Sea Billows

Seven months ago

It was just after Thanksgiving that what we feared but what had not yet been known was confirmed. Noah’s cancer had come back.

The course of our lives altered - or returned - to being one that revolves around cancer.

Through those seven months, Noah had been receiving a chemotherapy treatment that was working really well. It took a few weeks after his first treatment for the pain to go away and, after the second cycle, he was back to being symptom free. The cycles started to extend and, for a while, it felt as if we could do this indefinitely…or forever. Even more, we prayed that he might, someday, miraculously be cancer free. Maybe, eventually, he just wouldn’t need treatment any more.

Over the last few weeks, however, Noah started to change. It was mostly behavioural stuff. We’ve learned that with Noah, the biggest indicator of how he is feeling is always how he behaves, and when he becomes irritable, impatient and irrational there is always something other than the thing or situation in front of him that is the true problem. We know this because we know and love Noah.

Today

As of this writing, Noah is back home and getting ready for sleep (while screaming with his sisters) after a five night stay at McMaster which began after his cancer pain roared back late last week. He’ll be in his own bed but in a different room - his parents’ room - so that we can keep an eye on him and be close to him. He is attached to a pain pump which gives him fentanyl and which, more importantly, allows him to be here and not at the hospital. He is also taking an oral methadone which, we hope, will build up in his body over the next week and allow us to get him off of the pain pump and de-accessed from his port. Because he is no longer experiencing pain, he is happy to play and move. Mostly, though, he is happy because he is home with the people who love him best.

Earlier today, we shared with Noah’s wonderful, beautiful and amazing sisters, two of the most caring, loving, patient and compassionate human beings who’s earnestness constantly puts their father to shame, the following devastating and heartbreaking news.

Noah is now home only until it is time for him to be in his real, forever home. We will do everything that is medically possible to keep him from ever again experiencing the kind of excruciating pain that neuroblastoma can inflict on his beautiful little body. His care is now, primarily, in the hands of the quality of life team from McMaster and, in conjunction with homecare, Noah should be able to have his pain managed mostly at home for as long as necessary.

We are praying for healing and we ask for prayers for Noah’s healing. We know, though, that this healing - Noah’s full restoration - may have to wait for the time when all of God’s creation is restored. He is God’s child and God loves him and I know there will be a day when Noah is able to keep up with his friends and family and when his ideas and creative energies are not limited by his beautiful but broken body.

Seven days ago

Last Thursday night, Kim and I popped the cork on a bottle of champagne and had a few drinks on our front porch. I had bought the bottle back in February, when Noah last had scans, to celebrate the good results we received at that time. Life had gotten in the way and the bottle had stayed in our fridge too long and it now seemed like a good time to drink it.

Because, the night before, Noah had complained of arm pain. We lied to ourselves and said it had probably come from the aggressive, tricked out slip ‘n slide runs Noah had done earlier in the day and preceding days. Our first thoughts, of course, were something else and we both felt the urgency of celebration and the fleetingness of time.

Because, in truth, we did have a million things to celebrate. Since Noah’s cancer returned in October, we have lived praying that he would be healed and hoping to have more time. Good time. And we have been blessed - really blessed - to have been given closeness and joy in our family. We have been given the eyes to see the beauty that is our crazy little guy, the awareness to sense the wonder in every moment and place and the heart to embrace the pain that comes from loving recklessly.

Since October, Noah has learned to ice skate. We have built two awesome forts: one of snow and one of sticks. We have taken our Wish Trip to Florida and Noah got to meet Mickey Mouse and go on all the crazy rides he was tall enough to be allowed on. There has been bathtub snorkeling. Noah raced and drove his ride-on car so many times around the fairgrounds that its battery has already needed replacement. He has learned letters and writes his name. We’ve done fireworks, planted gardens, rode bikes, played sports, flew kites, raked leaves, danced, screamed, jumped, and laughed, laughed and laughed. We have lived. He has lived.

Midway through that bottle of champagne, we heard the pitter patter of little feet.

Strangely and uncharacteristically, Noah was up and out of bed in the late evening. We invited him to join us and he sat under a blanket on Kim’s lap until we decided to walk across the street, into the fairgrounds parking lot, to look for stars.

In the dark, under a clear night sky, Kim, Noah and I marveled at the heavens. At the infinite. Trying to see things through my son’s eyes, I asked him to show me a star, to tell me what he saw. He, however, didn’t see what he was looking for. Noah told me that what he wanted to see was a shooting star. Of course, what Noah wanted was something special. Something beautiful. Something rare. Something bright. Something intense. Something that is gone much too quickly and that you only get to enjoy if you are paying attention and looking deeply. And, something you can’t ever lose or forget because, though fleeting, its beauty is infinite.

Light

Back when this all began, one of our first prayers for Noah and for our family was for God to bless us and to make our lives worthy of His love.

To this end, we have been infinitely blessed by the boundless love and joy and laughter and screaming and chaos and kissing and cuddling that have burst the seams of our knit together family. We will forever want more of Noah:

Our precious treasure,

Our special little guy,

Our favourite little guy,

Our stinker,

Our wiener,

Our “No-No”.

A child of God.

Because, what we've had and what he is is infinitely more than we could have ever hoped or asked for.

Some infinities, though, are just shorter than others.

And so, we will look forward to forever. To our next shared infinities.

We love you Noah.