Saturday, 31 March 2012

Round 3

We have started  cycle 3 of chemo.  This round is short and intense.  It goes for 5 days.  Allegra had her first  chemotherapy dose last Thursday, it was Cytarabine (AraC) intrathecal .  Now for 5 days she has Cytarabine high doze IV at 8am and 8pm and Etoposide IV in the morning after Cytarabine.
Allegra has been on these chemotherapy medicines before but the doses in this cycle are a lot higher.  The list of side effects is endless and frightening.

Conjunctivitis - Allegra has eye drops to hopefully prevent this.
Nausea - more anti-nausea medicines that so far have not worked.
Vomiting - all through the night, therefore lots of washing and 2 Masons have proven to be not enough.
Loss of appetite - Allegra is not interested in food at all and has not been for months.
Fever - so far, not.
Flu-like symptoms - more aches and pains, just what she doesn't need.
Skin rash - her little bottom is so red and sore.
Decrease in blood count - so far, it's stable.
Mucositis - this is coming up when she becomes Neutropenic.
Diarrhoea - this is constant and has been for months.
Hair loss - Allegra has a little long strands and is now losing her eyelashes.

And then there are the rare side effects which are horrible and I don't want to go there, and the long term side effects which are yet to come.
It wasn't the best start to this cycle.  My little Allegra has been so unwell and in extreme pain and so sad for her that she was in this state when we went home.  The poor little darling tried so hard to be happy.
Her sleep is broken by vomiting and nappy changes.  The chemotherapy medicines are so toxic that I have to change her nappy every 2 hours.  She is done with nappy changes, she just wants to sleep and I am constantly waking her to change her nappy, put eye drops in, change her clothes and her pillow because of the vomit.  I am still trying to accept chemo as a good thing.  It is horrendous but it is making her better after it is making her so sick.
Make sense???????

Allegra had a X-ray and ultrasound on her abdomen yesterday and it showed nothing that could be causing this pain and discomfort.  Still searching.
Her dressing change was done on Thursday and the wound is "looking good", it is healing to the best it possibly could and the Plastics Team are surprised.  Surprised - I am not, my little Allegra is amazing and I am so proud of her.
Her ability to deal with everything and to heal is extraordinary.
She is extraordinary!  Bless you sweet child of mine.

We are more than half way there.  Yay go Allegra and go Team Allegra!

Home Time

We had a lovely day at home on Tuesday as previously blogged.
Then Allegra slept terribly on Tuesday night because of pain.  I am constantly questioning the doctors and just not accepting we need to ride through it.  My little Allegra should not be experiencing this terrible feeling.  Her bone marrow is getting healthy, her bones are healing, she has blood counts - so why?

Mum and I thought lets still go home we may as well be in the comfort of our home than hospital.  We hoped being home may perk her up a bit.

Nope, it didn't.  Poor little poppet did not move from our laps.  She went from mine to Mums.  She huddled into our chests, shut her eyes and groaned constantly. We could not distract her from her pain and it was not subsiding. I was reluctant to put her in the car and take her back to hospital because the car trip would have been horrible for her.  I was on the phone to the Oncology doctors and they recommended to give her break through morphine, which I did.
At 6pm my little Allegra was comfortable, her cuteness and huge personality started to shine through.  Mum and I were relieved and started to get excited that we would be able to stay home overnight.
Nurses from Hospitals in the Home came and hung Allegra's anti fungal IV medicine (Lipo Amphetersine).

That ran for 1 hour and then flushed for 15 minutes.  My little Allegra played with them and entertained them in her home. Mum and I relaxed with a well deserved glass of wine and watched Allegra settle into home. Ahhhhh to be at home with my baby girl and mums Munchikin.

Allegra said "bed, night night". I asked her which bed and she responded "mummy's".

I tucked her up in bed and she slept the whole night through, even through nappy changes.  It clearly showed that she was comfortable at home and loved being there.  I was thrilled for her that she got a good night sleep. I was up every 2 hours giving her medicine but relaxed and just loved us being in our big bed TOGETHER.  She kept rolling into and snuggling into me.  I cherished every second.  We had to wake her unfortunately to bring her back to hospital at 7.30 am for her pre meds for the dressing change scheduled at 8am.
This went well and we were told that chemotherapy can start tonight so we can go back home for the day.  Allegra is ready to go with her chosen hat and mask on. We were off again - back home.

