Making Sure You Know All the Options
When faced with a difficult or confusing decision you are told to take a step back so that objectivity can lead you to the best solution. However, as a parent who has just been told that your child has a life threatening illness it is impossible not to get sucked into an emotional vortex. When parents are faced with this question for the first time in the ER or in an oncology consult many feelings surface at once — fear, uncertainty, guilt, trust in doctors, doubts about the future and above all confusion and helplessness.
My son, Amaey, was diagnosed with ALL when he was three. He responded really well to his initial 18-month treatment protocol. Unfortunately, he relapsed a few months later and went though a more intensive three year chemotherapy protocol. Again he was responding positively and for the most part we were able to keep him free of infections and other complications. Unfortunately, towards the end of his treatment, he developed chemo induced AML. Unlike ALL, it was far more aggressive and his chemo riddled, little body far less able to cope. While we were able to find a donor, the subsequent bone marrow transplant was unsuccessful and he passed away after a courageous six and a half year fight.
It has taken me many years to collect the strength to write about our experience, specifically about questions parents face at critical points in treatment. I hope that sharing Amaey’s story may help other families who find themselves in our situation. To share that the confusion and pressure you feel in making these difficult decisions are shared by many families like yours.
When Amaey first started treatment, the oncologist, perhaps to make us feel better, said that as cancers go, this was perhaps the best one to “hope” for. He rattled off prognosis that through our fog of confusion and fear were much needed rays of hope. At this early stage, his treating team seemed very confident. There were well established protocols for treatment that seemed to have found optimal balance between treatment and side effects. The chemo drugs he would be receiving had been refined over decades to maximize efficacy and minimize risk. In terms of his treatment itself, his oncology team had a strong understanding of treatment modalities and markers to track.
Things started to get more complicated when he relapsed. The two main options presented to us were bone marrow transplant in case of matching sibling or a second round of more intensive chemo protocol. The drugs he would receive were largely similar to the ones he had been treated with before but in higher doses and for a longer period. Risks of side effects were also correspondingly higher. Immunotherapy was not an option at that time. Since we didn’t have a sibling match we went ahead with the second round of chemotherapy.
In retrospect, I feel we should have pushed harder for other options. The chemo that didn’t work the first time seemed to be the main answer that we were presented with again.Amaey’s body was still strong and this would have been the correct time to try a different approach wether it was something drastic like a transplant or more experimental like immunotherapy. While its more reassuring for the doctors as well as parents to stay the course, I believe that if you fall on the wrong side of a mature protocol, with significant data backing it up, its best to chart a more personalized course that is more specific to your child’s condition. Also, it is best to do this when your child has the strength to withstand the alternate treatment, the time to try something more experimental and a better chance for having a positive outcome since they are starting from a place where the cancer is under control. Once Amaey was diagnosed with AML, I feel that our options and time was very limited.
I wish I could go back to that first relapse and approach our decision differently.
Another aspect of treatment that I think is equally important, is diet. We did start focusing on Amaey’s food after his relapse, however, I wish we had started from the very beginning. Doctors generally agree that diet can play an important role in supporting other forms of treatment, however, hospitals are not setup to cater these alternatives or some times even the necessary information. Also, since Amaey was on medication, he would gravitate towards certain comfort foods and we wanted to ensure that he was keeping his weight up. In retrospect, I wish we had been more focussed on every bite of food that went inside him.
Equally important is the child’s mental well being. That is where organizations like Kids & Art play a critical role. Creating art, reading, writing or playing the piano are some of the happiest memories I have of Amaey. Fortunately many pediatric hospitals have also started to re-think their physical environment and patient & family interaction.
As a parent, your child’s treatment decisions are incredibly stressful. We are wired to protect them and they depend on us to keep them safe. While doctors are very helpful and can provide information, ultimately the decision falls on us. Please take help from family, friends and well wishers you trust. It always helps to talk through decisions and all good doctors and hospitals will share information with other care centers if you want a second opinion. I hope sharing our experience and Amaey’s journey will help other families in some small way.