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Caregivers and the Ultimate ‘What If’

Disagreementby Jonathan Agin, Editor Childhood Cancer Advocacy and Awareness

 

Life presents many difficult challenges throughout the course of the years that unfold before us.  Perhaps that is the ultimate understatement.  Simply working, maintaining a household, keeping a marriage alive and raising kids present what becomes a daily and life-long challenge.  When you then insert the wrinkle of trying to parent a child with cancer, along with maintaining all of the above, you test a caregiver’s every fiber and being.  And so it went that in April 2008 my wife and I were brought to the brink of our existence when we heard those four devastating words: “your child has cancer.”  What made the situation worse were the words that followed in the next sentence informing us that our then twenty-seven month old daughter Alexis, diagnosed with DIPG an inoperable brain tumor, was terminal.  My wife and I were told that even with current treatment options, Alexis would survive nine to twelve months, maybe a little more.

 

My wife and I are both lawyers in Washington, DC.  Although this provided us some ability to navigate and advocate for our daughter, there was no manual provided to us on how to make complex treatment decisions.  Alexis outlived the initial prognosis by close to two years.  In fact, she fought for a long thirty-three months.  During that time my wife and I made many decisions regarding which treatments to try as we desperately clung to hope.  At times the decisions were easier than others as there were few available treatment options.  However, at other points in time we had to select one treatment course over another, or had to make the decision whether to continue to seek to treat at all.  It was at those times that the fabric of our relationship was tested as well as the metal of our parenting ability.  It is a test that families who have children diagnosed with cancer do not always see coming at the outset.

 

Alexis did remarkably well for a child diagnosed with DIPG.  She was neurologically intact at diagnosis, and thus following radiation she spent from June 2008 until January or February 2010 relatively symptom free.  Of course, we were forced to make decisions during this time period, but thankfully the navigation did not place undue strain upon our relationship and we always ensured that Alexis’ ability to live a “normal” life was of primary concern.  Fast-forward to July 2010 after Alexis had been enrolled in a clinical trial at Sloan Kettering for a little over two months.

 

It was clear that Alexis’ cancer was progressing.  The march towards this realization and point truly began in April 2010.  The treatment at Sloan Kettering was providing some benefit and thus we continued to make the trip each week from Washington, DC to New York City.  It was not easy.  It was costly to travel; we were taken away from our work and our young son.  We were always running from place to place with only moments to spare most of the time.  There was a significant toll being taken from all of us.  There were many discussions between my wife and I about whether we should continue the treatment.  Was it worth it?  Was it putting Alexis through too much?  Was there something else we should do?  Should we stop the treatment and move towards palliative care?  These questions plagued us and oftentimes provided the backdrop for late-night conversations and disagreements.  The divide was clear though.  I wanted to continue to push forward with the treatment and my wife was questioning the benefit of doing so and whether continued treatment was in Alexis’ best interest.  These were tense times.  Both of our points of view were truly valid.

 

We were fortunate enough though to have the counsel of one of Alexis’ clinical oncologists who was attuned to this struggle.  Throughout the entire thirty-three month long journey for Alexis; we sought the counsel of her treatment team on most decisions.  We grew close with many on this team, but one of her oncologists in particular became a very trusted confidant.  One day, I remember clearly being in the outpatient clinic where Alexis went for routine exams.  There we sat in one of the exam rooms with those familiar pangs of anxiety.  I can picture the room so vividly, the chair I sat in, where my wife sat and where this doctor sat.  There were always so many patients to be seen each and every day, and time was always so limited at the clinic with the treatment team.  But then there was this one-day.  Sitting in the exam room, we began to talk with Alexis’ doctor about this very question: How do you know when it is time to stop seeking treatment?  Again, there was no roadmap to answer this question.  There were no books or manuals handed out on the day of Alexis’ diagnosis and there were no manuals at that time either.  Rather, most of the time we were left to drift in the stormy waters of those questions.

 

As our conversation unfolded though, our doctor discussed this decision from a medical and spiritual perspective.  She also talked to us about the complexity of the marital relationship with respect to this ultimate decision.  The position that she helped guide us to was one that served to shore up our foundation once again despite the constant and continued attack upon our marriage from the cancer that was taking our daughter.  The answer was not simple, but the advice made sense.

 

When one parent wants to continue to seek treatment and the other does not, deference should be paid to the parent that wants to seek further treatment.  The reason, although simple, is not easy to arrive at between husbands, wives and partners.  At the end of the day of course the goal should always be to keep the best interest of the child in mind, but with that said, one of the worst outgrowths from this struggle would be a life of resentment from one parent towards another for insisting to stop treatment.  I am not suggesting that continued treatment is always in the best interest of the child.  That is a decision that parents and caregivers must make with the counsel of the child’s treatment team.  Nevertheless, if continued treatment may provide some benefit or prolong the child’s life without exposing the child to risk or unnecessary pain, it is important to alleviate the future question of ‘what if.’  What if continuing to seek treatment would have provided more time with our child?  What if continuing to seek treatment would have meant that during the course of that treatment a better and more effective therapy was created?  What if continuing to seek treatment would have ultimately had a significant benefit?  What if?

