Decisions, Decisions
The Internal Struggle to Make the Right Choice and the Weight of That Burden
Throughout the cancer journey, parents are required to make decisions. Some of them seem obvious but it is still a choice to be made. Others are more difficult as we weigh the options available to treat our children and the possible ramifications. Then there are the hard choices we have to make such as two completely different treatment pathways, whether to continue treatment or stop altogether and the hardest regarding the end of life. I originally started this blog entry as I sat at Pey’s bedside confronted with all the choices we have made for her and the ones that were coming. I couldn’t finish it then but I’ve come back to it because it is a universal topic among parents, “Am I making the right decision?”
We often don’t even think about the simple decisions we make because we didn’t have to actively think about them. One example from my experience basically did you want your child to have life-saving brain surgery until we know what the tumor is? “Duh.. yes. Where do I sign?” I didn’t need to think about it. The surgeon reviews the possible cons the worst being death and my response was along the lines of she’ll die without it so please try to save her life. Surgeries can be scary as you consider the risks but sometimes it is the easiest decision you can make. Think of all the things you decide to do to make your child comfortable during a procedure. Advocating to use adhesive remover for dressing changes or getting a child life specialist to explain a procedure so your child is less scared are all wonderful, simple decisions that we make for our children.
Then there are hard decisions. What if two treatment options are available but you can only do one? What if you are presented with treatment but the side effects are worrisome? You weigh the pros and cons of each but ultimately you have to decide. These types of questions, I see asked the most frequently in cancer groups on social media. Sometimes everyone agrees and sometimes there are dissenting opinions. However, cancer doesn’t respond the same way for everyone. I have worked with children that had the same cancer and treatment but all had different journeys and outcomes. Sometimes we are faced with decisions where there is no right answer. There is always the “what if.” I’m sure we would all love a guarantee that we are taking the right course of action but you will never know. I think that is when it is most important to go with your gut and not compare your child’s journey with someone else’s. You have to delve deep inside and analyze what your beliefs are to make a choice.
At the beginning of Pey’s cancer journey, we were given the option to either treat her extremely aggressive tumor or not do anything. The odds of her surviving were less than 1%. It was a no-brainer for us, we would reach for the stars to have our daughter. The hope was that she could be part of the few that make it. I’ve written before about deciding what was important to you as a parent at the beginning of the diagnosis but also thinking about how far you would go with treatment and at what point you would say you need to stop. It was always important to me that we would do everything we could for our daughter but if treatment wasn’t working and before she became my definition of miserable, we had to stop. I couldn’t face watching my daughter’s spirit disintegrate in front of my eyes. Everyone will have their stopping point but this was mine. I’ve seen it too many times in my work to watch my daughter go through it. So faced with the unthinkable, we had to make the toughest decisions of our lives.
Like Ana in Frozen II (for all those parents that had a child like mine watch it on repeat), I think of her song “The Next Right Thing.” With the information in front of us, we had to decide what was the right thing to do. We thought about what we wanted for the end of her life, having to decide what was the most important to us. After long discussions, we decided it was time to put Pey in hospice care. However, before hospice could start, her tumor took the option of a gentle passing at home away from us. She was in the hospital on a ventilator less than 4 hours later. Very quickly we were asked, “What do you want to do? What are your goals at the end of her life? How would you like to support her passing?” We barely got used to the idea that she would be passing and suddenly we had to decide all the fine details of what to do and not do in regard to her medical care. Simultaneously, you have to decide which mortuary will take her body once she’s passed. My pain and grief had to be shared over and over again with people I didn’t know just to get information. The cherry on top of this ordeal was having to decide on the language and beliefs we wanted to use to explain Pey’s eventual passing to Big Sister. It was a lot to handle in a short amount of time. Now, in the aftermath, I have to sit with the weight of those decisions I made. Did I do enough? Did I do the right thing?
Up until January 2022, I’d been comfortable with the decisions we had made. I think it is human nature to second guess our decisions but the consequences these decisions have on our children make the stakes higher. So it’s not unfathomable that we wouldn’t look anywhere and everywhere for a sign of hope in the options we have to choose from. Something that gives us validation, comfort, and solace in the choice we are leaning towards. But we all know there are no guarantees. I expected to have a healthy child as every parent does but that wasn’t the case. All we can do is hope for the best and remind ourselves that we are making the best decisions we can with the information we have. If you asked all the questions you had from your treatment team and others around you, then weighed it out, that is the best decision. Would someone else make a different decision? Maybe, but they aren’t you nor have they had the experiences you have had. You have to do what is right for you and your family. For the families that have a child in remission, you get to look back and rejoice that you had the best outcome and the choices you made got you to this point. Even still you may still question some, especially if now your child has side effects from all the chemotherapy drugs. For those of us who lost our child, we struggle to find meaning, question the choices we made, and bear the weight of them.
Any given day I struggle with a splash of guilt, a request for understanding, and self-forgiveness. I try to give myself a little bit of grace. All I can do is repeat to myself that I did everything I could out of love. We put our daughter through chemotherapy, surgeries, and radiation because we love* her and we were not willing to let her go without taking every chance available to us. Ultimately, we had to let her go because we love her and couldn’t watch her suffer for longer than she had to. We can’t go back and change the decisions we made nor do I think I would change anything. With hindsight being what it is, I wonder even if I had chosen differently, would it have changed anything? All I can do is feel the weight of it all. I remind myself to take solace that I made the best decisions I could with the best of intentions and with all the love in the world.
That is all I can recommend. You are doing your best with the information you have. Make the decisions that are right for your child and your family. Go in with hope and trust in yourself. Ask for input if you want it but have faith in yourself. Regardless of the outcome, you are doing (did) the right thing. Remember that always.
* I use the present tense because I will always love my girl even though she is not with us anymore. To use “loved” (to me) implies that it ended or belongs to the past.
