A multidisciplinary team is very important for ensuring the best quality of life for your child: neuro-oncologists, neurologists, neurosurgeons, neuro-radiologists, gastroenterologists, rehabilitary oncologists, psychologists, psychiatrists, and a team dedicated to infant palliative care. Unfortunately, not all centres with pediatric oncology units also have multidisciplinary teams.
If the medical centre where your child is being treated doesn’t have them and you want to be recommended to a centre which does, talk with your doctors so that they can refer your child.
All your lives have been turned upside down, and its true that to be away from home and your normal surroundings is difficult, even more so if you have other children, it will be hard for them; but at this point, from our personal experience, the care, attention and methods provided by these medical centres are the priority.
If your doctors deny you a referral, contact us (link) and we will try to help you.
In most areas you have the right to a second opinion. If you wish for it, seek it urgently – time, unfortunately, is against us, and taking into account the difficult diagnosis of gliomatosis cerebri, it could be very important.
There are clinical trials for high grade gliomas, though none specifically for gliomatosis. The US has the highest number of clinical trials, though there are also some in Europe and Spain. You can view current studies here.
More information
If you want to contact us for more information, contact us using the contact form or via email by sending an email to the account informacion@izaslaprincesaguisante.org