My son, Talin Ash was 5 years old when diagnosed with DIPG, a terminal brain cancer, at Sydney Children’s Hospital in Sydney Australia. Time is always critical and as his father I chose to document his journey to the best of my ability… Little did I know that Talin would die in my arms 13 weeks later…

One of the main treatments for DIPG children is Radiotherapy. It involves wearing a heat shrunk mask that holds their head completely still during radiotherapy.  Most young children and some adults cannot do this due to claustrophobia and being restrained. For them a general anesthetic (GA) is used to sedate them for the procedure, but it takes much more time than not having a GA. I worked out a procedure for Talin to get through radiotherapy with no GA and staff at Sydney Children’s Hospital saw that. They asked if they could use it for children needing radiotherapy and I agreed. It has now been in use for over 9 years and hundreds if not thousands of children have used this document to get through radiotherapy without a GA and spend more precious time with their families…

The first step is to involve the child from the very beginning in preparing for the treatment by creating a fun, hands on, play experience with the mask that will be required for their treatment.  Thermoplastic is the substance used to make the radiotherapy mask your child will be required to wear during each treatment.  There is a specific process that needs to be followed for it to be used safely and effectively. Some large hospitals have adopted unique methods of using decorated masks with children.  Ask your hospital if they offer these services. Pictured below Talin actually used the process to make a mask for his bear which he carried to each of his treatments.

Read and download this informative (.PDF) file to learn more about making and using a treatment mask to familiarize your child with their treatment requirement for Radiotherapy

My First Radiotherapy Treatment:

After you have downloaded and read Gerry Tye’s documentation (.PDF) of Talin’s first treatment, you will be very familiar with what may occur at your child’s very important first treatment.  Generally, the procedures will be very similar, but most likely will have some minor differences. Before you arrive, you will have a very good overall knowledge of what to expect.