Baz’s Story

Patient name  Baz
Age  8 years old
Admission date  21 November 2008

Patient history

Baz was 7 years old when he was first brought to our attention in February 2008. He had been sent home by his oncologist with poor prognosis of no more than a few months to live. He had neuroblastoma.

But as soon as Baz arrived home, he insisted on going back to school, refusing any visits by the oncology team and proceeded to live life as a 7-year old would.

Unfortunately in September 2008, as his condition began to deteriorate, he had to stop going to school.

At Rachel House

Rachel House’s nurses began to visit Baz at home in November 2008. By then, he had been in his wheelchair for several months. The long hours of sitting had caused large wounds to develop in the sacrum area.

Baz was an incredibly spirited boy, with strong likes and dislikes and was not shy in voicing his opinion. He was greatly loved by his teachers and friends in school, and many continued to visit him months after he left school. Baz was very much the centre of his universe, whether at home or in school.

Whilst our team provided symptoms and pain management for Baz’s wounds, his family continued to actively pursue alternative medicine in the hope of winning the war against the cancer.

In March 2009, Baz went through a horrific time. He could not sit or lie down without causing incredible pain, and had to be carried all the time. The pain was so bad at times that he would be break off in heartbreaking screams.

By April 2009, the pain settled as the nerves around the area had “died off”, but other worrying symptoms had set in. Baz was no longer able to sit, but was lying most of the time in bed. He suffered from terrible oedema of his legs (swelling with fluid under the skin) accompanied by worsening ascites (swelling in the abdominal area). He was losing weight fast. But thankfully, pain was only present when he had to change his position in bed. An air bed was brought in to provide him with greater comfort, but that did not stop the bedsores from developing.

 

Baz’s last days & the family’s journey

Baz survived longer than any of us had expected. The spirit of the child fought hard to stay in this world, despite the devastating physical conditions. He was a brave little warrior.

He died in July 2009, 15 months after he was sent home from the hospital to die. He managed to celebrate his 9th birthday on June 28th, surrounded by his family and our team, and a visit from his celebrity idol, Idola.

 

Testimony from Baz’s family:

“Rachel House’s presence has helped us greatly, especially in teaching us how to provide the best care for Baz at home. I am very much moved and touched by nurse Alisda and the other team members’ efforts in making his last birthday a memorable one, and fulfilling his last wishes. We hope you will be able to continue to get funding to provide this non-hospital like care to enable patients like Baz to stay at home with his family and not needing to be in hospital where he would feel isolated.”