Charlotte, Mummy & Leukaemia

Remission maintained & proud times Saturday, 17 September 2011 at 22:25

Taken from my original diary on Facebook

Admitted to hospital 2/8/11 with high temperature

Last time I wrote I was really dreading the next phase of treatment; mainly because I knew we would be at the hospital more, Charlotte was going to be on a stronger dose of steroids tha last time, the additional chemo drug is known to cause more problems with nausea & vomiting. It was due to start on 9th September, the day after Charlotte started school. I imagined she wouldn't get there much of the following week due to side effects & was dreading her behaviour on the steroids.

2 days later in the sensory room feeling much better

I can honestly say apart from the inefficient service at the hospitals being very frustrating on 3 occasions in 8 days the week has been great as far as Charlotte is concerned. I'm so proud of her settling in at school & the fact she just takes her illness in her stride & isn't worried about it and being with other children. She'll be quite open about things if asked and is really happy at school. She's tolerated the huge cocktail of drugs she's had in the last 9 days so well on the whole. She's felt a bit sick the first 48 hours after the infusion of Doxirubicin on 9/9 & 15/9 but the anti-sickness medicine seems to settle that. She cried with the pain in her ankles in the evening after Vincristine on 9/9 but calpol settled that, but the next week didn't seem to suffer with this. As for the dreaded steroids, she's been a bit hyper, a little irritable at times, & eating lots but not had any of the aggression & anger she's had when she's been on them previously & hasn't used her pushchair once, when previously the steroids have caused weakness that has meant she's needed it.

Helping to wash to dishes on our camping holiday at the end of August

This phase of the treatment is caused delayed intensification - and basically its another intensive block to make sure any remaining leukaemia cells are killed off. She had a bone marrow biopsy done on 9/9 the first day and she was still in remission which is really great news. The phase lasts 7 weeks but is basically split into two, with the first 3 weeks using Vincristine & Doxrubicin which both go thru her line, shes had an injection in her thigh of Asparaginase, one chemo drug into her spine via lumbar puncture plus one week on, one week off, one week on, of steroids (last phase she had 5mgs for 5 days, this time 8.8mg for 7 days). She then has a week off as her blood counts & immune system will be minimal by then, I have been warned that she is most likely to come down with infection during this time. Then she starts the last 3 weeks of the phase. That involves 2 more lumbar punctures, an injection of a different drug, daily IV dose of Cytarabine for 4 days of the week & an oral Mercaptopurine drug daily (which she's had previously). As Charlotte didn't have the markers on her cells for more detailed prognosis she has to repeat this phase after 8 weeks of interim treatment.

With Robbie Robot & her IV Doxorubicin

As well as praying for Charlotte to beat this illness I also pray for protection against the side effects. Doxorubicin can cause weakening of the heart muscle, which is obviously very worrying for the future if this happens. She had to have a heart echo scan to ensure her heart had no existing problems before the drug was given, thankfully this was fine.
Its been really strange not having her round the 4 mornings she's gone to school this week, but been nice to get little jobs done round the house at my own pace! Apart from things being good with Charlotte its been a pretty rubbish week. Mum's house sale fell thru last weekend & then On Thursday my landlords have told me they're putting my home up for sale....it couldn't have come at a worse time, with Charlotte's treatment I really didn't need to have to be worrying about finding somewhere to live or the stress of moving.
Yesterday would have been my Mum & Dad's Wedding Anniversary, the first one since my Dad died. We've been to Swanage, his favourite place & the children released some helium balloons for him. Then my Brother & I have started clearing out all the tools, & all sorts of things he'd hoarded in the shed for years!
Life sure is a rollercoaster!

A chance meeting with Peppa at S'ton

Charlotte ready for her 1st day at school