OK friends. We have the first indication of what we may be dealing with and it is a hard one – tougher than we had hoped. We won’t have the 100% identification until Monday, and we have been advised that it is worth waiting until then to start treatment.

It is most likely that Isita has a neuroblastoma. In simple terms this is a tumour caused by cells which should have developed into neurons during early development, but have instead waited until now to grow into tumours. It is random. It has always been there latently. The trigger for is not known. Aside from the main tumour it is almost certainly elsewhere in her body. Further tests such as the bone marrow analysis and biopsy tomorrow morning and the MIGB next week will tell us more about this.

If this diagnosis is confirmed we are looking at about 18 months of treatment – the ‘full weaponry’ as the doctor said. The problem is not so much eradicating what is there, but making sure it doesn’t return.

All the following must be prefaced with ‘probably’. We are looking at chemotherapy followed by surgery,  further high intensity chemo and a bone marrow auto-transplant,  and radiotherapy. This will take about a year. There will then another six months of other therapies. We have the chance to take part in a clinical trial of cutting edge immunology, which is meant to reduce the chances of a recurrence.

Of course we are scared. It is a daunting trial for her young body. We will provide her with all the physical,mental and spiritual support she needs. Together we will get through this.

5 thoughts on “Probably 

  1. Dear Isita
    I have told Lilly how brave you were having a biopsy of your lump. We are very proud !
    Lilly wants to give you her special snuggle blanket which apparently gives Lilly the power to stay brave when she is scared.
    Lilly will write ( dictate) to you this weekend herself.
    Lots of love
    Catherine ( Lilly Rose’s mummy) Pembridge hall RAM


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