"faster and high in the sky"

Home has been fabulous.  Loads of giggles and fun have been had.

Allegra and I have settled back into home with ease.  Mar Ma has been a wonderful help and great company to me.  I used to envy Mum coming home from the hospital of an evening, I wanted to be there with her, enjoying our girlie shows together over a glass of wine and home cooked meals.  Well we are making up for it now.

We have spent our time going for short walks to the park.  Allegra has been going on the swing and going "faster and high in the sky".  The laughter is infectious and so wonderful to hear.  Who would have thought over 6 months of not swinging would bring so much long awaited pleasure.  We have had our first "toddler tantrum", when it was time to leave the park.  Not nice, but normal, huh?

Allegra has been enjoying food, trying lots of different textures and tastes.  Her favourite foods are Tahini, Avocado, Chicken, Rice and of course baby chinos.  The staff at Dench Bakery are happy to have us back.  There were many tears and my little Allegra had not forgotten to ask for her coffee (chino).

We have had and do have regular visits to the hospital for Physio, Plastics Clinic and Day Oncology.  Allegra has surprised the Physiotherapists with her ability to crawl, pull herself up and learning to weight bear with flat feet.  Plastics was great news for us, her wound is doing really well and at this stage there is no more dressing or skin graft required.  What a relief, no further surgery and no admission.  We are at Day oncology for her line dressing changes and weekly blood tests, which have been good results.  Allegra has put on 200 grams and is tolerating her nasal gastric feed.  We are booked in for a bone marrow biopsy on Thursday and fingers, toes, arms and legs crossed for a continued remission result.  I am slightly worried as Allegra has been saying "sore legs" at night and this brings back terrible feelings and worries as this is what she was complaining about back in November when this nightmare started.  Unfortunately there has been a tummy virus and a lot of kiddies in Day Onc are sick, so if one gets it they all get it and my little Allegra has got it.  This only happens to the kids that are immune deficient.  They do spend many hours still in hospital together as out patients. It is also lovely to see lots of the other kids in Day Onc doing so well.

We are devastated to hear the passing of a few kiddies that we have spent time with and their families in the Kookaburra Ward.  Their lives were way too short and it is totally unfair.  It is saddening to know of our other friends being re-admitted for relapse and heartbreaking to know of our dear little Minni in ICU on life support.  Our sincere wishes, dreams and hopes that you all get better soon so you can live out your dreams and enjoy the simple things in your lives.

Allegra has been enjoying baths in the lounge room, watching Kids Shows or having books read to her.  Very luxurious.  This is a massive milestone as my little Allegra is very insecure about being bare, exposing her lines and wounds.

She also feels more secure while in the pram with sunglasses on, blanket on, hat on and pram hood up.  My little Allegra is like a princess hiding from the paparazzi.

                                                              Hiding from the paparazzi

We have had Allegra's BFF's (Ashika & Bodhi - BoBo) over.  These three gorgeous little ones have not seen each other for over 7 months.  They played beautifully together and accommodated Allegra's feed bottle, carrying it for her as she crawled around.  It's a shame I didn't get a photo of Ashi with Allegra but the gorgeous memory is imbedded in my head and heart.  Such warm feelings of our life getting back to what it was pre-illness. The kiddies playing and Kirky, Indu, Troy and I catching up on where we left off.  Love love love our times together.

Allegra now has a toy box which is loaded with toys which she gratefully received while in hospital and for her 2nd birthday.  Money was given to Allegra for her birthday so we could put it towards a toy box..Our family and friends showered her with gifts and now she is well enough to really enjoy playing with them.  Thank you to everyone that has contributed to filling the toy box.  We had lots of fun putting the box together and Allegra one by one put the toys in.

In a nut shell our home life is wonderful with no routine, no crowds and my baby back in my arms demanding skin contact, sleeping right on top of me, me not out of her sight, not talking to anyone, totally physically and mentally attached to her mummy and being at her 100% beck and call.

little fingers crossed

A Beaded Journey

You may have noticed beads around Allegra's and my neck on the Done and Dusted post,  this is  "A Beaded Journey".

The Beaded Journey is sponsored by Koala Foundation (caring for our kids with cancer) and Comfort First Therapists (a program that promote coping skills) offer beads and guide the child with their journey.

The Beaded Journey is designed to tell the story of each child's unique and personal journey through their treatment.  Colourful beads represent the many points both medical and non-medical, along the treatment path.   Each child is given a leather cord with their name as well as a bead representing their diagnosis and then collect beads along the way.

When I was first introduced to this by a beautifully-natured, bubbly lady (Kari Peters), from Comfort First, I thought what a lovely idea but I did not think it was for us, my baby is far too sick and didn't have the head space to do such a thing.  She showed me different beads and I remember so clearly pointing out a square one with coloured stars and asked "what is that one for"? She replied "end of treatment".  I soon became disinterested in the whole idea,  I saw no end of treatment, we were just starting and I was still in shock with how ill my baby girl was.

There was a time while sitting for hours in the isolated room that I began to write down every procedure, scan etc.  I asked Kari to come and see us and to start putting the beads on.  Allegra at that stage was in traction, flat on her back, sick with the first cycle of chemotherapy and I thought it could be a good distraction for us both, "to string prettys". 

We would see Kari at different times and as Allegra became more well she showed enthusiastic interest and looked forward to the bead time.  There were days that Allegra just did not want a finger prick or X-ray or dressing change and I began encouraging her by mentioning you will get a ?????? bead for this.  This worked for some time until she had so many beads that an extra one for a finger prick wasn't exciting anymore.  She had many already and my smart little girl weighed it up.

My little Allegra soon learnt what bead was for a particular treatment or procedure.  She would point out beige is for chemo, bumpy ones are for finger pricks, red ones are for blood or platelets, car is for home, heart is for diagnosis (kaemia as she says).

The kids would have them hanging from their medicine poles and they would compare beads whatever their age is.  When kids saw Allegra's they always commented, wow she has so many, I guess this tells the story of what she has been through.  The amount of colourful beads before her red heart (diagnosis bead) is heart wrenching, I still to this day find it very hard to fathom the trauma that my little Allegra endured. 

So when we ran out of hospital on Wednesday the 30th May (Aunty Sissy's birthday) it was significant that we wore our Beaded Journey as a massive part of our journey had just ended.

I was delighted and it was an extremely proud moment to finally put the square bead with colourful stars on it.  Tears of wonderment ran down my face.

Allegra's Beaded Journey (so far) consists of:

20 General Anaesthetics

28 X-rays, Scans

26 Blood, Platelets transfusion

68 Finger Pricks

71 Dressing Changes

32 Days of Chemotherapy

and special beads for many milestones achieved and memorable occasions.

Allegra's 2 metre string of prettys will end on the 13 February 2017.

What bead will be for cured?

Sent from my iPad

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

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.

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.