Still No Easy Answers
When we have a sick child, we’ll do just about anything to make them better. The good news is that most of the time we’re able to do this (these days). Chicken soup, ibuprofen and rest for the flu, bandaids and hugs for a skinned knee, antibiotics for an infection…
The crisis passes, the healthy smiles return, and we’ve seen our child safely through another illness.
But sometimes we run into an impossible problem, and we can’t make it better. As much as we try, as much as we pray and beg and hope that there’s something out there or someone that can help our child, there isn’t. No easy answers. No miracle cures. No well-traveled path filled with clinical studies and FDA-approved treatments that we know will work – the way ibuprofen works to reduce that fever.
When your child is diagnosed with a rare, serious disease, the monumental task of finding the right treatment becomes your number one priority. In some cases it’s straightforward-because there are known treatments that work most of the time. The path has already been forged.
But cancer is its own story. Rare, we’ve-never-seen-this-particlar-iteration-of-cancer-in-any-other-child, is a story within that story. When there are no precedents set for treating a disease, when the standard treatments don’t apply, when you are faced with monumental decisions like surgery to remove an organ, or a limb…Well, you’ll do just about ANYTHING to save your child or to save that piece of them that may be lost. Desperation is part of this story – fear, doubt, helplessness, all part of it.
And swirling around infusing everything with dark despair, is the perpetual feeling of failure. It’s a constant hum of: I can’t make it better. I’m not doing enough. My child will die because I can’t fix it. This is a powerful hum. It leads us down very desperate roads.
But as parents we have a huge responsibility to make sure we don’t do more harm than good. The physicians that treat our children share this responsibility. Together we form a team with the singular goal of helping this child get better or, if that’s not possible (and sometimes it isn’t), living their life to the fullest for as long as they have left. This is the decision that Jim and I have made- to work closely with Ana’s oncologists, surgeons and hepatologist. Her doctors are all extremely open minded – within the realm of what they know – to incorporating our deepest wishes for Ana into the most effective treatment plan possible.
We don’t talk about a cure anymore – not because we don’t want one – not because we don’t lie awake at night and dream about a magic pill, potion or plant that will shrink her tumors and make them vanish in thin air, but because that road leads to desperation, to despair, and to the very real possibility of doing more harm than good.
Jim and I have made a choice – for now – to let Ana’s physician lead, and to walk the path of Western medicine carefully but with confidence. We aren’t blind followers. We are always informed. We ask questions, send the doctors research, and weigh the pros and cons of every possible treatment option. Whenever possible, we try to get Ana involved with this process. But, at some point we have to let go. We have to have faith in her doctors because we’re not doctors ourselves. They run this show and there’s no way I am able to understand the complexity of how cancer happens, and how drugs stop it from happening, and why my child’s body seems to be turning against itself.
We appreciate that everyone is thinking about Ana, praying for her, and hoping for that miracle cure right along with us. But please keep in mind that when someone presents a nonstandard treatment (herbs, oils, juice fasts, etc.), it throws us back into a tailspin of doubt. It lets that dark despair in.
Each and every time this happens, we are faced with a glimmer of hope. It is particularly painful to hear miraculous stories of people who have been cured of their cancer – like dangling food just out of reach of someone who has been starving for a long, long time. But for every story of recovery and remission, there is a counter story of someone whose cancer progressed beyond the point of treatment because the miracle cure didn’t work for them. Then the reality sets in. There’s no proof it will help, it may do more harm than good, and her medical team doesn’t endorse it.
The issue is so complex. It’s impossible to measure doses or know exactly what ingredients are in any given alternative remedy. Take snake oil for example.
Originally brought to the U.S. by Chinese immigrants in the 1800’s, snake oil was high in Omega 3’s and rubbing it on aching joints actually helped soothe inflammation, among other things. So, it worked! But original snake oil was made from Chinese water snakes which weren’t readily accessible in the U.S., and less effective versions began appearing (e.g., rattlesnake oil). Not only were these oils less effective, but the claims they made were absurd (e.g., cure’s deafness!)
My point is this – it’s already difficult for us to figure out what to try or not to try among the known treatments for cancer – the ones with actual studies and documented success stories. But when someone hints at the promise of a magic pill, the one that will cure her, the one that we ABSOLUTELY MUST TRY, we are faced with the snake oil dilemma all over again.
Each and every time this happens, the implication is that I’m not doing everything I can to save my child.
Each and every time this happens, I am reminded that if I fail at this, I fail spectacularly, and with devastating consequence.
There’s a reason that drugs are regulated in this country – it’s because everything before the FDA was created was essentially an experiment (not that the FDA is perfect, but at least it’s SOMETHING). I’m not ready to experiment on Ana. I’m not saying I’ll never be ready to try something alternative, but right now the best way to offer support is to continue to pray, think healing thoughts and ask us what we need. I believe that’s true for most families dealing with a very sick child. I do appreciate all offers of support and understand that they come from a place of wanting to help Ana, wanting to save her, and I am very thankful for that.