Are We Doing Enough?

How much is enough? Cindy and I had some nice family time this past weekend – building the sukkah in our yard with the girls on Saturday for instance -- but then felt like we didn’t pause long enough to truly enjoy it. We had previously arranged a sitter for Sunday and proceeded to spend most of the day, one of the most beautiful in the fall, running errands to “get stuff done.” It seemed important at the time I booked the sitter, but as we were out and about ticking items off our never ending to do list, I couldn’t help but thinking we made, yet again, a poor choice. We are very dedicated to having a “normal” family life – creating memories, raising all three of our kids in a supportive environment, etc., but can’t seem to find the right balance (reading this over before I post it, it occurs to me that perhaps we have too many objectives).

Like any loving parents, Cindy and I are deeply committed to Samantha’s long term well being, but we struggle with questions of how much of our time, our money, ourselves should we, can we give to this. We’ve both worked hard in our respective careers to get to where we are and neither of us would feel right about walking away from our responsibilities, large or small.

From a medical standpoint, it would be horrible to lose a child, but worse still to lose one and have regrets for the rest of your life about the decisions you made or didn’t make in the process. One friend advises that Cindy and I should consider substantially reducing our time at work to focus on the family and/or on advancing our knowledge of Samantha’s medical condition. A second submits that modern medicine kills as much as it heals and shares anecdotes of people who survived brain tumors by shunning toxic treatments in favor of alternative medicines. A third suggests that radiating sooner is the best choice to giver her the highest absolute chance of survival, despite the possible adverse consequences. Everyone means well and uniformly offers platitudes that we’re “great” parents just for holding it together (outwardly at least) over the past two and half years – but I’m not sure what that means, really.

I have had three encounters lately which brought this point to the forefront in a very emotional way. The week before Sammi’s recent MRI, I was talking to a friend of a friend, Julia, whose 24 year old daughter has been battling with a grade 3 astrocytoma for 6 years. Her daughter’s oncologist recently told her that there is nothing more they can do to help her child, and a previously outgoing, attractive young lady is now confined to a wheelchair, essentially dying slowly in front of her mothers wistful eyes. This mother told me that she wanted my advice to make sure she left no stone unturned in trying to help her child – admirable for sure – and that she would never be able to forgive herself for not doing more, sooner, more urgently. She always assumed that one of the treatments the doctors had would work, and had faith it would work out in the end. It seemed to me that for the first time she was truly confronting the fact that it might not, in fact, work out for her child, and was struggling with remorse and regret over how the past few years had progressed.

Secondly, I had the joy of attending a celebration last week where our dear friend Evie, who has overcome tremendous obstacles in her battle with lymphoma, met her bone marrow donor.* Evie spoke passionately about what his act of kindness meant to her and I have never seen so many people smiling and crying at the same time in my life. The donor was a 20 year old orthodox man who, by virtue of giving of himself, literally saved her life. It was an honor and a joy to witness this event, but as I watched the proceedings and reflected on my conversations with Julia, I was struck by a profound sadness. This donor had joined the bone marrow registry as part of a drive to save a teacher at his high school several years prior. That patient didn’t find a match and ultimately succumbed to her disease. The teacher’s sister stood up and gave a moving testimony about how comforting it was for her family to know that because that drive lead to Evie’s match, her sister didn’t die in vain. As I listened, I couldn’t help but reflect on the challenge of our current research endeavors. Of course I want to help push the field forward – I often say that Samantha is alive today due to the generosity of other donors 5, 10 and 20 years ago -- and I am hopeful that research we develop will help a lot of other kids over a long period of time, but what I really want to do is help my kid, now. I know we’re on the right track and keep pushing the ball forward but are we going fast enough, pushing hard enough, making all the “right” moves?

Finally, I had a call late last week with a doctor in Europe who has developed a unique method of treating solid tissue cancers using non-invasive ultrasound waves. As he described the technique and their early outcomes treating other types of tumors, my spirits soared, only to be brought back to reality with the news that his technology was not applicable to Samantha’s tumor type due to the sensitive nature of the location of her disease. On one hand, I know I need to be out there investigating new alternatives and learning about treatments outside the scope of what is currently advised for Sammi, but it’s hard to do so and maintain my emotional balance. Said another way, it’s easier to get through the day by taking comfort in the knowledge that she’s in the best hands modern medicine can provide at the Dana Farber and pretending to be an ostrich, with my head buried in the nice warm sand.

Ultimately, we have and will continue to make some difficult decisions over time as we continue to help Samantha with her battle, both about her course of treatment and about how we live our lives. No decision is perfect, but which ones are “the most right?” To the extent that we find ways to create some additional time in our week, should we invest that time in pushing forward our research agenda, or in spending quality time with our kids, making absolutely sure to the best of our ability that all three of them grow and develop in a circle of love.

Case in point: This Friday there’s a conference in Houston which will be attended by many of the doctors we’d like to get to know in our JPA research. Friday night is also the beginning of Simchat Torah, a minor holiday to be sure, but one where the incoming kindergarten class is awarded their own personal torahs at shul by the rabbi. Sounds silly, but looking back, it was a major rite of passage for Mikki as it symbolized the ways in which the gates of learning were open for her in elementary school. So what is better for our family – for one of us to drop everything and go to Houston Thursday afternoon, returning Friday at midnight, or for both of us to be home Thursday and Friday night, including having our whole family together for Samantha’s simcha?

So, what tradeoffs do we make? As I look in the mirror every morning, in my core, I doubt whether we’re truly doing absolutely **everything** we can for her. For sure, we’re doing **the best we can** under the circumstances, but are we doing enough? I wish I knew.

AJ

[* As an aside, if you’re reading this and are not yet part of the national bone marrow registry, I encourage you to go to www.giftoflife.org and request a registration packet. It costs only $18 and literally takes all of 10 minutes to swab your cheek with a q-tip and fill out the forms. Like Evie’s donor, you too could be someone else’s guardian angel.]