A quick visit from Uncle Bwad

Uncle Brad (Bwad) came to visit his favourite baby niece, because she is so clever and he misses her ssoooo much..

Allegra is up at 5.30 Monday morning crawling around the house calling out Bwad.  Every plane that has flown over us in the last few days, it's Bwad.

Bwad is going to fix everything, all Allegras toys that need batteries, Bwad is going to fix us.  His hugs are the best, his words are comforting and sincere, his presence is missed.  Oh we love Uncle Brad.

We all had a lovely time and thoroughly enjoyed our time together.  Ma Mar loved having her youngest over.  I was comforted and felt cured for a few days.  Allegra just loved having one of her Uncles there to fuss over her.  We ate out, fed the ducks and just hung out.  Thank you Sissy for loaning him to us.

Monday night was dynamic.  Uncle Scott came over with Allegra's cousins and she had a fabulous time.  Mum had her kids together and her grand children and she was in her element. 

All good things must come to an end and the end came and we were all sad. Until next time.  And next time Aunty Sissy is coming.

Tests, Results, Tests, Results, Tests, Results

I lay in bed and think is it the last night before we are admitted back into hospital.

I cherish our time together at home in the luxury of peace and privacy.

I enjoy spreading flour and making hard scones with my baby.

I love the freedom of walking wherever we like whenever we like.

The fear of going back into hospital.

My poor little Allegra has been having tests after tests, once again.  Blood tests, Ecko Scans (heart ultrasound), liver and full abdomen ultrasounds. She had  a double bone marrow biopsy on Tuesday, anterior and posterior on her left side.  We were hours in recovery because my little treasure would not stop bleeding due to low platelets.

Everyone was extremely supportive saying to me we hope this will give us some answers.  I too want answers but only the right ones and no bad news.  I can't handle any more bad news.  Please no more.  Allegra has been through her fair share plus more and does not deserve anymore.  My little sweetheart has had enough and so have I.  Give us peace and leave us alone to enjoy our healing time together.  Let us heal.

Friday finally arrived and we took our time getting to hospital.  We didn't have a set appointment time, Dr Marty was coming off ward rounds to see us once we had bloods taken.

Little Allegra was not happy at all to have a finger prick even with her favorite pathologists there to distract.  I was thinking is this saying something or was I reading far to much into it and fearing re-admission.

Everyone commented on how well we look, I covered up my dark sunken eyes with a little makeup and of course Allegra looked gorgeous in her outfit and specially chosen hat.

Erin met us there, Mar Ma wasn't far behind us and daddy was waiting.  We nervously go in and Dr Martys carefully selected words were "so do you want the good news or bad news first?" This is how Marty rolls.  "just tell us I said, no games today".

Allegra does not have any Leukaemia.  Her marrow anterior and posterior showed less than 1% of cancer cells.  This is regarded as Remission if there is less than 5%.

In her marrow there is fibrosis and a lot of osteoblasts (bone cells).  Marty's hypothesis is that Allegra is trying to recover from the fractures and leukaemia and her little body is producing a lot of osteoblasts to repair the bone trauma that was caused.

To be honest I could not absorb much more after that, I recorded in my mind the news I wanted to know and after that I only saw Dr Marty's mouth move.

Euphoric is the feeling that I was overwhelmed by.

I looked at mum and her shoulders sunk down, her eyes filled with tears and she turned to her little munchikan Allegra and said my clever little girl.  I remember kissing and rubbing my irritable baby girls back and looking over to Erin and with a daze and said thank god.

There is still an unknown reason at this stage  why Allegra's liver function is far too high.  She has had blood tests now looking for infection, virus or bacteria.  Her original Mucor wound at the back has started to breakdown so maybe the liver is relative to this.  We ave an appointment with the Plastics Team on Monday morning along with a Day Oncology appointment to get liver results.

We left the hospital and Allegra and I came home to, just enjoy ourselves, enjoy togetherness at home, enjoy the result, enjoy my little family and my family who Allegra and I love so much.  My loving mum (Allegras Ma Mar), my gorgeous brothers, the best sister in laws and my beautiful nieces and nephew shared the excitement with even my beloved youngest brother coming over  from Perth to see his very clever niece. 

