Saturday, 21 July 2012

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.

Friday, 20 July 2012

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.

Thursday, 5 July 2012

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

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.