We had snippets of good times playing but Allegra was unwell, but we nursed her in the comfort of our home.
We did get to go for a walk in her pram through the park and Allegra loved pointing out dogs with their daddy's, aeroplanes and kids running.  The simple things in life are so enjoyable.
My little Allegra was ok about coming back to hospital - I wasn't.
And cycle 3 of chemotherapy started.

Wednesday, 28 March 2012

Leave and Remission

Remission Remission Remission - I love those words.  We are in Remission!!!!
And better still we got to go home for the day yesterday AND today AND if all going well, tonight too. 

Just us 3 girls, 3 generations at home - our home.

I am not sure who was more excited yesterday - Allegra or me.  We packed and got ready to go.  Allegra dressed up in her purple with her chosen hat and bag with Mason in it.  Pharmacy came around, handed over ALL of Allegra's medicines, wow what a package!  The doctors then came to check Allegra over and talk it through, all good.  The psychologist came and asked how I was feeling and what were we going to do - "I feel great, we are great, we will be fine and we are going home to play, sleep, eat and just be".  The Oncology co-ordinator came with tears of joy and gave us a be back time, 7-7.30pm ready for 8pm medicines.
"See you, Bye, See you, Bye - come on Mum, lets go!"

Mar Ma, Alegra and I walked briskly down the corridor, Allegra kept saying she was ready.  Very cute and clever.  I am sure she was ready for a lot of reasons, I do know one though - she was ready for a change in scenery.

My little Allegra beamed in the car,  so much to look at out the window, cars, people, prams, trams.  To be honest I felt a little the same, what a great feeling. Freedom.
Once again Allegra amazed me: she took to home with no problems.  She investigated her toys and then spotted the bookcase, crawled straight over to it - dragging behind her were her formulae bottle and pump and vac dressing pump.  It was a huge and heavy load.  But then nothing surprises me with my little Allegra and her determination.  Does she get that from me?  She was off to read her favourite books.  Allegra has not crawled for months.

Such an achievement and sense of freedom and independence for her.
She still had Christmas presents that she hadn't opened, it truly was like Christmas again.
We slept together in our king size bed, soundly.  No machine beeps, no-one coming through the doors, no noise at all.  It was complete silence and bliss. Gosh I have missed our bed and sleeping in it with my little Allegra, both of us together.

I have a new appreciation for the nurses - drawing up and giving medicines.  Allegra has medicine every 2 hours and it seems to come around fast.  I double-checked, triple-checked and then checked again before giving it to her then went back and checked again.  Something else to get used to but I will.

After a lovely day at home unfortunately all good things come to an end and it was time to leave.  :( Allegra packed her bag with some toys and books to show the nurses and said ready. 
She waved bye to home - again so accepting of her situation.  Allegra knew we were going back to hospital, she was telling us.  We parked the car, got out and my little Allegra immediately said "bye car" and waved.  She is just the  cutest baby and I am so proud of her.  
When we got into her hospital room she was ready to leave again.  She asked for more walk.  Then settled straight away after her tiring day.
Little did she realise that we could be going home again - in the morning.

We are currently waiting for the doctors to come and review Allegra after a very restless night but this is not going to hold us back.  I am confident that I can nurse her in the peace and quiet of our home and with my Mum's help and support.
Allegra's pain and discomfort is her little tummy getting used to the feeds and learning to work again.  So sad as she is going to be very sick with the Chemo coming up, tomorrow that is.  Gotta go.
See you, Bye we have places to go. HOME

Monday, 26 March 2012

The Result

Mar Ma, Daddy, Mummy and Allegra were in our room when Doctor Marty (our Oncologist) walked in and said "we have the results from the Trephine".
I didn't look at him, I looked to the roof, breathed in and heard the words "at this stage Allegra is in remission, she does not require a bone marrow transplant".   We will go ahead and do the next 2 courses of chemotherapy.  This is the best result it could possibly be,  Allegra's marrow looks good.
I grabbed Dr Marty and hugged him, forgetting that he has a bad back and requires surgery.  Oops.  My little Allegra is just so clever and amazing and I am so proud of her.  My goodness I can't believe we have finally received some good news.
Thank you for all your wishes, good thoughts and prayers.  
Allegra and I thank each and every one of you.
I need bubbles!!! Aah those words... "Allegra is in remission" It is lovely to hear the words and not just dream them. We heard the words!!!!

