Incredible Noah

Where we've been

The trajectory of Noah's life and treatment has continued in pretty much the same manner as it has in previous posts I've written.

In the time since the last entry, Noah has (mostly) bounced back and he continues to grow and develop much as any other three year old boy his age does. It has been a blessing to see this little toddler as he, more and more, becomes the little boy God has planned for him to be. He is a rascal, a jokester, a giver, a cuddler, a fighter, a stinker and a light.

Though we were bracing ourselves for the severe nausea that had accompanied Noah's third round of chemo, which used the same drugs that were given during this most recent fifth round, he was mostly spared the ill-effects. This was because of the big "game-changer" that helped us to stay one step ahead of his hydration quandary, namely nightly intravenous fluids.

Though we (me, mostly) were nervous about the responsibility of connecting saline solutions to intravenous pumps which are then connected to Noah's central lines which are connected directly into his cardiovascular system and which could become infected if we did things improperly or unhygienically or which, if mishandled, could lead to letting air bubbles and embolisms which would be horrifically bad, we (Kim) learned and gained confidence quickly and, with the help of home care nurses we were able to successfully keep Noah hydrated through the worst of the side effects of the chemotherapy. The nausea only lasted for a few days as opposed to a week and, even though not everything stayed down, Noah felt better and was much more open to food and liquids because he wasn't dehydrated. He got stronger, felt better and put on weight much more quickly. When Noah accidentally pulled his nasogastric tube out (while doing a somersault), it did not need to be replaced because he was already getting enough nutrition the old fashioned way.

And he's been feeling pretty good ever since.

So we enjoy life as a family and with Noah and try to keep in mind that he is immunocompromised when he wants to do reckless things like jump on the trampoline with his sisters because broken bones and other injuries just might not heal as well as they would if he hadn't been just a week or two out from his last chemotherapy session.

Thankfully, there are other things to do besides bouncing on trampolines.

Heading to Hogtown

Besides taking the time needed to recover from his last round of chemo, the last few weeks of Noah's treatment have also been all about preparing for the next major phase of his treatment, which is the bone marrow transplant coming up at SickKids hospital in Toronto.

I will try to share here the most basic explanation for what is going to be happening to Noah over the next few months. This is pretty distilled as well as filtered through my non-medical thinking so it may not all be exactly what is planned but more my impressions about what I think is going to happen. I'll correct things in future posts as we go deeper into the treatments.

While in Toronto, Noah is going to receive two more rounds of chemotherapy. The rounds will involve a variety of chemo drugs, some of which he has received in prior rounds.

The big difference between the prior rounds and these two is going to be how intense these rounds will be. He will be given more of the medications and over a longer period of time.

The point of these two rounds will be to track down and eliminate as many of the neuroblastoma cells remaining in Noah's body as possible.

And these rounds are going to take Noah out.

How bad is it going to be?

After the administration of chemotherapy medications is completed, Noah will receive the "stem cell transplant", which is basically an infusion of his own stem cells. These are the stem cells doctors harvested way back in February. He will need these stem cells so that he can begin to regain immunity. Without them, this wouldn't be possible because Noah will no longer have any live bone marrow. The stem cells will help him to regrow bone marrow so that he can start to rebuild his immunity.

To give an idea of how negatively Noah's immunity will be affected is the reality that, once these rounds and transplants are finished, and once some immunity has returned, Noah will have to be completely re-vaccinated. Starting about six months after the treatments, he will begin the same vaccination schedule that most children start as infants. He'll be back at zero.

This also helps to explain how vulnerable Noah will be in the time following these two rounds and why it is that Noah will be receiving his treatments in the isolation rooms at SickKids and not on our beloved oncology ward at McMaster. From the start of each round until doctors are comfortable enough with Noah's recovery to let him leave the hospital, Noah and only one of his parents will have to stay in a single room with a nurse on watch.

No walks around the ward, no bike rides, no two parent visits, no nothing.

