Nathan’s Long Road

In 2021, Nathan was rushed into emergency surgery for a mass located in his liver, barely two months after the birth of our son. It was one of the most terrifying moments in my life. Since then, our family has been existing in a state of constant mental/emotional strain. Life on its own is full of challenges that threaten to overwhelm us, without the added stress of a major medical diagnosis.

Nathan was diagnosed with an extremely rare infection called Alveolar Echinococcosis. There are only 25 cases in all of Alberta (where we have our own unique variant), with a handful more across the country and similar stats in other northern countries in Europe. It is a hardy, aggressive parasite that has only one known cure - surgical removal followed by chemotherapy with a hardcore antiparasitic, which we have discovered my husband is unable to process in even low doses. The number of cases of people with drug intolerance to the treatment medication is so low worldwide that pharmaceutical companies have very little incentive to develop alternatives. The initial tumour was removed from his liver in October of 2021, and we had hoped that we were lucky enough to have gotten it all and the chemo would be rendered unnecessary, but imaging and bloodwork in early 2023 confirmed that there is a return of infectious activity at the resection site.

Tumors created by AE take time to form and are mostly asymptomatic, but they come with a 10-15 year prognosis if left untreated. Though research is being conducted in France, Switzerland and Canada, the only alternative treatment option for us at this time is to slow it down with an antifungal drug called Amphotericin-B that doctors typically only administer when they have to, due to its exceptionally harsh side effects. More surgery is still on the table, but there are continued risks in waiting for the tumour to grow large enough for that, as well as those associated with the surgical procedures themselves. And, because Nathan is the only case in the world currently in his unique situation, there are no stats or answers on what choices might be the best.

Throughout all of this, our children (now 6 and almost 2) have been growing and learning to cope alongside us. To say that it’s had no effect on us all would be a lie. Nathan has had to learn how to navigate intermittent panic attacks and manage his personal stress in a high stress work environment. I have vacillated between bouts of anxiety and depression that make parenting, running my own business and being the support my husband needs feel impossible at times. Lucy struggles with anxiety and emotional flooding that may not be evident to anyone outside of our home, but that can be crippling for her. Ridley seems to be doing well, but it’s hard not to worry. He’s present for all of our emotional storms and has no idea how to process what he’s seeing. We work with mental health and apply the things we’ve learned to day to day life, but it’s scary to be faced with your child’s pain on a level someone their age should never have to feel while trying to process your own.

At each turn in the road on this journey, we’ve had friends and family asking how they can help us. Up until now, we haven’t really had an answer. Offerings of food or babysitting services are always appreciated, but it isn’t what we need. The kids want more of us not less, so even asking close family to watch them is hard some days. Asking for someone to help out with things like cleaning my house just makes me feel worse, even if it’s what I desperately need. And the cost of living has made hiring someone to do that for us, as an example, hard to justify. I can thank unrealistic societal expectations and inflation for that. Ultimately though thinking of “how you can help” is asking more than I have left more often than not.

If I’m honest, TIME would be the answer. We need TIME to breathe and think and be together while we find our footing. TIME where we don’t have to worry about work or cleaning the house or bills or hot water heaters failing. TIME to reconnect to ourselves and each other, because the weight of our emotions lately has made doing so really hard. TIME to decide what’s right for us as a family so that when Nathan makes his decision, and sets forth on his long road to healing, he can do so knowing he won’t have to worry about us.

But time costs money. Unfortunately, there’s no room for compassion in capitalism. Taking stress leave results in unpaid time off, and we just can’t afford that. The cost of living in Cold Lake is too high and so, finding the time we need to process and accept that the future we dreamed of may never come to pass feels impossible. We plan to fight for that dream and for our family, but we can’t do it alone.

I’ve started this Go Fund Me at the urging of my therapist to provide you, the people who want to help us but don’t know how, with a way to contribute that doesn’t also ask us to think more than we need to. I also want you to know just how much we appreciate you and your generosity. Any funds raised will go towards helping us cover general costs of living and paying off some debts (thank you very much to COVID for decimating our savings and the 1000’s spent on trips to see specialists and receive the medical care Nathan needs), so that we can focus on creating amazing memories with our kids, maybe take some time off and start to find our feet again.

Take Care!

Nikki