A father from Basingstoke whose daughter is undergoing treatment for leukaemia is sharing his family’s story for Childhood Cancer Awareness Month (CCAM) this September.
In October 2019, after she began to show signs of being unwell, Chris Pearson and Lucy Griffiths took their then three-year-old daughter, Tessa, to the doctors, with no idea of the devastating, life-changing news they’d soon receive.
Chris said: “Tessa had been very tired and looked pale, both of which were very unusual for her, so we felt something wasn’t right.
“She was seen by a nurse practitioner who, after examining her, called the hospital for guidance and a second opinion.
“We were then asked if we wanted an ambulance or to drive to the hospital ourselves.
“At this time, we had no idea of the news that lay ahead of us.
“After a series of tests, Tessa was diagnosed with acute lymphoblastic leukaemia (ALL), turning our world upside down.
“It was every parent’s worst nightmare. We felt a wide range of emotions, from feeling angry, unlucky and lonely, to frightened and extremely sad.”
Tessa’s treatment - originally due to take two years, with time split between Southampton Hospital’s Piam Brown Ward and Basingstoke and North Hampshire Hospital - began in November 2019, with her spending the first five weeks of it in a hospital bed.
During this time, she needed regular physio to encourage her muscles to remember how to walk, while on day five of her treatment, which included chemotherapy and being fed through a tube in her nose, Tessa had to be transferred to intensive care due to breathing complications.
When she was finally allowed home, accompanied by a “carload of medical equipment, drugs and instructions”, it was only a matter of days before she had to return to the hospital, with several such trips following since.
Almost two years later, Tessa, now five, is currently receiving daily chemotherapy, a stronger dose once a week and, every four weeks, an even greater dosage. Every three months she also has chemotherapy injected into her spine, plus antibiotics at weekends and steroids once a month.
Her journey has been long and will continue to be over the next few years, with regular check-ups required when her treatment ends.
Chris said: “On Boxing Day, Tessa will be able to move to just antibiotics at the weekend but will still need weekly blood tests.
“We’ve five months of treatment left, at which point she will have been having chemo for two years and three months. Then, we move to a monitoring phase and the chemo stops.
“Her prognosis is good, but the condition will need to be regularly monitored over the next few years to see if the leukaemia returns.
“There are still checks each year and I believe at five years, maybe even 10 years, but we’re focusing more on the short term and just enjoying life in the now.
“We’re cautiously optimistic that this will just be something she went through when she was young and will move on to have a normal, happy childhood – and life.”
As parents of a child undergoing treatment for leukaemia, Chris described how he and Lucy, who also have a two-and-a-half-year-old son, Joshua, have to maintain constant vigilance over Tessa, due to the effects of chemotherapy weakening her immune system and putting her at greater risk of infections.
He said: “As parents we’re on constant high alert.
“If Tessa’s temperature gets above 38 degrees at any point, we’re unable to give her Calpol like normal parents.
“Instead, we have to go straight to hospital, usually for a three-day stay with IV antibiotics and lots of tests. This happens once every two or three months.
“Her immune system is low from the chemotherapy so any normal cough or cold knocks her for six.”
Adding to the stress of Tessa’s treatment, the COVID pandemic arrived in March 2020, forcing the family to shield for the first few months.
During this time, Children’s Cancer and Leukaemia Group (CCLG) provided regular support to parents, answering questions and giving practical guidance on how to live with, and manage, the risks.
This support has prompted Chris to make a donation to CCLG via its Business Circle sponsorship.
He explained: “CCLG’s guidance has been invaluable, and we were able to refer to it in meetings with our consultant every month to check we were doing the right things.
“Like many parents of children with cancer, we were extremely frightened and concerned about the risks of Tessa contracting COVID-19, especially with her having almost no immune system.
“The advice CCLG provided helped put our minds at ease in a factual and scientific manner, meaning we had a reliable source for questions and answers which didn’t seem to exist anywhere else.
“It’s because of the excellent support we’ve received from CCLG that we decided that our business – Front Page Advantage – should become a sponsor and make a donation.
“Every three months we give some of Tessa’s blood to help with the trials which are supported by CCLG.
“The charity is probably less visible to the patients, but an invaluable support for the parents. As parents we have to keep life moving forward while the treatment continues, and this is where CCLG has been so important to us.
“We’ve benefitted from other charities, for which we are very thankful, but CCLG seem to best understand and support our needs as parents.”
Despite the effects of her treatment, Tessa remains active and even surprises the nurses each week by changing her own bandages.
Chris added: “Tessa loves school and now does a junior park run, albeit she finishes last because chemotherapy has destroyed her stamina.
“Previously she used to swim twice a week, but her Hickman line isn’t allowed to get wet, so unfortunately, she can’t go swimming until the treatment is finished.”
Having written a book he hopes will help other parents affected by a childhood cancer diagnosis – The book I hope you never have to read, available on Amazon – Chris has a message for other families facing the same journey.
He said: “You aren’t alone and lots of parents will be having the same thoughts and feelings.
“Seek out the advice of charities and don’t be afraid to ask for help from family, friends and even neighbours.”