Supporting Terminally Ill Children

One evening I noticed a lump on my son Jaxson’s neck. After some blood tests in hospital I was taken to a room, away from Jaxson, to talk. The nurse was carrying a box of tissues and I knew it had to be something bad. 

Completely alone, in that sterile environment, I found out the devastating news that my wonderful little boy had leukaemia at just three years old. 

That first night I sat in the hospital room alone whilst Jaxson slept. I just cried and cried. I couldn’t sleep as I didn’t want to take my eyes off him.  

Over the next months, Jaxson endured manytreatments, in and out of hospital, in-patient appointments and monthly lumbar punctures.  

Those are the times when you need somebody there but with Covid added to the mix, we felt really alone. We didn’t see friends or family as we were just exhausted and our daughter Bella, who was only 14 months at the time, had to live with my mum. 

Our lives were a mess. We were just surviving. Just trying to cope. 

In January 2023 Family Support Worker Wendy first visited us in our home. Both children immediately loved her. They loved they had someone else to play with, someone else to give them attention and that was wonderful.  

Having Wendy around gave me time out, a chance to do the jobs I needed to do, prepare lunchboxes for next day, take the dog for a needed long walk, and just to get a bit of ‘me time’.  

I had closed myself off but with Wendy I had someone to open up to. She has worked with other families in similar situations and understands how our lives are turned upside down. Talking to Wendy helps me cope better.  

We are eternally grateful for having such amazing support from Family Support Worker Wendy. 

We are blessed that, in February this year, Jaxson rang the bell to mark the end of his cancer treatment.  

There are so many families like mine, that may be feeling so helplessly alone and desperate, who need this specialist supportfrom Rainbow Trust Family Support Workers. It is only thanks to your donationsthat my family received this supportthat we so desperately needed. Thank you. 

Links:

• Sponsor a Family Support Worker like Wendy today
• Find out more about Rainbow Trust

I was supported by Rainbow Trust for the first time when my middle son Billy, now six, was in hospital. When my son Teddy was diagnosed with the same condition, I knew I could have the essential support I needed.

When Teddy was one year old he was diagnosed with a very rare and severe immunodeficiency. He suffers frequent infections, viruses, and stomach bugs. Without a bone marrow transplant it can be life-limiting.

In August 2023, when Teddy was only 18 months old, he had his bone marrow transplant. It was an incredibly stressful and isolating time for me. We had to go to a hospital in Newcastle, 300 miles away from my older sons, Billy, six, and eight-year-old Freddie, and our home.

I slept on a camp bed next to Teddy for the three and a half months he was in hospital. Family and friends were not able to visit us due to Teddy’s compromised immune system. Although we had a lot of virtual love, it was really hard because we were completely isolated and I was on my own for most of it.

Our Family Support Worker Emma was an absolute legend. We always really looked forward to when Emma came round, we called it ‘Rainbow Day’. I don’t know how I would have managed without her. She was there for us throughout Teddy’s treatment. She saw me cry many a time.

Emma had experience on the bone marrow transplant ward, so I felt safe leaving Teddy with her. I knew that I could get away and just do normal things like go to a shop. That was really important for me. Those breaks she allowed me to have were so meaningful.

Emma helped feed Teddy and change his nappies. She also always had fun activities for him to do too, such as colouring, playing with toys, and singing. He really loved it when he got to do messy play. It made him laugh and smile, which lit up the room.

Not only did Emma look after Teddy and make him laugh, she supported me emotionally too. That was so needed and very important. She listened to how I was doing and helped me to get rid of whatever weight I was feeling.

We are now back at home and things are a bit calmer but all of the stress from the past few months has really hit me. He doesn’t yet have a functioning immune system, so he just can’t get rid of viruses. However, I am positive that Teddy will be able to live a normal life, just like his older brother Billy.

Rainbow Trust Family Support Workers help is a lifeline to families like mine, caring for a seriously ill child.

It is only thanks to your donations that Rainbow Trust can give life-threatened children and their families this expert support for as long as they need it. I am grateful for your wonderful support.

Links:

• Sponsor a Family Support Worker like Emma today
• Find out more about Rainbow Trust