My ever so thoughtful Sissy and brother sent us 3 girls a hamper each with luxury, pampering items, books and a hoot hoot (owl night light), which Allegra adores.

Just Another Couple of Worrying Weeks

How many more can a middle aged, single mother, distressed damsel take?

We don't want to do this anymore.  Sleepless nights with the unknown outcome.  Too many What if's, constantly racing through my mind and reliving the "I don't know why" and "she is a mystery" scenarios.

After another tough week waiting for the bone marrow biopsy result I am happy to announce that my little Allegra is doing extremely well and is microscopically still in Remission.

                                     Allegra and two of her favourite people from RCH

Allegra had her bone marrow biopsy Thursday fortnight ago.  While we waited to go into surgery, Allegra had her two favourite people from RCH entertaining and distracting her, Beth ( Music Therapist) and Olivia (Play Therapist).  It was hard and sad carrying her away from this pleasure  into theatre.  The fear and uncertainty of the big stainless steel bright room with many people looking at Allegra bought familiar memories instantly back to her.  She cried tears and said no, no mummy even finishing with a pleeease.   I whispered our mantra in her ear and fortunately she was asleep quickly and then, we waited and waited.  Waiting is the hardest and an hour goes for hours.  Mum and I talked nervously about nothing really.   I am sure I have mentioned this before, that it does not get any easier.  It still breaks my heart laying my baby down once she is asleep, turning my back and walking out leaving her behind in the hands of others.

We were back in on Monday for the long awaited results from the biopsy which was "microscopically remission", Dr Marty announced.  With Allegra's type of Leukaemia they can not tell us whether all cancer cells are gone.  I prepared myself (if that's what you can call it) and asked Erin (one of my favourite people at RCH) to be there for the result.  Erin is a clinical psychologist working in the Cancer Centre at RCH and she has been a comfort and blessing to and for Allegra and myself.

Phew with the result.  But then, Allegra needed blood tests to check all her counts and Dr Marty was going to call me that afternoon when they came in. I was shattered and very concerned to hear the decrease in her blood and platelet counts.  This is not good and it can also be a sign of relapse.  Dr Marty says we will repeat them on Friday.

2 weeks ago

Haemoglobin       99

Platelets               243

White cells             5.9

Neutrophils           3.55

Monday

Haemoglobin         86

Platelets                 97

White cells              9.4

Neutrophils             5

Should be

Haemoglobin         105 - 140

Platelets                 150 - 400

White cells              5.5 - 15.5

Neutrophils.                 1 - 5

So during the weeks we have kept ourselves busy and preoccupied while we waited for Friday to arrive.  Allegra has been just gorgeous.  

                                            "Faster and high in the sky" with Ma Mar

We have managed to reduce some of her pain and anti-nausea medicines and begin weening her slowly from the opioids.  AND Allegra's hair, eyelashes and eyebrows are beginning to grow back.  Very very cute.  We will have to go shopping for hair clips soon and I can't wait for that time.

                                                      Feeding the ducks (and herself)

                                                          Early morning power walk

We have fed ducks, been shopping for more books, walked the streets in the wee hours of the brisk mornings, conquered playgrounds and had a great time doing it all.  Allegra has been to Music Therapy with Bec at Challenge House.  So far she has had the class to herself, already having privates. I love our simple but complexed life (make sense?) and I just love being at home with my little Allegra enjoying our togetherness.

                                                 Music Therapy at Challenge House

Back into hospital on Friday for the repeated blood tests and we waited there for the results.  Again her blood and platelets are low but had come up a little.  Dr Marty says we need to repeat them again on Monday.  So we wait again.

Haemoglobin        90

Platelets                112

White cells            8.9

Neutrophils           5.34

Back into hospital on Monday for more repeated blood tests.  Arghhhhhh we are sick of that place but much prefer being home for a few days before we have to go back each time for day visits.

                                                          Day Oncology with Dr Marty

So we repeated the bloods again and again they were too low.  Dr Marty can not give me a reason as to why and he is meeting with the Haemotologist to discuss my little Allegra.  Another blow was that her liver function is far too high, this is also concerning and another mystery to the doctors.  So the standard response, "come back and we will repeat the blood tests next Monday".

