Tuesday, 24 September 2013

Update 14/8

So... Wotsit finally had his lumbar puncture on the 6th August and we got the good news yesterday that his results were positive.  The likelihood of the leukaemia recurring is now within ‘normal’ limits (v small).  The hospital have also confirmed Wotsit’s course of treatment and he will be participating in the clinical trial which is what we were hoping for.  This means that over the next 8 weeks, once a fortnight, he will receive a very high dose of Methotrexate.  This is given intravenously over a 24 hour period.  We will be in hospital for c4 days during this time as he is only discharged once the Methotrexate has cleared his system.  We’re told that children following this protocol don’t seem to suffer too much.  Although of course this varies by individual child.  We’re hoping – given Wotsit’s track record! – that he’ll be in good spirits throughout.  The main side effects are hair loss (he only last about two thirds of his hair before) and mouth ulcers (so far, he’s not had any).  So, fingers crossed. 

This is the third phase of Wotsit’s treatment (Interim Maintenance) and it’s also when the 3 year countdown begins.  I.e. 3 years from now, his treatment (all going well) should be complete.  The fourth phase also lasts for 8 weeks and is called Delayed Intensification (similar to the first 2 phases with some steroids thrown in for good measure).  Then we move into the final Maintenance period.  As Wotsit is having such a high dose of Methotrexate during the current phase, he will not require any chemo via lumbar punctures during the final phase (previously given every 12 weeks).  He will also not be given Vincristine or steroids – we are really pleased about this.

It’s been a long while waiting for Wotsit to have the lumbar puncture and to get the results but it has meant that he has been chemo free for c4 weeks, so he is on top form.  Pickle is very happy to have his playmate completely back and we have had a lovely summer break so far.  The next 8 weeks (starting on the 21st August) will be particularly tough on Pickle as he will miss his brother (possibly his Mummy) and will be a bit frustrated, and maybe worried, if Wotsit’s not feeling great.  Hopefully he’ll get through it okay with lots of support from us, school, grandparents & friends.

We’ve managed to keep Wotsit’s birthday a ‘treatment free’ day so looking forward to celebrating that on the 27th.  He will also be able to attend his first day of Year 1 (although he will be whisked to hospital at 3.15pm the same day!).

We’ll keep you posted on how he’s getting along and see some of you soon.

Lots of love
P.S. Participating in a ‘trial’ seemed quite scary initially when you’re trying to ensure your child is fully fixed from leukaemia.  Rest assured, they’re not allowed to do anything crazy!  The protocol Wotsit will be following is tried and tested in other countries and is the method the UK is hoping to adopt as it should give children a much better quality of life during the treatment.    

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