Staying positive

It’s not every day you have to manage two of your children that have conflicting appointments in different hospitals .  Today was however, such a day with Fabian needing his daily radiotherapy at the Marsden whilst Cassia needed to be at St Marys for her own follow-up.  It has already been ‘one of those weeks’ that has comprised long days spent in daycare waiting on drugs, transfusions or consultations.   At times, it seems the coordination of our medical world would keep an administrator fully employed.  It is tiring.  We have to keep the outcome in sight as we attend daily with Fabian for his treatment and I’m pleased to say the radiotherapy is visibly reducing the leukaemic lump.

We now have dates for the T cell therapy and our T Day will be later in May.  This requires a short stay in Great Ormond Street for a course of chemo and follow up observation.  We’ve been told that the lab in Nantes has generated a decent sized genetically modified sample so it augers well and the vaccine approach this time should make the difference between success and failure.   I recently attended a cancer research conference and there is huge optimism around achieving a cure for certain blood cancers within a matter of years.  Fabian’s therapy is just one of a new breed of personalised medicine therapies that have become possible since the mapping of the human genome and enabled scientists to identify the specific genetic mutations of an individual’s cancer.  One could argue there has never been a better time to be diagnosed!  We’re therefore keeping positive for Fabian’s outcome, against the clinical odds.  His courage and fortitude persist beyond his years, whether it is having a deep intramuscular injection into his thigh or having to lay naked whilst nurses prepare him for radiotherapy; seeing his hair fall out (for the third time) seems par for the course for him.  Keep standing with us.

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