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. 

Happy Birthday

It's my baby's Birthday!!!!!!   Happy 2nd Birthday to my little Allegra.

It's a purple party in room 214 at the RCH.  It's a bitter sweet day but I will cry happy tears, not tears of sadness at the circumstances.

Unfortunately, this year little Allegra will not be celebrating her 2nd birthday with her friends.  But don't you worry kiddies, Aunty Jacqui will make it up to you all next year for the no. 3 birthday party.  This year Allegra will be celebrating with her family and nurses and doctors and other RCH staff.

Allegra had a beautiful sleep last night, thanks to her new pain analgesia.  She woke this morning at 5am.   And I was ready and waiting patiently for her to call out "mummy tuddle", but that was not to be, I heard a poo explosion then "mummy, poo".   I was so excited to wish my baby girl a happy birthday and to see her expression when she looked around our room.  She noticed the balloons at the end of her bed and wanted them with such delight.  I asked her who's birthday is it today and she pointed to herself and said "Llegra".  I sung happy birthday to her (remember we have been practising) and she bopped along and said "hooray" and told me she was "happy".

Mum and I were up last night decorating our room with streamers and balloons, purple of course with a touch of white.  I wanted Allegra to feel straight away that this is a different day to any other day.  Today is going to be a happy day - Allegra's happy birthDAY.

We are boycotting finger pricks, dressing changes, X-rays and scans.  This in the end did not happen, Allegra had 2 dressing changes and was not happy about either of them.

Balloons and more balloons arrived from Stella and Lilly and they even played and sung happy birthday.  Allegra loves them and they fly high in our room against the window. 

3 very important people in Allegra's life who she adores took a day off school, to spend this happy occasion with their dearly loved baby cousin.  They wouldn't miss it for the world.  They waited and waited for their baby birthday cousin to wake up.  Come on Allegra wake up!!!!!!

Aunty Nic wagged work.  Ma Mar was here bright and early to sing and dote.  Poppy came.  Daddy was here of course and nanny came too.  Aunty Kirky, Aunty Fi Fi and Uncle Timmy came straight from work.  The kookaburra ward made a huge fuss with lots of visitors and gave her a baby doll and a stroller.  Allegra wanted to walk and push it immediately.

Oh ohhhhh, Allegra has not walked in 6 months. I was bent over supporting her while she twinkle toed around the ward pushing the stroller.  The smile and wonderment of herself was breathtaking and emotional.  She was so proud of herself and so were we.  Everyone came out to witness this joyous occasion. The more audience Allegra had the more she wanted to walk.   Koala Kids made a chocolate smash cake full of lollies.  Beth came and sung songs with Allegra.

Everyone was excited to celebrate and wish this gorgeous, fun, loving girl a happy birthday and showered her with gifts.  We were still opening presents a day later.

The French Lettuce on Nicholson Street, Carlton made Allegra's Birthday cake.  When I phoned to order the cake and explained we were in hospital and asked if it was possible to have it delivered, the owner Nicole so kindly and sincerely said she would deliver it and make it as a Happy Birthday Gift to Allegra.

Nicole and her husband Peter personally delivered the cake to us.  It was lovely for them to meet Allegra and me thank them personally for their generosity which I feel so overwhelmed by.  I appreciate what they have done for us and I will never forget it.  Allegra's dinosaur cake is amazing to look at and absolutely delicious to taste.

Thank you Nicole and Peter for helping to make Allegra's Birthday extra special.

We sat outside on the lawn, and caught bubbles, chased her cousins and giggled in the sunshine for a couple of hours. My little Allegra was overwhelmed by the all the attention and excitement.   It was all too much and Allegra had a unsettled afternoon and night.

Sweet child of mine I wish for you a very Happy Birthday and many many more to come.

I wish and wish and wish for a healthy and pain free life that is full of surprises, lots of giggles, endless love and loads of fun.

My biggest wish is that you will always be safe and you do whatever you want or desire to do.  You have a long life ahead of you and as the saying goes - your world is your oyster.  I BELIEVE IN YOU......

