Saturday, 18 August 2012

Medically Right Now

Our hospital visits are still frequent with all different departments involved.  Every Monday we go in to have Allegra's nasal gastric tube re-taped and her central lines flushed, cleaned and re-dressed.  It is something that Allegra does not like at all.  What she does enjoy about going to hospital is her chino from Sandrock, seeing a little friend (Joshie and Allegra pictured), getting dressed up and generally being social to the familiar medical faces.  We are now seeing our Oncologist or Doctor fortnightly now.  This is progress.

Allegra's blood counts are slowly but surely coming up and unfortunately her liver function is still rising fast.  The ALT marker is now at 668.  Last fortnight it was 542, it should be between 12-41.  So you can understand my concern and worry when you see these figures.  And it is worse because they have no idea as to why.  And we have been down this track before, the unknown.  I have cut out Paracetamol and Omeprazole (prevent ulcers) and am now reducing her Clonidine (anti-anxiety).  Allegra has been on these medicines since January and I am hoping that cutting them out her liver will recover.
In the meantime, our lovely Dr Molly has arranged an appointment to see a Gastroenterologist.  I am looking forward in seeing ALL of Allegra's numbers where they should be in the normal range.  We don't want to see any more asterix.

Haemoglobin is now 106, a fortnight ago it was 99, s/be 110-140
Platelets is now 185, a fortnight ago it was 109, s/be 150-400
White Cells is now 5.4, a fortnight ago it was 5.4, s/be 6-17
Neutrophils is now 2.61, a fortnight ago it was 2.86, s/be 1.5-8.5

These are great results, we just have to sort out this damn liver.

Allegra's central line (Hickman Line) is still in.  As far as her blood count is concerned the line could be removed but I really want the liver sorted, just in case they need access.  Allegra is quite attached to her lines as they have been with her since January.

My little Allegra is still not eating enough calories, so her Nasal Gastric Tube is in and still on continuos feeds.  I am very keen to get rid of these feeds but what I have read and also been informed the eating process can take up to 12 months to recover.  I just have to relax and chill out about eating.  It's so sad as Allegra was a fantastic eater, big meals, regular meals and all good food pre-illness.  We went into hospital with Allegra weighing 10kilos, we were discharged at 9kilos and my little Allegra weighs in now at 9.7kilos.

We have also been in to see Mr Leo Donnan at the Limb Reconstruction Clinic at RCH.  Allegra had x-rays on both legs upper and lower including her pelvis.
He reported to us that he was happy, her left femur was correctly positioned in the hip joint, there is bone growth from the Bisphosphanate infusions, the bone is correcting (straightening) and there is a significant bone length difference between left and right.  IF the length difference is a problem way way way down the track there are many ways it can be corrected.  So all in all great news, Leo said "quite boring results really", we love boring.  We will not be having  x-rays or see him for another 6 months.

Clever girl my girl is.

Thursday, 16 August 2012

Thank You

Thank you seems to be not a grand enough word that I can express to each and everyone of you.  Whether you are a relative, a friend, an acquaintance, a friend of our family, a friend of a friend or someone I have not personally met you have all touched our hearts in some way or another.

