New hope please

This entry has been a difficult one for me to post.  Our fight against leukaemia, analogous to an epic tennis match, has gone to a tiebreak just when we thought we might go a set up. In reality, I’m sorry to report the latest MRD level is not lower, or even the same as the previous two readings but has in fact risen tenfold. We are still talking low molecular levels but nevertheless this is a blow to our rising optimism. It would appear that the precious T cells have simply dispersed and no longer show up in the cell flow cytometry. The reason for this is not yet understood but in part seems to be because of a lack of EBV, the body’s naturally-occurring virus that triggers lymphocyte reproduction. It was always one of the known uncertainties going into the trial but at least the evidence proves the modified cells worked wonders whilst they were still present.

This unwelcome turn of events presents yet another clinical decision to make on Fabian’s behalf – should we repeat the process? Well, yes and no. To paraphrase Einstein, there is no point repeating the same things and expecting a different result. But the recognition of the importance of EBV means that the next time around the team would infuse the T cells together with an artificial EBV vaccine, hopefully ensuring they persist for longer. This has never been attempted anywhere worldwide. There are, however, several immune-related factors that could inhibit this and rather perversely, we would have to wait for the disease to progress to full relapse before doctors can determine whether these factors would negate repeating the T cells.

As I write, our feeling is to proceed with harvesting more of Cassia’s T cells to begin the modification process in the event that they may be needed later on should disease levels rise.  This means we’ll need to leave the CD19 trial and therefore ongoing treatment cannot be met from the research funds. Furthermore, the hospital ethics committee will need to clear this experimental treatment and Cassia requires hospital approval to donate for a third time. Neither she or Fabian should be used as guinea pigs! We also know that the American version of this treatment has achieved better success and that it could become available, probably in Germany within a year. The possibility of accessing this in the U.S. is worth exploring but other non Americans have tried and been turned down and in any event, it would be prohibitively expensive.

And yet new research on MRD outcomes shows that at least a third of children with the same level of disease as Fabian don’t relapse and go on to enjoy a good quality of life for many years. Since he has been such a fighter, Fabian has every chance of being the one in three. The next BMA will tell us more. Meanwhile, we feel more dependent on God than ever to work a miracle.  It may come through T cells or divine intervention, we don’t mind.  New balls and new hope please..

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One Response to New hope please

  1. Alison Kydd

    Always keep Fabian in my thoughts. Praying that the miracle that Fabian the Fabulous so deserves will be his very soon.
    Caitlin says she hopes Fabian has been able to see the Lego Movie, as he’d love it! 🙂
    Sending love to the whole family,
    Alison and family xxx

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