Diagnosis to now

A little background information, briefly, as it would take all night to include everything that has happened over the last few weeks.

Ella's journey with Leukaemia all started with a limp back in July - an unexplained limp where no Dr could work out what was wrong. All blood tests, scans, xrays, bone scans etc came back negative. Every now and then the limp would return. She was then hit with reoccuring ear infections that Amoxil just wouldn't clear. On Tuesday 1st Sept, I took Ella back to the GP with yet another limp and a rash on her bottom and on her knees. When our GP first saw the rash, she suspected Meningicocal (sp?) so sent Ella off for blood tests that afternoon to rule it out.
The following morning I recieved a phone call from the Medical Centre saying I needed to be there by 9am urgently - and so my world crumbles. It was here I was informed that Ella's results had came back abnormal and were indicating Leukaemia. We were sent to the hospital where we were met by Professor "John" (we shall call him Dr John!) and Helen (clinical nurse in the paediatric oncology clinic). Here they explained what they suspected Ella had and where to from here. It was incredibly overwhelming and thank god I had others in the room with me as a lot of it went straight over my head - yet now, here i am 3 weeks later, almost an expert! Ella had to go to theatre the following day to have her bone marrow tested to check which subtype of Leukaemia she had. These rests confirmed that Ella has Acute Lymphoblastic Leukaemia (ALL)- the most common childhood cancer. I was told this was in our favour. Statistics show that 99% of children with ALL will go into remission and of those, 20% will relapse and 80% will remain in remission. We are hoping like hell Ella is in that 80%.
Ella has been classified as "Standard Risk" and is on what they call a "Standard Risk Protocol" made up of numerous phases of chemotherapy treatment with various drugs and levels of intensity. These drugs come in various forms such as through an IV drip, into her spinal fluid via a lumbar puncture, injections into muscles and also orally. She will remain on this protocol for 2 years - this is to ensure all cells are killed off at their varying cycle growth.
I have since learnt that Ella's bone marrow was made up of 90% cancer cells. We were told that by Day 15, this needed to be at 5% and be referred to as "remission" in order for her to remain on this standard risk protocol. She underwent another bone marrow biopsy on Day 8, as some children are what they refer to as "rapid responders" and they needed to see whether she was on of them. On Day 8, Ella's cells were at 12%. Yay! Big drop from 90% but not enough to be classified a rapid responder. So, Day 15 was approaching and I was praying that she would go into remission. The day came and went and we recieved the results - Ella is well under the 5% mark, and is therefore in remission! WoooHooo! We are so happy. This doesn't mean she no longer needs treatment, it just means that the current treatment protocol is working and her body is responding really well.

Today is Day 22. And it is from here that I will update as often as I feel it necessary. Today we went into the clinic at 8:45am to have blood tests then for her to have her Vincristine - a form of chemo that goes in an IV drip. Ella's veins were not cooperating at all today, and it took 3 attempts to have a canula inserted. The poor poppet was beside herself - thank god for the Clown Doctors and their attempts to cheer her up!
Ella's blood results are good. Her platelet levels (the cells that clot and stop you from bleeding) are sitting at 267 - the normal range being 150-400! The lowest Ella has been is 9 - this required a platelet transfusion.
Her Red Blood Cell count (Hb) is sitting at 97. Normal is 110+. The lowest she has been for this is 78 and again, she required a blood transfusion for that. Her white cell count, in particular her neutrophils are sitting at 0.5 - they need to be over 1.5. It's the white blood cells that help fight infections, so when her levels drop below 1, she has limited or no ability to fight infections herself, and required IV antibiotics to help her. This is why I have to take her temp so often, and as soon as it hits 38 degrees, then off to hospital we go to start antibiotics - this is the reason for our recent trips to hospital! When she is Neutropaenic (low neutrophil count) I have to keep her away from bugs as best as possible. Hence I am super strict about who comes in contact with her - so please dont take offence if I ask you not to come near us!

Ella is currently taking a drug called Dexamethasone - a steroid to assist in her body accepting the chemo drugs. This drug, otherwise known as "grumpy medicine" is seriously doing my head in! Think male adult body builder, and then put that into my little girl's 2 year old body! Serious stuff! She goes from innocent and sweet to full on tantrum in 2 seconds! And she's eating like there is no tomorrow. We just can't fill her! Her first week she was on a cheese fad, and this week it's chicken, chippies and sauce! And watch out if you dont get her those chippies NOW! This drug ceases as of next Wednesday - bring it on I say!

Next Thursday Ella will be having surgery to have a permanent port placed in her chest that gives access to a direct vein - so no more canulas! This port will be accessed for taking blood and also administering medication. We can't wait! Her poor little arms and legs are so punctured from all the tests they have done =(

And I think that pretty much bring you up to date on the medical side of things.

Emotionally - I was a wreck to begin with, but as time is going on, I'm accepting it and finding ways to cope. I just wish it all wasn't true and one big mistake. How can one family be hit with Cancer twice in 8 months! It is just not fair. I keep asking "what have we done to deserve this" and I am just clueless. If there is a God, how can he be harsh and cruel. I'd like to think Mark is up there being an incredible guardian angel and protecting her the best he can - yet I also ask, how could he have let this happen. It really does question my spirituality all over again. Just when you think you know what you believe, it all gets turned up side down.

I've had to quit my job - the dream job where I was finally being paid a decent wage. We were informed of the death benefit payout from Mark's super, and I was so excited that we could pay off the mortgage and be saving $600+ a fortnight and living in a way we didn't have to watch every cent spent. And now, here I am, back at square one, going to have to learn to live off a Centrelink pension. Thank god for that payout, otherwise I would be well and truely screwed.

Family, friends and the various support services have been so supportive and without them all I would be truely lost - so if you fall into this group and are reading this, from the bottom of my heart, I do say thank you. I'm learning slowly that i dont have to do this on my own and that it's okay to ask for help - emotional help, practical help and financial help.

And I think that's probably enough of my ramblings for now. Please keep checking in to see how we are doing!