Message from Lydia Pottinger
My 4-year-old son Donell has been diagnosed with a brain tumor called Diffuse Intrinsic Pontine Glioma. This was diagnosed by the results of a MRI scan at the Children’s Hospital. It is located at the bottom of the brain (Brain Stem), where the brain connects to the spinal cord. So it is on both his brain and spinal cord, this is why it affects so many of his functions.
Donell was admitted to the Children’s Hospital on 3rd September 2006, through the A&E department. We brought him there because he was unwell. After being checked out by various staff, he was admitted that night with plans for a MRI scan. The following day (Monday 4th) he had a MRI scan, which showed the tumor. They then started Donell on a course of steroids to start the fight against the tumor.
On Monday the 11th September 2006 he had a Ventriculoperitoneal (vp1) shunt fitted. This is to relieve intracranial pressure caused by hydrocephalus, the fluid in the brain has no way of draining because of the tumor, so the vp1 shunt drains it from the back of his head, down into his stomach. The stomach absorbs the fluid.
The tumor has had a huge impact on Donell. It has affected his eyes to a point where he has lost the ability to naturally blink his right eye. He also states that sometimes he can’t see properly. It has had a much more of an affect on his ability to walk. Whereas before he was able to walk and run about, now he can barely stand up own his own. If he needs to go anywhere i.e. toilet, we have to hold his hand or carry him. If he wants to move around by himself he has to crawl. Even when crawling he is off balance. When we take him out he as to be put in a pushchair as he cannot walk for long periods and he is not stable.
It has also effected his ability to speak, facial movements i.e. smiling, drinking and he has started dribbling. It has also affected his hearing, as he says sometimes he can’t hear properly.
The next step of treatment is that Donell has to undergo radiotherapy. This is to be done at the Queen Elizabeth hospital’s cancer center. Donell will have radiotherapy for six weeks Monday – Friday, each time he attends he will have to be put under general anesthetic. Before he starts this he has to have a mould made of his head, so when the radiotherapy starts the mould will keep his head still so they treat the same area all the time. Donell has an appointment for the moulding on 26th September 2006, so we are hoping his treatment will start soon after.
It has been indicated by donell’s consultants that due to the nature of the tumor, his condition will deteriorate before we see any marked improvements.