Clare, Ian, Leo & Lola from the UK, wow, you beautiful people have sent the nicest words, loveliest cards and drawings, gorgeous gifts and recently the prettiest bracelet ever.
Aunties holy Hindi ash, which Allegra and I put on our foreheads as our own little ritual prior to surgery each time. We believed it protected us and gave us strength.  It was treasured.
The cute kiddie pictures from all the littlies decorated our room and help brighten Allegra's day.
Jewellery for Allegra and myself from earth was comforting, spiritual and cleansing.
Hats, all the hats that came in were fantastic.  Allegra loves to choose a hat from the bag, tries them all on and then settles with one, she looks gorgeous in everyone of them.
Toys, being isolated for the majority of Allegra's stay, a selection of toys were appreciated as entertaining was a big part of our day.
Indu,  I love your variation of chocolate and am grateful for the sugar rush through the night as energy was required 24/7.  Your good night messages are always lovely to receive, you had only missed a couple of nights the whole time in hospital and have kept them up since being at home.  Beautiful.
Another Mason (cherished and loved so much) was greatly appreciated during chemotherapy.  Allegra can not have enough Masons, thank you Julie & Harry.
Through Jay and Jo's generosity we had access to the outside world and I was able to continue the blog when I was allowed to use OUR Ipad.
Thank you Margaret for all your assistance and expertice in my blog and giving me the confidence to write it and encouraging me to continue it.  Your blessed gifts from India are powerful and meaningful and meant a lot to us.
Anita, Nic and Jenny you girls are gold, thank you for looking after my very tired body and making my nails look pretty.
Jill and Drew what can I say.  You will never know how much you helped Allegra and I.  I still tear up thinking about what you did for us.
Julie Julie Julie, you are awesome for coming to Melbourne when I so desperately needed someone, thankfully you were here when we had to be re-admitted unexpectedly.  You, Gareth, Brett and Ali have also been so generous to us.
Aunty Di (Nanny Di), thank you for your interstate travels.  You have been fantastic and we love you coming over from Perth.  You are great company for Mum and your friendship to her is invaluable.  Thank you for being there for her and spending many hours with us in hospital.   I love it how you use your 50 year nursing experience with Allegra.
My chic friends (and their men), Andrea, Rachel, Kellie, Kirky, Jo, Jen & Fi for their delicious food deliveries.  I seriously appreciate your masterchefness and sorry Kirky I will never get tired of your Butter Chicken.
Now for my family.  All of you are the absolute most loving, supportive, caring people a daughter/sister could wish for.  I love you all so very very much and when Allegra learns about this period in her life, I know she will feel the same.
Uncle Bwad (Brad my bro) and Aunty sissy (my sis in law) thank you for all your interstate visits and long long hours spent in hospital playing with and dancing to Allegra, coming to medical meetings, 24/7 phone calls.  Your endless support is appreciated greatly.  Brad you give the best hugs and I will always need a hug from you.  Sissy your so wise and clever, goodness knows where I would be without your expertise.
My bro (Scott), Nic (sis in law) and the other loves of my lives Bree, Harry and Charlotte, thank you for brightening up our day and bringing to Allegra fun, love and laughter.  Scott you gave me your word when I planned my motherhood future and I cherish you sticking to it.  You are my rock.
Mum your 100% commitment to us will be forever indebted to you.  You have given up your life to be here for Allegra and I, you are completely selfless.  The long hours everyday and night spent with us, washing (chemotherapy keeps Huggies and Eco laundry liquid in business), cooking, shopping, errand running etc etc etc.  I  could not have managed without you.  You continually teach me how to be a Mum and the time spent in RCH together and now at home, I have learnt so much that I will carry with me forever.  Both Allegra and I cherish you, adore you, love you, admire you, respect you and miss you when your not here.
Bryan thank you for firstly supporting Mum, then Allegra and me.  We love our Poppy visits and special deliveries.  Your the best Step Dad anyone could wish for.
My Dad in Thailand is far away but his constant phone calls are a comfort and I feel close to him.
Thank you to all of our blog followers who send their supportive wishes to us.  We like to receive comments, it shows we do have readers.
My family and friends have constantly been there for Allegra and myself and we will never forget what you have each done for us.
We are truly and totally overwhelmed by everyone's love, whether near or far. 

Almost everyone that hears of our circumstance has asked us in one way or another, What can I do to help?

