I was born a month early because I had heart problems and was really tiny. At birth, I only weighed one pound. The hospital staff made the immediate decision and my twin sister and I were airlifted by emergency helicopter to Children’s Hospital to be in the NICU there.
My twin was discharged home after one month, however, I had to stay longer. I had three holes in my heart and had three open heart surgeries during my first few months of life.
I also received a g-tube in my stomach and wasn’t able to bottle feed for the first two years of my life. I still have the scars from those surgeries and g-tube placement.
By the time I was finally discharged home to be with my twin and family, I had stayed in the NICU for about the first 18 months of my life.
However, that is not where my health journey ends. I was also diagnosed with Bloom syndrome which most people don’t know about. Bloom syndrome is a rare, inherited disease that causes problems with DNA repair which causes a higher risk of getting cancer.
Bloom syndrome also makes me a much smaller, shorter person with narrow facial features. Throughout my life, this has affected me in many ways such as my growth development being much slower than others my age.
At a very young age, I was also diagnosed with hyperthyroidism which causes my thyroid gland to produce too much thyroxine. This accelerated my metabolism and caused major weight loss, despite my already small build.
When I was 19, on November 28, 2018, I was diagnosed with Hodgkin’s Lymphoma.
However, when I started my chemotherapy treatments, I was told that I now had a diagnosis hypothyroidism, which, does the opposite of my previous hyperthyroidism diagnosis and doesn’t produce enough thyroxine. But, so far I haven’t had any changes despite the fact that this diagnosis may cause unintentional weight gain.
After the Hodgkin’s Lymphoma diagnosis, I was on chemotherapy from February 8, 2019 through October 17, 2019. I had to try two different types of chemotherapy because one had made me very sick and caused liver problems and an increase in blood sugar. During this time, I was also put on TPN due to lose of weight associated with the chemo treatments and had an NG-Tube placed that June.
My chemotherapy treatments were every two weeks during that time. And, due to my Bloom Syndrome diagnosis, I was unable to have radiation treatments.
In addition to the chemo treatments, I had a biopsy to remove lymph nodes, a port implant, liver biopsy and bone marrow transplant.
I am now 21 years old and have been off chemotherapy for over 7 months. I still struggle with liver problems and I still follow up regularly with my oncology team but I look to the positive in my life and am grateful for my sister, family and medical team.
For more from Aaysha follow on Instagram: @my_cancerjourney