Diagnosis Sunday, 22 May 2011 at 08:23
Taken from original diary on facebook
Been thinking about writing a blog /diary about this part of our journey following Charlotte's diagnosis. Just read a guide to setting up a blog...don't think its going to be quick or easy to do now in hospital so maybe just write notes on here instead.
On Thursday 19th May I was told the devastating news that Charlotte has Leukaemia. Charlotte has been ill since Christmas & on 27/1/11 she was admitted to hospital. I was told her white & red cells counts were virtually zero, & that this meant her bone marrow wasn't working properly, when I heard bone marrow I think I held my breath & then the Dr told me I had to be prepared that a possible cause was Cancer. I went into shock, I just couldn't believe what I was being told, it was 8 weeks since my Dad's funeral..he died of cancer only 4 weeks after finding out he was terminally ill. I thought "no, this can't really be happening, it can't". She did however explain that the positives were that Charlotte's Platelet count was ok & there were no 'leukaemia cells. So they decided to adopt a watch & wait policy before deciding whether to do a bone marrow biopsy. We went home on 31/1 and then I had the stress of 'not knowing' hanging over me until 26/2, I couldn't tell my Mum or Sister because of my Dad.
After her bloods returning to normal in February the Consultant on 26/2 confirmed a bone marrow biopsy wasn't required & they were 'absolutely ruling out cancer as a cause' and it was a virus (even tho there were no test results which confirmed this). It was a massive relief!
After being told it wasn't cancer I just couldn't believe what I was now being told. I went through all the thoughts & emotions in Jan/Feb whilst I waited to know if it was cancer...I immediately feared I could lose my precious little girl...the worst feeling ever, unimaginable.
Now she does have Leukaemia I can't even let my mind go there, there are lots of things going for Charlotte in respect of her full diagnosis and with our Faith can only believe she will recover. She has Acute Lymphoblastic Leukaemia, known as ALL. She is in the lowest risk group due to her age & being a girl. Treatment will be over 2 years and there is an 85% cure rate.
In the week preceding Charlotte's diagnosis I heard/read a number of times about God giving us enough strength for each day & not to worry about tomorrow or yesterday....now I know why I kept hearing this & keep very focused on that.
On Thursday 19th May I was told the devastating news that Charlotte has Leukaemia. Charlotte has been ill since Christmas & on 27/1/11 she was admitted to hospital. I was told her white & red cells counts were virtually zero, & that this meant her bone marrow wasn't working properly, when I heard bone marrow I think I held my breath & then the Dr told me I had to be prepared that a possible cause was Cancer. I went into shock, I just couldn't believe what I was being told, it was 8 weeks since my Dad's funeral..he died of cancer only 4 weeks after finding out he was terminally ill. I thought "no, this can't really be happening, it can't". She did however explain that the positives were that Charlotte's Platelet count was ok & there were no 'leukaemia cells. So they decided to adopt a watch & wait policy before deciding whether to do a bone marrow biopsy. We went home on 31/1 and then I had the stress of 'not knowing' hanging over me until 26/2, I couldn't tell my Mum or Sister because of my Dad.
After her bloods returning to normal in February the Consultant on 26/2 confirmed a bone marrow biopsy wasn't required & they were 'absolutely ruling out cancer as a cause' and it was a virus (even tho there were no test results which confirmed this). It was a massive relief!
After being told it wasn't cancer I just couldn't believe what I was now being told. I went through all the thoughts & emotions in Jan/Feb whilst I waited to know if it was cancer...I immediately feared I could lose my precious little girl...the worst feeling ever, unimaginable.
Now she does have Leukaemia I can't even let my mind go there, there are lots of things going for Charlotte in respect of her full diagnosis and with our Faith can only believe she will recover. She has Acute Lymphoblastic Leukaemia, known as ALL. She is in the lowest risk group due to her age & being a girl. Treatment will be over 2 years and there is an 85% cure rate.
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| Charlotte Oct10 before she started being ill |
Hi, saw you on Twitter and thought I'd take a look at your blog. We are in fairly similar circumstances. We have a 5 yr old daughter, Astrid, who was diagnosed with ALL last March. We are higher risk than you because of the way that the ALL presented itself, and so are on a more agressive regimen. But prognosis is still good - around the 80% cure mark. She also had a bad reaction to Asparagenese and was in intensive care for a week, which was very scary.
ReplyDeleteV interested to see you write that the doctors told you she has a better prognisis because she is a girl. It seems to be the great unmentionable at GOSH. They never talk about the sex of the child making a difference, but I know a lot of parents wonder about this.
We are christians too, and the church has been very supportive. The first time they prayed for Astrid i was on a bus going home and was feeling very anxious. All of a sudden I felt a deep peace that we were going to be able to deal with this and this was exactly at the time they say the prayers at church.
Saying that I do however wrestle with the why us sometimes, Astrid's condition has had a very serious impact on our lives, we are forever changed. It does seem totally unfair, but then I guess you just have to accept that this is the plan for your life and get on with it and learn from it as much as possible.
Anyhow, I'll remember your daughter in my prayers. I am glad that things seem to be going well for Charlotte and that pray that God gives you enough strength each day to get through.
Ashley
Thank you very much Ashley. I'm sorry to hear you're going through the same experience with Astrid. That's interesting about GOSH not mentioning sex, Southampton we mentioned it more than once that being a girl under 10 gave a better 'cure rate'.
ReplyDeleteI bet that was very scary when she reacted, I've not come across that before altho I know they make us stay around for an hour after to check Charlotte doesn't. I've met quite a few 5/6 year old girls on Regimen C, quite a few started on A & we're moved for one reason or another so I sort of prepared myself for the fact that it could happen, but thanked God so much that she could stay on A.
I find it hard seeing all the children with cancer & ask why and as you say I guess you accept its the plan for your life but its does completely change your life forever & certain.
I shall remember Astrid & you as a family in my prayers.
God bless
Sarah