James’ mother shares: “Before James’ first bone marrow transplant, he received a broviac (port), and a very traumatic procedure turned out to be “the golden handle of hope”. He did not have to fear regular blood tests, needles and being held down by a number of staff, who had to insert needles into him anymore. Before his implant, he struggled and kicked every time, as he had an overwhelming fear of needles after months and years of tests / treatments…”
The broviac made long-term oncology – hematology treatment a little more bearable for James – read about the benefits of broviacs & help fund purchasing more of them for our CANSA TLC children…
In Loving Memory of James Hayes:
James was born in 2004 and passed away in 2012. He was diagnosed with Fanconi Anaemia (FA) when he was 2 and a half years old. (FA leads to bone marrow failure and increases the risk of certain cancers).
In the beginning James visted the hospital regularly – this increased to six weekly visits in his case, as his bone marrow started failing. A bone marrow aspiration showed that he needed a transplant urgently.
James had to undergo chemotherapy before he could start the transplant procedure and a broviac was inserted to help make treatment more bearable. He received the bone marrow transplant in November 2011 and was hospitalized until December.
For a short while he only visited the hospital on daily basis for a check-up.
In January 2012 his health deteriorated and he was readmitted into hospital. The graft did not take and he had to receive another transplant in February. It was fortunate that his 3 year old sister qualified as a donor for the second transplant as well.
The harvesting and transplant took place in two different hospitals, and James’ mom and dad had to take turns to spend time with James and his sister. Having two children in the paediatric oncology unit was extremely stressful for the family. James had to miss out on family life outside of the hospital and his little sister had to miss out on having her mom and brother at home.
Due to high risks after the failure of the first transplant, James had to receive radiation and he stayed at hospital in isolation for 3 weeks.
Unfortunately, hopes were not high for him to engraft successfully. James was discharged to spend a bit of time in his home environment, but he was only home for 10 days. He then was re-admitted to hospital, where it was confirmed that he had developed a severe infection. Tests also revealed that he did not engraft.
The only option left was to make use of an alternate donor that was previously identified on the bone marrow register. This time James stayed in isolation for quite a while.
His parents kept on hoping that this time things would be better. Sadly, the hospital became more of a home to James than home itself. James spent his days going back and forth between home and hospital and experienced disappointments, for example, when he had a positive engraftment, only to lose it again.
The severe treatment affected his lungs and he also had to receive treatment for this.
Throughout his treatment, James was still just like any other young boy who experienced the excitement of a birthday (in hospital) and of two loose teeth (the tooth fairy visiting the ward secretly on two occasions).
A fourth futile transplant attempt was made, but James’ body was too weak. He remained in ICU for six days and then returned to the isolation room, which became the only ‘home’ he knew, until he passed away nine months later.
