Immunotherapy Round #5 and PET Scan

Another round done

Once again, Noah is back home after going through a round of immunotherapy at McMaster.

Overall, the "experience" of treatment for Noah was better than the previous four rounds. The drugs still had unpleasant mood-altering and behavioral affects on our boy but the affects were not nearly as intense as in prior rounds. He could still be bossy and obnoxious but he certainly wasn't unbearable and tyrannical. This was a nice change.

On Monday, the day of the NG tube, catheter and hand IV access, things went about as well as they always do. Because Noah did not receive Ativan, he was able to relax when all the nasty little procedures had finished. He even fell asleep - something that never happens when he gets Ativan - later in the day.

But Noah's relaxing and sleeping turned out to be a bit too deep.

After stepping out of the room for a minute, Kim returned to find Noah surrounded by hospital staff who were aggressively trying to wake Noah up. For some reason, Noah's breathing had gotten shallow and his oxygen saturation levels were dropping dangerously low.

This was due to the constant hydromorphone infusion on which Noah is kept while receiving the painful immunotherapy drugs. While the hydromorph helps to manage Noah's pain levels, it can also slow breathing and lower oxygen levels. A person can even stop breathing.

The hydromorph was stopped until Noah could be roused. When things settled, the dosage was dropped.

Unfortunately, the cause of the episode was not really clear to the team. Usually, a body builds a tolerance to pain killers and so Noah's reaction to a dose established in other rounds was a bit mysterious. For Kim and I, it was also a bit unnerving.

Things, however, seemed to go well again after that. The dosage was halved and the pain seemed managed. Until Tuesday night, when it happened again.

I was resting next to Noah at the time and, I admit, the whole episode was terrifying. Noah was given oxygen but couldn't be roused. When adults need to really manhandle and yell at a four-year-old for what seems like an eternity but was probably only five to ten minutes just to get a child to groan, the panicky part of the reptile/instinct brain sets in.

Once again the hydromorph was stopped and, once his levels were good, it was quickly tapered at a lower rate.

Because there was no explanation for the problems, the decision was made to change out the infusion pumps. The dosage Noah had been receiving was fairly low - nothing high enough to cause a sudden change - and so a possible malfunction seemed to be the most likely culprit. And, thankfully, there were no problems for the rest of the round.

This morning Noah was allowed to return home.

More scan results

In the time between this round the previous, on top of contracting norovirus, Noah also had a PET scan. As mentioned in the last post, this had been delayed because of a surge of new oncology admissions.

Though these scans are scheduled and as much a part of treatment as the therapies and appointments, they are also heavy and daunting. Of course we want to know how things are going - we are desperate to receive good news. But we are also terrified about receiving bad news.

Because, with cancer treatment - specifically with the treatment of high-risk neuroblastoma - so much relies on the success of the initial course of treatment. If the cancer does not go away, the cancer can only be "managed". And cancer cannot be managed indefinitely. If it isn't eliminated, or if it comes back (which it can, at any time), then...

But they need to know. And, very thankfully, we can report that the most recent PET scan showed excellent results. There is no cancer in Noah's body visible in the scan.

Of course, this isn't the final scan or set of scans Noah will have. The whole "jump" - PET scan, urine test, blood tests, MRI and bone marrow samples - will have to be done at the conclusion of his treatment but, right now, in this moment, we can be happy and grateful that Noah has come through the most difficult parts of his cancer journey and that there is no cancer left in his body.

Hallelujah.

And so, today, for this reason and also for the reason that this second last round of immunotherapy is the last round of treatment for which Noah needs to be inpatient, Noah left the oncology ward to a gauntlet of cheers and hoorays. With only one round of retinoids (which are given at home) left, Noah is done with overnights at the hospital. Again, we are so thankful.

And we are ever so tentatively beginning to look forward. To dream about the future, while always remembering that God's goodness surrounds us in the present, regardless of circumstances.

Time and love

So much of the time Noah has been our son has also been completely out of time.

Noah joined our family as an almost two year old who already had a past. Some of the past we could be privy to through stories and pictures but wholesale pieces of his history remain a complete mystery to us. All we had was the present and the promise of the future and some vague sense that the present would build a foundation of love that would become the past and which would become both his and our identity as a family that grew together and learned to love each other in a way that helped to fill in those mysterious holes that would take away the mystery of who Noah was to us and who we were to him.

Cancer has further warped that sense of time. I think I now have a better understanding of what Peter meant when he said that, to God, a day is like a thousand years, and a thousand years is like a day. Not only does the day of Noah's cancer diagnosis feel like it was just yesterday, if feels as if we have lived a thousand years with Noah as we walked thousands of miles with him on this fraught and intense and beautiful journey.

Who Noah is and who Kim and I are and who we all are are as a family has come to be through the thousands of years we have lived and loved together.

Because living and loving with cancer also means that you live knowing that every day and every moment needs to, somehow, be lived. So many days and so many moments over the last 15 months of eternity have been horrible. Just as many have been beautiful. Often, they were both.

And love comes from that place.

What keeps coming back to me when I think about love and what love means to my family and to my faith is not the warm, wonderful beautiful stuff that I want to associate with love. Language around love often centers on how it is built or how it grows. How is brings joy.

I've come to appreciate, however, how much love destroys.

Because allowing love into your life, and opening yourself up to love first requires a release. Guards, barriers, protections - whatever you want to call them - need to be displaced. And your heart needs to be ripped open, just so that it can be ripped in half.

So what is more mysterious and unknown now is how that, through this time, love has destroyed the defenses and inhibitions that would otherwise have protected our hearts and prevented the depth of love we and Noah now feel for each other. There is no longer a time when we were a family without Noah because he is our family.

And this makes sense. Christ conquered death but it was only through his death. Love destroys so that life can begin.

My prayer is that the time in which Noah and our family are beginning is long - more than an eternity - and that is continues to be filled with the grace we have been given so far.

God, thank you for my boy.