“I am only one,
But still I am one.
I cannot do everything,
But still I can do something;
And because I cannot do everything,
I will not refuse to do the something that I can do.”
Isabel Baker lost her life to Infantile Acute Lymphoblastic Leukaemia on August 12th 2015.
Isabel was diagnosed at just 3 weeks old and fought hard for a year before passing away the week after her first birthday.
This is her story as told to the Bournemouth Echo in April of 2016 by Isabel’s mum Vicky. Vicky’s pain is palpable, I’ve been in tears reading through it … so be prepared. It’s not easy reading.
I’ve quoted excerpts, you can read the full article and see photographs attached to the article via this link:
Vicky, who set up a foundation in Isabel's name to help other parents who have suffered the ultimate heartache of losing a child to cancer, said: “Isabel was everything to me. She was my whole world. She was such a happy baby.
“It’s impossible to put in the words the love between a parent and a child. We never spent any time apart. I would have traded places with her and given my life for her without thinking twice. I want to do everything I can to make a difference in the future as I wouldn’t wish the pain of losing a child on anyone.”
The newborn had a rash but Vicky became increasingly concerned when Isabel's stomach became enlarged and she developed excessive bruising on her body. Isabel was rushed from Poole Hospital to the Piam Brown ward at Southampton General Hospital by ambulance. She was diagnosed with Infantile Acute Lymphoblastic Leukaemia, an aggressive form of blood cancer and she started chemotherapy immediately.
“Three weeks before, it was the best day of my life when I met her for the first time. Suddenly everything changed. I thought my baby was going to die. I thought, that’s it. They had to wheelchair me to the ward. I couldn’t walk. I was distraught.”
Within days, Vicky was told the heartbreaking news her baby had just 30 per cent chance of survival.
However despite the prognosis, there was a glimmer of hope when Isabel went into remission in January.
A bone marrow donor was found from Germany matching Isabel's rare tissue type and she was due to go to Bristol Children’s Hospital for a transplant, however she relapsed and was unable to go.
Isabel underwent a further course of treatment but it did not work. Without any other chemotherapy options available, Isabel’s parents took her to Sheffield Children’s Hospital where she underwent a clinical trial for a month.
Vicky, explained: “We had to try everything we possibly could. I would have gone to Mars if it meant my baby lived."
However there was further heartache. Despite initial hopes the treatment was working, Vicky and Luke Baker were left shattered when there were no changes to her condition and they were told the only option was to start palliative treatment in May.
Vicky, said: “We were devastated. There are no words. It was Isabel who kept us going. We had to stay strong for her. I was only a normal mum for three weeks so all I had known was being a mum to a child with cancer.”
In her final months, Vicky decided to care for her daughter herself at home where she administered her chemotherapy, medication and feeds.
Isabel's family were determined she would stay strong enough to be able to experience a first birthday party.
Vicky, said: "My friends organised it and it was lovely. They put up bouncy castles, there were barbecues, my friend dressed up as Isabel's favourite, Peppa Pig. Isabel had so many presents.
I kept giving her presents to open every morning. I couldn't give her enough."
Days later Isabel deteriorated and on August 12 2015, eight days later, Isabel died in Gully’s Place in Poole Hospital.
Vicky, said: “For the last few days Isabel was asleep all the time as she was on strong medication. Her breathing was extremely laboured and she was just out of it. Her dad and I just stayed with her holding her hand, telling her how much we loved her. Isabel wouldn't sleep without me holding her hand. She was very loving. We used to sleep together and she would fall asleep stroking my face or playing with my hair.
“After she passed, we stayed with her until we had to hand her over to the funeral directors. We washed her body and put her in the clothes we had chosen for her. I went to see her every day afterwards until I wasn’t allowed anymore.”
Today, the pain Vicky feels is as raw as the day she kissed her daughter goodbye and carried her tiny coffin into her funeral but she is determined to keep fighting in her daughter's memory.
With the help of her friends, Vicky set up The Isabel Baker Foundation and thanks to their fundraising efforts, they have raised £10,000 to fund research into kinder treatments and cures for children as well as to provide grants to families who have lost children to cancer so they can take more time off work to grieve.
Already, they have helped seven families, and for Vicky, it gives her purpose.
"I always wanted to do something in her name," she explained. "She kept amazing people. She always fought so hard and I didn't want her to be forgotten. All the support you have when a child is ill, just disappears when they die. I get one email from someone we have supported or another landmark signed up to Glow Gold in September and that gives me a reason to get out of bed."
Vicky believes her loss has taught her to live life to the full and she hopes to inspire as many people as possible who have suffered the same.
She said: “I cry all the time, literally every day. Losing a child changes your whole perspective. You learn to appreciate every second, every moment. I'd give anything for Isabel to wake me up at 3am to play with her toys.
"I don't take life for granted because you don't know what's going to happen tomorrow. Isabel never stopped fighting and I won't either. It helps me still be her mum even though she's not here."
Every day 10 children and young people in the UK hear the devastating news they have cancer. Although eight in 10 will survive cancer, it is still the leading cause of death from a single disease among children and young people in the UK.
Details of The Isabel Baker Foundation can be found on the Guitars 4 Good 'Charity Links' page.