Scanxiety: a term introduced to me by @littlepressco, used to express the massive anxiety oncology patients, parents, partners and loved ones feel around the scans that will give way to big, life-changing news.
Over the past three months the number of decisions we've had to make in relation to Benjamin's medical care have been overwhelming. Not to mention that making them from an informed position came with a steep learning curve, especially for two parents lacking a science or medical background. Before December 2021 our most common medical decision was whether or not to give Tylenol.
If you've been following our journey from the beginning you're aware of some of the tough decisions we had to make early on - whether or not to permit a CT scan in the discovery phase, whether or not to allow Benjamin to be admitted to hospital amidst a spike in COVID numbers in an attempt to get him a spot on the surgical board for an emergency biopsy, whether or not to opt into the treatment trial, whether or not to proceed with a port-a-cath, etc.
As recently as last week we've had a new decision crop up. Benjamin's oncologist confirmed with us that in addition to the CT scan he'll be receiving following this second round of Induction he'll also undergo a PET scan. This will be Benjamin's third CT scan and first PET scan so when I was asked if I thought he would be able to do it consciously or if he'd need to be under general anesthesia (GA) my answer was consciously, same as the previous two CTs.
What I've leaned since then is that while a CT and a PET are similar in terms of what Benjamin's experience would be (lying face up on a flat bed, head and neck mobilized and mechanically moved into a large tube making loud white noise sounds), the time required for each is quite different. Especially in the context of a young child.
A CT takes ten minutes to complete while a PET takes roughly half an hour. As I've said, twice now Benjamin has been able to stay completely still while fully conscious for the ten minutes required for the radiology technologist to capture clear CT images but thirty consecutive minutes in addition to the ten is a significantly longer period of time for a four year-old.
The call came from the Sick Kids Nuclear Medicine Department asking me whether I thought Benjamin would be able to stay awake and lay completely still for both scans sometime in mid-late April or if I thought he should be put under GA. If you have children or know any children, you know that predicting their behaviour in the next five minutes is next to impossible, let alone what it will be on a random day in a month's time.
I had a discussion with the person on the other end of the phone which included weighing the pros and cons of each scenario:
CONSIOUS | Pros | Cons |
| No peripheral IV required in addition to a butterfly | Risk that the images are not clear leading to repeat scans, increased radiation and time to get results which prolongs next steps in the treatment process |
| No COVID PCR test required | |
GENERAL ANESTHESIA | Pros | Cons |
| Clear imaging is guaranteed | Peripheral IV required in addition to a butterfly |
| Unlimited Freezies (this is a huge Pro for Benjamin) | While low, there is always a risk of fatality with GA (terms like 'low risk' and 'rare' is not comforting to me as Benjamin's cancer is extremely rare) |
| | Benjamin's already been under GA twice this year and it's only March |
| | COVID PCR test required two days prior to GA |
After going back and forth I decided to book him an appointment with GA in spite of the much more lengthly cons list for one reason only: it's easier to drop from a lengthly GA appointment to a shorter non-GA appointment than it is to change a booking from a non-GA one to a GA one.
After that call we spoke to my mother-in-law, a doctor, about how to make the best decision because in my gut GA didn't feel good. She reminded me of an oral sedative that Benjamin had received before being wheeled away for his biopsy back on New Year's Eve. He commented that it looked like chocolate pudding and he tolerated it well. It made him dopey and sleepy to the point that he easily sunk into me. I added this to my ongoing list of questions to ask Benjamin's oncologist before he was to have his ninth round of chemo.
Later that week at that appointment we had the opportunity to discuss GA vs conscious with the oncologist. He told us that he'd had patients in the past go to their scan appointment and try to complete them without sedation. If it becomes difficult for the child to remain still in order to capture clear images they will call in the anesthesiologist. He recommended that I call Nuclear Medicine to discuss the details.
The next day I phoned the Nuclear Medicine department of the hospital. I expressed my concerns about GA and they were met with active listening and kind understanding. The person on the other end of the line explained to me that we could absolutely go the route we'd discussed with the oncologist. She told me that in order to maintain GA as an option on scan day, we'd have to do all of the preparation for GA, even if Benjamin was able to complete his scans without it.
What that means is that two days before his scans we'll go to Sick Kids for his drive-thru PCR test. He won't be able to have anything to eat after midnight the night before his scans. He won't be able to drink anything four hours before his scans (small sips of clear liquids only). When we arrive at the hospital for his appointment he will have a peripheral IV put in to his hand (he calls this his "Spiderman" because it looks like he can shoot webs out of the tubing and because that's what the nurse told him the first time he had one put in) in addition to his butterfly.
While not perfect, this approach makes sense to me and gives me some hope that we'll be able to do it GA-free but that there is a plan if things don't go that way on scan day. But poor little guy. Not surprisingly he's become averse to needles throughout this whole experience and he'll need his butterfly as well as a peripheral IV on the day of his scans. Unfortunately he's equally anxious about needle insertion as he is about the removal. Benjamin's also fearful of the "brain tickle", or COVID test as it's more commonly called, and we'll need to disrupt his school schedule, his dose of normalcy three days a week, to have it done at Sick Kids per the hospital's protocol.
We're now just under two weeks away from the next round of scans and the scanxiety is mounting. Not only about how each of the preparatory steps will go but also for the torturous seven to ten days following that we'll be waiting for answers. On edge every time our phones make a sound, never knowing what day or what time the call will come, or even who will be on the other end of the phone delivering the news. What the news will mean for Benjamin, for our family. Until then all we can do is our best to remain hopeful, positive and to live in the moment.
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