Scans and Immunotherapy

Where to start?

It has been an incredibly hectic and stressful few weeks in the lives of Noah and his family. There is much to write in terms of updates and future plans and knowing where to dive into recent history feels impossible.

Probably the place to begin is on the 4th of November - the day of the scans.

Noah and I spent the first forty-five minutes of the day in the hospital parking lot, waiting for word on whether or not the team was going to admit Noah to start the process of completing the "jump" needed to get a clearer view of how Noah's body had responded to months of chemotherapy, surgery, stem cell transplants and radiation treatments.

We were stuck waiting in the parking lot because the radiology and oncology teams needed to decide what to do about the fact that everyone in our family was quickly falling ill with Covid-19.

Though Noah and I had tested negative, decisions needed to be made around risks and timing. Since Noah seemed well, it would be good to get the scans out of the way in case he contracted the virus later on. This was especially important because of the effects Covid could have on his lungs. If his six hour sedation ended up requiring intubation, lung issues caused by the intubation would be something that could be exacerbated by a respiratory infection.

There was also the concern of virus transmission to employees of the hospital. These wonderful, life saving people work with incredibly vulnerable children. Letting us in would put them at risk.

Eventually, the team decided to go ahead. Because Noah was healthy on that day, and because Noah's course had already been delayed a week, they figured that moving forward would be the best plan of action in spite of the risks. We were greeted by full PPE and once Noah was put under, I was asked to leave the hospital until his scans were completed.

And this was for the best. Soon after picking Noah up from his marathon of scans, I crashed and was feverish within hours. Thankfully, the worst of my Covid symptoms were over within a day. I just don't think that my vaccinated body could withstand the deluge of disease and stress over the days leading up to the scans.

Noah, somehow, remained well. Early on in our household infections, Noah spiked a fever and needed to be rushed to the emergency room. But his symptoms passed. Considering how absolutely terrible his blood counts and immunity levels were a the time, I would like to say that he was miraculously spared, but that doesn't feel right. All kids are miracles and deserve miracles.

It just wasn't his time.

Scan results

Because of all of the sickness, Noah had a bit of a break from the hospital and the clinic and this has been both welcome and unsettling. It has been welcomed because his days at home have been uninterrupted. He gets to establish routine and he gets to live life like most normal kids get to live their lives.

The port that Noah had put in as a replacement for the Hickman catheter has healed over to the point that Noah is now able to fully submerge his body in water. Last week, after ten and a half months, Noah took a bubble bath in water that was more than two inches deep. He played and splashed and screamed for almost an hour and it was hard to imagine a more beautiful sight.

Being at home has also given Noah time to grow in other ways. His language and vocabulary have exploded. After a nearly year long hiatus, Noah resumed potty training and became "Lord of the Throne" in under seven days. As well, the length of his hair now surpasses my own by a full centimeter.

But things need to mover forward. By Tuesday the time had come for Noah to get back into the clinic. Regular blood work, weigh-ins, check-ups and consults needed to be done. Most of all, the results of Noah's scans needed to be discussed.

Once again, we were more than ecstatic to hear that results of the scans are overwhelmingly positive. There are no longer any discernable, active cancer sites within Noah's body. There was no detection of active disease in the blood.

For all intents and purposes, as of November the 4th, Noah's body is cancer free. Hallelujah!

The scans did reveal scarring on organs and throughout the body and there are lesions on his bones. These are reminders of how far the disease had managed to spread throughout his little body.

As well, the scans indicated inflammation in Noah's esophagus and stomach. This is most likely due to radiation and helps explain why Noah still struggles to eat. This will heal, but it will take time.

Though the positive scans don't change either the prognosis or course of Noah's treatment, they are reason to celebrate. Things are going as well as possible. We pray that this continues to be the case.

The next phase

As I've mentioned previously, high risk neuroblastoma is a particularly nasty and aggressive form of cancer. Though it responds very well to aggressive treatment, it also has high rates of recurrence. The trick is to do as much as possible to prevent the neuroblasts from coming back.

Which brings Noah to his next phase of treatment, immunotherapy.

Immunotherapy is meant to assist and teach Noah's immune system and white blood cells to identify and destroy neuroblasts that could reappear within his body. I, once again, apologize for my poor scientific explanation of what will be happening. I'll try my best.

Noah will be going back to the hospital for six cycles of immunotherapy.

The cycles begin at home. Noah has already begun taking a medication that is meant to dull nerve pain. Typically prescribed to treat seizures, this medication is being taken now so that it can build up within his body and be effective when needed.

