Chemotherapy has done a good job, and so far in only four rounds the tumor has shrunk to less than half its original size and has retreated to the ‘suspected’ core. The latest scans show it as a simpler condensed shape in a confined location which gives a ‘green light' to operate.
As parents this situation was bittersweet, and for anyone else faced in this position, you may also find yourself at a fork in the road. If chemo is working so well why can’t we just keep going with this? As we mentioned in our previous post the effects of chemo may not be the same throughout and we were told his progress so far has been good enough that we need to maintain momentum by operating. We were referred to Bristol Royal Hospital for Children who specialize in the procedure Mason required.
Masons operation came with a handful of risks, as I’m sure most operations do. Whilst trying to process all of this we endeavored to focus on the primary reason to operate which was to remove the growth and ultimately preserve his life.
He would require a transverse laparotomy to gain access and displace his digestive system to reveal the main site. We were warned that just moving these organs can cause them to ‘go on strike’ and the surgeon indicated that although less of a risk, that there would be a risk that he may lose permanent function of his bowels, bladder, and ureter.
Consultant surgeons revealed that the core mass had retreated to his psoas, one of three major muscles that connect the spine to your legs, and the risk implications would be associated around his pelvis and left leg. The operation was expected to take 6-8hours and the majority of the time would be spent cutting and cauterizing around the nerves and blood vessels in that region.
We were briefed that stretching a nerve could mean temporary numbness, pins & needles in his left leg. Actual damage to a nerve could result in permanent loss of feeling and potentially function in his left leg. If there was damage to blood vessels and for whatever reasons they couldn’t reroute blood to his leg then Mason would lose the limb.
These discussions were very 'matter of fact' & unemotional, and if you are reading this, awaiting something similar then all we can suggest is to interpret this as a sign of professionalism. These guys are the experts, doing this day in day out in contrast to us trying to comprehend our one-year-old being cut open and manipulated.
As the surgeon ran through all of the risks in order, we noticed he began to run out of space on the form, and we were soon to be signing the consent on this piece of paper which had writing pouring off down the margin and on an additional page. To finally include, and not forgetting the ultimate ‘risk of death’. Great. Nevertheless, they estimated a less and 1% chance….we’ll take those odds thank you.
Leaving the meeting with specialists, both our heads are spinning. Naturally, our instincts are conjuring up other solutions to mitigate the risks of this ‘imminent’ procedure. Ultimately there is no choice, Mason has made good progress so far and we must trust the specialists and their expertise.
We’ve asked every question we can think of, no matter how stoopid we think we may have appeared........Now we let go.
*Edit - superman outfit was last minute spontaneous purchase purely for effect! He is our little hero and we thought it might raise a few smiles on the ward, the morning of his big day......which it did! We let him loose, running up and down the corridor shouting 'hiiiiya' to everyone.
James emma mason found the blog your favourite bus driver