 

This takes me back to the conversation that we had in that small exam room.  We arrived at the same place through different roads on the path that was Alexis’ journey.  We continued to seek treatment for Alexis even though it was not going to cure her.  We sought this treatment because there were signs of tangible benefit.  We sought this treatment because Alexis’ team felt that it was an appropriate course of action.  We sought to continue treatment because we hoped that time would equate to a new, more promising treatment.  We continued to seek treatment because, even though Alexis was too young to make decisions for herself, we asked her if she wanted to continue to travel to New York City each week, and unequivocally she shook her head yes.  And we continued to seek treatment for Alexis because I felt strongly about the course.  And thus, for my wife and I, it was important that I not be the one left with more ‘what ifs’ than her.  There were and there will always be unanswered questions.  Nevertheless, on the issue of whether or not to continue to seek treatment for Alexis, we walked together and understood that the answer and course necessitated that one of us had to walk on the other’s road to solidify our foundation as a couple.  Alexis passed away on January 14, 2011.  I have no questions of ‘what if’ with respect to this decision.

 

Thank you Neely.  It was not easy, but we found common paths and brought together a single path in the end.  And for this, we are stronger together today despite the destination that those paths lead us to.

 


jonathanaginSMALLJonathan Eric Agin is a childhood cancer advocate, speaker  and an attorney (www.jonathanagin.com) in Washington, DC. He is married to Neely Agin and is the father of Alexis, Gabriel and Trevor Agin. Alexis was diagnosed in April 2008 with a tumor in her brainstem and battled for 33 months before passing away on January 14, 2011.  Mr. Agin is the Director of External Affairs for the Max Cure Foundation and the General Counsel for the Children’s Cancer Therapy Development Institute.  Mr. Agin, along with his wife, run a Washington, DC chapter of a pediatric brain cancer foundation. In his spare time, Jonathan participates in endurance events, such as triathlons and running races to raise increased awareness for childhood cancer.

 

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8 Responses to Caregivers and the Ultimate ‘What If’

  1. Truly beautifully written. This is such a deep question that seems to appear on every journey of a child dx with cancer. Every treatment option can wreak havoc on the marriage and the child. We had to make the decision to remove our child’s eye. Do we? Or do we seek further treatment? In the end it was both due to dx. I will share this article on our Momcology private page. Thank you for sharing.

    • Thank you very much. I truly appreciate your kind words. And I appreciate you sharing this on your other page. I hope that it helps those who have to make these decisions.

  2. This is a touching and very useful post for any parents who are going through a child’s potentially terminal cancer. Thank you for sharing your invaluable insights.

    • Thank you Deborah. I appreciate your thoughts and I hope that those who have to follow will understand the pitfalls that exist for parents of kids with cancer and these decisions. I talk with a lot of parents out there and it is never easy. Thank you.

      Jonathan

  3. Nyree says:

    This is such a powerful essay. It is wonderful to hear how your wife and you have grown stronger together through this. There are bumps and we parents tackle these unknown waters so differently, but stepping back and understanding the motivation to each of your desires is what holds you together. Thank you for sharing this.

    • Thank you for your humbling words. I wish I had no reason to write them, but in the end, that is not reality so my hope is that through Alexis’ journey she can help teach others.

      Jonathan

  4. Hi Jonathon,
    Firstly i must say thank you for writing this story. What you describe is where my husband and I are physically at now. Our 6 year old son was diagnosed on 30th October 2013 with DIPG (he was 4 at the time), also given 9-12 months. I’m happy to say that he is still fighting and still with us. We are in the midst of exactly what you talked about. My husband is advocating to keep trialling ahead with natural therapy and so forth, where I feel resigned to say enough. How much more? During an argument my husband said, You will forever hold this against me, that we took my path not yours. Silly I know, because I don’t want our son to die from this cancer, nor do I want to give up. I just don’t believe in the same natural organic medicine as he does. I have read all there is to read and there is no benefit. Where do we go from here? I also do not want to live with what If’s. I see what wise words your Dr spoke to you. I have continued to agree and follow his lead, but you are right. If we stop, he will always have, what if we kept going. My way there is none.
    There is no manual on how to deal with this, and no way in knowing how to keep your marriage strong, and work and survive, but what choice do we have.

    Thank you for this. Sometimes we do feel so alone, and only a handful of people can only ever truly understand what this is like.
    Thank you
    Amanda

  5. Pingback: Advocating for Your Child: How much is too much? - Cancer Knowledge Network

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