In a couple of days, Noah will begin to receive more shots. He will have an insuflon put back into his leg and we will begin injected a drug that is meant to boost his immune response. This medication, GM-CSF, is similar to the G-CSF he received to boost his bone marrow production during his chemotherapy rounds.

Sunday, Noah will return to the oncology ward at McMaster for the first time since May and he will get to stay for four consecutive days of antibody therapy. The drug he will be given, Unituxin, will be administered over a 10 hour period, Monday through Thursday, and it will be the playing the main role over this phase of treatment. This is the drug that will work with and teach his white blood cells to identify and destroy and immature neuroblastoma cells that could occur within his body.

This drug will have the greatest impact on Noah's immune system. It will also cause the greatest response from Noah's immune system and so he will be closely monitored while it is given.

Since the drug is meant to destroy neuroblastoma, a cancer which affects nerve cells, it will also have a major impact on Noah's nervous system. It follows that expected side effects to this treatment include neuropathy and nerve pain. This is why he is being given medication to pre-emptively combat this. The team will be quick to administer any pain medications required during the infusion of the antibodies. Other immune responses such as fevers and anaphylactic symptoms are also to be expected. Capillary leak syndrome is one of other potential side effects.

Like with all of Noah's treatments, we have been given a list of side effects that cause us to pause. Not because we are in any way hesitant to move forward with Noah's treatment, but because they are a reminder of what we are still fighting.

The hope we are given, however, is that most of the side effects will be short lived. Feasibly, once the 10 hour infusion is completed, Noah could begin to feel well. It is not uncommon for kids in immunotherapy to languish throughout the day only to want to party all night. We hope that this is the case.

When the four days of infusions are over and once Noah is feeling well, he will be able to come home. He will continue to receive his GM-CSF shots for a few days and he will begin taking retinoids. These are meant to encourage neuroblastoma cell "differentiation". As I understand it (again, as a completely unqualified not-doctor) this means that the neuroblastoma cells will be pushed into "maturing", which is to say, become more benign and less dangerous.

The whole cycle will last 24 days, after which he will have four "rest days" before the next cycle begins.

We move one day at a time.

Mornin' Sun

As I alluded at the beginning of this post, it is difficult at this moment in time to feel as if our heads are fully in the game. Noah's cancer treatment is moving forward and, in a few short days, he'll be back at the hospital, once again receiving intense and scary drugs and treatments that - in any alternative life - should cause us as parents to break down in nervous tremors.

In the last month, Noah has had minor surgery to "install" a port under the skin on his chest, a procedure that required doctors to tinker with veins connected to his heart. He has undergone another six hour sedation and he has had bone marrow samples taken from his hips for the third time in under a year. He had a nasogastric tube shoved up through his nose for the umpteenth time, only to pull it out a few weeks later while napping restlessly. He has had to muscle through throat and stomach pain just so that he could eat enough food to keep his weight up.

Any one of these struggles should have prompted Kim and I to rev up the prayer chain because they are intense and serious. But they are also a normal part of childhood cancer. They have become our normal and we are learning how to deal with them.

Nothing, however, had prepared us for the struggles which we encountered over the last month. Covid - something we had been incredibly conscious of and which we tried so desperately to avoid - hit unexpectedly and affected our family in ways we could not have anticipated.

By now, we have become familiar with feeling (and sometimes sounding) desperate. Our child has a life-threatening disease. For a couple of weeks this past month, Kim and I felt about as desperate as we've ever felt. This within a year of desperate weeks and over the course of lives that (if you have known Kim and I at for any length of time, you know) have had some pretty desperate times.

This is because, for the first time since Noah's treatments began, things were up in the air. Because when your child has cancer you will do everything within your power to ensure that your child gets the treatment needed as soon as possible because getting that treatment will give your child the best possible chance of beating a disease that is terrifying and aggressive and that has already stolen so much time and life from a boy who is only four years old and has already had to suffer more than most people ever suffer over an entire lifetime.

Powerless, you pray. You don't sleep. You hope. You get sick. You become desperate.

And though there is nothing you can do but suffer and wait for the night to pass, holy mysteries complicate matters.

Because during a time of darkness, we didn't suffer alone. At first, we thought we might have to but, in the deepest, bleakest moments, we were met by kindness from people who were willing to act out what is probably the most difficult manifestation of love, and they came and suffered along side us.

Admittedly, I am probably more like the disappointing disciples in the Garden of Gethsemane who were unable to stay awake with Jesus as he desperately agonized on the night before he died.

So I want to personally acknowledge those who kept watch with us during our dark night. You have shown us, once again, what love is and what Christ is.

Love may not be able to cure cancer. But it heals. Thank you.