Stem Cell Transplant - Round #2

Grabbing at Summer

Last Tuesday afternoon, on a beautifully hot and sunny Ontario summer day, we packed up the girls, Noah, kids' bikes, rollerblades and the old running stroller and headed down to the Hamilton beach trail, just on the other side of the Burlington Skyway, for one last full family hurrah. We zipped up and down the path, Noah pushed along in the old stroller and commenting on the sights and my driving abilities. We finished off with ice cream cones - which Noah devoured/smeared all over his face - and by spending some time at the beach. Noah waded in the nice cool water, tried to climb dangerously large rocks made towers and had a great time with his sisters.

Last Thursday morning, I packed up the van and woke the girls up early and we headed outside to say some farewells. Noah and Kim were headed to Toronto for a day at the clinic. The girls and I were headed up to the Big Apple, where I would be handing them off to their Oma and Opa so that they could spend the next while camping with them.

It was a tough goodbye. Noah had recovered fairly well from his last stem cell transplant and, though still weakened, he had regained his joy and delight and fun. He was full of life. And now the kids were separating again, knowing full well from previous experience what they were going to lose. They would miss their brother and it would take a while for him to come back home and for his beautiful little light to come back to them.

Last Friday, Kim and I took Noah back to the hospital for Sick Children in Toronto for his second round of intense chemotherapy to be followed up by another stem cell transplant.

Return From Round #1

Noah's return from Toronto at the end of his first stem cell transplant was both exciting and a bit overwhelming. Though well enough to leave the hospital, he was far from recovered.

The chicken pox, shingles or whatever they were, which had kept Noah in the hospital towards the end of our stay did not magically resolve. The rash that had begun on his cheek spread around his body and, though never as intense looking as the original splotch, they did cause concern and almost landed Noah back in the hospital. Time and antiviral medications seemed to slowly heal the spots, though not without some added intrigue.

Once the rash began to move and dissipate, it started to cause Noah a lot of itchiness, especially under the dressing that covers his Hickman catheter. This, of course, was a huge issue as that catheter is connected to his veins and cannot become infected. Noah would scratch off the dressings in his sleep or, worse, it would rub off when he spent too much time moving around outside so that the sweat would loosen it and it would peel.

We were incredibly grateful when a new dressing mixed with a powder mixed with an aerosol steroid mixed with a dose of Reactine gave him relief and protection. We have the nurses at McMaster to thank for this welcome solution.

Other difficulties included Noah's insane medication schedule over his first few weeks home. He was still being weaned off of the painkillers he had been taking to get relief from his mucositis and so those needed to be given in ever decreasing doses for a long while after his return. There were at least six others, most of which Kim dutifully administered throughout the day and night, and so we were ever vigilant about keeping an eye on the clock.

Noah also needed to re-learn how to eat. He started munching pretty soon after he returned and we were able to supplement him with feeds for the first week and, despite some vomiting, this helped him put back on a bit of the weight he had lost. However, when the NG tube came out one night, there were a few tense days. Noah did not want the tube back in but he needed to eat more and this created a few worried standoffs. With the clock ticking before the second round, putting on pounds became important.

I think the hardest part for Noah, though, was learning how to move again. Because he wanted so badly to be able to do the things he was once able to do, his lack of strength became really frustrating for him. He wanted to run, he wanted to bike and he wanted to be a kid - he just wasn't up to it yet. With the privilege of hindsight, it is easy to see now why he was such a grumpy boy a lot of the time those first couple weeks at home. There was nothing we could do to miraculously rebuild his muscles and because we couldn't help him, he got angry and asked to head back to the couch for a movie.

It was hard.

But by the end of last week, the old pre-stem cell transplant Noah was mostly back. He was moving and playing and joking and laughing, laughing, laughing with his sisters as they played night-night. He was once again dancing like a man possessed. He was riding and climbing and tumbling.

And by the end of last week new pieces of Noah were revealing themselves. After a month and a half of being sick, we started to see the parts of him that were growing and changing in him, as things are always growing and changing in any three-year-old. We are hearing his fully formed thoughts and seeing his maturing relationality.

We are also sensing his increasing awareness. His realization that his reality extends beyond the day to day happenings of his little family and that there are bigger stories and histories being woven together that are beyond his control but no longer beyond his understanding.

In his own way, Noah is beginning to understand that he is sick...that he has cancer.

He doesn't like it. This is also a part of what made last Thursday's goodbye extra hard.

Back in Toronto

And so here we are, once again, back in Toronto for another heavy round of chemotherapy and for another stem cell transplant.

Though the basic idea of this round is the same as it was for the first round, the chemo medications given are all different. During the first round Noah received two different drugs over the first six days. These were given at set times and over a few hours every day.

This round, Noah has been given three chemo medications over four days. One was given daily, the other two were infused around the clock. These infusions ended yesterday at around lunch time and these are the last scheduled chemotherapy drugs left in his course of treatment.

The hope and prayer is that these are the last chemotherapy drugs Noah will ever have to take in his life.

But we are far from done here in Toronto. "Day 0", the day Noah receives his stem cells, will be on Friday. Again, we will have to wait for the engraftment of the cells and then for his blood counts to come up again before we can even think of going back home.

The potential side effects from this round are both different and the same as the first and Noah is already beginning to feel the pain of these miraculous/horrible chemo drugs. The nasogastric tube came back because his appetite disappeared. The puking has resumed and, just this afternoon, the mucositis has begun to rear its ugly head again and so he is back on hydromorphone.

Unfortunately, we have a pretty good idea of where this is headed but, thankfully, the team at SickKids plans to jump on the pain more quickly with the advantage of the knowledge they gained in treating his pain during the first round.

It's hard to imagine that the life we're living today is connected to that one we were in just over a week ago. It's sad, but it also shows us that there is a path back to that place where we want Noah and our family to be.

I look forward to being there again with our family and with our boy so that we can see what other beautiful pieces of Noah have yet to be revealed.