Update 24/7

It’s been 6 weeks since my last update and I thought you might like to know how we’re getting on.

 

Wotsit has been amazing.  We are at the end of the intensive 10 week consolidation phase and he has been really well.  He’s been at school perhaps 30-50% of the time with the chemo having very little impact on his energy levels and general wellbeing.  Participated in sports day, went on his school trip, progressed hugely in his reading (still need to work on the writing!)...  He was admitted to hospital last week as had a slight temperature but, in himself, he was never anything more than ‘a little under the weather’. (Which made containing him in a 10 by 12 foot room for 5 days, even more tricky).  He’s needed the odd blood transfusion and some platelets but has otherwise been really well.

 

He was supposed to have a bone marrow test yesterday where they repeat the MRD test.  However as his neutrophils are currently 0.0, it was postponed as there’d be no cells for them to look at.  The test should now take place next Tuesday and we’re hoping for the results on the 6^th August.  At that point, the next course of treatment will be agreed.  Assuming the MRD results show Ollie as being low risk, we would need to decide if we’d like to participate in the next part of the clinical trial.  This would mean a higher dose of chemo in the next 8 weeks (requiring hospitalisation once a fortnight for 4-5 days) but as a result, there would be no lumbar puncture every 12 weeks in the last phase of his treatment (lasting about 2.5yrs).  On the trial, there is also a chance that in the last phase, he might not have to have Vincristine (our least favourite chemo drug) or steroids (my least favourite drug by far!).  However, the trial is randomised.  So, even if we opt for it, we may be chosen to follow the standard path.  If the MRD is not low risk (which occurs in only 2-3% of cases at this stage) then alternatives such as stem cell transplants are considered.  We shall see...    

 

An emotional last day of term today.  We’re hoping we’ll be able to fit in some fun during the summer holidays as well as a 5^th birthday party for Wotsit!

 

Lots of love...