Onwards and upwards

Much to report since last.  Fabian’s improving blood count following chemo resulted in him being allowed home late last Friday.  Seven weeks hospital stay had certainly fuelled his eagerness to be back in his own room and thankfully, he approved of my redecoration.  The weather picked the right time to improve and he was able to enjoy sunshine in the garden and heckling the chickens.  Now as we have learnt, being discharged is actually a euphemism for ‘see you in daycare tomorrow’.  This is usually because a whole host of medication continues and needs to be administered at hospital.  So he was indeed back on Monday for prophylaxis drugs and blood tests; routine but time-consuming none the less.  The next day though, he and sister Cassia enjoyed a special treat to have been invited to tour the film studios at Elstree.  Here, they also met the special effects team who had arranged to create a mold of Fabian’s head and hands and produce these in rubber.  Not sure what their use will be, but memorable none the less.

The following day proved to be both unpredictable and bizarre.  It began with Fabian and I back in daycare whilst Lydia was at another hospital with Ben who needed urgent treatment for a knee injury.  Fabian’s platelets were extremely low and he needed a transfusion but there wasn’t time as we had a not-to-be-missed appointment at Great Ormond Street Hospital to discuss the transplant trial that he is being considered for.  The trip there and back took far longer than anticipated and it was early evening by the time we go back to the Marsden where he could finally have the transfusion and this made for a 12 hour day by the time we were all home.  Shortly after though, we noticed heavy bleeding around his intravenous line.  This wasn’t clotting due to his lack of platelets and was going to need more than an elastoplast.  So,  with blood-soaked Fabian, it was back in the car, this time to Kingston, our shared care hospital where he needed yet another transfusion and an overnight stay.  Overall, an exhausting tour of 3 hospitals in one day.

We were hugely relieved to learn that the result of last week’s bone marrow aspirate confirmed no leukaemic cells present.  This makes all the heavy chemo feel worth it – and I don’t mean L’Oreal!  Thankfully then his disease can still be controlled by drugs alone but as has been evident, this is not a satisfactory solution.  The new immunotherapy treatment now available is now our preferred option.  We were excited to find out more about this trial and to learn it is truly at the cutting edge of blood cancer treatment internationally with only a handful of patients receiving this treatment to date.  Early findings from the States are favourable, even making headline news with its results.  Side effects from GvHD are greatly minimised although the overall impact of toxicity is still unclear.  What feels so right about this new approach is that it essentially uses the power of the body’s own immune system – with a little T cell modification – to heal itself rather than using a drugs-based approach.  And coupled with the potential benefit to improving treatments for future children, joining this research trial seems absolutely right. Our donor is yet to be confirmed but we will need to transfer to GOSH with a transplant date planned for early to mid June.  Many visits needed before then and we will certainly get to know the route to WC1 intimately (if not the lack of parking!).

Still in his ‘week off’, Fabian is back in hospital, this time with an infection.  He has become well-known on the oncology circuit and always gets a warm welcome from the medical staff, though always apologising for seeing him back again.  This is a tiring journey which we could not complete without our Heavenly Father who gives strength to the weary.  Onwards and upwards.

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