A few years back a family walked into our day care centre on a Sunday morning. The reports showed that they had been visiting quote a few hospitals over last few years. Their kid needed blood transfusions every few days. He had severe iron overload and a massive spleen and liver. They had been advised to proceed with transplant from unrelated donor and the intent to come was basically to see if we could provide some assistance in doing so. The problem was that there was no confirmed diagnosis on any of the reports.
One thing that we had learnt over time was that the outcomes of transplant are likely to be good if the kid is in good shape for transplant. This little boy had extraordinary damage to his body thanks to years of mismanagement. We offered the family to stay at our centre for a few months and get treatment to diverse the damage - something we call downstaging. The family agreed. With a lot of adjustment and difficulty they organised to keep the mother and the boy in Bangalore while he received suggested transfusions, chelation and a medicine named hydroxyurea under close monitoring.
As weeks passed, the boy improved rapidly. When he came, he his mobility was affected and he was hardly cheerful. As his medical status improved, his smile came back. His parents trusted. We found an expert in Italy who was keenly interested in the disease that he was suspected to have and after some email exchanges, it was organised to send his blood sample to Germany and thereon to Italy. Within a few months, we finally had what was missing all the years of his medical problems - a diagnosis!
Within 6 months the boy was in much better condition. By now the family had made up their mind to proceed only at our centre for permanent cure. The kid had no full match in the family and yet the mother had a good haploidentical match. The family was keen to get rid of the disease and accepted the risks associated with the transplant. However, the clinical team suggested that removing his spleen could potentially get all his symptoms out of the way. The family understood and agreed to proceed with spleen removal as adviced. A little surgery was done and then the clock ticked to see if he would still need blood transfusions. In the mean time family went back home. This was in early 2017.
One year later when the kid came the frequency of transfusions was much reduced and the kid was now doing very well. From being a couch potato he was playing all over the place. Parents of course, were relieved. The team decided to hold on further and see what happens.
Yesterday we got an SMS saying that it is more than a year since the kid received last transfusion. The family is overjoyed. So are we! Within last year, they went on a nice vacation where our little boy shot a little video climbing a rock face. Normalcy, finally seems to be finding its way back into the family.
When we saw the message yesterday, it came at a time when we have a fair share of very difficult situations at hand - as is the new normal for most of us. However it seemed to put things in perspective.
Perseverance, determination and a commitment to do what is the best - a Sankalp to give life a better chance!