A paediatric oncology ward is a very difficult place to spend time. Not only are you directly dealing with the cancer that your child is facing but you are also surrounded by other families experiencing the same trauma. It can be very tough to find the space, both physically and emotionally, to process what’s happening around you.
In the initial stages of diagnosis everything is alien to you. The language, the medication, the treatment, not to mention the fact that you may very well have to spend long stretches of time away from home. Having a child diagnosed with such a rare cancer means that you will have to re-evaluate every aspect of your life in a short period of time. Trying to come to terms with your situation can leave you feeling very isolated. It is important that you reach out and find support to help you through this most difficult of times.
Within the early stages of your journey the NHS should provide you with an onsite support worker. They generally visit the ward on a regular basis and are there for you to talk through your fears and expectations. They can also help you understand the treatment that is being offered to your child and answer any questions you might have.
You should also be aware of CLIC Sargent, the UK’s leading cancer charity for children. They are an independent organisation who are resident in most children’s hospitals. They provide specialist support and can help you find the benefits that you are entitled to.
The Drew Barker-Wright Charity also offers a grant system for newly diagnosed children with chordoma in the UK, to help parents through the shockwave of diagnosis. This grant offers some financial support to assist with the day to day living costs of being in hospital. The grant can be applied for with the help of your NHS or Clic Sargent support worker.
Please click here for more information and to download the application form.
Our charity is also developing Drew’s Gift, a present for the bedside of newly diagnosed children with chordoma in the UK. This is something we hope will provide some respite in all the chaos. Again, as the charity is still in its early stages, we are working towards having this in place as soon as possible.
If you are looking for support on a more spiritual level, all hospitals should have a multi-faith centre where you can reach out to your own denomination. Representatives of all religions visit the wards regularly and are there to talk through your situation and offer support through prayer.
One of the most difficult issues about coming to terms with your child having paediatric chordoma, is that it is most unlikely that you will find another family on your ward dealing with the same disease. The feeling of isolation can increase when you hear other parents discussing their children’s illness and sharing treatment plans and prognosis with each other. As most people will never have heard of chordoma you may find you want to reach out to other parents who have experience of dealing with this illness.