Thursday, 24 May 2012

Today - and Tomorrow!

Allegra is doing amazing!!!!

'Standing on her own'      

Her counts are coming up, quicker than anticipated.  We are slowly reducing her medications ie. pain, anti-nausea, anti-anxiety, and chemotherapy is completely finished.
Allegra will need a bone marrow biopsy in a couple of weeks to check the health of her marrow.  Blood tests will continue weekly, then fortnightly, then monthly, and so on for 5 years to determine no relapse.
Allegra's vitamin D levels need to come up in order to have her next infusion of Bisphosphonate (zoledronic acid).  This is an IV infusion required for bone pain and bone growth that has had trauma.  It is a course of every 4 months for 2 years.  When Allegra's Hickman line is removed from her chest (in approx 1 month), she will need a cannula and this can be done in day oncology.
The Liposomal   Amphotericin (anti fungal) IV needs to continue for some time so Hospitals in the Home will be coming in the evening each day.

The Chief of Surgery - Leo Donnen came today to view Allegra and he said the layers of bone growth is progressing and structurally they anticipate she will correct herself in time.  It could take a couple of years.  Play therapy is the best therapy and it will be like having a baby again, learning to crawl, weight bear and walk.  All in her time.  He only needs to see her 3 monthly for X-rays and progression.  Down the track they will look at the different leg lengths, if they need to do anything.

Allegra's wound has nearly heeled over.  We still have dressing changes every second day but it has just a padded dressing.  And we can have a bath.  It has been 6 months since Allegra has been in a bath.  (We have bathed her though.)

Allegra is interested in food again.  We have little picnics.  She dips her finger in foods, licks, puts food to her lips, tastes small amounts and even swallows.  Some foods are "YUCK" and some are "Mmmmm Yummy".
It will all come together and the Speech Pathologist say this is normal for a child who has been here for this long, not eating, on chemotherapy and very ill.

My little Allegra has been doing a fantastic job coping with the final cycle, healing, growing and developing.  She is an absolute champion and has even amazed the medical professionals as to how well she has recovered.

So this brings me to shout it out loud and celebrate that............
We are coming home.  Home next week.  Fingers, Toes, Arms and Legs crossed.

13th February 2017 = CURED

Tuesday, 15 May 2012

Mothers Day

I am privileged to be the mother of a gorgeous little girl - Allegra Mia.  I feel honoured and  count my blessings everyday to be a Mum - Allegra's mummy.

The best mothers day present was waking up beside my little Allegra.
I was able to have breakfast in bed.  Allegra stayed in bed watching kids shows while she waited for me as I ran around to the kitchen, made a cup of tea and tin baked beans on toast.    We had a beautiful day together alone, exactly what I wanted and needed,  just the 2 of us together.

I was completely spoilt - Allegra made me a card with Amy (art therapist), Mum bought me purple pyjamas with butterflies from Allegra, a card decorated and written on by Allegra with Mum's assistance, a card from mum and a card from Allegra via Aunty Julie in Perth, a card from the Fewson Family and chocolates.
 How beautiful are my nieces?  Charlotte bought me soap from the mothers day stall at school and Bree bought me a mascara. My loving brother Scott bought my 2 treasured nieces in and both Allegra and I were happy to share our day with them for a couple of hours.  My gorgeous friend Kirky bought me in a bag of makeup and creams and slippers.  These were appreciated so much as my SK1 1 lotions and potions were thrown out by the cleaners,  best I leave it there.
My thoughtful friend Jo bought in a bottle of wine, (disguised), a book and box of chocolates. They go perfectly together and did.  I also received many beautiful sms's from friends and my beloved brother Brad.  People are so thoughtful, generous and kind.  Thank you for making it the best Mothers Day I have had.

I realised that a lunch at my favourite restaurant or any gift in the world could ever measure up to the greatest gift. 
The greatest gift is right there in front of me, in my arms - Allegra.  
Thank you for choosing me to be your mummy.

