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

Christmas at Home… Just what we wished for!

Saturday, December 27th, 2008

We got our wish… No sickness here and Christmas was spent and home, all together.  Mia and Harvey went to bed like a dream on Christmas Eve after leaving carrots and chocolates out for Rudolf and some chocolates, a can of Lemonade and Pizza! for Santa (MIa insisted that he had ”Take away” produce so that he didn’t stay in the house too long).  Christmas morning began at 6.30am with Harvey waking Mia and her being sick (with fear) because he said Santa’s been here which Mia heard as Santa IS here!  After a quick calm down Mia and Harvey both got stuck in unwrapping a massive haul of gifts.  They both got everything that they had asked for and more… it took at least an hour to unwrap Santa’s gift and there were lots under the tree from friends and family too (which we saved until the afternoon).  Harvey and Scott rocked out on Guitar Hero for a few hours and Mia and I cooked the dinner and hung out with the swimming baby, the doctors kit and Peppa Pig and her friends!  There was also lts of dressing up, Ballerina, Snow White, nurse and Moustaches!!!

It was a brilliant day!!

The next 2 days have been spent playing with new toys, running around the house and watching lots of TV.  Mia’s intensification starts on 2nd Jan 2009 so it’s going to be a quite New Years Eve for Scott and I and then off to Southampton on New Years Day for us two girlie’s, hopefully just one overnight stay then back on the Island with weekly trips for the next month.  I will keep you all posted. 

Happy New Year to everyone XXXXX

Santa is coming….

Wednesday, December 24th, 2008

Massive apologies for anyone waiting patiently for updates…. it truly has been a manic couple of weeks!

Mia recovered well from her chest infection and continued on her IV antibiotics at home until Sunday when her Neutrophils had recovered enough for them to be stopped.  Her oral chemo started again on Monday night and on Tuesday morning she was feeling a bit rubbish!  I think that her oral Methotrexate makes her Nauseous!  She was fine again by Tuesday afternoon and was thoroughly enjoying having Uncle Dan around, we had a really Nice chilled day and enjoyed seeing Sam, James, Bella and Henry for dinner.

Mia and Harvey are both very excited that Santa is coming tonight and are already tucked up in bed! 

We would like to thank everyone who visits our site a fantastic Christmas and thank you once Again for all your amazing comments, it still makes me smile that you all find time to check in and send us your support……XXXXXXXXX

Little Star…

Friday, December 19th, 2008

On Wednesday Mia was presented with her Cancer Research UK Little Star Award at her Nursery.  The day before we went to the Isle of Wight Radio Station and recorded an interview which was played every hour through out the day, it was fun listening to us on the radio.  The day continued to be really exciting with press photographers, Meridian TV and lots of friends and family.  Mia and I appeared on Meridian News in the evening see us Here (sorry for the bad quality)….Mia has watched the recording about 25 times already, and today she is in the Isle of Wight County Press.

A massive thankyou to Karen and all the Staff at nursery who, as ever, made Mia feel very at home and most importantly very special.  Also to Helen Johnstone from Cancer Research UK who produced a very good press release that generated lots of interest in Mia’s Award Story and for attending on the day, all the way from London….  To every Lady reading this page, Race For Life is a brilliant way of raising funds to support the Cancer Reaserch UK charity and it is a very achievable 5KM… get involved.

It’s been a really busy week so more updates will follow over the next day or two, Thank you for all your messages and support we really appreciate it XXXX

Chest Infection

Sunday, December 14th, 2008

Just as things were going so well…..

On Friday evening Mia was very grumpy and had bright red cheeks, her temperature was slightly high but not past 37.5 so she went to bed as usual.  Unfortunately over the evening her temp crept up and by 3am it hit 38.5 which meant that we were high tailing it through the frost to St Mary’s Hospital.  By 5am she had her IV antibiotics started, had a dose of calpol and we settled down to bed.   Mia has responded well to her antibiotics and has remained fairly well through out the weekend.  The kind doctors have allowed us to come home on day release both yesterday and today and I am being observed giving her IV  antibiotics into her central line so hopefully she will be discharged tomorrow.  Her blood counts are very low at the moment and she has no neutrophils at all so we will be hiding out for a few days to get her fully recovered.  Hopefully she will be well by Wednesday as she is recieving her “Little Star” award at nursery, as well as performing her christmas songs with all her friends for the Mums and Dads.  XXX

Out and About

Thursday, December 11th, 2008

Mia has coped very well with her steroids this week, she has been grumpy, demanding and a bit tearful but it has been very manageable and I can’t believe how quick the five days went.  She was very pleased on Tuesday evening to have taken her last “Grumpy Medicine” till after Christmas.  She has taken it in her stride yet again and we have been out and about a lot and had a really busy weekend which she has tolerated brilliantly.  The worst side effect this time around was probably fidgeting causing restless nights which has meant she was tired during the day but unable to relax. 

We went out in the car on Tuesday evening because both Harvey and Mia had been begging to go and look at Christmas lights.  It was harder to find them this year because lots of the ones we had looked at last year were not up (credit crunch?).  However we did find quite a few houses that had excellent displays so it was well worth the trip and I’m sure that we will do it again because the children really enjoyed it…. Until the journey home when they started arguing (We expect nothing else!).

