Round #4

A weekend away

Saturday morning, the day after receiving the adoption papers from Noah’s social worker, the temperature was cold but the sky was clear and the wind was still. It was the sort of weather that compels you to bundle up, get outside and revel in the hope of spring by riding around the neighbourhood and coasting down hills on a bike - or strider, in Noah’s case. The dog walkers were out and a full weekend lay ahead so the spirits around town were high. When our little hill route around town was complete, Noah and his sister spent time re-discovering the old play sites throughout the yard which had just recently been freed of melting snow and mudholes. It was a great way to start a day.

But the fancy cannot cheat so well and by nine o'clock we were forced to reign in the fun, to pack up Kim and Noah’s things and to escort them back to McMaster for Noah’s most recent round of chemotherapy.

And, once again, this round was a bit different from the previous three.

Last round, Noah was given medications over three days. These were different drugs than those given during the first two rounds and they made Noah terribly nauseous. For a week after Noah came home from the hospital, he really struggled to keep any sort of nutrition in his tummy. Though his appetite was still halfway decent, his stomach refused to cooperate and by Friday we had our first experience with a thrown up nasogastric tube and a very unexciting trip back to the emergency room to have that tube replaced.

It was not a fun day.

We had a less fun day two days later when Noah became so unable to hold down his anti-nausea medication. Certain we would have to be re-admitted, we consulted with the on-call oncologist and settled on a last-ditch plan for tiny, 12mL feeds every 15 minutes. Not very optimistically, we went ahead and – somehow...miraculously – he managed to keep everything down for the rest of the day.

The next morning, Noah asked for and ate half a peanut butter covered bagel and that was the end of that. The nausea had passed and we were able to spend the next two weeks with a fairly happy and active toddler.

This round, Noah was only given chemo drugs over two days but for a longer period of time.

I’m starting to gain a vague understanding of the significance of these different types of chemo medications and their administration. Chemotherapy is meant to attack the quickly dividing cancer cells in Noah’s body and the chemo drugs are meant to attack these cells at different stages of cell division. Though I don’t remember much about the replication of DNA during mitosis, I do remember interphase and “purple monkeys are tough” and, my foggy understanding is that attacking cancer cells at these different stages is an important part of killing the cancer in Noah’s body. Full disclaimer, as an English and history major this area of study is not my forte and I'm probably only half right here.

The drugs Noah was given this time included two which he had not received before and one which he had been given over the five days of the first and then second round. The difference this time was that he received a dose of this previously used drug which was six times larger than during those first two rounds.

The trike

And though it was only a couple of nights away, Noah did have a very exciting time at the hospital. We had been bracing ourselves for more intense nausea as this as a common side effect felt during the administration of this round. At first, Noah did not seem to be faring well, especially by the second morning of treatment. But then Noah's interest and curiosity was finally obliged by a helpful nurse.

And Noah was introduced to a long pined after trike.

Usually, hospital time is tricky. If Noah is feeling awful, he just sits in his bed and wants to watch TV, but when he’s not too far down in the dumps and wants to be active there are limited outlets for his energy. One can take walks and play with toys but these activities can only hold the little guy’s attention for so long. The trike was a revolution.

Though not good for the safety of families, nurses, doctors and hospital workers traveling the hallways of the third floor at McMaster, the trike was a God-send for Noah and his parents. It initially took a bit of time and frustration for Noah to figure out the mechanics of the thing, but his desire and determination eventually won out. Noah has an incredible ability to power through when he wants something and he really wanted this to happen.

And so, at first tentatively and carefully, Noah began to make his way around the halls of the third floor. With a parent trailing behind to push his IV pole, Noah figured out how to maneuver his way around the halls at a nice walking pace…and then at a brisk pace…and then at a dangerous pace. I began to wonder as I ran behind, fighting to keep the intravenous lines loose enough so they would not tug at his chest and still tight enough so that they would not get caught in his wheels, What would happen if I tipped this thing over and I smashed this IV pump on the floor? Would I have to pay for it? And how can I stop it from landing on Noah?

Noah, obviously, was not concerning himself with potential dangers. He became indignant when he thought I might be suggesting that he be careful. He cruised within inches of oncoming power jacks loaded with laundry. He solicited lots of comments and smiles from oncoming walkers. And he screamed, “Wheeee!!!” at the top of his lungs.

Back home and looking ahead

But, as fun as the trike was for Noah, he is always happy to come home and, since yesterday, that is where he has been.

Right now he is feeling pretty crappy, which was to be expected. The side effects he is experiencing are similar to those of the first two rounds. He has little to no appetite, he is irritable, he is tired and he just doesn’t feel very great. One side effect that is more pronounced this round is a sore mouth which, much like hair loss, has to do with the chemo drugs indiscriminately attacking quickly reproducing cells. Already, though, he seems to be getting a bit of relief from this.

What lies ahead is a bit of a break from chemo so that Noah can undergo the surgery to remove the largest mass of cancer in his body, the one which is growing around his spine and up behind his lungs. This has been the plan since the time of his diagnosis and is all part of the course of treatment given to neuroblastoma patients with Noah’s level of “spread”. Between now and the procedure, Noah will receive another CT scan and MRI so that surgeons can be prepared to remove the growth at the time of the operation.

While we are not really looking forward to the actual surgery, we are a bit excited about one thing – the time between now and the surgery. Because his blood and body need to be as healthy and strong as they can be before the operation takes place, the tumor removal is scheduled (tentatively, of course) for April 16th – a full month from the time of this writing.

So, if things go as we hope, Noah could be on the bounce back within a week which, if things go as planned, would give us an additional three weeks during which Noah is gaining strength and getting back to being our regular, non-chemotherapy side-affect little boy. These three weeks also overlap with our deferred Spring Break, which will come right at the tail end of this pre-surgery recovery time. I think some serious family time is coming down the pipe!