Day By Day

I have a Bible verse written out and on my fridge. I can read it whenever I walk past and it’s a verse God has brought into my life knowing I would need it and cling to it.

“But now, thus says the Lord, Who created you, O Jacob, and He Who formed you, O Israel: “Fear not, for I have redeemed you; I have called you by your name; You are Mine. When you pass through the waters, I will be with you; And through the rivers, they shall not overflow you. When you walk through the fire, you shall not be burned, nor shall the flame scorch you. For I am the Lord your God, the Holy One of Israel, your Saviour.””

Isaiah 43: 1-3a

Owen took a turn for the worse. He became symptomatic on Sunday, the result of his growing tumours and swelling. He presented with a bad headache and continual vomiting that we could not stop. We tried to get his pain under control, but he kept vomiting the medication out. We used ice packs and cloths on his head. We used a strong anti-nausea medication that he had when taking chemo. Not much worked on Sunday night which made for a long night with little sleep as he thrashed in his bed from the pain and vomited hourly or more throughout that night.

Owen woke up Monday morning with no reprieve from the pain in his head. We expected when his symptoms returned that they would come in episodes like in November, with breaks in between. But this was not calming down. I called his oncology team and Canuck Place Children’s Hospice for help.

Owen is now in palliative care and his primary care team is now the children’s hospice. They have been working with him and us to manage the pain in his head, any other symptoms he may have, and keep him comfortable. Starting new chemotherapy treatments is no longer an option. This has been a shockingly sudden turn, but not unexpected. With the way things have been going and the way his MRI’s were looking, we expected his symptoms to worsen and things to go downhill at some point. But we didn’t expect it to happen now. We thought we had more time to enjoy him and watch him enjoy at least some of the summer yet.

We are at home right now and we would like to stay at home as long as possible. I (Amanda) am currently his caregiver and administering all the medications. We know that if things become too overwhelming at any point caring for Owen at home, we just have to pick up the phone and they will move us into the Canuck Place House where we could step back from being the caregivers and just be his parents. Right now we want to be at home where we are comfortable and where Owen is comfortable. We have had a hospice nurse visit our house 3 days this week so far to have eyes on Owen, monitor him, and figure out a balance of medications to keep him most comfortable. We are taking things one day at a time and going with what Owen’s body is telling us. Right now we have been able to keep Owen quite comfortable.

This has been an incredibly hard week with the sudden changes in Owen and facing what could soon be reality for our family. It has been a week of many emotions, a roller coaster in figuring out Owen’s medications, and a lot for all of us to process. The days are so busy with caring for Owen, caring for a newborn and the other kids, giving medications and making decisions during this new stage of the journey, and just trying to juggle everything. In a recent conversation together, we both agreed that as much as we no longer want Owen to suffer, we also don’t want to lose our son. Our hearts are so broken right now.

We are beyond thankful for God’s provision during this time; The blessing of any food in the form of meals or baking or other has lifted a weight off our shoulders right now as we take life one day at a time. We also continue to cherish each and every prayer lifted up for Owen and for our family. What a beautiful supportive community the Lord has surrounded us with! His blessings continue to flow!

Day By Day (Hymn)

Day by day, and with each passing moment,

Strength I find to meet my trials here;

Trusting in my Father’s wise bestowment,

I’ve no cause for worry or for fear.

He, whose heart is kind beyond all measure,

Gives unto each day what He deems best,

Lovingly its part of pain and pleasure,

Mingling toil with peace and rest.

2 Every day the Lord Himself is near me,

With a special mercy for each hour;

All my cares He fain would bear and cheer me,

He whose name is Counsellor and Pow’r.

The protection of His child and treasure

Is a charge that on Himself He laid;

“As thy days, thy strength shall be in measure,”

This the pledge to me He made.

3 Help me then, in every tribulation,

So to trust Thy promises, O Lord,

That I lose not faith’s sweet consolation,

Offered me within Thy holy Word.

Help me, Lord, when toil and trouble meeting,

E’er to take, as from a father’s hand,

One by one, the days, the moments fleeting,

Till with Christ the Lord I stand.