Terminally ill children in isolation need you

One morning in February 2021 five-year-old Kahmari woke up unable to move his arms. He was in a lot of pain so his mum, Krystal, took him to the doctor, who prescribed painkillers. The next day Kahmari was worse. Krystal was very worried so took him back to the doctor who referred him to the local children’s hospital.

This appointment was not until the following week and by the weekend Kahmari was feeling so unwell that Krystal decided to take him to emergency. After several tests, the doctors gave Krystal the devastating news that Kahmari had Acute Lymphoblastic Leukaemia. Krystal said: “I could really not comprehend what was happening. I couldn’t believe what I was hearing. I felt really upset, I was angry, I was so very sad”.

Kahmari was in hospital for two weeks. His first course of chemotherapy treatment and steroids was for six weeks; this treatment made him feel very ill and he was very upset.

Krystal is a single parent and she doesn’t have a wide network of support. This scary situation was making her feel isolated and very tired and stressed, coping alone with the pressure and worry of Kahmari’s diagnosis.

Kahmari was referred to Rainbow Trust and the initial assessment with Family Support Worker Wendy was completed over the phone due to the ongoing restrictions of the pandemic at the time.

In March 2021 Wendy started to support them at the hospital. Wendy worked on building a bond with Kahmari to eventually allow much-needed respite for Krystal. Kahmari found it hard to pronounce Wendy’s name so she took the new name of ‘Wenshy’.

Krystal said: “Kahmari would ask everyone at the hospital if Wenshy was there, he would call out Wendy’s name to any lady with brown hair and I had to count down the days until he next saw her”.

In April 2021 Wendy started supporting the family at home too. Wendy takes Kahmari to the park to ride his bike and play football, or they do art and crafts. But what Kahmari likes most is when Wendy helps him reach the next level on his Nintendo game. This fun time with Wendy provides respite to Kahmari’s mum and also an outlet and emotional support for him, as he navigates and understands what it means to go through treatment and live with cancer.

On top of the challenge of dealing with her son’s serious condition, and to make things worse, Krystal lost her job due to being in hospital all the time with Kahmari. Like many people in this situation Krystal is anxious about money. Wendy provides emotional support to Krystal and also helps by signposting her to information and financial benefits to which she might be entitled.

Although Kahmari’s treatment will not finish for another two years, Krystal is feeling much more positive and has started an Occupational Therapy course at university. Wendy will continue to support the family until they feel able to cope on their own.

Krystal said: “I just want to say thank you to Wendy for putting in the extra effort during this difficult time in our lives. Just having Wendy around playing with Kahmari and keeping him entertained whilst I have a break has really helped. I couldn’t imagine life without her. Her positive attitude has helped us to continue to feel motivated”.

It is only thanks to your donations that we can give life-threatened children and their families this expert support for as long as they need it. Thank you for your wonderful support.

Links:

• What seriously ill children would do if they had a magic wand
• Sponsor a Family Support Worker like Wendy

Family Support Worker Jayne gives us an insight into some of the families she supports

I started working for Rainbow Trust in September 2007. The families I support are all very different: they have different needs, the ill children’s conditions are varied, the families’ situations are diverse and living with childhood illness and the trauma and stress this may cause manifests in many contrasting ways.

We listen and help practically without judging. We are there when families who are going through immense pressures and difficulties need us the most.

Noah is four years old with a heart condition and complex needs. Noah has just had major surgery which will hopefully see him into adulthood.

Noah’s mum, Clara, has some family support and I mainly provide face to face emotional support, two hours every week. It is very stressful and isolating to have a child with such complex needs. Emotional support is mainly about listening rather than giving my opinions. I am a sounding board and can suggest techniques to cope with difficult situations, manage negative emotions and I can offer potential solutions that may help in some instances. Sometimes a cup of coffee or getting out of the house with somebody like me could be just what is needed to help keep everything together.

We also talk on the phone twice a week, usually for about half an hour, to discuss anything that may be worrying her, and I go to some hospital appointments with them.

Daniel very sadly died four years ago. He was 12 years old and I had been supporting the family since 2016, following his diagnosis of cancer. They needed practical and emotional support.

I used to go to the house and spend time with Sandra giving her emotional support and helping with household chores whilst Daniel went to hospital for treatment.

Six months after the funeral Sandra told me that she would like to have a stone and plaque for Daniel’s grave. Her husband, Ryan, found this very difficult to cope with so I went with Sandra to the stonemasons to organise the delivery and unveiling.

I now pick Sandra up from home every month and take her to the cemetery to tend the grave. We used to do this every week but this is less frequent now that she is better able to cope. Sandra gets a lot of comfort from these visits. While we tend the grave we talk about her feelings, her grief and about when Daniel was alive.

I have been supporting Caitlin’s family since March. Caitlin is 10 years old and is being treated for a severe heart condition.

Caitlin and her mum, Andrea, had a whole day of appointments at hospital, involving lots of tests, meetings and check-ups to see if she is eligible for a heart transplant.

I drove them to this appointment, leaving home at 5am to pick them up at 6am. Whilst I drove, I listened to Andrea, who was very concerned about what was going to happen at the appointment. We arrived 20 minutes early which allowed me to show her around and try to make her feel more at ease.

Caitlin is scared about what’s going to happen, she knows her heart is not working well. Andrea is very upset because she may not be able to have a transplant. They both need support to be able to cope with this very traumatic situation.

Some days are very rewarding: a family may have positive news, or I can see that my help is really making a difference. It may even be that a family doesn’t need me anymore, which is always lovely because it means that they are doing well and able to cope. But some days can be very challenging. I am a keen gardener and my garden is my sanctuary; gardening is my coping mechanism. We are also provided with specialist supervision from a professional external counsellor once a month or more often if needed.

We also have supervision with our manager once a month and once a week we have a team meeting, where we have the chance to share and support other team members. Being a Rainbow Trust Family Support Worker is a wonderful and very rewarding job.

It is only thanks to your donations that we can give life-threatened children and their families this expert support for as long as they need it. Thank you for your wonderful support.

Links:

• Sponsor a Family Support Worker like Jayne