The feed is keeping us in

TPN (total parenteral nutrition) is a nutritional formulae of liquid  containing vitamins, amino acids, minerals and lipids.  It is fed intravenously, fully by-passing the gastrointestinal tract.

Allegra began this form of feeding on 25th February 2012 because she was losing weight.  She did not tolerate the nasal gastric feeding (Pepdite MTC or Nutrini).  She has been unable to absorb it and has had chronic diarrhoea and this was causing many other issues.  Her potassiium levels became very low and she needed iv support.  I was hoping my little Allegra would tolerate this feed quicker so we could have our together time at home.  With all her other  conditions that she is winning against, this showed to be just too  much for her little body.  We did not have choice in the end, as it was becoming dangerous for Allegra.

It can be detrimental  for the liver to be on tpn for a long period of time as the liver has to work quite hard. In order for us to come home Allegra needed to be off tpn feeds.
So they started to increase thenasal gastric feed and this was compromised.  Allegra would scream for an hour then vomit.  Straight after that she would settle and be her happy gorgeous self with her huge personality.  This is so heartbreaking to see as this is meant to be her "good week".  The week of neutrophil recovery and the week before we start chemotherapy and cycle 3 is short and very intense.

Because of the time that she wasn't ingesting, her stomach and bowel would not absorb the nutrients.  We were getting nowhere fast. Until I took over the increase of feed in Allegra's toleration time and we have gone from 5ml per hour to 16ml per hour.  Yay - Mummy and Allegra winning again.
There need to be more tests performed to find out why the uncomfortable pain is persisting.  We have come a long way but we are only half way there.
Home is a long way away and Chemo is just around the corner.

Thursday, 22 March 2012

The Bone Marrow Biopsy

Allegra woke a happy baby this morning Thursday 22nd March 2012 and because she was happy so was I, but behind smiles and playing I was somewhat anxious.  Anxious about today's procedures and the results to follow.
We had a lovely visit from Nicky and Joss and they bought me up my 2nd favorite thing in the morning - coffee - soy latte with 1 sugar.  My favourite thing is hearing my little Allegra call out "Mummy up".   I love our good morning kisses and cuddles and talks.  I miss her so much when she sleeps.  Mar Ma and Nanny Di soon arrived with kisses, cuddles and loads of love.

The doctors came around and ran through today's events:

Bone Marrow biopsy the aspirate and trephine
Lumbar puncture (LP) with her first dose of Cytarabine (chemo) injected intrathecal  L4-L5
Vac dressing change
Stat lock change (internal lines lock)
Nasal gastric tube re-taping

Theatre was going to happen at 11am.  Allegra was ready to go, hat chosen, pretty's on (bangle and bracelet), we danced down the corridor with our medicine pole.   She was giggling so loud and screeching with joy and happiness.  We bumped into daddy and he was happy to see a bright little girl having fun dancing and twirling around.   We were early for theatre so Nurse Kaitlin took us down to see the fish and sharks, we were there for only a short while as Allegra wanted to keep walking.  She doesn't walk, she is in my arms but we call it walking.

We arrived in pre-op and were greeted by nurses that have looked after Allegra in recovery and Platypus ward (orthopaedic), it's always lovely to see familiar faces and they all commented on how good Allegra looks and loved her chosen hat.

The anaesthetist examined Allegra and we spoke about her previous anaesthics and I signed the consent.  Kathy our preference Haemotologist came in and I was very relieved to know that she was performing Allegras biopsy and LP.

