Round #2, Day +11 Update

Progress

It has been a busy chunk of time since the last posting. Thankfully, I can report that the "busyness" this time around has looked significantly different than the stress and pain management that filled our last round.

Here is a quick update on how things have been going.

Shortly after the transplant, Noah’s mucositis started to really settle in. Once again, he experienced the big build up of mucous which was followed by the painful excretions. The timing of this was a day or two earlier than we experienced last round and we were a bit concerned. Since it would be a set number of days before we could hope to see blood counts and healing return, the earlier arrival of the mucositis seemed to be a bad sign. The oncologist told us to prepare for a "bumpy road".

At first, things did seem headed in a bad direction. The mucositis got worse and so the background infusion of hydromorphone was increased. Noah spit up and slept a lot. He spiked a fever.

But somethings didn’t change, even as his symptoms and pain got worse. In spite of everything, at some point every day, Noah asked to play. This was a wonderfully welcome difference. With his pain managed, Noah never lost his desire to engage. Even when his energy was low and when his body felt "yucky" there were times spent painting, drawing, stacking, building and making.

He was able to be a kid.

And by the time Noah had reached "day plus six", the worst day of the first stem cell transplant round, Noah slowly but surely began to perk up. He got out of bed and took the small steps needed to get to the scale and then spent time taping his latest artistic endeavors to the wall.

By Saturday, Noah was asking to play on the floor and since then he has been spending more and more time out of bed doing the things that will strengthen him and prepare him for a fuller recovery.

Even better (and right on schedule) Noah’s neutrophils have returned. After a few days of creeping white blood cell count numbers, as of today, Noah is getting immunity back. He is not quite at the threshold that would constitute "engraftment", but he is on his way.

Waiting

Now, of course, we begin the waiting game. Once the blood counts start to come one we immediately start to dream of home. We miss our girls, me miss our space and we miss our life.

But cancer treatment and especially transplants aren’t like that. There are hurdles to jump and bridges to cross. We aren’t going home tomorrow, regardless of the fact that I would have liked to have left SickKids yesterday.

First off, Noah’s blood counts and, specifically, neutrophils need to get past the engraftment threshold. He won’t be allowed out of his room - never mind allowed out of the hospital - until that target number is reached.

Noah’s digestive system also needs to begin working independently of his intravenous total parenteral nutrition (TPN) feeds before he is ready to leave. This does not necessarily mean that he has to be eating again, though that would be nice. What it does mean is that he has to be able to tolerate nasogastric tube feeds that are large enough to meet his body’s caloric needs. We started off with 10 millilitre feeds yesterday and we are up to 20 millilitre feeds today. He keeps most of them down but the buildup needs to be gradual so that he does not end up feeling nauseous.

The last thing he needs to be weaned off of is the hydromorphone. This shouldn’t take as much time as it took last round as, thankfully, he was never being given quite as high a dosage of the painkiller. And, whereas he was given several drugs to help control his pain last round, all of which required a tapering time, the hydromorphone is the only painkiller he needs to be weaned off of.

Finally, we have to wait and hope to see that there are no nasty surprises which might hold us here longer. Noah is vulnerable to everything and is therefore susceptible to any number of bacterial and/or viral infections. If he contracts anything (I’m remembering the "chickenpox" that trapped us last time) we will have to wait for the administration of a course of antibiotics or antiviral medications before we again start thinking about life outside of the city.

So now is the time we wait and pray. We pray for Noah’s healing and strengthening and recovery. We also pray that this long and difficult treatment has done the work it has been designed to do, that it has destroyed the cancer in his body and that it has given him (and his family) the gift of life and happy moments ahead.

And I pray thanks. Thanks for the life and happy moments that have already been. Even here, on the Bone Marrow Transplant ward at SickKids.

"First the fall, and then the recovery from the fall, and both are the mercy of God."

- Lady Julian of Norwich