Finding our way through the darkness of pain.

Watching your child deteriorate in front of your eyes and knowing where that is leading is hard; It’s painful.

If you see Owen, he looks like any other normal healthy little boy swinging on the swings or playing in the pool. The majority of his body is healthy and doing well. He’s growing, his hair has come back nicely, and he is still able to do many things. His care team is very impressed with how well he has compensated for the things he now really struggles with.

But if you stand there and really watch him, really pay attention to how he moves or how he acts, you will see the differences. You will see limitations; He’s unsteady and uncoordinated, and often needs a guiding hand when he moves around so he doesn’t fall or walk into things. You will see that he’s tired and can’t remember anything, which really upsets him. You will see that he can’t write anymore because his fine motor skills don’t work good anymore; You will see him struggle to grab things, struggle to put things in their place, and struggle to find things as his eyesight is declining. You will see that he needs more help getting dressed. You will see how silly he acts and hear how he struggles to have a conversation.

Owen had a seizure one night a few weeks ago, expected by the hospice team but very scary for us. It left him temporarily blind and temporarily paralyzed on the left side. The paralysis resolved within a couple hours, but we had to wait until the next morning to see if he would regain his eyesight. Praise the Lord for the return of his sight the next morning!

Owen has plateaued for a few weeks now. He has declined a lot mentally and is really struggling in that regard, but we are able to manage his pain, seizures, and other symptoms so far with a lot of medication. Because of this plateau, we asked about the new chemotherapy treatment the oncologist offered back in June. We requested an MRI to help us make our decision on doing more treatment as we are in the dark regarding what is going on in Owen’s head; His cancer doesn’t show up on blood work or other tests.

Owen had an MRI done this past Thursday, July 31. Following that, we had an appointment with his oncology team regarding the results and the consideration of this new chemotherapy. The MRI results were not good. The whole right side of his brain is full of disease. This pediatric diffuse high grade glioma is agressive and fast growing. There was no excitement or encouragement from Owen’s care team to do more treatment. They have seen some possible benefit for a short period of time in children with this same disease, like reducing some symptoms and possibly slowing or slightly shrinking the tumours, but any effect is not promised and eventually the cancer still takes over. However, they will support us in whatever direction we decide to go and they have said numerous times that whatever we decide to do is an equally loving decision. If we decide to do more treatment, we need to do it now if we want to see any possible benefit from it as Owen’s cancer is growing and spreading rapidly.

We have been praying. We have been weighing pros and cons. We have been wrestling with the direction we need to go now. If we knew there was a cure to Owen’s brain cancer, pursuing more treatment would be a no-brainer. But we know from the experience of the doctors and from our own research that this cancer does not have a cure. And so we have to ask some big heavy questions as we weigh everything. How do we put our son through the trauma of needles, chemo (that comes with more risks again and will have negative effects on his quality of life) and long days at the children’s hospital without a known long-lasting benefit? Is it selfish of us to try prolonging his life only for him to go through more pain and suffering for a longer period of time? But how do we just watch our son decline and eventually die? There has been so much internal wrestling regarding what direction needs to be taken right now.

We have been seeking God’s guidance in regards to pursuing more conventional treatment or not. We feel that the Lord has been showing us our answer in various ways. I have seen the stories of other young children with brain cancer, and what they go through when receiving chemo through their ports. We have asked is this worth the trauma and distress to Owen? We have the results of the MRI and the research showing the aggression of this disease and the trajectory/outcome for anyone who has it. There are many different types of brain cancer; Owen’s specific type is humanly incurable. We have also included Owen in a conversation where we explained the new treatment to him, and we explained what would most likely happen if we choose no more chemo. Owen’s pure terror at the thought of needles and treatment in the hospital helped to solidify our decision.

We understand that not everyone will agree with this decision, but we feel led to continue as we have been by caring for Owen at home and keeping him comfortable, allowing him quality of life for as long as the Lord wills. We will not be pursuing more chemotherapy. Surgery to remove tumours was never an option for Owen’s specific case, and radiation is also off the table as I’ve explained in previous blogs posts. This decision has taken a lot out of us. We have taken nothing lightly.

Rick and I came to this decision together by God’s leading. It will take me (Amanda) some time and much prayer to come to complete peace with this decision. And maybe I’ll never actually feel complete peace about this decision. As his mother, it feels so unnatural to sit and watch your child slowly die. This is not the way God created things. God created everything perfect. But as a result of sin, we have to face pain, we have to endure pain, we have to find our way through the darkness of pain. We have had some beautiful conversations with Owen, he shows no fear (except for needles), and we thank God for granting him that peace. We know he loves the Lord; He asks questions and right now he asks a lot about heaven. (We ask that no one approach him about the possibility of what his future holds.) We have all been tested all while learning and growing on this journey in ways we never could have imagined. May God continue to work all things for His honour and glory.

Things have been tough for me personally as I ponder hard conversations from the past, deal with the crushing weight of making decisions when no decision is good, and wonder what our future holds. I just want to run away, take off and peace out from all this pain and heaviness. A dear friend came alongside me and reminded me of how David felt when he was facing trials. What David writes in Psalm 55: 4-8 resonates very strongly with me right now: “My heart is severely pained within me, and the terrors of death have fallen upon me. Fearfulness and trembling have come upon me, and horror has overwhelmed me. So I said, “Oh, that I had wings like a dove! I would fly away and be at rest. Indeed, I would wander far off, and remain in the wilderness. I would hasten my escape from the windy storm and tempest.””

We are clinging to the Lord, and we pray this journey will only continue to strengthen our faith in Him and our hope for eternal life. We continue to pray for a healing miracle daily, God is ultimately in control of all things. He hears every prayer. Even though the outcomes up to this point have not been according to our desires, we still see God’s care and provision for us by His grace. Please continue to lift Owen up to our Heavenly Father!

Great Is His Faithfulness (by the Collingsworth family)

If you have felt the dark of night

Questioning what is out of sight

He is the answer, He is the light

If you have felt the weight of sin

Bound by the shame that hemmed you in

He'll break the chains, He will forgive

Lift your head

Morning is coming, there's more to the story

Don't forget

In grief and in glory, still great is His faithfulness

If you've felt broken and betrayed

No one to trust, alone, afraid

He'll comfort you, He knows your name

If you've wrestled with the ache of loss

And why this has been your road to walk

He bore your pain, He wore your cross

Lift your head

Morning is coming, there's more to the story

Don't forget

In grief and in glory, still great is His faithfulness.