Oh no Mason (Allegra's treasured dog) was not there with us.  Quick go get him!  It would have been disasterious if Allegra had realised he wasn't there or we had to go into theatre and then I realised he was still up in the room.  Just in time Mason was in Allegras arms.  Phew!

They came for us, off Allegra and I go into theatre.  Immediately she started looking around and saying no no mummy, climbing higher and higher up in my arms.  I held her close to me and whispered our Mantra as she went off to sleep.  I laid her down, turned quickly away before they put the mask on her face.  I am out of there and ready to pace my grounds.
Walking around my track many thoughts race around in my head, I can hear people talking to me but I pay no attention.  Luckily it was my Mum and other Mum (Aunty Di from Perth), love you both very much and thank you for always being there with me and for me.  I can not rest, think straight or concentrate until I am back in recovery with her.  Time goes so slow and I feel so far away from her when my little Allegra is in surgery.

We go into the waiting room, play scrabble on the IPad and await to be called in.  The door opens "Allegra's parents".  I jump up and head towards recovery then start to run as I can hear my little Allegra screaming.  I followed her scream until I got to her.  She was thrashing about in the bed, eyes shut and screaming.  I put my face to hers, spoke in her ear it's ok mummy is here.  She was so distressed.  I picked her up and held her close to me and she breast fed but continued screaming in between feeding.  I was soothing and comforting her but was also encouraging her to scream it out baby, let it all out. I could not understand why she was like this until I learned she had not been given ANY pain relief as a pre-med, while in theatre or until now and her regular pain relief medicines were nearly due.  What???  This is absurd!!!  Allegra has never had a dressing change without pain relief.  Just because she was asleep and could not feel it - this is not a reason for NIL pain analgesia.  She is going to wake and feel pain.    Allegra's best interests were obviously not thought about or were there too many cooks?  I continually hear "we are doing our best", "its Allegra's best interest we are thinking of".  I am mortified and disgusted.  This was totally avoidable and  not fair for Allegra to have had to experience extreme unnecessary  pain.  Who is responsible for this neglect?  Why weren't her drug charts looked at either by the anaesthetist or her assistant?

She was immediately given her regular dose of Oxycodone with her break through dose and an "equivalent dose of a 10ml bolus" of Fentanyl.  This was administered by the anaesthetist and recovery nurse.
Please note: 
When Allegra was having her dressing changes in the treatment room she would have her pre meds of pain relief 30 minutes prior and 1ml bolus every 5 minutes. I think she only ever had 3mls in total.

Allegra finally settled cuddled up in my arms with Mason tucked under her arm, breast against her cheek and dummy in her mouth.  I breathe deeply in and out and kissed and kissed and kissed her forehead telling her how proud I am and that her I love her to bits. 
It's been 3 hours now and my little Allegra is still sleeping with the occasional snore while I type this to pass time and relieve my anger and frustration.

I await again for results.
Please please please no abnormal cells.

Wednesday, 21 March 2012

Our Mantra

I have always been honest and open to Allegra and explained to her what's going on, what's going to happen and why this is happening.

We have a mantra that I whisper into Allegra's ear while I hold her close and firm in my arms.  Its assuring her that I am with her all the way.  I say this while she is having procedures, as she goes off to sleep under a GA or whenever she has fears or is unsure about what's going on.

You came to me, I came to you
You dream of me, I dream of you
You love me, I love you
You trust me, I trust you
You believe in me, I believe in you
You have faith in me and I have faith in you.

Baby we are strong spirited girls and you will get through this.
You are my miracle and you will recover.

