Clear. As. Mud.

So many of you that have been closely and wholeheartedly following already know that Abbigail had an MRI last week that was supposed to simply show stability within her little body and her liver tumour. Instead we face more heartbreak, frustration and fear as it showed concerning and suspicious new activity within the marrow of her pelvis. Quickly an MIBG scan was scheduled, the radioactive iodine-123 was ordered and our worries heightened, stomachs turned and hearts sank AGAIN as we waited…waited for the scan itself And then waited for results.

Well, the MIBG report came back clear with no abnormal uptake of the radiotracer was detected anywhere. But what does that really mean? And how does it affect our thinking and plans going forward? The first thing to say is it didn’t entirely surprise me that the scan came back “clear.” Her last tumour (still present within her liver) investigated by MIBG didn’t positively light up on screen with MIBG uptake either. Today’s report is definitely a positive result, the best we could have hoped for; but at the same time (unfortunately) it’s neither remarkable nor game-changing. We still have these MRI images showing metastastic action in her pelvis, her liver is still home to a lesion and her body hasn’t been performing or acting in a way that would mirror a healthy child – something isn’t right and I promised my baby girl 2.5 years ago that I would never doubt my instincts again.

To help you understand our concern still, I will quickly explain that one of the many scans that Abbigail has been having regularly for the past 2.5 years is called an MIBG scan (meta-iodobenzylguanidine). This substance is usually picked up by receptors on the surface of neuroblastoma cells. For scanning purposes it has a radioactive tracer attached to it (usually radioiodine I-123) that can be detected by imaging equipment. It is probably the most specific, most accurate and most widely used of all diagnostic techniques for detecting neuroblastoma. Of course, like almost everything else it’s not infallible. Some children present with non-MIBG avid disease, or their neuroblastoma mutates to become such. Abbigail’s primary tumour, discovered within her left adrenal gland in February 2012, was MIBG-avid, however her liver lesion, discovered in February 2013, a full year post frontline treatment, was surprisingly not MIBG-avid, such as this recent highly suspicious sacral bright spot within her pelvis, which means perhaps Abbigail’s recent tumours are among the rare 10% of neuroblastomas that do not pick up the MIBG substance. Does this mean that her cancer has mutated? Is her neuroblastoma changing over the years?

Abbigail still has a lot of disease, her liver and pelvis are riddled with lesions and abnormal cells, as evidenced by various multiple scans. However, there is currently little evidence to show the activity within her pelvis, as evidenced by her recent MIBG scan. So now what? Do we allow a biopsy, PET scan or further treatment? The result of Tuesday’s MIBG scan is good I guess, but mainly because it would have been worse if there had been significant uptake on it, but as it stands, we can still hope and pray that this monster isn’t hiding elsewhere and until we investigate further nothing or no one can take that hope from us.

I said earlier that I wasn’t surprised by the latest scan results. Although I didn’t necessarily expect the scan to be completely clear, I didn’t expect there to be significant uptake either (although it’s always impossible not to worry that something nasty is going to show up). My thinking was that Abbigail has had stable disease for the best part of SIX months now. If she’s got stable disease, it either means treatment has holding it at bay, or the cancer itself hasn’t been doing a whole lot. Reflecting on what treatments she’s had in the last couple years, I think her disease was in some form of hibernation. Maybe the multiple chemotherapies she had last year did enough to either slow the progression, maybe even stop the dividing of her liver tumour NB cells, but not enough to destroy any persistent undetected cells – Abbigail’s scan results aren’t consistent with responses that have been seen in some other children. We can only speculate because we can not monitor if they are not MIBG-avid, so at what point did her disease first became active again will forever remain a mystery, maybe it was never inactive at all and she has been fighting inside since that dark day in February 2012.

I’d love to believe that her NB has all matured, that the cells have divided as many times as they are going to divide, and that things are now just going to remain in this state, with no further surprises or undetected cells. But truthfully, deep-down inside, I don’t believe that for one minute. Maybe one day…but not today!

Even if I did believe it, consider this; the majority of children with neuroblastoma do achieve a first remission, their scans show no evidence of disease (NED), and yet of these children somewhere between 40% and 60% go on to relapse, the neuroblastoma comes back. Despite all the intense, destructive, super-toxic, treatments these children are given, residual disease still remains at the end of it. Too small to be detected using current imaging techniques, even the most neuroblastoma specific, the MIBG scan. Yet eventually this residual disease grows and multiplies to become a full-blown observable tumour, and relapse happens. If a child who shows NED has minimal residual disease that can’t be seen, in my own mind I have already decided that Abbigail has other areas of disease, not showing on any of her scans, but which nonetheless are active and which will, given time, result in new tumours forming. So we have to think about this, as well as what does currently show up on her scans today; the pelvis and liver disease. It’s why we put her through chemotherapy and soon a treacherous transplant. It’s why we are considering all sorts of treatments, such as cis-retinoic acid, a super high-dose of a vitamin A derivative, which has been shown to cause differentiation in neuroblastoma cells, turning them into mature cells that will no longer sub-divide. It’s why we’ve extensively researched our next move. Seeking at possibly getting Abbigail some form of immunotherapy, the antibody treatment that has proved to be a major breakthrough in the fight to prevent relapse in neuroblastoma patients. We know the harsh reality of this type of cancer, we understand the odds and despite all of our hope and faith, we can’t ignore what is right in front of us!

Abbigail will be back at the CHEO for her OMS treatment this week, at which point we will discuss in depth with her oncologist about our next investigative approach and possible treatments. Her amazing team at CHEO will be in discussion this week, so please pray they have answers for us. Until then, together we will face our reality here and continue on living life! All the while holding our breath, but never losing hope!

And so there you have it. I know my updates are becoming ever more complicated…but then so is the situation we find ourselves in.

Thank you for reading, sharing and praying as we struggle through this unpaved path.

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