Riding the Rollercoaster

This journey is like riding a roller coaster…the ups, the downs, and not sure what is coming around the corner. Two Sundays ago, Owen went downhill really fast and his primary care team became Canuck Place Children’s Hospice. They helped us find a balance of medications to keep Owen comfortable and to minimize his pain and vomiting. We thought our time with him would possibly be shorter than what we had wrapped our minds around.

However, in the midst of the uncertainty we have so much to praise our Great God for! Owen had a better week this past first week of July! We seem to have found a good medication balance and he hasn’t had much “break through pain” where I would have to give extra pain medication to keep him comfortable. He is awake most of the day, he’s been playing and doing a lot of normal activities at home when he is feeling up to it. How amazing and how gracious of our Lord to allow us this time! We continue to plead for a healing miracle, but during this we also thank God for the beautiful moments we have been enjoying, like watching Owen play and eat again, seeing his desire to swim in a pool, and watching him play outside in the beautiful summer weather.

Owen is still really struggling mentally and behaviourally. One of his tumours is growing in the front of his brain which affects behaviour. His steroid to reduce swelling and pressure in his brain also makes him ornery and easily irritated so his hard behaviour is very pronounced right now. It was something we struggled with more and more toward the end of this past school year; Not surprising when seeing the front brain tumour on his last MRI. It’s been difficult to parent him and our other children surrounding his behaviour and attitude. We know it’s the progression of his disease and it’s not him; But how to deal with it all and teach our other children what’s allowed and not allowed as they watch their brother be nasty to everyone has been a challenge.

This past week, Owen’s wish of having a playfort with a curly tube slide and a firepole was granted by Make-A-Wish Canada. The playfort arrived on Wednesday and we had a wonderful team from his school community come build it on Thursday. Owen has been able to enjoy his playfort, something we weren’t sure would happen and our hearts are so thankful for all these blessings!

This rollercoaster has us literally hanging on for the ride. The constant changes and not knowing what tomorrow will bring are tough on the emotions and even mental health at times. It’s so hard to describe what we are feeling a lot of the time as it’s currently such a mixture of emotions. We are so thankful for God’s blessings, yet we are already grieving as we see all these changes in Owen and know the outcome of his disease if that’s the way the Lord wills things to go. Only God truly knows and understands what we feel in our hearts and minds, and only He can grant the comfort, peace, and grace we need for each moment. We pray we can continue looking to Him as our constant on this journey.

He wanted to go swimming so badly. What a blessing he was feeling up to enjoying some pool time this past week! God is so good!