Thank you little Allegra for the best 2 years of my life.  You have fulfilled my dream, my life and you have given me a purpose.  You are my world and my one and only.

I hope you have the happiest day possible.

Thank you everyone for your messages and videos of wishes and love, gifts and thoughts.  You have all helped to make Allegra's birthday a happy special day.

VRE

Allegra was prescribed and administered Vancomycin (Antibiotic) on Monday 30th January 2012, this was when Allegra was neutropenic after her first cycle of chemotherapy.  She had spiked in a temperature(40+) earlier on the 23rd January and was administered 2 types of antibiotics, Tazocin and Amikacin.

While on these antibiotics my little Allegra spiked in another temperature on Sunday 29th January, so was administered Vancomycin.  We were not informed of any repercussions of this antibiotic other than the usual side effects, diarrhoea, nausea, stomache pain and cramps.  I research all of Allegra's medicines and did not come across VRE (Vancomycin Resistant Enterococci), while reading about another antibiotic prescribed to Allegra.

We moved to room 214 on the 24th February 2012, from room 213, which is a room separated and has its own air control.  This is a very protected room from the rest of the ward.

On the doctors rounds in the afternoon as we were settling into our new room next door with the same view, I was updated with Allegra's progress that we had nearly completed cycle 2 of chemotherapy and that Allegra was doing well with it, TPN was to begin as Allegra was nutrition deficient AND that she had developed VRE.  I had no idea what this is and found it very difficult to understand and still do.  I will do my best to explain it to you readers and will quote some facts from the information sheet I was handed.

VRE is Vancomycin Resistant Enterococci

Enterococci are germs that normally live in the bowel/gut - they are part of everyone's body.

They can cause infections in people with lower immunity, if they move from the bowel/gut to another part of the body.

Vancomycin is an antibiotic.

Sometimes enterococci become resistant to Vancomycin.

This means that the antibiotic Vancomycin cannot kill the enterococci if they do move out of the bowel and cause infection.

When this happens the enterococci are known as Vancomycin Resistant.

When your child is well, the other normal flora in the bowel/gut helps to prevent the VRE from being excreted.

VRE may be transmitted by touching contaminated surfaces.  For this reason we are not to share toys, magazines or anything else with the other families in Oncology where there are immune deficient patients.

Whenever a case of VRE is identified, it is routine to isolate the child in their room when they are on the ward to limit the spread of the organism.

I was devastated to hear this shocking information.  It's absolutely unfair and I didn't totally understand it.  I only took in that, "we are not to leave our room and again Allegra was so unfortunate to get this.  Purely unlucky".

I broke down and asked Allegra's Oncologist, Doctor and Co-ordinator to leave, leave us alone, I am sick of them coming around giving us bad news, just go!!!!!!!

I began researching.  It all became so  contradictory and still is.

I have had meetings,stand-offs, arguments, been spoken to and at times been treated poorly and it has been totally unacceptable.  I feel as though Allegra has been victimised and discriminated against.  My baby came in here with Leukaemia and acquired VRE, Mucor, Adenovirus.  All this while in a protected, air controlled environment.  It truly makes me wonder.

So in a nutshell, if an immune deficient kiddie were to come into contact with Allegra's poo they could develop VRE themselves.

Happy Days - Outside!

Allegra and I have been enjoying the gorgeous days outside.  We are allowed to be off feed and medicine and detached from her medicine pole for 1 hour a day.

This all came about because Allegra wants to go for walks and we are not allowed to walk around the ward during busy periods.  For a reason which I will touch on soon.

It has been very difficult and you can imagine that a nearly-2 year old just does not understand.  So eventually the medical staff came up with a valid solution and brightly suggested time off and outside.  Wow it didn't take long....  You can hear sarcasm?  Yep.

Anyway pleas enjoy these gorgeous pics of my little Allegra.  We have had a lovely time.

The first I carried her in my arms and we sat on a seat under a gum tree, Allegra fell asleep in my arms and I sobbed.

