I had a chance to talk to a lovely physician who was interested in telling our story as part of an initiative to tell the healthcare stories. We agreed to the interview fore-mostly because I think we have a story worth telling. More importantly, our success was built on those who came before us; through their participation in the therapies that are available, through their losses and successes. We are now, part of that larger landscape. We add our name in wanting to help in whatever capacity we can.
To be sure, we are an outlier in a continuum that has more success stories than ever before. Our story is important because it shines a light in an area where the challenges are still greater than the successes. More than half of the children diagnosed with Stage 4 Neuroblastoma will not survive 5 years. Out story is important because addressing the needs of the subgroup which we belong to, (stage 4 subgroup) the hope is that the benefits will translate to other sub-groups. At least that is my rationale.
There are two dominating emotions that we deal with on a daily basis. The first emotion is that of ineffable gratitude. Yes! Maya is with us. All the possibilities can still be play out. The future concerts, plays, school events, first kiss, first love etc can all still play out. We can still watch her sleep at night and have our hearts overflow with the love of our child.
We are grateful for all the people who helped us in our journey. And there are so many people to thank. Doctors after doctors, nurses after nurses, who looked after our Maya… Those who prayed for us, chanted for us… there is an unending number of friends, teachers, colleagues that all played a part in keeping our Maya alive.
The subsequent emotion is that of anger. How could you do this to our child? Again we are part of the larger landscape that will live with the effects of the therapies. We started with “Stage IV High Risk Neuroblastoma”. We are now, High Risk Therapy Related Mortality group.
- Maya has lasting damages.
- Maya is likely to adjust poorly in society.
- Maya will not do well economically.
- Maya will not live as long.
- Maya will likely have other complications.
While I applaud every little successes that comes our way, questions arise. When will we save our children from dying? The image of children, those friends of ours, are forever etched in my mind. Those friends who are no longer.
You (Oncology) have to do better. Our current methodologies are not good enough. Not by any stretch of the imagination.
- To whom do I forward my questions to?
- To whom shall I vent my frustrations to?
- The oncologists? They’re part of the machine too and they are in the trenches with us.
- The bureaucrats?
- The Government?
It is not clear. And when such criticisms are voiced, often, the type of response that we get are:
- It’s much better than 10 – 15 years ago. Yes. Maya would likely have died 10 – 15 years ago. So, yes. But have we really come that much further? I wonder.
- What do you want us to do then? Well… do better. Why would you ask a non physician such a question? Do you tell your auto-mechanic how to fix the intermittent knock coming from the car?
We accept and live with what we have, even if each little cough that Maya has, is a dagger to our hearts. Even so, that is something to be thankful for. Because the possibilities are still great.
And in the meantime, Indira and I can now turn inwards. We look at the wasteland that was created inside ourselves in our efforts to keep Maya alive. The damage is also in us. PTSD that has been noted in the paediatric cancer parents is real.
The thoughts and the emotions which we have lived with need to be dealt with as well; those terrible terrible days when the blackness overwhelmed us. The anguish that came with not being able to do anything to help our daughter must also be dealt with. The consequence of hanging onto those terrible emotions will continue to hurt us. And we will not give another inch to cancer.
We have lived through an extraordinary event in our lives. We are not alone. Because we know what that “place” is like, we want to help, although it is not yet clear how. We will find a way to contribute more than we are now.
We are the lucky ones. There is no denying it. We hit a jackpot. And we are thrilled! And even as we inspect the damages in us, we bask in the warm sunshine called Maya. We bask in the profound human conditions called Love, Devotion, Compassion and Hope.