Radiation Update

Surprise visitor

Things were already out of the ordinary on Wednesday morning. For the eleven previous visits to the Juravinski Cancer Centre, (or, "the castle" as our little guy likes to refer to it) Noah and Kim had gone as a twosome for his radiation treatments. On this day, the girls had come along for the ride to the hospital and I had trailed in the van so that, upon arrival at the parking garage, the whole family was together for Noah's final radiation appointment.

Noah was excitedly showing us "newbies" the way to the entrance when, in quite some disbelief, Noah noticed something - someone - who he hadn't seen at the hospital before...or anywhere else, ever before.

"Who's that Noah?!?"

"Elmo!"

Noah's mind was blown.

Overwhelmed, overexcited, overeager, overcome, Noah danced nervously and moved uncertainly as we made our way over to Elmo.

Elmo, Noah remarked later, was, "very big!" and so it took a while for Noah to warm up to the fact that he was really there and that he existed in Noah's time and space. But he was and after Noah brought the family through the screening area and lobby of the hospital, down to the radiation ward, Elmo was there waiting with gifts and time to play as part of the mini-celebration that was the last day of Noah's radiation treatments.

Noah and Elmo played the simple games available in the pod, directed Noah as he took laps around the unit in the fancy radiation unit car and presented Noah with a certificate, one that congratulated him on his successful completion of his radiation treatments and one that signifies what is really a big step in Noah's cancer treatment.

Though Noah may not understand it entirely, what is not lost on Kim and I is that his last day of radiation could possibly represent a huge milestone.

Potentially, as of this writing, Noah could be cancer free.

And so, even if Noah wasn't particularly interested in the act himself, Kim made sure to aggressively ring the bell which, in that moment, signified so many hopes, dreams and prayers.

It was certainly a moment to celebrate and how wonderful it was that we could celebrate together in that brief time and space in just one of the hospitals where, over the last 10 months, Noah has spent so much time and lived so much life that it is difficult to think about without feeling deep sadness.

Soon, however, it was time for things to wrap up. Noah needed to get his actual radiation treatment and a doctor (who was not a retiree in a costume) came to fetch Noah. Kim left with Noah and I left with the girls. The girls had to get to school and I had to get to work.

Noah came home from radiation later on that morning, feeling run down and unwell.

At dinner that evening, after struggling to eat or drink anything for the majority of the day, nausea overwhelmed Noah's sore tummy and he threw up. The cumulative effects of radiation have affected both his counts and his digestive system. Exhausted and medicated, we tucked Noah into bed to end another long day.

Blessing

A day like Wednesday really encapsulates all that is so complicated and mysterious and horrible and wonderful about walking a child through their cancer journey. Whereas the significance of life's moments are usually lost in the reality of living those moments, cancer has a way of forcing wakefulness on all it touches. This can be good and bad.

Noah's strength and boldness have not yet been regained since his time spent in Toronto this summer. His spirit is strong but he is tentative in ways he never was before. His strider causes him pain so he does not ride it. His Hickman catheter had tore skin at its entry point and blood continued to seep from this wound periodically, stubbornly refusing to fully heal. Besides his best friends, milk, mac and cheese and tacos, most of his old favourite dishes have lost any appeal for him.

And when things start to get better, when his strength and bravery start to return, Noah is put through another round of something that takes him down another notch. This is a cycle that repeats every month and everyday.

Our beautiful boy is filled with joy and our beautiful boy suffers all because the treatment he must undergo needs to be as relentless as the cancer that tries to take over his body.

Which takes us to the next steps in Noah's course of care.

Thursday, Noah was back in the clinic for platelets. He would need these because Friday he was back under sedation for the fourth time in five days to have a his Hickman catheter replaced with a port. This port, a small plastic thing with a tube going into his blood stream, will continue to give doctors an access point during the next phase of his treatment while also freeing Noah from the Hickman which had been hanging outside of his body since December 31st of last year. Once the skin heals over the port, Noah will be able to fully submerge his body in water and, we hope, there should be less "maintenance" to worry about than with the Hickman.

Friday, Noah also had a nasogastric tube reinserted into his stomach. This is being used for night feeds to help bulk him up again until his appetite returns in earnest.

He'll need both the bulk and the port for what, hopefully, will be the next stage here - immunotherapy. Again, we're not too sure what exactly this looks like but the point of it is to stop cancer from returning to Noah's body. It is meant to teach his body to identify the aggressive neuroblasts that are the reason for the aggressive treatment he has been receiving. If the body can be taught to identify and destroy these nasty cancerous cells, Noah will have the best chance possible of living a life that is cancer free.

Before we get there, however, Noah will have to go through the gamut of scans and tests once again. Tuesday he goes in to have his kidney function assessed. Thursday will be another big sedation day as he goes through what the clinic folks call "the jump". This is the package of scans that includes the PET, MRI, echocardiogram and ECG finished off by more bone marrow samples. He will have his eyes checked the following week and his hearing examined at a later date.

The results of the scans determine what happens next. If the scans are clear and if, as we hope and pray, Noah's body is clear of cancer, he will go into his immunotherapy treatments.

We live in this hope and in this prayer. He is in God's hands.

One thing I don't pray, however, is that somehow God will make the suffering "worth it". I don't know that suffering is worth anything or, to be honest, that it has any value at all.

I wish and pray that Noah didn't have to suffer. Full stop.

And I don't think, cruelly, that somehow God is using suffering - especially the suffering of our rascally little boy - to teach us something.

What I do pray is thanks for the blessing that is Noah's incredible little life. Though marred by pain and disruption and things I never imagined, the blessing of his life has value and he is more than the suffering that so often characterizes his days. I'm not saying that this knowledge takes away his pain, nor is it consolation for his pain. It is just that the blessing and worth and goodness of Noah's life eclipses the story of his suffering and allows us to see the beauty that pain and brokenness and cancer conceals.

This is the same beautiful way in which Christ has also taught us to see this broken world.

When we have eyes to see it, all we see is blessing.

Like when strangers from a costume store come to bring a little boy joy on a big day.

Blessing.

Noah, our little, great blessing.