After initial tests at TMH, we were devastated to hear the news that my sister had 3rd stage of Primary Mediastinal B-Cell Non-Hodgkin’s Lymphoma! It is a type of blood cancer that starts in white blood cells, grows fast and symptoms are not visible in initial stages. It mainly affects adults, but my sister was so unfortunate to have it as a child! The lymphoma was large in size in the chest (14 x 5 cm) and was causing breathlessness.
Due to the urgency of the situation she was admitted to private ward initially which was very expensive. My mother does not speak Hindi well and was very stressed in this situation because she was alone. In the first phase of treatment at TMH, Madhurima received 6 cycles of chemotherapy during 7 months (she also had chickenpox which delayed the treatment). It was a very hard time for us, especially my mother who was all alone in Mumbai and no idea what to do. She would cry every day on the phone. My sister was disturbed by this and would blame herself for this; she felt that she will no longer be able to go to school and fulfill her dreams. She is a very bright student and has won many awards in academics and extra-curricular activities.
However, there were lots of personal expenses that happened during this treatment. Fortunately, my mother and sister were given shelter by St. Jude’s Home which gave free accommodation and basic ration for cooking which saved some money. But fruits, vegetables, travel by taxi to avoid infection and buying medicines spent a lot of money. And since Tripura is far away from Mumbai, my mother and sister had to take flights at short notice which further increased the expenses.
Our small savings were badly exhausted and we had to ask money from people which was embarrassing. My sister needed special diet, medicines and tests which increased our monthly expenses. So my uncle told my mother that he will take care of my expenses from now on so that my family doesn’t have too much financial burden and can focus on my sister’s treatment. My mother was especially very exhausted and broken fighting alone in Mumbai. My father took a small business loan to keep the shop running. Madhurima started going to school again and was so happy with her friends and teachers!
My sister had to return to Mumbai after 3 months. But this time my father had to accompany my mother as she could no longer handle things alone. He had to shut down the shop and now there is no means of earning for our family. There is also no way to pay back the installments of the loan he has taken.
But we did not know that worse was yet to come. After checkup at TMH, PET scan showed that her cancer had relapsed! We were completely broken. There were 3 initial cycles of chemotherapy which did not respond well and the malignancy spread further. The doctors advised immediate bone marrow transplant (BMT) after another 2 higher dose of GDP chemotherapy to control growth of bad tissue. This took about 7 months. I was brought to Mumbai to do tests so that it can be checked if I can be the donor for BMT of my sister. Fortunately there was 100% match!
After PET scan was cleared, doctors told us that Madhurima will have to be immediately transferred to Jaslok Hospital for BMT within 21 days of last GDP chemo because the waiting period for BMT in TMH was 1 year! This was bad news for us as this hospital was in a different location and far away from St. Jude’s Home where my parents and sister were staying. They had to leave that place and take up a room near Jaslok hospital which was expensive along with other daily expenses. We then came to know that the cost of entire BMT treatment (actual transplant and follow up procedures) will be Rs 20 lakh ($30820)! We had no idea from where we will get this money! Within 10 days my parents had to visit multiple trusts to arrange some initial money. Fortunately a few Trusts gave us some money to start the treatment.
The transplant was done successfully on 22 January 2018. However Madhurima fell ill after a few days and had to be immediately admitted to the hospital again for 8.5 days which further increased the expenses. She has now been discharged for remaining treatment and stays with my parents in their small rented room. My parents and sister have now been staying in Mumbai for about 9 months for second phase of treatment. They have to go to hospital every week for 2-3 days for taking many tests and medicines.
- Hriturima Baidya