“Mama why am I suffering so much?” he asks. My sister replies, “Because you are the bravest of the brave.” I am sure there are plenty of other conversations that this mother-son duo share in that hospital room where the doctors are constantly monitoring my 12-year old nephew fighting a battle with a demonic disease called HLH. I get a few glimpses into their conversation on days when my sister is free to talk. The heaviness of her breath, the pause, the tone and texture of her voice is so embedded with this inexplicable grief that it makes me want to liberate into a howl. But I hear myself lying and telling her ‘it’s not the time to be sentimental, stay strong, keep pepping him up and keep feeding him’. I can say this much: I feel pain to the bone and I wish nobody, not even my worst enemy, suffers from ill health.
At other times sick of the nurses and doctors fiddling with his veins, he angrily tells my sister, “You just keep looking at me, you don’t tell them anything.” Right now, I know my sister would love to snap at everyone, at the world because they should have been home, him going to school, playing or running around. In the everyday conversation that my sister and I have, I keep telling her the signs are normal, he will have nausea, he will have temperature and it is my way of making her deal with the present. Twice she has asked me, “Will he get better with the stem cell transplant?” Concentrate on one thing at a time and take one step at a time, I tell her. I know where her questions stem from. After all which mother would like to see her child suffer to such a degree? I have turned in to the powers of praying now and I do believe the universe will listen to our prayers. I thank my friends for their concerns and well wishes. In these really anxious times, I am still trying to lead a normal life but turning to the computer and my world of friends do really make me feel good.
It’s been a a long journey for us. Just after his holiday in Australia last February, my nephew started developing fever which did not go for a few months until he was taken to the All India Institute of Medical Sciences where he was declared to have the EBV induced secondary HLH. I was there last August when I came to terms with this ugly word. It shook our world to find that this small child would have such a rare immune deficiency disease. Holy shit, there is a first for everything! Yet we were hopeful and happy it was not primary HLH and that his treatment under the 2004 HLH protocol followed worldwide would cure him. The greatest problem with this disease is timely diagnosis. I have just discovered an HLH Survivors & Angles group on Facebook and it’s amazing how little awareness there is about the disease. As someone in the group said, “it’s not as sexy a term as cancer.” There are nearly 400 members mostly based in the States and just a handful from England and Australia.
HLH can be caused by the Epstein–Barr virus (EBV) or a gene mutation. Normally in secondary HLH, there is a 16-week treatment of chemo and steroids and people have been well into remission after that for years. In our case, the disease came back a few months later post the first treatment and a stem cell transplant was necessary according to the protocol. I found through the HLH Facebook group that there were many brave hearts who succumbed to the disease because they were not diagnosed on time, yet there are many others leading normal lives post the stem cell transplant. It calms my nerves being with this group which is almost like a family because we are sharing a common pain. The motto is: Don’t ever give up hope.