Friday, 11 May 2012

4 down none to go.

The evening of Monday 7th May 2012 Allegra's chemotherapy - Mitoxantrone was hung for the final time.  Yes chemotherapy has finished!!!!!
My champion daughter did it.  Mum and I had a moment of tears, happy ones  remembering the very first cycle and how far we have come.  We are nearly there and as brother Brad would say we are on the home straight.  Nurse Michelle was again our symbolic nurse, she had the pleasure of hanging and then removing the empty bag of blue chemotherapy.

Although this was a very intense cycle Allegra handled it very well.  Her vomiting was controlled by numerous anti-nausea medicine and we perfected the timing of it.  She only vomited on the first few days.  Did I mention champion daughter?

We are now waiting for a spike in temperature.  As soon as this happens Allegra will start antibiotics then wait for another temperature.  This is "normal".  Allegra's blood counts are dropping and she is expected to remain Neutropenic for 35+ days.  She will require blood and platelets transfusions throughout this time.  She has already had blood and I think by tomorrow she will need platelets.

We are in an air locked self ventilated room, Room 224 and it has a view.  Allegra is unable to come out and very few people can come in.  We are going to be kept busy entertaining and finding enough distractions. It is very hard while she is feeling ok, she wants to walk and leave the room.  She sees people walking by and doesn't understand.  My little Allegra is just like me, wants to be out there being social.  Together we will do it.

Tomorrow and over the weekend we are going to work on Ma Mars mothers day card and learn 1-10 in Italian.  Hmmmmm then we will, ummmmmm read our new books from Randal, watch more YouTube and Wiggles, stick more stickers and count down the days.

Medication Safety Awareness Month!

I feel this needs to be  blogged to get it off my chest and also be made aware of that this practise does happen and I strongly feel the urgency to have it eliminated.

Medicine administration is a basic nursing skill and is taught in the early years of training.  To read a drug chart is not difficult, so I have been told (I wish it was).  So, why are there so many errors???????

Here are a few mishaps that have happened and continue to do so to us here at RCH:

* Medicine given 2 hours early, (I was sleeping) - "I read the 8am as 6am, that will teach me for trying to read in half light".
* Anti nausea - continually given late, up to an hour.  Causing Allegra to vomit.
* Medicine bought in 2 hours early - "I read the drug chart as 11am instead of 1pm."
* Anti nausea/sedation - dosage is 2ml, 2.2ml drawn up.  This is 10% more.
* I asked for Allegra's 7pm medicines, her regular MS Contin did not come but a break through Oxycodone came.  I stopped it before it went in, just in time.
* Doctors leaving medicines off or the prescribed route left off the drug chart when a new chart is written.  This then means nurses not aware of the medicine, I have a sick/miserable baby who could be in pain and I don't know why.  I eventually work it out that Allegra has not been given her medicine because the doctor just didn't write it up.
* Medicine given down Allegra's nasal gastric tube instead of mixed in her feed - causing Allegra to wake up dry-wrenching, gagging then vomiting, "I didn't read the drug chart".
* Medicine given 3 hours late - causing Allegra to be very unsettled and miserable, "I forgot to give Allegra her Panadol".
* Pre-meds written up with incorrect times - causing Allegra to be not sedated on time or procedure needs to be delayed.
* Medicine drawn up 3.75ml and about to be given, it should be .375ml - "it has been double checked by another nurse", I continue to question, doctor checks it, "Oh Allegra would have been pooing all night". 10 times the required dosage.
* Medicines not signed off on.
* Syringes not taken out of pump when drug is ceased - causing new Nurse to come in and turn it on.  This medicine has been sitting in the machine for 12+ hours.
* Was told Chemotherapy will run for 1 hour when I knew it ran for 6hours.  She believed this until I told her to check the protocol before putting it up.
* Given incorrect medicine as a  pre -med to medicine that Allegra is not even on.  Work that one out!!!

