LIVING WITH ACUTE LYMPHOBLASTIC LEUKAEMIA
“I wish he had never got it“
– Anush*, 18 years old
Sanjay* currently lives in Australia. He is 19 years old. His family moved to Australia from India two and half years ago. Sanjay shared the story of his high school friend, Anush,* who still lives in New Delhi and is recovering from Acute Lymphoblastic Leukaemia (ALL). Anush is 18 years old and they have been best friends since childhood. They played basketball together and spent all their time together, like best friends do.
Anush was diagnosed with Acute Lymphoblastic Leukaemia three years ago and had a Bone Marrow Transplant* a year later. He is currently on his last few rounds of chemotherapy. Anush first presented with intermittent fever, body aches, frequent vomiting and he was not able to eat.
His GP initially thought these symptoms were caused by a viral infection. However, due to the persistent nature of the symptoms, Anush was taken to the emergency department of a private hospital in Delhi.
He had more blood tests done which then led to the diagnosis of high risk Acute Lymphoblastic Leukaemia (which affects about 10-15% of children diagnosed). Due to the high risk nature of his Acute Lymphoblastic Leukaemia, he did not respond well to the initial chemotherapy, so then the haematologist decided to treat him with Bone Marrow Transplant.**
Anush was in a private Adult hospital for a month where he had his Bone Marrow Transplant. Upon discharge, Anush was still in a serious condition so his family kept him in a separate room at home for six months where he was well looked after by his family. Anush has two older sisters who are both over 21 years old and could help around the house. This took a bit of pressure off his parents so they could focus their attention fully on Anush’s recovery.
“Anush’s illness has put financial strain on his family”
Anush still visited the hospital regularly to have his IV chemotherapy and was able to slowly to recover at home. Anush had taken a lot of time off from high school for over a year because he suffered from dizzy spells and had difficulty concentrating. He was so weak that he stayed mostly in bed and didn’t feel like doing anything. He also worried about his future and doubted his ability to recover and start a normal life again. Sanjay would visit Anush’s home whenever he was back in Delhi to make Anush feel better. The hospital provided a psychologist and a counsellor to help alleviate his worries and anxiety. The counsellor still visits his home every month as Anush continued to suffer from post-treatment anxiety and depression. Those visits have been moved to ZOOM meeting since the COVID-19 pandemic started.
Anush’s illness has put financial strain on his family. India does not have a universal health funding system. Unless the family has private health insurance, out of pocket costs can be quite staggering for a treatment at a private hospital. Sanjay mentioned that the public hospitals in India are too crowded to get the same level of care and attention. India also does not have a national body like Leukaemia Foundation to support the patients in need. However, there are a couple of small non-governmental organisations which raised funds to provide financial support to those in need.
“Anush has slowly started to gain back his normal life”
Sanjay continues to have regular contact with Anush and his parents throughout Anush’s illness. Anush has returned to high school and has slowly started to gain back his normal life. But there are also days where he doesn’t feel well and has had to pull back from his daily activities. At school, Anush was put into a class with a small number of students and the school allocated a person to check on him every one or two hours at the start. His classmates also looked after him and were very supportive. Sometimes he could have a dizzy spell and he had to go back home in the middle of the class.
Sanjay went back to India early this year and he was happy to see that his best friend is recovering well. “I am really happy that he has recovered and getting back to studying. I thought about the situation and how much worse he could get, we were all very stressed about that while we were taking care of him.” He wished his friend never had A.L.L. .
*Names changed. Stock photo shown.
**Bone Marrow Transplant or Stem Cell Transplant is a procedure in which a patient receives healthy stem cells to replace damaged stem cells. Blood stem cells are produced in the bone marrow and can become any kind of blood cell the body needs.