Patience Jacqui- I was told this very early on in our ordeal at the hospital.  I think I have learnt a lot of patience and thought i had mastered it but how many times can I be tested on this. My patience is wearing very thin and my body is one tense mass.

Haemoglobin        89

Platelets                94

White cells            8.4

Neutrophils          4.87

Thank you to everyone for your continued thoughts, wishes, crossed fingers etc and messages during these tough weeks.

Allegra's Medical Crew

Who is your favourite nurse?  They ask.........

Allegra says Mel (Melinda).  Mel did Allegra's dressing changes and saved her when she was coming off Midazolam badly.  

It used to be Caitlin and Jess.  We believe its ok to have a few favourites, depending on who is around at the time.

Allegra has hung out with Jess in the very early hours of the morning at the nurses station googling ABC for kids.  Jess has taken Allegra down to see the fish before the sun had come up.  I could leave Allegra with Jess while I grabbed a coffee and they had a lovely time together.  Jess and Allegra are cheeky together.  Allegra sends love messages, blows kisses and waits for her outside transplant to wave.  Allegra does get very excited to see Jess.  Jess makes everything ok and "better".

    Nurses Carly, Rita and Corinna                            Nurses Hannah, Corinna and Carly

Caitlin has also babysat Allegra while I get coffee.  They cuddle and watch YouTube.  Caitlin teaches Allegra Italian, ciao ciao.  Allegra gets very excited to see Caitlin, blows her kisses and calls out for her and pats her face with tenderness.

Allegra's nurses are fantastic.  She has such a lovely individual relationship with them.  She remembers all their names and when she is well she calls for them on her microphone. 

Cuddles with Nurse Leah                              Playing Gotcha with Nurse Marnie

               Cuddles with Nurse Caitlin                              Hanging out with Nurse Jess

 We love Emma (Miss Allegra), Marnie (Gotcha),  Jess and Jess, Caitlin, Mel (Sharpie) and Mel, Steph, Anthea, Michelle, Ella, Dianne, Karli, Leah, Grace and Grace, Kara, Bridgette, Amber, Emilina, Ali, Georgia, Felicity (Blonde Flick), Nightshift Jacqui, Kristine, Abbey, Nicole Bennett, Sophie, Kara, Holly, Mei  Ling, Alice, Chantelle, oh my goodness there are so many yet very few we don't like.  We are not fond of them because they either don't talk to Allegra and not even try to relate to her, give Allegra wrong medicine or the wrong way, treat us with disrespect or come in and wake us up in the middle of the night, unnecessarily.

My little Allegra is always so obliging for her doctors to examine her, she assists when she can making their job so much easier.  She has touched their hearts and has even had her Oncologist dancing for her.  

Assisting Dr Di

                                                          Assisting Dr Marty

Not such a pretty sight to see Marty bopping about with her daddy along side him.  But then the things you do to put a smile on a little ones face when everything is so grim.

And then there are the nurses from Platypus (Orthopaedic) 4th floor.  We will never forget Rita, we love Rita.  Allegra would call out from her room in the early hours of the morning when we needed 4 people to help do a nappy change.  Rita was the best and Allegra knew it.  Then there was Yoon (Yoonie), with her experience and wise words she was invaluable.  Especially at the time of diagnosis, she told me whatever happens I need to stay strong for Allegra.  Allegra needs me to be strong and then she will recover.  Thank you Yoonie,  I didn't forget your advice.  Carly was a gem, we wanted to win tattslotto so we could employ Carly as our full time nurse.  

Allegra and Carly - our gem from Platypus Ward

Carly made Allegra's name bunting that hung beautifully on her bed frame then above our bed at home.  So sweet.  Everyone knew it was Allegra coming to surgery by her amazing decorated bed.  A lot of nurses contributed to this masterpiece.  Corrina was another favourite, Allegra taught her Auslan signing then Corrina would make up her own, thumb up - no worries.  Hannah was awesome too.  The girls took time to come see Allegra when we moved to Kookaburra and they are part of Team Allegra.

