This is Jordan’s story
Jordan is a lively five year old boy who, less than one month after his second birthday, was diagnosed with Childhood Central Nervous System ATypical Teratoid/Rhabdoid Tumour, a very rare type of cancer, usually in the brain. He has had a brain tumour removed and underwent chemotherapy and radiotherapy but is still as bright as a shiny new penny.
Jordan had been unwell since Christmas 2015, paying regular visits to the doctors and even the Children’s Hospital but his symptoms were simply put down to a virus. However, things changed when on a family holiday in June 2016. Jordan had lain slumped over his grandad’s knee, vomiting and sleeping constantly. He had a large swelling in his neck, a cough that wouldn’t go away, he’d lost weight and the family had noticed changes to his voice. It was clear something was terribly wrong and the family rushed Jordan to hospital, demanding action.
Jordan was diagnosed with an ATypical Teratoid/Rhabdoid Tumour (posterior fossa extending through jugular frame and into his neck). He underwent surgery to remove the mass from his neck, followed by chemotherapy and radiotherapy. As a result of his treatment he contracted pneumonia and had had to be ventilated on intensive care for over a week, where he was put into a medical coma to allow his body to recover.
“The initial stages of Jordan’s treatment were the most terrifying, it was the bedside vigil waiting on him pulling through from the brain surgery, to watch him being put on oxygen to help him breathe, to him being taken into intensive care because he was struggling to breathe,” says Kevan. “The doctors at the time had told us that he might not pull through the next 24 hours.”
Jordan’s treatment resulted in a bilateral vocal cord palsy, meaning that nerve impulses to his vocal cord are disrupted causing paralysis to the muscles in that area, and an unsafe swallow which means that food and drink is likely to go down the wrong way into his lungs. Jordan has a gastrostomy (a tube placed directly into his stomach through his abdomen) and receives all his nutrition via this. Due to his vocal cord palsy and unsafe swallow, Jordan has a cuffed tracheostomy, meaning that there is a balloon around the tube to prevent anything going down into Jordan’s lungs, for example saliva or vomit, and causing a chest infection.
As Jordan is breathing in and out through his tracheostomy and not his mouth, he can need suction. This means that Jordan cannot not produce sounds with his vocal cords, so in order to express himself fully he needs to use other means of communication and develop his language and learning, such as Makaton signing and use of a communication aid.
Jordan has completed his treatment and can now plan a transition into nursery and then school. He will require ongoing 24-hour care for his tracheostomy and his gastrostomy.
Jordan’s cancer has not gone away, and when the tumour starts to grow again it will be at an aggressive rate. Because of the late diagnosis, Jordan’s cancer is now classified as terminal.
Eating and Drinking
Jordan has been classified as having an ‘unsafe swallow’. This means that when he tries to swallow, food or drink goes into his lungs. Initially Jordan was setup with a gastric tube which was inserted through his nose and into the stomach. The nasal gastric tube allowed his daily feed and water allowances to be given, by the means of a machine. However, as Jordan was going through a vast quantity of gastric tubes, the doctors decided a more permanent solution was required. Jordan was fitted with a gastrostomy (or ‘mickey button’, as we’ve nicknamed it), which was placed directly into his stomach. This has meant Jordan can be given four feeds a day, by bowless feeding or fed by gravity, without the need for any machines.
Understanding of language
The last time Jordan’s language was assessed, at two and a half years old, he was understanding two key words, including verbs. His understanding of language has been affected by long periods of illness and hospitalisation. Comprehension deficits and slower processing speed can also be a result of having a posterior fossa resection (an operation to remove a tumour from the posterior fossa, a small space in the skull found near the brainstem (responsible for controlling vital bodily functions) and the cerebellum (responsible for balance and coordination)). This means the development of Jordan’s understanding of language will need to be monitored. In practical terms, he may need instructions breaking down, he will need time to process instructions and would benefit from instructions being repeated.
Jordan can communicate some two-key-word messages using signing but often communicates using single signs. His expressive language has been affected by long periods of illness and hospitalisation. It has also been affected by having a cuffed tracheostomy, however, with Makaton signing and his communication aid, this area of his language should develop with time and he will be able to use longer phrases and then sentences.
This area of Jordan’s communication is affected by his tracheostomy. Some children can have a speaking valve with a tracheostomy, this directs the outward airflow over the vocal cords but requires them to move (as this is what creates the sound when we speak), but, unfortunately, as his cords do not move, this is not an option for Jordan.
This means supporting Jordan to use his communication aid and his Makaton signing is really important to allow him to communicate his needs, socialise, develop his expressive language skills, learning and independence.
Jordan has a communication aid to support his expressive communication. This has been provided by the Barnsley Assistive Technology Team (BATT) and their staff have supported the family in setting this up for Jordan and encouraging him to learn and explore, and use it to convey messages. The family uses the CODES framework to set targets to help Jordan use his communication aid.
Children who have had posterior fossa surgery can have problems with short term memory, so it will be important to give Jordan lots of opportunities to use his aid so that this will go in to his long-term memory which is often less affected.
While Jordan was in and out of hospital, and then after having time with his family on holiday, it was not always possible to offer regular sessions to support him to use the communication aid. This will be a key area for Jordan to develop at school.
Jordan is a very sociable boy, but his opportunities to socialise with other children have been limited by his prolonged hospital stays. His social interaction will also be affected by his speech so it is important his communication aid and signing are incorporated into his day, and activities are planned so that he can use his aid with his peers.
Learning and memory
Children who have had surgery for posterior fossa tumours can have difficulties with attention, memory, processing speed and visuo-spatial skills. All these areas will need to be monitored and supported.
Speech and language therapy
Jordan’s speech and language therapy will now be transferred to the Early Years Community Speech and Language Therapist who covers Wisewood Pre-school, which Jordan attends five mornings a week accompanied by a tracheostomy trained nurse. The therapist will liaise with the therapist at BATT to set targets and goals.