PAEDIATRIC CHORDOMA SUPPORT
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.
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.
THE CHORDOMA FOUNDATION
This is an organisation based in the US which serves as a resource for chordoma patients and families around the world, at any stage of their journey with chordoma. They offer various services which can be of help:
Patient Navigation Service
Their patient navigators can answer questions about chordoma and provide information on treatment and potential trials that may be available to you. They can also connect you with others in the worldwide chordoma community.
A private online community where parents affected by paediatric chordoma can come together to exchange information, share experience, and support one another.
Peer Connect Programme
The Chordoma Foundation has a free, confidential peer-to-peer support program that connects anyone touched by chordoma with another person whose experience with chordoma is similar.
If you’re interested in talking to someone who has been through a similar chordoma journey, Peer Connect can help. Once registered, you will be matched with a trained Guide who has had a similar experience with chordoma and who has had to face many of the same challenges that you now face. All Guides are trained to provide a listening ear, serve as a sounding board and, if requested, suggest helpful information and resources. The connection between you and your assigned Guide may involve only a few phone calls, or it may develop into a longer relationship, whatever is most helpful for you.
If you would prefer something less formal there are a handful of private Facebook groups you can join.
Parents of Children with Paediatric Chordoma Age 0-16 Facebook Group
This page is run by Drew’s charity and exists alongside the Chordoma Survivors Facebook Group (see below). It is a much smaller group, purely for parents of young children with chordoma. The page allows parents from around the world to connect, share their journey’s and offer emotional support to each other. Before being admitted to this private group you will need to answer a few questions concerning your child’s diagnosis. This is to protect the private space and avoid spammers. Simply follow the link below and request to join.
Chordoma UK Support Facebook Group
This is a private (closed) group for people living within or receiving treatment in the UK and Ireland who have been affected by chordoma and would like a safe place to discuss any range of matters related to chordoma with like minded individuals.
Chordoma Survivors Support Group on Facebook
Newly diagnosed patients, chordoma survivors, and family members can connect with others in the chordoma community through a private Facebook group*. This close-knit group exists to help answer questions, share personal experiences, and serve as encouragement throughout your journey with chordoma. Approval is required from the from a group moderator is required simply to protect the privacy of the more than 1,800 members and prevent spammers from entering the private Facebook space.
*While members of this Facebook group are involved with the Chordoma Foundation and The Drew Barker-Wright Charity, the group is privately run and separate from Drew’s charity and the Foundation.