Home From Round #2

Making an Exit

So, two days earlier than we were able to get out of SickKids after the first round, yesterday we returned from the big city, brought home the girls and were able to be a family who gets to live under a singular roof once again. It feels great.

Since the last posting, Noah has continued to slowly but surely recover and gather strength.

As he slowly began to recover from his mucositis, Noah's hydromorphone dose was lowered, his feeds were increased and his TPN was decreased. This is a bit of a painstaking process as there is a fine balance between challenging Noah's system and appetite and overdoing things. We would know when the feeds had gone up too quickly because Noah would retch and vomit. We would know the hydromorphone had been dialed back too quickly when his pain would recur and when boluses were needed. At times, it felt as the biggest part of our attention was on the clock, thinking about when we would need to give medication and try feeds; or when we could get Noah out of bed and when he would need to stay still for a bit.

And though things did not move as quickly as we wanted them to, doctors and nurses were always pleased to see that Noah was "trending in the right direction". Being able to come home yesterday was a bit of a compromise between our hopes and the doctors expectations. They said Friday, we wanted Monday and so Wednesday turned out to be the magic middle ground.

Now, having come home and after having a bit of space to reflect on the last round, we are very thankful and blessed that Noah was able to come through the last round about as smoothly as we could have hoped. As I wrote in the last post, there was a point in time where it really looked as if we were headed for a rough ride with the mucositis. Things were not pleasant for Noah, and he was in a lot of discomfort and he was pretty sick for a spat there but he was never brought too low.

And Noah has been more and more active since the last posting. Once Noah had become engrafted and once his digestive system settled, we were allowed to leave the isolation room and, eventually, the ward to explore, visit the play spaces, check on the SickKids construction projects and - most fun - to play hide and seek on the expansive eighth floor once all the busyness of the day had emptied out most of the corridors. There are plenty of great places to hide in many wings of SickKids, even if you are lugging along a conspicuous IV pole.

What is most surprising to Kim and I is how strong Noah has remained through all of this. We had presumed that Noah, having gone into this round still recovering from the first, would have come home very weak, depleted and sick. He is all of these things when you compare him to the average three, nearly four-year-old but he is also not nearly as weak, depleted or sick as you might assume one would be after going through the crap he went through.

He is able to walk and play and climb and jump. He's not ready to enter any sort of athletic competition, but he is miles ahead of where he was at this same return point after his first round.

Even more, his spirits and zest and joy are high and full. He is so glad to be home. More, he is ecstatic about being home. He is so happy to be with his sisters. He wants to play, walk, and help mommy in the kitchen.

Again, he has grown up just a bit and we see this all with fresh eyes as we work to re-enter family life.

And though Noah is still not really eating and drinking, he is tolerating his nasogastric feeds and we have good reason to believe that, once the remnants of his mucositis and "chemo mouth" pass, he will be back to pigging out like he normally does. He wants to eat and tries everything. Soon, things will be going down with more regularity.

Next Steps

With the completion of this round, Noah has now completed his last round of chemotherapy for the course of treatment he has been following. After eight months of chemo, this seems almost impossible to believe and it is strange to see it written out. Lord willing, though, Noah will never have to go through another chemo treatment again. I hope and pray that this is the case because I am sick of seeing my boy go through chemo because, for all the good it does - to put it artfully - chemo blows.

Further ahead there is radiation and immunotherapy, both of which we don't have many specific details about at this time.

In the near future, there are scans and tests that need to be repeated. These are the same scans that were given before and after the first round and these will determine how Noah's body was affected by the chemo. We will also get a picture of how effective the treatments were.

In the immediate, we work towards building up Noah's health. He will eventually be taken off of the nausea and painkilling medications and, once he can eat enough on his own, he will lose the NG tube. Noah will get to be a regular little boy and we will get to be a regular family.

What more could we ask for?

Thanks

Tomorrow Noah will go back to SickKids for a follow up appointment. If oncologists and specialists are happy and determine that he is ready to leave their care, he will be discharged from the care of the Bone Marrow Transplant team there and he will return to the care of the Oncology team at McMaster back here in Hamilton.

It could be the last time Noah has to visit Toronto for a long time.

While on one hand we couldn't be more excited to end this chapter of Noah's care, I would be remiss if I didn't use this space to share just how wonderfully Noah (and Kim and I) were cared for during his time there.

Kim and I were housed and fed generously by the volunteers and staff at Ronald McDonald House in Toronto. This allowed us to be close to Noah and to get the rest we needed so that we could be physically and mentally energized to be present when Noah needed us.

Kim and I were also cared for and confidently led by the staff at SickKids. Though we were often confronted with hard news and information, Doctors were always gracious, understanding and care-full. Nurses often seconded as sounding boards for anxiety about Noah's condition and treatment while also being subjected to hours of nervous energy fueled banter that they always pretended to be interested in.

Most of all, though, what we are most grateful about was how the staff of SickKids cared for and cared about our little Noah. The world of childhood cancer is a bizarre, sad and miraculous one and the Bone Marrow Transplant ward is unique and special corner of this world. And aside from the medical miracles that occur there, there are the miracles of care and community. As our boy walked through the darkest of valleys, he was held and healed by stem cells, technology, medicine and the love of strangers.

And so to all those who were the hands and hearts of Christ to our Noah, thank you.