The second time we were flying like kites.  Allegra loved the feeling of the "wind" in her face.  We were flying "very fast".  The giggles of delight are embedded in me.

The third time we sat and looked and looked at all the exciting things around us.

Can't wait for our hour today, together.

We did it! TPN Free

Allegra and I have been working hard to increase her NG (Nasal Gastric) feed so she can come off TPN (Total Parenteral Nutrition) feed, which is nutrition fed into her veins.  And we did it!

We were told on Thursay that Allegra needs to come off TPN  as her liver is damaging and she will have to have a NJ (Nasal Jejunal) which is a tube bypassing the stomach and going into the small bowel, IF we can't get her feeds up and Allegra tolerate the required amount.  In the past it has been really tough and Allegra has suffered enormously with stomach cramps, nausea and vomiting episodes.

So over Easter my little Allegra and I had a plan - to increase her feed by 5ml per hour throughout the day to reach her target feed by Tuesday, to eliminate having the NJ.

And we did it!!!!

Christine, one of Allegra's lovely nurses removed her TPN last night.  This means 2 less lines and 2 machines less on her medicine pole.

We are becoming lighter and lighter and I feel as though we are decluttering.  Finally, looking at Allegra's medicine pole I can see an end to our stay here at RCH.

I think I have mentioned this before that my little Allegra is just so clever.

No Vac Pump

More great news for us today and very unexpected.

The Plastics Team did a dressing change on Allegra's bone marrow site wound this morning and I mentioned that it has been bothering her causing an increase in pain.  Her morphine analgesia had been increased and she was needing her break through dose.

It was also painful for my little Allegra during the treatment and he suggested that we dress it with a silver dressing instead of the vacuum seal, which he did. He said the wound was "granulating beautifully and the nerves were healing and this could be more painful for Allegra".

So I handed over the pump with great pleasure and we are now 1 line/tube less.

 Very exciting! Another achievement and more progress for my little Allegra, she is just so clever.

Easter - Good Friday

My little Allegra was unwell and extremely miserable on Friday, she became neutropenic and fought off spiking in temperature all day.  She tried so hard to be happy but did manage to give the Cadbury Easter bunny a warm welcome.

He was lucky enough to be blown enthusiastic  kisses.  Allegra received a chocolate Easter bunny then waved bye to him.

She cuddled it, put it to bed with her, put a blankey over it and kissed it.  It was melting in her hands and was quite upset with the foil tearing. " Oh ohhhh mummy", with a sad face. It was so innocently cute.

Allegra did not like Ronald McDonald at all and was not impressed by the other characters. All the other celebrities came to her door and Allegra said no no no. Mummy had to come good and be the one to meet the celebs and sports people.

Allegra during the week had been filmed by Chanel 7.  She was sitting up in her princess bed with her purple Guess long sleeve T on.  She appeared during the ,good Friday Appeal many times and each time we were excited to see our little Allegra on the big screen.  Yes she does make us very proud.

It was a very emotional day as Allegra wasn't feeling well and having our little Allegra in hospital as one of the sick children was overwhelming and surreal.  Over the years Mum and I have had the Good Friday appeal on tv and together we have cried at the sick kids and babies, listening to the heart wrenching stories and here we were this year living that moment of sadness.

Good Friday at the Royal Children's Hospital is hectic and a buzz.  

We were not in the mood and were looking forward to the end of it.

So for the rest of Easter we are relaxing or hope to relax.  The do not disturb sign is going up and we are not answering the door today to any doctors, cleaners or finger prickers and NO there are no food trays in here to collect.

Great result - another record and they haven't counted our collection tin yet.

Happy Easter from Allegra and myself. XxxxX

About Allegra Mia

I dreamt of Allegra Mia for 16 years.  I visualised Allegra Mia.  I tried so hard for Allegra Mia to come into my life.

Allegra Mia came to me - My Liveliness. 

I am so grateful and thankful and still can't believe my lifetime dream/wish came true.  I am blessed to have Allegra Mia in my life.

