Luna Elisa & Noam Mateo y Iago Elias Caden: 2009

Friday 18 December 2009

Luna dice gracias a GOSH

Hoy ha sido un día muy especial. Acudimos a GOSH a entregar un cheque por £30,700.-, dinero recaudado gracias a familia, amigos, compañeros, clientes e incluso, generosos anónimos. La generosidad de todos ellos ha hecho posible que hayamos llegado a tal cantidad. El dinero será destinado para la financiación de ensayos clínicos en niños con cáncer. Con todo nuestro cariño, GRACIAS.

Sunday 22 November 2009

Fiesta de Cumpleaños

Celebramos el cumpleaños de nuestra princesa. Al principio se mostró sorprendida y abrumada con toda la gente, pero pronto comenzó a participar y a disfrutar. Gracias a todos aquellos que nos habeis acompañado, de lejos y de cerca.

Monday 2 November 2009

2 November Update

2 November 2009

Dear all

As you know, Luna had surgery back in June and was pronounced clear of all tumour shortly afterwards. We continued with 'maintenance' chemo up until mid-October which Luna has tolerated well. She is an extraordinarily happy and chatty little girl!

Over the last two weeks, Luna has been through a comprehensive set of tests and investigative surgery to ensure that she is still clear. We have just received confirmation that she is indeed clear, as expected.

About a month ago, in a long meeting with the most senior consultant at the hospital (who had been on three month leave to undertake research), we reviewed Luna's case in detail. Our assumption after Luna had been pronounced clear of tumour was that her outlook had improved dramatically since the original diagnosis. The consultant informed us that infact Luna's outlook had only improved slightly since the original diagnosis for two reasons: first, they had elected not to give her radiotherapy after surgery due to the severe long term side effects; and two, because the real problem with the type of tumour that Luna had is not getting a patient clear of the tumour but keeping the patient clear of the tumour. The consultant explained to us that the risk of relapse is significant for three years after diagnosis and thereafter is negligible. Unfortunately, this was not explained to us after surgery.

With this in mind, we were offered the opportunity to participate in a second clinical trial: a further six months of continuous low dose chemo consisting of the drugs that would normally be administered if a patient relapses. The oncologists believe that by giving the drugs first, there is a possibility that it could prevent relapse. As with all chemo, there are side effects, and the more chemo that is administered, the more serious the side effects become. We reflected on this for a long time, but decided that we could not say no to the trial as, although the side effects are potentially serious, the most important thing was to get Luna through the next few years. In our hearts though we believed it was not necessary.

Last week, we gave our consent to the trial and the consultant put Luna's name in a randomisation program to see if she would indeed be included in the trial (all trials are randomised in order to avoid any bias in the types of patient that participate in the trial). The randomisation came back negative so Luna's treatment is now finished. Of course, she will undergo the same set of tests and investigative surgery she has recently been through every three months for the next two to three years.

It is a very odd feeling, but now we must trust in Luna and higher powers than us. She continues to provide us with inspiration and a lot of laughter!

With much love

Monica, David & Luna