Aminath Mushtharee, Maldives

In February 2019, my beloved  son was diagnosed with Leukemia AML when he was 3 years old. He had a fall and was unable to walk. This was around the time he initially started to walk. Reaching childhood milestones were delayed as he has Down’s Syndrome. He became quite lethargic and started lying down to play and became quite inactive. His temperature spiked and was misdiagnosed for Dengue fever when I took him to the hospital. 

We flew to India for further tests and he was diagnosed with AML. I was shocked. My whole world shattered. I was overwhelmed with worry as to what could happen to him and to our family. It was like a nightmare that was occurring, except it was not. My loving son, already facing many challenges in life now diagnosed with Cancer, turned my life upside down. The doctors gave us his diagnosis in a counselling room with both my husband and me present. It is so important to be aware and understand your child’s usual behavior to notice if there are any changes and attend to it immediately. Had I not noticed the behavioral changes, I believe I may have accepted the Dengue diagnosis. This could have been disastrous as cancer would not be diagnosed. His inability to verbally communicate his thoughts, feelings and difficulties he faced added a further difficult dimension. We had to guess and anticipate and do what we felt was best for him.

The first day of chemo is etched in my memory as he stared at us with immense sadness, kind of indicating to us he knew what was going on. One of the hardest times was when he got pneumonia after his 5th chemotherapy session and he was put on a ventilator. Many times we came close to losing him but Alhamdhulillah he is with us. His treatment lasted for more than 9 months. He was given 6 cycles of chemotherapy. We had to stay overseas for 11 months for his treatment. Chemotherapy was followed by physiotherapy, occupational therapy and speech therapy to help him reach his developmental milestones. Unfortunately he went through major regression due to chemotherapy.

The experiences of a child fighting cancer and you yourself fighting cancer  are very different.  A child going through it is more difficult on many levels.  On a follow up visit for my son to India I was diagnosed with thyroid cancer. A routine follow up for a previously benign thyroid nodule needed to be checked further. A Fine Needle Aspiration Cytology (FNAC) showed there was a slight change of malignancy. Hopeful and praying all was good, partial removal of the thyroid gland, tests revealed it was malignant microcarcinoma. Unfortunately my doctor was out of town and the assistant gave me the diagnosis. Without eye contact, empathy or sympathy or even anticipating the shock could have, or the sadness and utter devastation I would feel, the way she imparted this news was like someone being given a common cold diagnosis. I thought to myself if this is what is written for me I will face it with courage and patience and do whatever is necessary to go through with our lives.

It took me a few days for me to process the news. I kept having flashbacks of my son’s diagnosis which happened some years back. I sincerely believed and knew I had to fight hard for my children. Thankfully I had a lot of help from my family and friends. My family were the caregivers of them when I was overseas for my treatment, which was a solace for me at this sad time.

In June 2023, just over a year ago I was diagnosed with a second cancer. On a follow up visit for my thyroid cancer, I tested positive for breast cancer. I was on close and quick follow ups every 3 months. Having gone through a previous cancer diagnosis was of not much help. I was just as scared and devastated. I anticipated things to be more difficult than the previous time. I became aware of the diagnosis during the scan. However many doctors and technicians tried to keep me from knowing the diagnosis, I am by now very familiar with the terminology and I could not hold back my tears throughout the scanning process.  

Though at some level I realized what was wrong I kept praying and hoping the result of the scan would not be what I was thinking it would be. This time the cancer diagnosis was given in an empathetic and kind manner by my doctor. His recommendation was for me to have a total thyroidectomy  while removing the breast lumps. Maybe with the second cancer diagnosis he too got a bit scared. Haha! Radiation days were extremely difficult and I had to prepare myself both mentally and physically for this ordeal. I had a further diagnosis to deal with by this time: depression and anxiety. Being away from my children for four months while I was in India for treatment was tough. I was continuing my education at that time  which was also a worry for me. With sweat and tears plus a lot of courage and stubbornness I completed my studies. Currently I am on 3 monthly follow ups.

My outlook on life changed with the birth of my youngest son and it reshaped entirely with his diagnosis for cancer. Taking life one day at a time approach helped me cope with these unexpected twists and turns in my life. I am able to keep my thoughts away from cancer during my treatment. This was completely different during my son’s journey. I was doing everything for him due to circumstances beyond my control. 

Family who always were supportive in every way from taking care of my kids to financial help and moral support. Friends  have helped me throughout this journey by lifting me and are extremely supportive and being just a phone  call away always. For anyone going through cancer they need others’ help and support to get through this life changing sentence.  It is  a difficult fight alone. Supportive people can make it a different experience and may |Allah Almighty makes us all supportive and helpful people to our loved ones and others.

I joined CSG 5 years ago when my son was diagnosed. But I became a regular in the meetings in the 2 years. The meetings help me a lot in many ways. How I see cancer has changed due to these meetings. And I would say that I didn’t drown in misery with my second diagnosis because of the support that was given to me by the members of CSG. Knowing other survivors and getting their feedback helps to deal with the situations that we face in this journey.