April was Medication Safety Awareness Month.  I found this notice stuck up in the kitchen and found it ludicrous.  It was the 6th of April and I counted  5 "human errors".  Maybe it was to start mid month........

I find this unacceptable, neglectful and damn right outrageous. 9/10 is just good not enough when it comes to administering medicines.
I have had numerous discussions with various people (Consumer Liaison Officer, Unit Manager, Clinical Psychologist,  Head of Department - Oncology) to sort this out and to prevent it from happening again to Allegra or any other totally dependant innocent child.  Unfortunately, to date it has not completely been sorted out and there are minimal improvements.  I am horrified, frustrated, tired and am absolutely mortified that these practises happen daily to goodness knows how many kiddies.
What will it take?
When I was at home nursing my little Allegra the correct medicine with the correct dosage was given at the correct time the correct way.  I have not been trained and it is not my profession and I am human and there were no errors made.

All I can say is I am Allegra's advocate. I always will be and I will not stop doing what I am doing and it is lucky I am here taking care of her.
I check all of Allegra's medicines and I try and be here all the time to prevent errors, unfortunately I do sleep.
It has come to the conclusion and realisation that no medicine is to be given to Allegra.  The nurses can draw them up and bring them into our room.  I will check the medicine with the nurse, then the dosage and I will administer it to Allegra.
At least this way I can be assured that Allegra is medicated correctly in the best hands.

Sunday, 6 May 2012

Home Sweet Home

7am Medicines

I kept this one quiet, not intentionally as it came about very quick and unexpectedly.
Allegra's blood counts came up and we had an opportunity to go home before we start a very intense cycle of chemotherapy.  It is our 4th and hopefully the last EVER.  It is called the Intensification 2 and Allegra is expected to stay in hospital for the entire treatment (approx. 6weeks) as it is the hardest one of the four, it will completely wipe out her system and my little Allegra will be very sick and Neutropenic for 35 days from this "good medicine".

We planned on doing not much at all.  We were looking forward to sleep and sleep without beeps, eat home cooked meals, thank you Jo so much for your delicious dishes and wine and tim tams, very much appreciated from mum and myself.  A visit to the dentist was needed desperately to have a tooth filled which I broke while in hospital.  Thank you Ray.   Shower with HOT water, wear different clothes, potter about in our home and walk our streets which are filled with the Autumn leaves.   We appreciated these fine luxuries as we had not been here for 140+ days.
We eventually got away on Saturday at 6.15pm and my little Allegra was very excited as was I and she understood that we were going home.  I asked her "baby where are we going".  She would reply "home".  She fell asleep on the way and we pulled up, she woke and she said "home". Awwwww.  Yay we are home.  I cant believe it, not just for the day or the night - for 9 days!!!

We had many ups and downs.  The happiest of happy times was watching Allegra in her own home crawling around, playing with her toys and discovering what she had missed.  It was hilarious, she crawls and Mum or I were walking behind her carrying her feed pump and bottle.  Allegra says "coming" and when the line is tight she says "wait".  She had us constantly on our toes and we were at her beck and call.
She started to take interest in food and was tasting different foods but very reluctant to swallow.  It has been months since Allegra has eaten.
While at home Allegra chilled out in bed watching You Tube using up all my usage in a day.  I discovered this at night while my little Allegra was spread out on the couch asleep.  A place where I would have loved to be in after a hard day at home nursing.  It was so lovely to see Allegra relaxing and just hanging out.

The downs were really down.  It was heartbreaking and heartwrenching to see my little Allegra suffer with extreme pain, which at times could be constant for an hour.  She grits her teeth, clenches her fists, veins protrude on her perfect hairless head, she shakes, looks deep into my eyes with fear and cries.  It comes on so quickly.  If there weren't any medications due or that I could  give her,  I called Kookaburra ward for assistance or I give medicines early or break through morphine and try comforting her.  She tries so hard to be distracted but the pain is excruciating.  This can not go on, it is so unfair.

