Cambridge

Tuesday was our monthly appointment with Holly's consultant, Amos in Cambridge. All her blood results were good and she got a clean bill of health. Therefore we are fine to start round 3 of the retinoic acid.

I felt a little down after the appointment. The reason being the the GD2 Antibody treatment that has now been approved in the UK. It is similar to the treatment available only in New York but has a different make up. It is given after the first round of retinoic acid so Holly is not eligible, we are about 6 weeks too late. I knew about this antibody from the conference I attended in November but hearing that it is actually going to be used from now was a little upsetting. However it is very very toxic and means a huge change in quality of life. Holly is having all her 6 months retinoic acid treatment at home and has no hospital stays. The antibody treatment would entail 5 days of outpatient and then 5 days in PICU (intensive care) as an inpatient. During the antibody they are given morphine and ketamine as the pain is very intense. There is a long list of side effects, many of them serious. The antibody has only been tested on 15 children so is at a very early stage and the doctors in Addenbrookes are wary of what will happen.

In a way I am glad I do not have to make the decision whether Holly should have it (she is adamant that she wouldn't!). I have to admit I would have put her through it, I think I would have had to. I think any parent would make that choice, you take any hope offered.

I want to send all the love and prayers to the beautiful Ellen who is starting antibody treatment this week. We have been on this journey together with only a couple of weeks seperating their diagnoses. I think she is the first in the country. Her parents have had to make this choice, I am sure it is the right one.