The Course Completed

Round #6

Over seventeen months ago - back on December 30th, 2020, as Kim packed up Noah for his third emergency room visit in under a month, hell-bent on getting answers to questions about why our boy was suffering through waves of pain, sleepless nights, digestive struggles, hoping desperately to stop whatever sinister force was causing our young son to slowly fade away before our very eyes - Noah slid down from the second to first step of the front stairway in what was an attempt to convince us of something.

And as he landed, flat footed on that step he said, "Owie all gone!"

He was experiencing one of his increasingly rare pain free moments and he was trying to assure us that things were better.

We knew they weren't.

And at first, in the hours and days after learning about the discovery of the mass behind Noah's spine, I felt broken by the memory of that moment. It seemed cruel to think that our boy, so optimistic at such a terrible moment, would be afflicted with a new kind of prolonged pain and suffering that would overshadow all he had known in his short three years.

Now, however, I want to re-write that moment a bit. I want to change that part of the story. Instead of cruel irony, I hope to remember that moment as a foreshadowing - a promise - that one day, in fact, the owies would be all gone.

Noah left that day a sick boy, and since the time he was able to return, neuroblastoma has ruled his and our lives.

Things, however, might now be changing.

Noah's final round of immunotherapy, which was much simpler than the previous five, wrapped up over a month ago. The only drugs given were the retinoids and the worst side effect of these drugs is dry skin and chapped lips. A walk in the park compared to all the other stuff he's been through. And they were given at home, so no in-hospital care.

In the weeks leading up the the last round, Noah continued to build strength and endurance. He toilet trained for what we hope is the last time in his life.

Even more than this, he went to school.

You read that right - our big boy has been attending school.

It is not much. He gets on the bus two days a week and stays with his Junior Kindergarten class until lunch time. He gets a bit of help from a support worker and he is tuckered out by the time he gets home. But he loves every minute of it. He talks about his friends, his crafts and his playtime.

It is miraculously normal.

And it is all possible because he has officially completed his course of treatment. He has no more scheduled treatments and he is able to heal.

His owies are all gone.

Scan results

We had shared that Noah underwent a PET scan back in March and that the results of that scan showed no active cancer sites within his body.

A week ago Thursday, Noah did "the jump" once again and underwent the battery of tests required to do a complete assessment of Noah's body's response to the cancer treatments. A week after his seven hour sedation we were able to have a consult with Noah's primary oncologist and the results were, once again, good.

His blood work and urine tests showed good levels of everything that needs to be good. His kidneys are working well. His blood levels are all steady. His immunity is building.

His echocardiogram also showed that his heart is in good shape.

The bone marrow biopsy showed zero active cancer in his bone marrow.

The PET scan showed zero active cancer sites in his body.

The MRI continues to show a very small "nub" of something inconclusive on his spine. This nub could be scar tissue or the benign remnants of the larger mass that had to be left behind because removing it could have caused spinal damage. Whatever it is, it is not active cancer and it has shrunk since the last MRI was given in November. Because it exists, and because it is not under one centimeter in volume, Noah is officially considered in partial remission.

Do I wish that I could say that he was officially in full remission? Uh, yeah - of course. But it doesn't really matter because, for all intents and purposes, Noah doesn't have cancer.

And because Noah doesn't have cancer right now, I don't think I'm going to give a shit about semantics.

And we're going to take our oncologist's advice and we're going to take a break and we're going to have a great summer because there is life to be lived right now and because our boy needs to be raised.

Next steps

Of course, this isn't the end. As our oncologist also reminded us, Noah's cancer is "insidious". On top of requiring a very difficult, long and intense treatment protocol, it has a high rate of recurrence post treatment. The first two years post treatment are a particularly closely monitored time because this is when the recurrences are most likely to occur. And if the course of treatment for neuroblastoma does not prevent a recurrence, outcomes...are not good...because the cancer has had pretty much everything thrown at it already.

So we will be back in September to repeat the jump. And at regular intervals of every three, then six and, eventually twelve months, Noah will get the scans and tests need to determine whether or not the cancer has stayed away.

Noah will also continue to visit the hospital for other cancer treatment related damage. Noah has suffered some permanent hearing loss as a result of some of the different chemotherapy medications he received. The hearing aides have been made and molded but they don't fit quite right. When the new molds arrive, he'll be able to hear higher ranges of sound and - hopefully - he'll also learn to make some of the sounds he is not currently hearing.

Noah's back is also a little bit crooked these days. This probably has something to do with his treatments - we first noticed the lilt when he contracted C. Diff for the first time - and it could be from having a port, scar tissue on his spine, radiation, belly distention or even some completely unrelated factor. It'll be monitored and dealt with in good time.

And beyond all of this, Noah is going to be enrolled in a drug trial. There is a medication that is currently in a second phase of a trial for kids who have finished their course of treatment for neuroblastoma that is meant to lower the instances of cancer recurrence. The medication shows some promising results and, after a long discernment process, Kim and I have chosen to enroll Noah.

The trial is being run out of Montreal and so we will have to be there for a few days later on this month. Noah will take the medication two times a day for two years and there will be a bit of extra monitoring while he is part of the trial. There are a couple of known side effects but we were assured that they were nothing like the effects of his actual treatments. As well, we can pull out of the trial at any time if things don't seem to be going well for our boy.

So we are not exiting the world of childhood cancer. I'm not sure that is something that we'll ever be able to fully do. But we are certainly moving on to a different stage. And we hope that this will be a direction we and Noah continue to move into.

The Next Blue Sky

It is with such gratitude to family, friends, health care workers, doctors, medicine, technology that we and Noah can stand here today and look forward to the next few months of a life that seemed impossible a year and a half ago.

A year ago, as Kim and I were heading with Noah into Toronto for his stem cell transplants, thoughts of spending warm days outside at a lake where Noah could swim and camp felt like distant fantasies.

And so we are thankful that we live in the place and time that we live and that what has been done for Noah - in spite of how horrible it all could be - was able to be done.

We are also grateful that we have a God who has put these people in our paths. Just as Noah has been an incredible gift to us, so has everyone that has worked to help give Noah life. And not just a living, breathing reality but a life that is full and meaningful and full of love in spite of everything.

We have hoped and prayed for this outcome. Noah's cancer story is not over but we are at a wonderful juncture and we are happy and we celebrate that we are here. However, we are also grateful that we have been held and cared for and loved before we came to this time and place.

What is next for Noah's life is unknown. We have spent the last year and a half living in the present - trying to reconcile the holy mysteries of pain and suffering and joy and intimacy and what we are after everything we've gone through is not what we were before.

And what Noah and our family is going to be is not what we were going to be. There is no, "picking up where we left off" because we don't even remember where that was.

Except for in that one place in which we have continued to dwell - firmly held in God's.

My prayer continues to be that we will continue to dwell there and that God will bless us - as he unwaveringly has - for as many days and years as are left us.