UNCERTAINTY AND FATIGUE: Life After A Cancer Diagnosis

At the Ronald Macdonald House in Jacksonville, Florida. The family joined Aven and I for the end of her proton radiation treatment.

 Prologue:

If you are new to reading this blog, about 2 years ago my daughter was diagnosed with medulloblastoma, which is a brain cancer found in the cerebellum. Our family had been in Canada for about 3 months following our return from a 1 year of humanitarian mission in Peru. 

I have shared through this blog and on her FB page a lot of her experience and how her critical illness affected and continues to affect her and the entire family. 

When we first faced the fear and uncertainty that was our child's cancer diagnosis, we experienced a hyper focus on the family. It isn't that there was a change in perspective because Aaron and I had already established a pattern of decision making that consistently put what was best for our children as the first priority. 

If you have ever had an eye exam you know that the optometrist puts different lenses in front of each eye and asks which one do you like best. This practice continues until you find the lenses that you like best. If you end up needing glasses this experimentation with different lenses is essential to finding the right prescription for your eyes. 

We think we have been gifted with our challenges and opportunities this year to more fully realize the "right prescription" for healing from the past and meeting our dreams and goals of the future.

March of this year was her 1 year anniversary of being done treatment. I shared my thoughts in my journal and then posted a similar pic on her FB page.

Finding Balance:

For a little over a year between 2019-2020, Aven and the family were in survival mode. As parents we lived in fear every time she had to have an intervention, treatment or testing. We tried to include people in her life and the children's lives who uplifted and strengthened because we were just surviving. It didn't feel like this world of loss and grief and sorrow and pain was a life. So many times we felt like loading up our trailer and running for the hills. Getting away from everyone and everything. But that is not possible when your child is in treatment. You just live with the fear and uncertainty and fatigue. 

We did our best to buffer Aven and cushion the falls because there were many let downs, many hard days. When the pandemic hit the world in early 2020, we had to modify, cancel, or postpone so many things that Aven and the children had been looking forward to. We had spent all of 2019 encouraging Aven to keep it up, to keep her eyes on the prize, to get through the year because better things were coming her way. That hopeful anticipation was crushed with the changes to the world that the pandemic brought. While many families use a Wish trip at the end of their child's treatment to breathe, slow down and relax, those like us whose children completed treatment at the beginning of a pandemic didn't have that opportunity. For Aven, it was like fighting with all your might and using all your energy to slay an overpowering dragon just to discover that  your knighting ceremony would not take place. 

Watching dad lose to a kid is the most fun thing ever!

Chickens:

Yes, you read that right. There are chickens in this story.

And what do you do when you are a parent with few resources and  have children with allergies to the usual pets? 

How do you give your warrior child something to look forward to and to help nurture? 

How do you come up with a surprise to try to make up for all that she lost, all that was postponed or canceled? 

Well if you are a glutton for punishment like I am you rent an incubator and attempt to hatch chicks. And when that doesn't work, you buy some sibling chicks from a farmer in your region. 

Our hens provided Aven and the children so much joy. The whole family took part in caring for them, watching them grow and seeing them progress from baby chicks to full grown and contributing members of the family. How these chickens were loved. How much comfort did they provide during such tumultuous times, is impossible to measure.

Then someone close to our house made a complaint. Instead of coming to us with any concerns and maybe touring our space, they went straight to the town. When the town did nothing to stop us from having hens, the person filed a complaint with bylaw. The officers who dropped by said the person complained about the possibility of noise or smell that can happen when chickens are raised. They inspected our backyard with coop and run. Triple run because we wanted to prevent the bullying of one of our hens. They were so impressed with how happy the chickens looked, how clean our yard and coop were and how not smelly it was, that they apologized repeatedly for having to enforce an outdated bylaw that allows only 2 hens on the property. When you care for your hens, they do not smell. This wasn't a commercial or farming project. These were members of the family who were treated with kindness and offered the same protection and love that one offers beloved pets. 

That visit from bylaw was a catalyst.

Saying goodbye to their pet hens.

What Now?

In April after learning we would need to re-home our hens, Aaron and I discussed various solutions. We prayed about a couple of the choices and then held a family council to present them to the kids. I told the children that if they wanted me to, I would advocate for them to be able to keep all their hens. I would need to get 10% of the town's electors to sign a petition that would allow the town to review the bylaw. Having a background in community activism, this was something I was confident that I could accomplish. (I even began the process by messaging with a few community members to pre-obtain their support.)

Alternately we could as a family try different communities to live in. We could start decluttering, downsizing and selling off some things in preparation for renting out our home. Having the house rented would give us the freedom we needed to explore other places. We could potentially start school in another city and after camping in our trailer for the summer rent a house ourselves somewhere new. 

Of course this second solution had other factors that made it not only more appealing for Aaron and I as parents, but also more realistic in terms of our financial stability and preparing for our future goals.

Knowing the hens were going to be in the home of our friends, where they could visit them anytime, the children voted unanimously to start preparations to rent our home and spend time living in our trailer.

I waited a couple of months to let my boss know that we would be moving out of the community if we found a good family to rent our home. We thought it would take us a few months to find someone or some people. But after listing it in our community page, it took one day. 

At Imrie Park shooting their Mother's Day video.

Wrench

Our plans to have an extended camping time this summer and part of the fall in Alberta had to be altered when I discovered that my grandmother had taken a turn for the worse. This is the matriarch I have written about. This is the one that took me in when I was homeless. I spent 4 months from May to August of my 24th year going between my grandmother's home and my great-grandmother's home in El Salvador. I walked with my grandmother to church and went with her to doctor's appointments. I watched her cook and I swept her home. I listened to music and swung on my late grandfather's hammock. She gave me counsel and watched over me.

Remembering how many times my mom changed her plans for me, and realizing I am the only one of the siblings that has this flexibility to go (and with my hero sister's help), it was clear that I had to go to see my grandmother and be with her and my mother in El Salvador. 

And I have beautiful little strings attached to me. They are bound to me and depend on me. As Aven's neuropsychologist put it. I am their comfort item.

So what motivates a wimpy, demanding, OCD-ish germophobe to travel internationally alone with 4 kids during a pandemic?

Knowing that if I don't do this now, if I don't at least try to see my grandmother and be there for her and my mother, I will regret it the rest of my days on this planet. 

Mom and our children.

What is Next?

Aaron and Gigi will camp at one of our friends' home while Gigi finishes some upgrading for post secondary and Aaron gets the trailer ready for a longer journey. He has to try to get our other truck to run so he can sell it and then he and Gigi will join the rest of the family in El Salvador. The family trip to El Salvador was one of the things we had to postpone last year. Although it wasn't part of the initial plan which was decided at the family council in April, going to the village I was born in has brought me a peaceful, grateful and hopeful feeling. 

The hope is that having these moments to look forward to in my mother's home and my grandmother's home and this time away will help me with the uncertainty and fatigue that are my daily companions.

The hope is that living in our trailer and camping in different communities in Alberta, possibly traveling to different provinces will give us the chance to see more clearly the path for us. We hope the time together will be healing for all of us. We hope to slow things down. Not worry about chores or bills or material things. We don't need things, we need time. We need time together. We need time to breathe and live. Not just survive.

On the way home.