How it all Began - Part 2 Update

Continuing the events of Wednesday 23 rd November 2011:
Cancelling my massage appointments for the day on our way into emergency at the RCH, I was anxious about the real life situation we were in.  I have learnt about myself, that the unknown is what I am always most anxious about. Thoughts and fears flooded my mind.  How many days should I cancel?  What was in store for us?  What were they going to have to do?  What was wrong with my baby girl?
You can not prepare yourself for what may happen or what is wrong and I did fear something.  
It wasn't long before we saw a doctor and he did observations and palpated Allegra's left leg. It was obvious there was definite pain in the upper lateral part of her leg and her hip flexors.  
Allegra was administered sedation and muscle relaxant (Valium) so X-rays so an ultrasound could be performed.  This medication was necessary as Allegra's leg would have to be fully extended at the hip and she was unable to do it, since it was extremely painful.
The x-ray results soon came back and the diagnosis was "osteomyelitis (bone infection), maybe in the joint or just in the bone (femur),  we needed the ultrasound results to confirm".
I felt ill.  What was going to happen now?  How did this happen?  I knew something was wrong and my poor little Allegra had been telling me she was sore and I was too slow.  Massive self blame and guilt soon set in.  Not realistic feelings but felt genuine at the time.
I was relieved initially that it wasn't in the hip joint, the "infection" was isolated in the femur.
Antibiotics needed to start immediately so a cannula would have to be inserted.  What a needle into my baby's vein!  Local AnGel cream was applied to the backs of Allegra's hands and elbow creases and we waited an hour for the local anesthetic to work.  We were taken into the treatment room - I was shaking.  I explained to Allegra what was about to happen and it needed to be done.  Allegra was fine, she just did not like being immobilised.  A cannula was inserted into the back of Allegras left hand. We now waited to be admitted.

So we were admitted into 4 main (the old hospital) in a room of 6 beds, with my little Allegra having a diagnosis of osteomyelitis of the left femur in the upper aspect of the shaft.  Antibiotics were connected up.  This seems like a lifetime ago and I have trouble remembering.  But all I do remember is people coming around constantly introducing themselves from various departments: haematology, infectious disease, orthopaedics, general medicine etc. etc. etc. asking questions and it seemed to be the same questions over and over.  Has she been ill before?  When did you notice something different?  Have you been overseas recently?  Has Allegra been in contact with animals?

Allegra accepted her bandaged up hand and managed to find a way to play, turn book pages and hold onto things.  My clever, resourceful little Allegra made her mummy proud once again.

Friday, 16 March 2012

Day 99

Today I feel very emotional.  I am so sad that my little Allegra has this disease, that she is unwell and suffering pain.  I hate it that I can't take this away from her.  I am her mummy and I am supposed to make her feel better and I cannot.  My baby girl should not have this going on.  She is an innocent little treasure who deserves good health and a happy playful life.

Allegra and I did not sleep well at all.
Let me blurt it all out:

Yesterday we had a meeting with the Oncology Team, Nutritionist and many others.  They were talking about a plan to get Allegra and I home for a few days.  Sounds great doesn't it?  So many logistics to consider. Allegra needs to be on oral pain relief, tolerate her nasal gastric feed and  blood counts recovered.
Her IV opioid needs to start decreasing so we can begin oral pain relief, her TPN (nutrition into the veins IV) needs to cease once Allegra can tolerate her nasal gastric feed and I need to be trained up - that's the easy bit.  I am so excited to be nursing my baby and having her home.

So here we go with the one day at a time; 
Last night we reduced the Fentonyl from 3ml per hour to 2 ml per hour then it was supposed to come down another 1ml 12 hours later.
Her nasal gastric feed (MTC Pepdite) started running at 5ml per hour then increase in the morning and build it up to 40ml per hour.  
Allegra did not tolerate the 5ml Pepdite, she has had loose stools and vomiting.  The Fentonyl has not been reduced either and she is still Neutropenic, her blood counts went the other way.

My baby is doing enough to fight infection, recover from chemotherapy, deal with her disease, grow bone and stay on top of all the side effects from medicines.
I want my little Allegra to do it in her time and not the doctors' time or mine.

So I doubt we will be coming home on Monday.
Btw today is day 99, no wonder I am emotional.

Thursday, 15 March 2012

When and How it all Began - Part 1

 Allegra and I woke as usual on Monday 19th September 2011.  We cuddled in bed and got up but Allegra would not walk or put her left foot on the ground, no weight bearing at all.  I palpated her foot, lower leg, upper leg, hip and she squirmed as I was palpating her left hip flexors and lateral upper leg.  Very concerned I took my little Allegra straight into emergency at the RCH and was seen by a doctor.  X-rays were performed which were painful for her to be in certain positions.  We were sent away with a "sprained hip, no fractures, take Nurofen every 8 hours".  This did not sit right as I know my little Allegra and she had not sprained her hip.  She was unsettled all day and still did not weight bear.  I went back to emergency that evening and was told by the triage nurse that they would not perform any further tests unless she has been not walking for more than 2 days.