Allegra has had a lot of blood transfusions and with the human kindness of donating blood this has made this possible. 
Please consider giving blood:

Because of this aggressive disease and the chromosonal abnormalities found in Allegra's leukaemia cells, she may have had to have a bone marrow transplant.  Luckily she fought hard and overcame this.  We need to keep fighting hard and keep our positive believing and thinking going so this does not enter our lives.  At this time, we really need your love, wishes,  prayers and positive thoughts to keep Allegra well. I would also like to encourage people to consider becoming bone marrow donors.
Signing up is easy and painless.  You can find more information on this link:

If you are pregnant, or are ever planning on becoming pregant, I would also urge you to consider donating your baby’s umbilical cord blood if you are not planning on saving it yourself.  It costs nothing and could save someone’s life.  Find out more at the link below.

“We just never know when our actions might positively or miraculously impact another person’s life.”

If you would like to make a donation to the Allegra Mia Benefit Fund, you can mail a cheque to:

Allegra Mia Fewson Ward
PO Box 1424
Fitzroy North   Vic   3068

Or deposit into:

Allegra Mia Benefit Fund
Bank of Melbourne
BSB No. 193-879
Account No. 431149042

I began writing this post whilst in hospital and have just finished it now.  I am completely overwhelmed by everyone's love, generosity and continued support.   Your continued  love and support is as important to us now we are home as both Allegra and I face this long slow journey to recovery.  Cured seems so far away.

Wednesday, 15 August 2012

On The Fun Side

Allegra has started Playgroup at Challenge House and she loves it.  She really enjoys the different activities, takes her time with pasting and painting, is enthralled in story time and screeches with laughter when the kids run around.

Meeting Kris Smith while at music therapy was an exciting time.  Allegra was very excited because she saw her  mummy excited and blushing.  He said my little Allegra looked like a rockstar.
  She was just rockin it in her casuals, unaware we were going to meet a handsome MAN.  He was not privileged enough to plant a kiss on my little Allegra.

We have had many playtimes with Allegra's little friends and their mummy's.  These moments have been missed so much and the excitement is just priceless and precious, of knowing a friend is coming to
 play today. Aunty Du and BoBo gave us a lovely welcome home day (back to their house).  
Aunty Kirky, Uncle Rexy and Ashi have had us over to their house for lunch and play.  
Rach, Izzy and baby Taylor have been a great support in our healing therapy, walking, talking, playing, lunching and hugging.  
Aunty Jenny, Stella and Lilly have visited us bringing bags of goodies and yummy dinners. We made the journey out to Kellie's to visit, have a play with Robbie and meet baby Michael.  This was one our first visiting experience and Allegra was extremely well behaved.  Allegra adores her little friends and they sure adore her.  It is amazing how accommodating they are with Allegra and her needs.  They are all very gentle and patient with her, even joining in crawling  rather than running off.
Allegra at the moment is into chasing everyone and others chase her.  This involves her mummy or Ma Mar carrying her and running.  She giggles, laughs and becomes quite hysterical.  We have even had to chase pigeons around the park.  She is just busting to move.

My little Allegra and I shared a very beautiful day, I called it "a date".  Challenge (supporting kids with cancer) hired out the Greater Union in the city.  We went to see Brave.  I was unsure how Allegra would go but it would not have mattered either way.  We were going out on an adventure together.  We sat at the very back with Allegra on my knee and she was into it immediately, then did not move for the whole movie.  Her enthusiasm was gorgeous telling the bear to run, quick!  It was so beautiful and again I was extremely proud of her.  She talked about it for days and then saw an advert on the back of a bus and she yelled out, "look mummy, the mummy bear."  Priceless and very clever.

We have spent beautiful quality time with Allegra's cousins Bee Bee, Harry & Charlotte.  Uncle Scott cooked us dinner and masterpiece for his little niece.  He carved vegetables in shapes and letters.  Allegra one day wanted to talk to Uncle Scott on the phone.  Bless him, he was busy at work and he was patient listening to a long, slow conversation.  He asked her "what would you like for dinner", Allegras response was "rice", so he made her rice balls.  She had a fabulous time with her adored family who just love her to bits.

