Our New Normal…

There’s really no good reason for me to share this particular picture, except for the fact that it warms my heart. Can you see the mix of sweetness and mischievousness in that precious little face? Our little monkey. Grade One. Our first year living in Haldimand County.

It was a desire to live in the community where we attend church that first brought us here. That, and the amazing reputation of the little country school our children now attend.

But it is the community itself that we have come to love.

If you don’t live in Caledonia, you might not understand. If you do, you’ll know exactly what I’m talking about. There is an old world charm to this place. Where it takes an hour to grab milk at the grocery store because you know at least half of the people shopping. Where there is an unwritten code about how traffic merges onto the main street (and its clear when someone from out of town doesn’t know the rules). And where neighbours still genuinely care, and go out of their way to help one another.

This is the place we are blessed to call home, and we could not be more proud or more thankful. In our eyes, it is the best place in the world to live.

And it is because we feel this way, that we want to share a part of our story with you that we have been struggling to process over the past couple of weeks. Because we want you to hear it directly from us, and not from another source.

A couple of weeks ago, when Ethan had his last MRI, we were thrilled to learn that the tumour appeared stable. It was a huge relief to hear that he was doing well.

His oncologist explained that the standard approach to treating a Stage 2 Glioma is to begin treatment when/if the tumour shows signs of growth. Otherwise, he shared, it is often appropriate to adopt a ‘watch and wait’ approach. The tumour is scanned every six weeks initially, and this interval is gradually increased if the tumour does not change.

My husband asked why they would not treat Ethan now. Why wait for the tumour to start growing. We just want to be rid of it altogether. To be able to say that our son is cancer-free.

“It’s a good question,” the doctor replied. “The reality is, that chemo and radiation are not able to shrink the tumour to nothing.” He went on to explain that the residual tumour in Ethan’s brain is inoperable, and that treatment for this type of cancer is only able to control tumour growth, not eliminate the tumour.

“Are you telling us that apart from a miracle, he will never be NED (no evidence of disease)?” I asked.

“The 2016 answer to your question is yes,” he replied. He then went on to share his personal hope that medical advances within Ethan’s lifetime will change that answer. That there will be a cure. That he will one day be free of this disease.

The news hit us hard. It was unexpected. Not something we had even imagined as a possibility. We knew that the road would be difficult, but believed that we would fight this monster, defeat it, and move on with our lives.

The thought of living with this forever is difficult to accept. That, at any point, a simple headache or upset stomach could mean that the tumour is growing or becoming more aggressive. That treatment may become necessary at any time. That our boy may even need to go through another invasive brain surgery and all the risks associated with that.

And then there’s the guilt.

Guilt that we are not overcome with joy at the good news we’ve received. That our minds continue to ask the what ifs, often in the dark hours of night. Guilt that we can’t seem to live fully in the moment, although we know how precious each moment is.

We tell ourselves we know better. That God is faithful and good. That we don’t need to worry. But the uncertainty weighs heavy nonetheless.

There is tremendous vulnerability in sharing my heart so openly, but I want to be real. I know that if I’m struggling in this way, there is a good chance that others may be as well. The last thing I would want to do, would be to portray a false reality where our family has it all together.

We don’t. And that’s okay.

That being said, we are being intentional about taking opportunities to make memories as a family and to celebrate this beautiful life as best we can.

We continue to be grateful for the love and support of our family, friends and community. We would not have managed to get through these past few months without you. Please continue to pray for Ethan, for miraculous healing that defies medical understanding.

Please extend grace to our family in the midst of our struggle. There is no map for the journey we are on, and we are clumsily learning to navigate this new normal.  Life, for us, will never be the same. There will be times we need to talk, and other times that we just can’t bring ourselves to be around anyone. Even we will struggle to know which is which.  At times, our kids may joke inappropriately, or not answer a question in an expected way, but they are just trying to figure this all out too. Please don’t judge too harshly.

Thank you again to everyone for your care, your practical support, and your love. There really are no words to adequately express our gratitude. We always knew we loved our little town, but are now reminded continually of why it is so great to live here. May you all have a most blessed Christmas!

Much love,

The McPhersons