The following day I rang Allegra's GP and was lucky enough to get an appointment that afternoon.  Dr Matt listened to my concerns and read up, then read out - Transient Synovitis (inflammation of the inner lining within the hip joint).  It did sound like what Allegra was suffering.
"it should disappear 7-10 days". Ok then, I was satisfied with a more believable diagnosis now.

In that time my little Allegra did stay off her leg, was happy playing on the floor and just sitting.  It did not upset her at all and every now and then she did attempt to walk but was not interested in weight bearing on her left leg.  Allegra did not have any other symptoms.  After 7 days Allegra walked with a very slight limp.  I would massage and do mobility assessments on her and there was a definite difference between left to right and Allegra would not put her left foot in her mouth but right was easy.  Our life continued as normal and our days together were dancing, singing, going to the park, going for lattes and baby chino's and getting out on our bike. Happy days!

Then on Saturday 15th October 2011 Allegra was not happy to walk and complained of "sore leg" pointing to her left upper thigh.  I made an appointment to see Dr Matt and he had not heard of this coming back. He wrote a referral to Mr Mark O'Sullivan (paediatric orthopaedic surgeon).  Again Allegra did not weight-bear for a few days then slowly began to walk still with her slight limp.
We saw Mr O'Sullivan on Monday 14th November 2011.  He looked at Allegra's X-rays and said "yes Transient Synovitis", agreed with left mobility restriction and said if this was still concerning me next year to come back and he would do further X-rays.  Ok, so I was still satisfied with this diagnosis.  We would wait and see.

Allegra was now on Panadol every 6 hours and Nurofen every 8 hours.  Her pain was getting worse and she was continually saying "sore".  I was now becoming quite worried and very unsure about the diagnosis.  I made an appointment again with Allegra's GP on Wednesday 23rd November 2011. We could not see Dr Matt but saw another doctor.  My concern now was that if it really was Transient Synovitis and we had to wait patiently for it to subside, her pain medications were not enough.  I could not have my baby cry in pain any more.  The doctor recommended me to go to emergency at RCH, which I did, with an overnight bag for us both.  My gut feeling was, that it was something more and I began fearing something worse.

Before I finish off Part 1, I want you all to know that my little Allegra in her life had previously not finished one bottle of Panadol.  She was never sick, had only minor colds, never suffered with teething and had only received 1 little surface scratch on her leg (which I photographed, because I was shattered by my babies pure skin damaged).

Tuesday, 13 March 2012

Where We are at Today

Allegra's blood counts have started to recover. Yay!!!!!!! This is what we wait for.
Every morning Allegra has blood taken either from her internal lines or has a finger prick.  Many test are performed but the results I eagerly await for are haemeglobin, white cells, platelets and neutrophils.  If her haemeglobin falls below 80 they transfuse, if her platelets fall below 20 they transfuse unless Allegra is to have a procedure.  To date my Little Allegra has had 8 blood transfusions and 10 platelets transfusions.

Haemeglobin  s/be 105-140 yesterday Allegra was 82 and today is 74
White Cells s/be 5.5 - 15.5 yesterday Allegra was 3 and today is 2.8
Platelets s/be 150 - 400 yesterday Allegra was 93 and today is 130
Neutrophils s/be 1 - 5 yesterday Allegra was 0.03 and today again 0.00

So with Allegra now making some of her own cells she is sort of on her way up. This will continue or should continue but I have learned that nothing is certain or "normal", as you can see by her readings.  Just when you think we are moving forward her little body struggles to go all the way and then her blood counts regress.  My little Allegra has proven to not fall into the "normal" category and if there is a 99% surety then my little Allegra will be in that 1 %.  If there is ever a time in our lives that I want her to be normal or common this is it - I want her to be medically normal and common.