The list of things that could become problematic and that could go badly during these vulnerable times would take over an hour to convey in a Zoom meeting. We know this because they took over an hour to convey in a Zoom meeting with the doctor from SickKids hospital.

The range and extent of the negative side-effects from this kind of intense chemotherapy I'll leave you to imagine because, if you can imagine it, it's probably one of the potential side effects. It could also be a lot worse.

I don't mean to be flippant but, as I've said before, if I couldn't laugh I'd cry, and I do cry often enough.

How long we stay at SickKids depends on how well Noah bounces back from treatments. If he is doing well, we'll come home for a time between the two rounds and get a little bit of summer at home. If things don't go so well, we'll be in Toronto for the next three months.

They say that the average stay is between three and four weeks and so this is what we hope and pray for. And we pray that things go well.

Our last meeting with SickKids will be a week from today. We get to check in on Monday, June 7th. The girls will be staying with family, I'll (hopefully) be checking in at Ronald McDonald House, and Kim and Noah will be checking into an isolation room.

The gear up / progress report

Preparations for Noah's treatment at SickKids have also involved a lot of testing, another reason why there haven't been updates on this blog for a bit of time.

These tests have had two purposes, the first being to establish a baseline for Noah's health so that doctors are able to monitor the effects of the upcoming chemotherapy on Noah's organs and body systems. These tests ensure that Noah is able to withstand the chemo and also to monitor how much damage the treatments are doing to his body.

The second purpose, and the one Kim and I have been anticipating anxiously over the last month, is to finally get a report on how Noah's cancer has been responding to his treatment over the last five months. Though we have seen Noah gain strength, develop skills, feel better and find joy, we have not actually seen or heard any concrete news regarding his cancer's actual response to the chemotherapy he has received up until this point. Other than the news about the shrinking of the primary tumor site, there hasn't been anything definitive to share.

So, over the last couple of weeks, Noah has had to undergo a number of tests and assessments. Some were pretty straightforward - the usual blood work, a urine test, GFR (kidney function), hearing, dental...

And then there were the more involved tests which involved sedation and procedures. On one day last week Noah underwent an MRI, CT scan, PET scan, echocardiogram, EKG scan and, for good measure, a bone marrow biopsy. He came home wobbling around and waffling between good spirits and drunken belligerence.

Today, high strung and sweaty palmed, we met with Noah's primary oncologist to receive our first news regarding Noah's progress.

And I'm happy to share here that the news is very positive. The oncologist told us that she was, "very pleased" with the results of the scans and biopsies. The cancer is still in Noah's body, but it is responding very well to the treatment it has been given. The level of cancer in Noah's bone marrow is less than 1%, down from 60 - 80%, and the active sites within his body are less active.

Praise God.

There was lots explained. What was good enough for me was to hear that the doctor is happy. If she's happy about how Noah is doing, then we are f***ing ecstatic about how Noah is doing.

And as long as there is road ahead for us to travel down, we continue down that road and trust that medicine, doctors, friends and family will be there to travel alongside us. And that God surrounds the entire journey in his grace and love and mystery.

Unheard of

What gets lost in all this information is the lived reality of life with Noah and it feels remiss to not share of the life and gifts time with Noah gives.

However, writing about little boys playing with big sisters in forts or hiding from very scary geese in the yard or sharing playdough birthday cakes with playdough snowmen does not always make for the most riveting reading, even though it is the best part about life with Noah.

But I'll share one more thing.

When Noah came out of his marathon sedation last week, I had a chance to talk with the anesthesiologist. Though Noah had only "woken up" a few minutes earlier, he was once again back to his spicy and lively self. He was eating tortillas, talking up a storm, bossing people around, yucking it up.

The doctor said that Noah had done very well through his sedations and that he was doing great since he had woken up. She was impressed by his energy and vitality. And when discussing how quickly Noah had managed to be up and active after his tumor removal back in April, how he was able to be up and riding a trike within a day of having major surgery, she talked about how this was unheard of.

How it (he) was incredible...

Incredible Noah.

I agreed.