Update: November 2019
Blake is now 10 years-old and still disease stable. The older Blake gets, the more apparent the long-term effects of treatment are. They impact his daily life making it a struggle at times.
Blake is immobile and has gained weight so is very difficult to lift. His scoliosis has got significantly worse. His spine is so deformed he sits to one side. The spine has also forced his pelvis down on one side so one leg is now longer.
We were offered hormone treatment, however, we made the decision not to have it as we have heard from other families it can make the cancer grow. There are many health issues caused by the hormone treatment which worried us. A result of not having the treatment means Blake won’t grow anymore. His hands and feet stopped growing 3 years ago.
Mentally Blake’s stutter can be bad, his memory is poor and academically struggles to learn. Blake’s behaviour and frustration can vary. As Blake is older he is also struggling with being paralysed and compares himself to his able bodied peers which upsets him.
Despite all of this, Blake’s funny personality and smile always shines through!