Charlotte, Mummy & Leukaemia

Not my Charlotte Friday, 10 June 2011 at 19:51

Taken from my original diary on Facebook

We've now had 2 full days out of hospital, although we were there for a couple of hours today as an outpatient. Sadly the irritable, grumpy & constantly hungry little girl I've brought home only vaguely resembles the chatty, polite & delightful little girl I took into hospital 3 weeks ago. Due to the chemo injection she had on Tuesday she's very tired, so most unlike her she has taken herself to bed early the last 3 nights. Unfortunately she has then been awake at 5.10-5.30am due to the steroids. Yesterday morning I had the hardest couple of hours parenting ever as she was absolutely horrendous and I was in bits, thinking this really is a nightmare and theres no way I can cope with this all the time. Thankfully, my great friend Heather came round & took her out for a couple of hours so I could relax & calm down. We had a visit from Pippa, the POO (Paediatric Oncology Outreach) Nurse in the afternoon, and I was soo relieved to hear that in just over a weeks time the steroid dose will be reduced and cut out and also that although she will have the same steroids again at times throughout her treatment, it will never be at the same high dose; so it should never be as bad as this again...phew! And I'll also get my little girl back :-) lol I see little glimpses of my Charlotte, like today she said "that's really kind of the nurses letting us go home to sleep for 2 nights isn't it mummy" :-)

The steroids have given her a massive appetite and in the last week she's put back on nearly the whole 2kg she lost in the first 2 weeks. Apparently they give children cravings and the nurses have told me of children putting their whole hand into jars of marmite and such like and ordering take aways in the middle of the night as they're so hungry. Thankfully Charlotte has done neither of these things! lol She is addicted to ham sandwiches, sausages & crisps. The last 2 mornings she has had ham sandwich (2 slices of bread instead of her usual 1) at 5.30am, followed up by crisps a bit later and then eaten 2 sausages, bacon & fried bread at 8.30am in Sainsburys. If she wakes in the night she gets given 2 malted milk biscuits & that's it! (I know, I'm a cruel mum! lol). She understands she has to have lots of medicines which are chemotherapy but she must be so confused about whats happening to her. As with most children her legs are weak so she's in a pushchair most of the time & she's experiencing blurred vision as she tells me she can't see properly (both of these are side effects of the steroids and will go), and due to the big appetite she's also getting the steroid typical pot belly & chubby cheeks! She also knows that she is losing her hair, but it will grow back.
We went back to Poole Hospital today as an outpatient and Charlotte had her IV chemo, bloods taken & central line dressing changed (which made her scream like anything!). Blood results are good. As the Leukaemia cells are less now her bone marrow can make more normal cells & platelets, so some of her counts are close to normal, however, this will always fluctuate because the chemo drugs also kills healthy cells as well. So we have to go back on Wednesday for bloods to make sure she doesn't need any blood or platelet transfusions before next Fridays Bone Marrow Biopsy & Lumbar puncture.
After yesterday mornings nightmare I felt angry about our situation, why Charlotte must suffer, why its going to be so hard & hadn't we been through enough upheaval, turmoil & pain in Charlotte's short life.
Then this evening I read this on FB page Sisters in Christ;
"If we really desire to experience Him, we need to stop blaming God, reverse our self-centred demand for release, and realise for the first time in our lives that we are getting a firsthand experience of what He felt and experienced as He suffered for us." this blew me away! Dear Jesus, forgive me for doubting your love in my pain. Thank you for loving me enough to suffer for me. Micca Campbell
.....blew me away to!