby snake” whilst she carried on playing…. I look tired because the antibiotics were 6  hourly doses which meant that I was up till midnight then up again at 6am, and yes it does take lots of concentration, good preparation and planning and ultimately my training as a nurse helps me to understand the physiological process and the risks of administering drugs via a central line.  But I hope that the pictures also show that it has quickly become another “Job” that needs doing and Mia tolerates it amazingly well ( almost obliviously). 

I totally understand that taking on this role would not suit lots of parents and most of my friends and family members that have been around when I have had to take bloods or give medicines have questioned whether they themselves would take this on if they were in the same situation.  For any parents who have a child with a central line who might be reading this and considering learning how to take bloods and flush a line, I urge you to speak with your community nurses or outpatient/day-ward nurses and discuss it further.  My community nurse team are fantastic and even though I do take Mia’s bloods they always ask if I am happy to do this, They would always take this role back if I ever wanted them to.

The “BIT” between Christmas and New Year…

Thursday, January 1st, 2009

Mia has remained well since Christmas Day, in fact she is positively bouncing of the walls.  She is really bright and full of beans at the moment which makes me more anxious about what we have coming….

On Tuesday when I took her bloods the result was not great, her neutrophils were only 0.8, if they were to drop further than this she cannot commence on the intensification treatment.  However it is now New Years Day and I took her blood sample over to the ward today (no community nurses to pick them up… but they do deserve the day off) the results are in neutrophils back up to 1.0 so we are booked on the 7am ferry tomorrow.  I will update how he day goes and hopefully add more pictures tomorrow (Mia has been doing some brilliant fancy dressing which I just have to share).

Happy New Year to you all…. Lots of Love XXXXX