I never thought I could love so much, I didn't think it was possible.  When Allegra Mia and I met for the first time I fell in love. I have never felt love like this and I know I will never love like this again.  It is lucky Allegra doesn't have to share my love with siblings.  She has the lot and there is so much love for her.

Allegra loves cuddles (tuddles) and kisses especially from her mummy, thank goodness. She wants more cuddles now especially when she is unsure about someone or in pain.  It's her protection and it is a safe place while in mummy's arms.  She also cuddles her Mason constantly, he goes everywhere with her.

Anything my little Allegra loves, is given, accepts or medically attached to her she embraces it and says "tuddles".  I love this about Allegra, just so accepting.

When she goes off to sleep she rolls to her side asks for "pats".  She loves her bottom patted.  Mar Ma (Allegra's Grandma) has patted Allegra since birth, now we all have to keep it up.  She has always been nursed or cuddled to sleep.

Allegra loves her family to bits in particular her cousins (Bee Bee, Harry & Char Char) and Mar Ma who absolutely adore her.  But don't we all......

She feels very close to our dear and sincere friends of all ages.  She knows who is special in our lives.

Allegra has a very friendly personality, she is talkative, accepting, resilient, brave, inspiring, loving, happy, aware, clever, easy going, determined, hilarious, affectionate, secure, animated and very very cute.

She has the biggest smile and wise beautiful eyes that sparkle.  Her skin is pure and angelic, her hair is silky white and her body is lean and petite.  She is an absolute angel.

Allegra loves music, singing and dancing.  Even when Allegra was in traction flat on her back Allegra would dance with her arms and hands in the air.  She has been to many live music performances and is the number one fan, dancing, clapping and screeching with joy.  She certainly does turn heads and the performers notice her immediately.  My little groupie - taking over from her Aunty Du Du (Indu).

Allegra loved her mummy's cooking and was into all foods. Allegra and I went to the market weekly, it was fun for both of us.  Allegra had her favourite marketeers and was always given food treats.  Allegra only ate organic or bio-dynamic food.  She did have vomiting episodes after snapper and flathead on a few occasions, so we now say she is sensitive to white fish.

Allegra loves animals, all living  creatures and flowers.  Her favourite is the rose - we have always taken time to stop and smell the roses.  Allegra learnt to sniff roses at such an early age.

Allegra thoroughly enjoys the outdoors, walking in her pram, on the back of our bike, swinging on the swing and all playgrounds.  Allegra loves to learn and is very adventurous.  She did love to swim and looked forward to her weekly lesson.

Allegra's favourite colour is purple, everything is purple.  We ask what colour is this - and her response is "purple" even if it is not.

She has "signed" (auslan) since she was a wee little baby girl and has continued this.  I am teaching her the alphabet now.  My little Allegra is also bi-lingual, she speaks Italian, Greek and Arabic, she says ciao, bacio,  yia yia, habibi and picks up words easily. 

Allegra loves to read books and points out every detail. She has quite a collection.  Story time at night and first thing in the morning are special times for us together.

At the moment Allegra is into dinosaurs, I have ordered a green dinosaur  birthday cake with a purple ribbon around its neck .  I ask my little Allegra "baby how old are you going to be" and she responds eagerly and very proud of herself "two" and puts up one finger up.  Her birthday is on the 18th April and we will be celebrating this in hospital, when she is Neutropenic.

Allegra makes wishes to Buddha - I wonder what she wishes for?

At bedtime Allegra chooses a star on her night turtle and we wish upon that carefully chosen star.  This is our night time saying:

Star light Star bright 

First star I see tonight 

Wish I may Wish I might 

Wish upon this star tonight.  

I ask "What are we going to wish for baby"?  Allegra responds "better".  I blink back tears and we say together, we wish for Allegra to get better soon, to take all her pain away and make Allegra comfortable again.  

Please Please make our wish come true.

Allegra Mia LOVES life - Believe in me and Fight for me.

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.

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

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.