 

 

 

 

    On Wednesday evening it was Harvey’s turn to be a STAR… and he was exactly that.  The school Christmas production was called “Tea-towels and Tinsel”, Harvey was playing “Harvey” which he did brilliantly including singing a couple of song verses solo!!!  It was fantastic, we were very proud parents and Mia was a proud baby sister watching Harvey on the stage. 

The Christmas Tree Goes UP

Thursday, December 11th, 2008

On Monday 8th Scott, Mia and I trailed around the Island searching for the perfect Christmas Tree… apparently I’m picky!  (he he he).  We did find the perfect tree and it was being sold by one of Scott’s oldest friends, who grew the tree on his land so it was worth the search  (Anyone on the Island who’s looking for a tree this weekend head to Farmer Jacks at Arreton).

Once Harvey was home from school and i had adorned the tree with over 500 lights, tiny ones of course, the children did the decorating. 

 

Harvey was very kind and let Mia put the fairy on top, a job which she took very seriously and as with most tasks Mia undertakes she was determined to do it without help from Me… So I just had to get pricked in the face so she could reach!

It is a beautiful Tree and I just love the smell, it is beginning to feel a lot like Christmas in our house.

 

Piam Brown Christmas Party

Thursday, December 11th, 2008

On Sunday 7Th December we headed over to Southampton again, but not for treatment!  It was Christmas party time and the venue was the QE2 Departures Hall,  Scott and I were really excited as we drove down the pier towards dock gate 4… The kids were not that bothered!  As soon as we arrived they both got excited because the disco was on, the face painters were at work and there were lots of tables of food ready laid out. 

Mia opted for the “Alley Cat” face paint which looked gorgeous. 

Harvey went all patriotic and looked …. red, white and blue!

The party was good fun with entertainment from “silly Scott”  (how appropriate), a disco, party games and even Domino’s Pizza for tea.  To top it all of there was a massive raffle (which we didn’t win on) and then the arrival of Santa who had a present for everyone.  We had to rush to get our ferry home and didn’t Mia to bed until gone 8pm so it was a very long day but we had a great time.

Finally a successful visit to Southampton…

Friday, December 5th, 2008

Mia finally got to have her “magic sleep” that has been postponned for a couple of weeks now.  She was a bit nervous this morning and became tearful when we went into the anaesthetic room so Mummy had to sing “when Santa got stuck up the chimney” whilst she was put to sleep, Mia managed to join in through her tears and made the doctors and nurses laugh.  She successfully had her bone marrow aspirate and lumbar puncture with intra thecal chemo done and was in recovery within 30 minutes having a well deserved sleep.  When she woke up Mia was presented with a christmas gift from some students from a local school and as she had been such a good girl I let her open it straight away, she was delighted with her Hannah Montana Pen set.  Next she had her IV Vincristine (chemo) straight into “baby snake” and had some blood samples taken (also from “Baby snake”) she is not bothered at all when her central line is used which means these jobs take very little time.  By 12.00 she was finished with her treatments and we were homeward bound.  Just got to get through the yucky weekend medicine and 5 days of steroids now…  We are going to Pizza Express (again) for tea tomorrow for Henry’s birthday, then the Piam Brown Ward Christmas party in Southampton on Sunday so it’s going to be a busy weekend, I hope Mia’s steroid grumps don’t set in till Monday! 

The Christmas Tree and many hundreds of lights will be going up on Monday as Scotty has almost finished painting the lounge, I am very excited.

3rd December… Still not been to Southampton!

Wednesday, December 3rd, 2008

Mia’s was still coughing quite a lot on Monday so I telephoned Piam Brown and arranged to wait until the end of the week for her Bone Marrow and Lumbar Puncture.  We made a quick trip to St Mary’s on Monday afternoon just to get her reviewed because she has had her cold/cough for 2 weeks, she was of course very well behaved and it only took about 10 minutes for the doctor to do a full check-up, eyes,ears, throat, chest, tummy etc and she is fine…. No infections here!!!

On Tuesday Mia went to Nursery and went on her first ever school trip to the post office, she really enjoyed it but did get quite tired and had to get in the pushchair after 20 mins of walking around.  Nursery staff were of course well prepared so this wasn’t a problem. 

It’s Wednesday today and Mia and I have been to Marks and Spencer’s for coffee with Sam, Henry and Bella followed by another quick trip to children’s Ward for a review.  Mia had a temperature of 37.7 C at 10am just before we headed into town, by the time we arrived and met Sam her temp was back to a normal 36.5 C but her central line site was quite red so I decided to call the ward and pop in for a quick check.  She was a star again, being very co-operative and after having her line site checked and a few other observations we headed back home to collect Harvey from School.  Scotty has been painting the middle room (lounge/playroom) which I decided on Sunday night desperately needed painting before Christmas!!!! 

Mia and Harvey are both very excited about Christmas especially as I got the decorations out of the loft yesterday and we have decorated the fridge with snow flakes.  Mia is in bed now and for the second night in a row has settled fairly well with not to many demands for just one more drink, cuddle, kiss, tickle, story you name it!!!   The bribe of the playmobil advent calendar is clearly working!

We are going to Southampton tomorrow afternoon where hopefully Mia will have her Vincristine (IV Chemo) and then after a night in CLIC Haven she will have her Bone Marrow aspirate and IT (intra-thecal via Lumbar puncture) Methotrexate (chemo) on Friday morning and we have to start the dreaded steroids again for 5 days