We anticipate that her blood counts will be fully recovered by next week, but we do take one day at a time.  You will hear me talk about this a lot, because this is our life - one day at a time. Before they start the cycle 3 of chemotherapy they will do a bone marrow biopsy, an aspirate and trephine. An aspirate is the removal of bone marrow and a trephine is removal of a small core of bone marrow, which is used to assess bone marrow structure.  It was the original trephine that showed the abnormal cells which gave the pathologist, haematologist and oncologist Allegra's diagnosis.

This brings me to tell you about my new worry, concern and anxiety.
Allegra's protocol (chemotherapy plan) is 4 cycles and it suggests she should be in remission after the 2nd cycle of chemotherapy but they continue a further 2 cycles to completely eradicate any possible remaining cells.  This bone marrow biopsy coming up needs to show absolutely no abnormal  cells.  If there is abnormal cells microscopically showing a bone marrow transplant needs to be performed.  I am not going into this as we don't want to go there.
Please put all your positive energies/vibes into zero cancer cells. 

Sunday, 11 March 2012

Play Therapy

Olivia, the play therapist, comes with different toys to play with Allegra.  Allegra chooses threading colourful  beads and posting toys.  My little Allegra is methodical and precise and remembers exactly the order in which it was done the previous time (nothing like her forgetful mummy).  Playing is an endless challenge with my little Allegra as she is not mobile and confined to our room (4x 6 metres).  Also the fact of  being here for 80 days straight is a constant battle of the minds.
She knows the playroom is just down the corridor and it is heartbreaking trying to distract her from not going for a walk.

Music Therapy

Beth, the music therapist comes to Allegra twice a week (officially) and sneeks in any other time she is free, knowing that Allegra is a massive fan and Beth is always welcomed into our room.

Beth plays music, Allegra joins in with instruments and they sing songs together.  Beth brings props, always a smile and good energy. They have a lovely relationship.  Beth came once to Allegra and won her over immediately by singing "Old Macdonald" - Allegra's favourite nursery rhyme.  The second time they met again Allegra said "eee i eee i oooo".  Whenever Allegra sees Beth or hears Beth's name mentioned Allegra says "eee i eee i oooo".

Beth has played to Allegra in her happy, well playful times, and during painful procedures and scans.  Allegra has also been fortunate enough to have had Beth sing lullabyes to her as she peacefully falls asleep.  Such beautiful and emotional moments.  Beth is a very special talented lady who brightens Allegra's day.

Just the other day they were filmed together and it was played on the in house kids' tv show - Going Nuts with Macadamia. Allegra loves watching herself on television.

My little Allegra responds to music and has done since she was in my tummy.  So to have the wonderful Beth and her music therapy is one of the few uplifting moments in Allegra's stay here in RCH.

Wednesday, 7 March 2012

Another Sleepless Night

Poor little Allegra did not have a good night or day today.  She is very unsettled, restless and in pain.  She is just so gorgeous.  She tells me "sore".  I say "where does it hurt baby", she tells me "there" pointing always to her right knee.  I say "does your tummy hurt", "yes", "does your mouth hurt", "yes", "does your leg hurt", "yes", "does your bottom hurt", "yes". I believe she is sore everywhere but different levels of pain.  There is bone pain from her fractures which would be sharp, bone marrow (leukaemia) pain which is constant and dull, all over yucky pain from chemotherapy and mucositis which can be severely painful.  My little sweetheart is on many different medicines for all these ailments.  Medicines for her disease, medicines for the side-effects of her disease, medicines for the medicine side-effects and medicines that are prophylactics.  My bio-dynamic, organic-fed and natural product baby is loaded with chemicals.  It's hard getting used to these being all good toxic chemicals that are making my little Allegra well again.

At this stage in her treatment as her blood counts are low and she is neutropenic, mucositis occurs.  This happens because Allegra's chemotherapy medicines are killing rapidly dividing cancer cells that are already there and unfortunately this treatment can't tell the difference between dividing healthy cells and dividing cancer cells.  Mucositis is painful inflammation and ulceration of the mucous membranes lining the entire digestive tract.

