Wednesday, 5 September 2012

2 Steps Forward 1 Step Back

We had some great blood results last week.  Allegra's liver function has come down to 364 from 668, so weaning from medicines has given her liver a rest  and time to recover.  This has been something I have been requesting since mid May.  It again shows that you have to persevere with your request and constantly ask your Oncologist.  Ours just (forgot??) about Paracetamol.  Continued usage over a long period of time has a major affect on the liver.  Why did he keep sending us for tests when he could have eliminated the obvious? Maybe he is too experienced to look at General Practice.  Conveniently for us he went on leave and we have been seeing Dr Molly who we are extremely happy with.  She goes above and beyond in our consultation, and most importantly Allegra and I love her.  
Allegra's blood is finally in the "normal range" with her Haemoglobin at 116 and Platelets at 257and there are only a few asterix left to deal with.  Yay for Allegra!!!!!! 

 At this stage Allegra's central lines (double Hickman) will be coming out on Monday.  I have started talking about it to Allegra saying, "we can take your lines out soon baby".  She pulls her top down and holds her lines saying, "no mummy, mine."  Of course she is attached to them, they have been attached to her for 9 months.  We have them flushed and the dressing change every week, which she is just becoming ok with and now they are leaving her.
On the downside Allegra got her first cold which meant we were housebound for 10 days, she just started getting over it when a walk in the freezing wind bought it all back.  And the little 2 year old toddler is refusing to blow her nose.  Why?  Because she can refuse and I can't make her.  Arghhhh determined 2 year olds with a strong personality.  I wonder where she gets it from?  Yes I know, you don't have to answer, her mummy.  I love it but at the same time dislike it.
And as if she hasn't had enough my poor little Allegra has been projectile vomiting and has chronic diarrhoea.  We are avoiding being admitted into hospital.  I have been running electrolyte replacement through her feeds to rehydrate her.   It was a lot easier dealing with poo poo and vomit in hospital, all I had to do was throw the linen in the bag, walk to the trolley and there it was - clean linen again.  Or better still most of the nurses made up our bed for us and poor Ma Mar was doing all of our clothes washing.
We just want a break, I am so tired of having an ill baby and Allegra deserves to be well.
Allegra's weight was 9.9kg, which is nearly the weight we were admitted at.  I have started to run her feeds through the night so my little Allegra has a chance to be hungry during the day.  Just when things were looking good she gets sick.
My little Allegra walks only holding one hand now and she takes steps on her own at home.  

I dreamt of this moment while in hospital.  I missed us walking holding hands the most and now we have it back.  So together we walk and walk and walk.

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.

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.