Radiation

Making a Splash

At first, Noah was emphatic and decisive in his answer. Shaking his head back and forth, with his long drawn out, "noooo...", there seemed to be no convincing him.

But, at the side of the pool, on last Saturday's hot and sunny afternoon, Kim, our volunteer and the nurse slowly and patiently began to wear Noah down.

"Why don't you push the girls in?"

"Let's just splash our feet in the water."

"Can you throw the ball to me in the pool?"

He got a bit wetter and a bit more reckless. As the time ticked away and ticked on, the fun became too difficult for Noah to resist and he finally consented to letting the nurse tape and waterproof his dressing. Noah headed over to the splash pad.

Again, he was tentative at first. He got his hands wet in the puddles; he took control of the button activating the spraying water. He started to put his hands under the nozzles and to catch the water that came down out of the air.

And as the play continued, patience paid off. Noah finally ran through the spraying water and immersed himself more fully into a kind of play that, last summer, seemed so ordinary and which, this fall became miraculous.

Our little boy got to be a little boy.

A Family Weekend

This moment was probably the highlight among highlights for Kim and I as we were fortunate enough to be able to spend two nights and two days together with six other families whose lives have also been affected by childhood cancer at Camp Trillium, just west of Waterford, Ontario. The place is incredible, not so much in it's accommodations and amenities (thought there is a pretty wicked high ropes course and lots of other fun camp awesomeness for kids and adults to enjoy), but in its vision and manifestation. It is a group of extraordinary human beings who care deeply and earnestly for kids and families of kids who have cancer and who do everything in their power to make life as fun and ordinary as possible for those families. We were held and supported by amazing staff and volunteers.

With nurses on hand, we could let Noah be (a bit) reckless with (a bit) less worry. This was a huge gift.

And the timing of the weekend away also became a bit of a high point in this stage of the Noah's cancer journey as it also marked the end of his stem cell transplant recovery period and the beginning of his radiation therapy.

The Last Month

As with every round of chemotherapy, it is not the treatment so much as the recovery that really makes the whole thing a drag.

Noah's experience at the splash pad is indicative of the specific character of the recovery period Noah has just passed. Though he managed to get through the last round of treatment at SickKids with less of the severe side effects and struggles of the first round, his recovery was longer and marked by a tentativeness that we hadn't seen in him before.

To start, it took longer for Noah to get over his nausea. It was only a couple of weeks ago that Noah was finally holding down enough food and eating enough on his own for us to feel comfortable with getting rid of the nasogastric tube. This, in itself, is a bit of a back and forth exercise in tentativeness as feeding him through the NG makes fills him but also makes him less hungry for real food. It can also sometimes make him feel nauseous at a time when he needs to get calories and protein to recover strength.

Noah's strength also did not return and has not quite yet returned even though he has been home for over a month. Usually, his will compensates for his weakness and he gets frustrated with his body as it refuses to cooperate. Eventually, his body will bend to the will of his desires and things begin to work with his body the way he wants them to.

This time around, Noah was more hesitant. He chose to be pushed in a stroller rather than ride his strider because he was feeling "ouchy". He chose to come inside and rest because, as he says, "Noah tired". He avoided overextending himself.

And so we had to work a bit harder to coerce him into being active, into trying the foods he loves and into being the young boy he still is.

Seeing Noah finally decide to run through the splash pad was a perfect culmination of those efforts.

Radiation Treatments

Now, because Noah is feeling well, he goes back on to more treatments. The radiation he receives is pretty straight forward and in no way as invasive or wholly destructive as the previous chemotherapy treatments, though we do hope it invades and destroys what remains of the cancer within his body.

Starting today, and for the next eleven business days, Noah heads over to the hospital for an 8:00 radiation appointment. He gets to ride the mini-Mercedes over from the pod to the radiation room where he is sedated and fitted into the mesh cast that was created during his consultation a while back. They give him two quick zaps at two different sites and then he gets to wake up, play, eat and drink, and head home. The hope is that this will kill any remaining cancer cells that could be lurking in the two main sites that existed along his spine.

So far, the sedations have not left him feeling too off and the actual radiation - after one day, at least - has not had much of an effect on his overall "Noah-ness". As the treatment progresses, we can expect him to feel more and more fatigued as his body works to repair the cells damaged by the radiation.

Of course, there are other longer term side effects that we could worry about but we'll worry about those when we are living in the longer term.

And when this wraps up on the 20th of October, Noah will go back for a full work up of scans to find out how effective our trips to Toronto and this radiation have been.

Re-emerging

These scans, of course, are the next major touch point along the journey through Noah's cancer treatments.

As we travel this journey, we focus a lot of energy on getting through difficulties, of facing tough treatments and on doing whatever it is we can to help Noah reach the other side of these harder times.

There is something objective and focused about this "getting through". It is temporal and tangible. The prayers are specific because the problems are immediate. We want Noah to heal from pain or from side effects or to get his appetite back. These times are difficult and, as parents, Kim and I often feel both woefully helpless and desperately needed. We just have to get Noah through to the other side.

And then we get to the the other side. Slowly, as if wresting out of some sort of cocoon, the energetic, lively, sweet, wonder-filled little Noah that we almost seem to forget about comes back to us. And, to use another metaphor, he floats up to the surface and dripping splashing and giggling, he comes back into his former self renewed. And a newer self, one that continues to grow and learn, reveals pieces of a beautiful boy that were hidden away for a time.

At these times, we think about what it means to get through cancer. Two weeks ago, Noah turned four. Today, the rascally, delightful little boy who spent the last month getting over chemo began radiation and we want desperately for this to be the beginning of the end of the horrible cancer that lives in his body.

So my prayer, as always, is, "Dear God, heal my boy", because, next year, when he is five, I want to see Noah run into that splash pad and jump into that pool - only this time without the tape up job and without the cancer.