Stem Cell Transplant - Round #1

Back to it

Gears have quickly shifted since our last big update on Noah. The relief and gratitude of the positive news gave way to focus and planning as we readied for our time in Toronto. Arrangements came together in time and, after a pre-admission visit with the cancer clinic at SickKids, our family prepared to begin this very intense next phase of Noah's treatment.

Last Sunday, after a lovely weekend spent savouring early summer moments, we visited my parents and returned home without the girls. They'll be staying with their oma and opa for the next couple of weeks and we said goodbye to them so that we could get Noah on the road early Monday morning.

And as we left my parents house without his big sisters, Noah became agitated and unsettled. Ever intuitive, he knew something was up and could feel the big changes coming.

He wasn't happy about it.

In the morning, however, he was resigned to what was coming. We were on our way early and at SickKids by our 8:30 check in time.

A week of chemo

By the time we had moved all the things we thought we might need to clothe and distract Noah for the next couple of weeks, Noah was started on his first of six days of chemotherapy. The doses are big and the infusions are long.

As with other rounds of chemo, Noah started off full of his regular zest and gusto. Trying to keep him busy and entertained occupied most of our time in the hospital. Luckily, Noah loves to play and there are great toys available to the patients at SickKids through the child life department.

In spite of what we had assumed previously, Noah was allowed to leave the ward during this first week of chemo. This was a pleasant surprise and gave us the opportunity to book Noah time in the two play spaces that are available in the hospital. We were even able to get Noah on the rooftop patio where he and I played foosball and made smoothies in the toy kitchen.

There were some really good moments and the toughest part was just navigating the size of Noah's personality within the confines of the hospital.

The first four days also required Kim - who is taking on the lion's share of Noah's parental care while I continue to work - to give Noah baths several times everyday, including one at midnight. This was necessary to protect his skin from the severe burns that can occur as the first chemotherapy medication makes its way out through Noah's pores.

By Thursday, the fourth day of chemo administation and a day on which different chemo medications began to interact in not-so-nice ways, signs of Noah's decline became obvious. He began to feel nauseaus and food became difficult to keep down. The desire or ability to get out of bed waned. His appetite dissapeared.

Again, there were moments, but there was also more time spent nodding off in front of screens or while being read to.

The nasogastric tube, which Noah has been living without for over a month, has been brought back to help with medication and a few feeds. These helped Noah get through a couple of days where eating and swallowing were becoming "ouchey".

These feeds, however, have given way to Total Parenteral Nutrition, or TPN, which is, essentially, a way to feed the body through intravenus lines. Noah is getting sugars and lipids through IV bags as this saves his weak tummy from any extra agitation.

On top of the TPN, Noah has been receiving a number of different antin-nausea drugs and other medications meant to protect his liver.

Rest day today, infusion tomorrow

Today is considered a "rest day" for Noah because he has finished receiving his chemotherapy drugs and because he has not yet received his stem cell infusion.

And Noah certainly has rested today. After a long night of deep sleep, he woke up retching and drooling, a sure sign that an expected case of mucositis is building up steam within Noah's digestive tract. Morphine has been given to help deal with this and we anticipate that he to be on a morphine infusion for quite a few days.

At this point, what we hope and pray for is relief from discomfort and pain for our little guy, and that the medications and TPN being given help provide this.

Tomorrow, Noah will receive his stem cell transfusion. Noah's blood counts will continue to drop but this transfusion will eventually help Noah's bone marrow start to produce the white blood cells and nutrafils that will rebuild his immunity. Usually, doctors start to see the signs of this slow bounce back begin after a week. Until then, Noah will be sick. And vulnerable. He moves into a sterilized room tomorrow. Enhanced sanitation measures will begin.

We are walking into the darkness.

On the Bone Marrow Transplant unit, the day of the stem cell infusion is referred to as "day zero". We had been in negative days - we started at "day minus seven"- and it certainly feels as if we have been awaiting some sort of zero. Noah's health continues to decline, even as the numbers of days begin to go up.

The worst often comes between "day seven" and "day nine".

The bounce back often comes around "day fifteen".

So, as ever, we move forward. Into the darkness, but believing in the light.