‘Childhood cancers haven’t stopped just because of Covid-19,’ say parents of five year old whose bone marrow transplant is on hold

Families across the UK are facing challenges like never before, but for Allison Brown and her family, whose lives have already been turned upside down, Covid-19 is making life more difficult than ever.

Having a child diagnosed with cancer is devastating for any family, but having to receive this horrific news twice within your child’s first four years is acutely difficult.

That is what Allison and partner Joseph Richardson, from Bramley, Leeds, had to deal with when their daughter, Hannah, relapsed with acute lymphoblastic leukaemia just before Christmas.

Hannah was first diagnosed with the condition when she was just 11 months old. After responding well to her treatment, Hannah enjoyed a period of time feeling well, meeting every new milestone and enjoying school with her friends. However, last year Hannah reacted severely after contracting chicken pox to the extent that she was placed on a ventilator for a week, fighting for her life at Leeds Children’s Hospital.

“There were times when we wondered if Hannah was actually going to make it,” recalls Allison.

Following investigations, doctors discovered that Hannah had sadly relapsed and her leukaemia had returned.

The medical complications arising from chicken pox intensified the anxiety felt by the family. Allison said: “There were many complications that delayed Hannah’s course of treatment for her leukaemia. Even when treatment was able to proceed, we were in a position where we had a 48-hour window to see if it would leave Hannah facing another life or death situation.”

Despite the extremely challenging journey faced by Hannah, and everything she has been through, she still has a big smile on her face and enjoys singing and dancing on her bed.

Although Hannah is remaining resilient, Allison and Joseph continue to struggle with their daughter’s diagnosis and the additional challenges presented by Covid-19.

Hospital restrictions mean that only one parent can be on the ward with their child and they must remain there permanently to avoid bringing the virus to the ward.

It meant for more than a month Allison was unable to see Hannah or Joseph and they felt “ripped apart”.

Thankfully just before Hannah’s fifth birthday at the end of April, she was allowed home and the family was reunited.

“We were both relieved and terrified, although getting home was wonderful, we had to immediately drop everything and administer her chemo,” says Allison. Hannah is now waiting for a bone marrow transplant which has been put on hold due to the pandemic.

The family says they have had invaluable support from the Leeds charity Candlelighters.

Allison and Joseph heard about Candlelighters when Hannah was first diagnosed at 11 months old. They were approached by one of the Candlelighters team on the ward, who discussed the various support services they could access. However during this current crisis, Allison and Joseph know the impact of childhood cancer does not stop, and so neither has the support offered by Candlelighters, however much of this support has been adapted and is being offered virtually.

Allison has received a virtual one-to-one Talking Therapy, just one of the services that Candlelighters are continuing to provide at this time. “I found this immensely helpful, even if it wasn’t face-to-face, it was nice to have someone who knew the basis of what we were going through; somebody that you could trust and who understood what we were talking about.”

Candlelighters is also continuing to provide wellbeing sessions for families, and this is something Hannah’s father, Joseph, will benefit from. “We feel this will be a massive help; when life is going full pelt, you tend to find yourself not willing to take an hour to be mindful. It’s so helpful to have somebody to take the time to help you calm down and reflect. It’s great to have someone on the end of the phone or on a video call, using the same techniques as they would in person. As much as we miss having that face- to-face interaction, we totally understand why this can’t happen, so these alternative services are really going to help.”

Candlelighters has reassured Hannah’s family that there are other ways in which they will receive support virtually during the Covid-19 crisis. This includes regular check-ins with families, arts and craft sessions and peer support groups.

Candlelighters has also increased its grant provision
to alleviate the heightened financial pressure that families are facing. As a result, the 
charity has launched its ‘Together Tin’ initiative and aims to raise £525,000 to continue its extra support during the pandemic.

Allison says: “It is so wonderful to have that close connection and focused, orientated support from Candlelighters. You come to know the Candlelighters staff as one huge extended family. We feel it would have been very hard without the support of Candlelighters and we are extremely fortunate that we can continue to access to this kind of support.”

Allison and her family feel comforted knowing that Candlelighters will continue to be there for their family, and many other families during this challenging period and long into the future.

“Candlelighters have managed to make something beautiful in a very scary world,” says Allison.

COVID-19 is directly impacting on the money being raised across the charity sector and childhood cancer charity Candlelighters is already seeing a gap in fundraising, which it expects will worsen.

To help it to deliver its essential family support services and financial grants, the charity needs to raise £525,000. That is why Candlelighters, is asking people to support its appeal to help keep its candle burning 
and bring light to families in these dark times by making a donation, however big or small, to the ‘Candlelighters Together Tin’.

Its 2.6 challenge is asking everyone to carry out an activity based around the numbers 2.6 or 26 and fundraise or donate to their chosen charity.

candlelighters.org.uk/covid-19-ourappeal/