And Leo Donnan (Chief of Surgery - cant get any higher than that), he came to review Allegra on many occasions, he is a very gentle man with a great touch.

Professor Kerr Graham, what a another lovely man.  We always felt safe when Prof was there.  He called Allegra "little Allegra". Curtis was a gem, he never rushed us and was very thorough and Ash - Ash was our angel.  Ash made everything alright, she was there to move Allegra in surgery, she is one talented lady and we were so lucky to have her care for Allegra.  We cried many tears when she left.  We love Ash.

Ash

We even have our favourite finger prickers (pathologists), Joanne, Debbie & Hoda.  Allegra chooses her finger and asks for a dinosaur bandaid, she has a little cry then it's over.  

Finger Pricks

She has bought tears to our eyes at times when she pats the pathologist's arm and says thank you when it is finished.  My goodness could you get any cuter?  We do have our least favourites and either I choose not to have it done or I ask, "baby do you want a finger prick today?" She responds looking out to see who it is and says "no", innocently.  I support her and say no thanks not today.  Love it!  She even knows who we don't want, they had stopped coming and asking.  They soon got the message.

I want to thank each and every one of them for their good care, being there for us and supporting us in the most horrendous time in our lives.

Allegra has certainly made an impact on many nurses lives. And doctors and professors too.  For what she has been through she will never be forgotten at RCH.

Here is how some of the medical staff see Allegra:

'You are ridiculously cute Allegra'

'Aww you are such an amazing little girl'

'You are so good Allegra'

'You are so brave Allegra'

'I have seen thousands of children in my time but I have never met such an amazing little fighter like your Allegra' - Professor Kerr Graham 

'I want to take you home'

'Allegra you can come home with me'

'Are you sure she is not 5, she is so clever'

'You are cute, so so cute, just the cutest'

'She is very aware for her age, she is an old soul'

'I want to eat her up'

'You are little bit cute Allegra'

'You are very wise Allegra'

'I love how fighty she is'

'You are very clever Allegra'

I can not buy or write anything that would show my greatest appreciation to all the medical staff at RCH.  The only thing I have got is my massage expertise and when I can I will be taking in my chair and give all the staff a seated well deserved massage.  I know they will appreciate that.  Who wouldn't?

"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

Done and Dusted!

As Allegra's blood counts skyrocketed and the next couple of days were going to be lovely, we decided our time here (I can now say there) was done.

We got the all clear from our Oncologist and Doctors that we could go home.

It took no time to finalise the logistics and I started to pack, at 7am on Wednesday morning.

All appropriate medical staff came to review Allegra and myself and give me a going home plan.  My little Allegra was so happy, people would ask, "how are you today Allegra?"  Her courteous reply was "home".  Bless her she was so ready.

She had a lovely morning sleep as I met with the appropriate medicos then a bath to wash away hospital ewwww, picked out her going home clothes and waited patiently.

The time had come.   The car was packed and we were ready.  So ready.  I had no fears, no doubt, no anxiety, no concerns, no worries, I have never felt more ready.

Over the months we would sit at our window and watch the trams go by.  I would ask her "baby when we go home shall we catch a tram or run?"  Her response would change each time.

There were nurses, doctors, admin, sponsors, volunteers, Mar Ma and daddy all there to witness this long awaited occasion.

With a lot of fuss and cheerios Allegra just wanted to go.  She bye byed, ciao ciao then yelled to me "Mummy run".  Oh my, I ran.  We ran.  Daddy ran. Mar Ma walked briskly.  We got inside the lifts and exhaled.... the feeling of relief and disbelief that our time is done.  As we drove out of the car park leaving the RCH complex I brushed and flicked off all RCH energy and hospitalisation.  My little Allegra (as she does) copied her mummy and was flicking the hospital out her window.  Bless you sweet child of mine.  You are an absolute champion. There is no medal that is grand enough for what you have done.  I am so proud and happy right now.  She tells me she is "better and happy".  And that makes me better and happy.

Allegra again settled into home with ease and excitement.

So here we are at home in remission, chemotherapy completed and time to heal our souls.