Mum (Ma Mar) is going back to her home more frequently now.  Definitely not because we want her to, because she has commitments and has her home there.  I am sad when she leaves, Allegra waves bye bye Ma Mar, blows kisses then 5 minutes later is asking for her.  She is fine until the morning when she wakes and calls out Ma Mar and there is no answer.  I explain, remember we waved bye bye?  She remembers then asks to talk to Ma Mar on the phone.  
Their relationship is adorable, so special and unique.  I do get warm fuzzy feelings when I think about them and see them together.  Mum's presence is invaluable and selflessness.  My mum is the absolute greatest person on earth.  She is an angel.  
Allegra loves to help out in the kitchen and she was a great help making her daddy a happy birthday cake.  We started making it at 7am and it was finally completed 5 hours later.  The decorating had to be just right for her in her eyes.  Candles in, candles out, fingers in, fingers out.  The cake was poked more than a slot machine in Vegas.  She was very pleased with herself and announced to daddy when he arrived,  "daddy birthday cake".

We were blessed with a very special visitor from Brisbane, Glenys Bibby and her beautiful daughter Ruby.  You 2 ladies made our week, thank you for taking the time to heal us with your presence and presents.  You spoilt us.  Can't wait to see you again real soon.  I have missed you so much Glenys.  Tears.

We have had a fantastic time at the zoo.  Allegra and I went, and to see the amazement and fascination on my little girls face was adorable.  And "the peacock ate mummy's food.". Allegra still tells this story.
The next time we were lucky enough to have our very dear friends join us, Aunty Kirky and Ashi, Rach and Taylor.  We just love our times together and with our friends.  How lucky are we?????
We have also been to Collingwood Children's farm.  You may have noted that Allegra loves animals.  Allegra's daddy joined us and, "the peacock was on the roof" and "the pig was huuuuuge".  Allegra at night says, "pleeeease mummy can Allegra feed the animals?"  Looks like we will be going back.

We are also back on our bike.  We rode to our Day Oncolgy appointment at RCH.  Allegra helped me pump the tyres and then asked for her helmet.  
We packed ourselves up and hit the bike track.  Allegra remembers all about it.  We were so happy, giggling together, chatting away until we reached a hill then Allegra did all the talking.  "Go Mummy" she calls out.  Our endorphins were definitely pumped and we were silly excited for the entire day.  Weather has not permitted us getting out again but we can't wait for our next destination.
My little Allegra's personality is beginning to come out again.  She is loving having a chat putting sentences together with all the expressions and hand connotations.
She passes me the phone and asks to talk to either one of her 3 loved cousins, Uncles, Aunties, Ma Mar, Poppy or a little friend.  She even leaves a message when they don't answer.  So so cute.
Her manners are impeccable - no please mummy, ok thank you mummy, yes please mummy, bless you mummy. She tidies up after herself, packing toys away after playing with one before getting the other one out, wipes down surfaces, is pedantic about how items are placed and is generally a very well behaved toddler. She is starting to become a little more social and enjoy other people but still very attached to her mummy.  She needs to know where mummy is and be able to "see mummy."  Skin contact with her mummy is very important to Allegra bringing her immediate comfort, it is another regression to her baby ways but I am not complaining, I love it, those precious moments are priceless.
Allegra has been busy on her feet, pulling herself up, climbing up on the couch, walking along the furniture, and taking steps while holding onto my hands.  With our encouragement and praise Allegra walks with a huge smile on her face.  Extremely proud of herself and so shouldn't she be.  She is a lot more upright and looks taller.  I have been stretching and massaging her calves and hip flexors.  Months and months of lying in bed has shortened her muscles.

My little Allegra still continues to have nightmares whimpering in her sleep and waking up throughout the night crying.  This is a sign of PTSD (Post Traumatic Stress Disorder), which we both have been diagnosed with.  Lots and lots of nurturing, cuddles and love is our medicine. 
 And a well needed holiday in the very near future is definitely on the dreamt agenda.

More adventures are to be had...... Stay tuned.