So I have put our sleepless night and unsettled day down to mucositis.  But the good news is that Mar Ma (grandma) is having a sleepover tonight and I am having a night in the meeting room which is 2 doors away.  I need sleep.  This is the plan anyway.  Let's see how I go.  I know mum will be fine, but will I?
Allegra and I have not slept away from each other at all, ever.
This is Allegra's medicine pole!

Dressing Change

 Allegra had numerous bone marrow biopsies prior to diagnosis and has another one after each round of chemotherapy, to determine the amount of cancer cells present, the pathological appearance and the response to chemotherapy.
Tragically while Allegra was in traction flat on her back one of her bone marrow sites (PSIS) became infected with a fungal bacteria (Mucor).
This created great concern to all medical staff and of course me.  The Plastics Team soon took over from the Orthopedic Team  and Allegra was out of traction, braces and splints off and immediately was supported off this infected area.  Daily dressing changes were being performed under many pain analgesics in the room and the site was monitored closely.
This was at a  neutropenic stage of her treatment so she was and is very vulnerable to further infection.  She had and has no neutrophils (white blood cells that fight bacteria and infection).
Surgery is needed but too dangerous while her blood counts are so low.  We had to wait until her counts slightly recovered and G-CSF (granulocyte-colony stimulating factor) was given intramuscular daily until her neutrophils recovered.
Allegra went to surgery on Tuesday 7th February for a debridement and sealed with a vac dressing, the result was as best as it could be.
The vac dressing change was to be performed twice a week in surgery under GA (general anaesthetic).  This was being done on a Monday and Thursday.  I really hate it when Allegra is in surgery, away from me.  The unknown makes me very anxious, I power walk around the grounds of RCH.  I have my own track.
Allegra has to date had 18 GA's and is becoming well aware of the pre-op room.  Considering she has fasted for well up to 10 sometimes 15 hours by the time she gets to theatre, many medical staff gowned and masked and her mummy leaving her again - she is amazing.
We know that the wound is not going to even begin to heal until she has fully completed her chemotherapy. I want to hear after each change is that it is "stable",  "no further infection", "mucor not present" to date this is what I am hearing.  My clever little Allegra doing all the right things.
We have come a long way since beginning of February, Allegra now has the dressing changes in the treatment room in kookaburra (oncology ward).
My little Allegra is still stable and the dressing changes happen on a Tuesday and Friday, she fasts for 2 hours, no GA and I don't have to leave her.
Later on down the track Allegra will require a skin graft.

Tuesday, 6 March 2012

Starting Our Blog

Today I finally put my fingers to the iPad (which our loved family and friends bought us) while we are here in hospital.  My pen and pad are running out, and it is time for me to get technologically communicative.
Firstly I want to apologise for not answering your sms's, phone calls and emails.  We have appreciated everyone's kind thoughts, well-wishes, support and prayers. It means a lot to us knowing we have been in your thoughts.  I have not felt like talking or seeing anyone during this most traumatic time in our Iives. My focus has been completely on Allegra and her care during all of her treatments and procedures.
If you want to follow Allegra's story of where we have been and what we are up to within the walls of RCH please check back and comment if you like.

Today my little darling has excelled herself once again and was a complete trooper in a dressing change on her PSIS (Posterior Superior Iliac Spine).  She was heavily medicated on pain reliefs and Midazolam which has the similar effect of drunkenness, weird feelings for me seeing my baby in such a state but kinda cute, she had a great time on it!

Every day here is another day closer to us coming home - this is what keeps us going to the unknown date. Our routine is very out of routine.  Allegra could be up all night vomiting (like last night) or she could sleep peacefully until 11am.  This doesn't mean I can leave the room because I cannot risk her waking up when I am not there, amplifiying her sense of insecurity.  Although, while my mum (Kay) aka Mar Ma (Allegras grandma) is here, I do get a break for the odd shower, coffee  run and blog post.  Bless you Mum for being there for Allegra and me.  I could not do it without you, your love and commitment to us.  We will be forever indebted to you.