Hospital in the home have been fantastic and it is always a relief knowing they are coming by between 3-5pm everyday, to hang Allegra's Lipo Amph (anti fungal).  My little Allegra is such a great help to the nurses, she wants to "push" her medicines and hands them her lines to attach the medicine.  She is so aware of the lines attached to her and coming out of her body.  She takes care of them and has accepted these accessories.

We have had to do 1 dressing change on her bone marrow wound.  The wound has a lot of granulating tissue and this has made the silver dressing move off her wound.  Other than that and her pain management, we have been easy for the nurses.  Thank you Sarah and Debbie.

We had to go back to hospital on Monday for a dressing change then on Thursday for a lumbar puncture with her Cytarabine chemotherapy medicine injected into her spinal fluid and a bone marrow biopsy and trephine, and another dressing change which the plastics team were there to supervise.  They treated the granulating tissue which was growing and used a different dressing.
Allegra on both occasions has not been happy about being there. She cries and climbs up on me saying no no no mummy waving her hand.  It has been a month since Allegra's last General Anaesthetic and I found it very hard carrying her into theatre and laying her down once she is asleep, turning around, walking through the door and leaving her.  You think I would be used to it by is something that I will never get used to.

We had to come back into hospital on Friday and they admitted us.  Allegra spiked in a temperature and the pain was too much for us and her to be at home.  This was unexpected and we were not ready to come back.  Will we ever?  Allegra came good and her pain was managed and we were off again......back home on Saturday.  She was so well we even managed to have a stretch.

Uncle Poo (Paulie), Uncle Timmy, Jo, Jill, Remy, Aunty Nic, Bee Bee and Char Char came to visit while we were at home.  So nice to see beautiful caring  people in our home.

Allegra was not keen and very reluctant being outside, bumping into people in our hood.  Of course people wanted to see her and wish her well but she did not like the attention.  She much preferred staying indoors around her mummy and Ma Mar watching Wiggles, being patted and lying about in the comfort of our home.  All in all we LOVED being home.  Allegra slept so well in our big bed and so did I.

So we packed our bags, Allegra chose her toys and books and back to hospital we go.  Psyched up for final cycle and stint.

Saturday, 5 May 2012

Room 230

Wednesday 2nd May was a day I want to cherish.  Allegra was so well, she was happy, not in pain, playful, cheeky and very talkative.  This was the best she has been in for 6 months.  I have missed her being like this, I have missed the little Allegra that we all know best.  There IS light at the end of the tunnel and this day I finally saw it.  My little Allegra is going to be well soon.

Allegra saw one of her little friends today, Izzy.  We went over to give Izzy her happy 2nd birthday present.  Well it bought tears to 4 adults eyes.  These two gorgeous little girls were so excited to see each other.  They kissed and could not take their eyes off each other.  It hit me as to how much I miss seeing Allegra with her little friends and a wave of sadness came across me as we had to go back to hospital for our next stint.  I wanted to stay and play and I know Allegra would have wanted to also.  But accepting as she is, off we went.  Where are we going baby? "hospital, nurses, doctors".  So so cute.

I found myself settling into Room 230 just a little too well and comfortable, probable because we have been here before (like 5 months) and know the drill.  Our evening nurse says "we are easy customers", little does she know we want a room with a better view.  And the lovely Nurse Michelle was here to re-admit us, Michelle was our very first nurse here at Kookaburra.  Thank you Michelle again for looking after us and our needs.

We arrived back into hospital at 3pm after 10 days of being at home with a few visits to hospital and an overnight stay.
Allegra had a dressing change and her anti fungal IV then chemo began.
She was ok about coming back to hospital and she wanted to sleep with "mummy in the bed".  I was to sleep right beside her and share a pillow.  Anything for my baby girl.