Ella's blood results came back really good yesterday. Hb (red cells) are sitting at 104, so slightly below normal, her Platelets are at 444 (slightly above normal! That's a change!), and her neutrophils are 2.5 which means finally, for the first time since diagnosis Ella is not neutropaenic, so we are are making the most of this opportunity to get in a few play dates!
We head into the hospital tomorrow morning at 11am ready for surgery tomorrow afternoon. All going well it will only be an overnight stay and back home on Friday morning. Lets hope so!
We went to the actual oncology "clinic" yesterday for the first time and got to meet a few of the other cancer families. It was nice to chat to some of the other parents, particularly one dad who's son also has ALL. It was nice to see kids still being "normal" towards the end of their treatments and they are all still full of life - makes you have just that little bit more hope. They are so right when they say "kid's are resiliant and dont let their illness get them down". It was very evident in the twinkles in their eyes =)
We finish the Dexamethasone tonight and it couldn't have come sooner! I'm so over having a grumpy little girl who doesn't know what she wants! Speaking of which....better run!
Wednesday, September 30, 2009
Monday, September 28, 2009
Almost a week!
I can't believe it! It's been almost a week at home and no unexpected visits to the hospital! Yipee! *touching wood*. Ella's temp has been a bit all over the place, just enough to keep me on my toes and a thermometer attached to her ear every half hour or so! Tomorrow we head off to the clinic for blood tests and all going well, she will be admitted to hospital Wed ready for surgery on Thursday.
I'm scared at the thought of her having surgery, yet I'm really excited and relieved because it means no more trauma of her having to endure canula's constantly put in. Now it'll just be a matter of applying ANGEL or EMLA cream to her port site, and they will put the needles/canuals in there. A nurse last week showed us a port on a teddy bear and it's going to be heaps easier. The needles are right angled, so that whenever she is attached to a drop, it sits flush against her chest - it wont poke out. It means when she is attached, she has free use of both arms and legs - can run around and play without getting "amgled" (Tangled!).
Just got off the phone with Centrelink (this is totally Ella unrelated) and I've now got a debt somehow with Centrelink! I tell you! It stinks being reliant on it!! I have no idea how this debt happened as I've always reported according to my payslips, but apparently my employer reported differently. Strange.
Well the munchkin is awake - so best go and play!
I'm scared at the thought of her having surgery, yet I'm really excited and relieved because it means no more trauma of her having to endure canula's constantly put in. Now it'll just be a matter of applying ANGEL or EMLA cream to her port site, and they will put the needles/canuals in there. A nurse last week showed us a port on a teddy bear and it's going to be heaps easier. The needles are right angled, so that whenever she is attached to a drop, it sits flush against her chest - it wont poke out. It means when she is attached, she has free use of both arms and legs - can run around and play without getting "amgled" (Tangled!).
Just got off the phone with Centrelink (this is totally Ella unrelated) and I've now got a debt somehow with Centrelink! I tell you! It stinks being reliant on it!! I have no idea how this debt happened as I've always reported according to my payslips, but apparently my employer reported differently. Strange.
Well the munchkin is awake - so best go and play!
Saturday, September 26, 2009
Chippies and Sauce
I am thinking I need to buy some shares in McCain's chippies! Ella is once again, sitting down to a plate of hot chippies and sauce in a bowl - at her request! She's been at me since 8am for them, so I've caved at 11:30 for lunch! I cant wait for this bag to finish then I refuse to buy more! Time for a new fad!
Ella had put on lots of weight - but seems to only be carrying it in her face and her tummy - she's got these little fat rolls just under her arms, incredibly cute! As my mum put it, she looks like she's pregnant and she walks around like she is too! I'm just hoping she'll go back to eating properly again once we stop the Dex.
Last night we ventured out to my sisters for a Body Shop Party - the first time in over 3 weeks where Ella has gone somewhere that wasn't the hospital or home. It was nice to get out for the evening, but Ella was seriously exhausted by the time we got home. I've noticed her energy levels have really dropped and she doesn't seem to want to play much these days. All she really does is eat, sleep and sit down watching TV. No wonder she's putting on the kg's! Hoping her energy will pick up again soon.
I'm really hating that we can't go anywhere 'people populated' and that its really difficult to make plans with people because we just dont know when we will have to make a dash for the hospital. I guess this is my life now - living day to day, minute to minute. As long as people understand! I can't wait for Ella's neutrophils to pick up so she can start having some playdates with other kids - I'm sure she's missing the interaction with other kids her age. I know I am missing it! (and the interaction with the other mums).
Exciting news - our backyard is almost at 'starting phase'! Dad's coming over tomorrow to put up a fence to separate the yard. Billy will get his own little doggie yard where he can dig and poop till his heart is content, and Ella and I will have our own yard that will have some fantastic play equipment, green lushy grass to roll around on, a nice paved area for entertaining and riding bikes....*dreaming*....I can't wait! Will have to post progress photos as they happen!
Right - that's enough of my ramblings. I hope some of you are still reading and I am not going to be talking to myself! =)
Off to go and see how I can pretty up this page!
Ella had put on lots of weight - but seems to only be carrying it in her face and her tummy - she's got these little fat rolls just under her arms, incredibly cute! As my mum put it, she looks like she's pregnant and she walks around like she is too! I'm just hoping she'll go back to eating properly again once we stop the Dex.
Last night we ventured out to my sisters for a Body Shop Party - the first time in over 3 weeks where Ella has gone somewhere that wasn't the hospital or home. It was nice to get out for the evening, but Ella was seriously exhausted by the time we got home. I've noticed her energy levels have really dropped and she doesn't seem to want to play much these days. All she really does is eat, sleep and sit down watching TV. No wonder she's putting on the kg's! Hoping her energy will pick up again soon.
I'm really hating that we can't go anywhere 'people populated' and that its really difficult to make plans with people because we just dont know when we will have to make a dash for the hospital. I guess this is my life now - living day to day, minute to minute. As long as people understand! I can't wait for Ella's neutrophils to pick up so she can start having some playdates with other kids - I'm sure she's missing the interaction with other kids her age. I know I am missing it! (and the interaction with the other mums).
Exciting news - our backyard is almost at 'starting phase'! Dad's coming over tomorrow to put up a fence to separate the yard. Billy will get his own little doggie yard where he can dig and poop till his heart is content, and Ella and I will have our own yard that will have some fantastic play equipment, green lushy grass to roll around on, a nice paved area for entertaining and riding bikes....*dreaming*....I can't wait! Will have to post progress photos as they happen!
Right - that's enough of my ramblings. I hope some of you are still reading and I am not going to be talking to myself! =)
Off to go and see how I can pretty up this page!
Thursday, September 24, 2009
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!
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!
So here we are
After lots of emails, text messages and facebook messages asking how Ella is and her progress etc, I've decided that I am going to start blogging her progress. Here you will get to read the ranting, the raving, the good news, the bad news and everything in between! Be sure to check in every now and then and see where things are at!
Stay tuned...
Stay tuned...
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