How long can we be ignorant for?

Sigh…as you may have gathered, this journey has been nothing short of complicated and the uncertainty of every aspect of Abbigail’s health is wearing our family thin. One step forward has always been followed by two steps backwards and her rare presentations of complicated tumours, symptoms and even her resistant OMS have puzzled Abbigail’s medical teams all over the continent.

“How’s Abbigail doing,” you ask?

Abbigail’s OMS symptoms are once again working against her. Her legs have been aching and her pain centre doesn’t seem to signal pain intensity to her until it’s unbearable so she often overworks herself and causing further pain. Her coordination and motor planning is frustrating to her when it comes to small and simple tasks for the average 4-5 year old, at best she is at the same level as her 2 year old brother. When it comes time to communicate, she has her own system that works well with family, most days…she is learning so much from her little brother but the frustration this huge gap has created causes so many difficulties for her and our entire family dynamic. The other aspect of her OMS which causes her the most difficulty is her temperament, irritability, self control and behaviour. She screams. She cries. She hits and smashes. When her immune system is the least bit activated, either due to fatigue, infection or stress, it is obvious to all. It is alarming to us as her parents to witness, it is unfair to her siblings and it is so difficult on Abbigail to be constantly at battle with herself. We saw a huge leap in improvement of these symptoms a few weeks back, then recently we found ourselves a few steps back this last week with increased symptoms. Perhaps this is indication she is fighting something but that the stem cell transplant is still trying fight off the OMS within her body. We will continue to hold her tight and help her through the difficult days in hopes of a better tomorrow for her.

“What about those liver spots found Christmas Eve,” you secretly wonder but are afraid to mention?

Just before tearing open the gifts under the tree, we were burdened with news that her MRI showed a significant number of small nodules within several segments of her liver. This is news we were not prepared to hear. Our hearts sank AGAIN. She just finished going through one of the most gruelling treatments known to a Cancer patient; lethal doses of multiple chemotherapies over the course of only a few days, essentially putting her at a high risk for mortality due to complications. How could this be happening now? We cling to the possibility that this was a complication of her post transplant infection, that these spots would slowly disappear as she healed and her infection cleared. In early January we put her through a long ultrasound to further investigate these spots and it revealed that they were still there and perhaps even slightly more prominent than three weeks prior on MR imaging. There were discussions with surgeons, radiologists, oncologists, GI specialists, the infectious disease team and her bone marrow doctor in Toronto. The consensus was that we needed a piece of tissue to definitively know what these spots are. They have press rated themselves in such a way that they do not fit any diagnosis with even partial certainty. The tumour board then reviewed her case and decided to wait yet an other week, now a full 5 weeks after finding these on MRI, to rescan her liver to see if they had changed and if a biopsy was granted, because this procedure poses a certain risk and merits considerable discussion before proceeding.

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Yesterday Abbigail had a beautiful day with her good friend Molly Penny, CHEO’s therapeutic clown. They were photographed for an Art project being published by medical students. Their ever growing relationship has had a huge impact on Abbigail and this will be beautiful to see in print. These two “clowns” also played play doh and acted silly together, Molly always following Abbigail’s lead and never letter her lose sigh of the laughter. Molly kept Abbigail from remembering how hungry she was (she had to fast all day) and she didn’t allow her to worry about why she was even there yesterday. It was such a wonderful day watching them interact and laugh together, like we weren’t even in a hospital, that I too had a few moments of sheer bliss and ignorance, not thinking of the fear I had. This beautiful day was just that for Abbigail! She got through her ultrasound with Molly and her CHEO buddy Erika by her side and she was none the wiser…memories of laughter, simple play and good friends are what filled her day!

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She lay still, talking about the silliest of things, farting on us all and laughing without a care in the world, as I watched the technician’s screen full with bright spots as she scanned my daughter’s liver. What was a near blip it seemed two weeks ago has magnified and multiplied significantly. The radiologist walks into the room as Abbigail prepares to take her friends outta there and confirms what my untrained eye witnessed. Abbigail’s liver nodules aren’t going away, in fact they have grown and it appears as though they are multiplying once again. The blood rushed down my body as I tried to gather my thoughts to ask the proper questions, while I had the radiologist there to answer them.

Abbigail will be undergoing a biopsy, potentially within the week, to extract samples of the tissue that is consuming her liver…and our fears. There are a few possibilities for these nodules, none of which are favourable at this point. A liver consumed with infection is our best case scenario. A rare post transplant complication could also explain this. The alternative is unfathomable to her team and even more so to us. The idea of it makes me sick and angry and heartbroken.

“How is Abbigail?” you often wonder…she is happy today…oblivious…small and mighty force that outshines her illnesses.

Praying she has more laughter and beautiful days in her future and that the dark clouds that have loomed since that phone call on Christmas Eve, will quickly pass.

Walls, Frustrations & Fears

We are so blessed; so thankful for all of your support, prayers, kind words and generosity!!!

http://www.youcaring.com/medical-fundraiser/relief-for-abbigail-s-brave-journey-through-cancer-oms/211166/update/222890

This part of our journey is proving harder emotionally and financially than I could have ever imagined…it’s only the beginning.

Barely even a week has gone by here in Toronto and already Abbigail has been through so much…too much. Upon admission, her UTI was discovered to be resistant to her current antibiotics, a change was made to her meds but that didn’t change the fact that her OMS was already running rampage in her body and to her brain. She was experiencing coordination and balance challenges as well as ataxia. These symptoms were somewhat alleviated as the days passed on IV antibiotics and Abbigail was able to play with her new friend and fellow transplant buddy! On top of her OMS, Abbigail’s CVL (implanted line for IV) was not working and had to be x-rayed before fate decided she required a new line and it was pulled out during a fall on our routine morning walk through the halls.

On top of these issues, we were told we were being discharged to Ronald McDonald with oral antibiotics until her UTI is dealt with. Sounds great right!?! Not really. This means that Abbigail has just “forfeited” her transplant spot at SickKids, the very place where the one and only phisician who accepted Abbigail’s case practices. For Abbigail this could be life altering. We have not only uprooted and made huge changes to our family’s life, but Abbigail has no more options. This is experimental however it is all we’ve got and Matthew and I pushed through and fought long and hard to find someone who would help us! Now we may lose this opportunity right now. This is a tough thing to swallow after all that she has been through and all that she will face if she does not get this chance.

I am trying to enjoy this time alone with Abbigail, make her happy and do things she loves while we can but we both miss Matthew and the boys and our family and I have a hard time not running scenarios through my mind constantly as we walk past all of the cancer hospitals, research bulletins and buildings downtown.
Today we had special visitors from home; her oncologist and interlink nurse paid us a visit at Ronald McDonald. This visit may have been short but it meant the world to me and Abbigail enjoyed the familiar faces! Thank you ❤️

We have some appointments scheduled this week and hope to hear from her doctor tomorrow regarding surgery, but in the meantime we will keep our blessings in sight and focus on them.

Please help me pray. Please help me beg! Our baby girl needs this and she needs this now.

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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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Growth and strength through pain…

“I have laid my child in a surgeon’s arms, I have slept upright in a hospital chair, I have listened to the beeping of machines and been thankful, I have smiled through the tears and I have found strength where there wasn’t any left. A Mother’s love is the fuel that enables a normal human being to do the impossible.”

Today as I pushed through an other day of deafening silence at work, missing my babies and torturing myself with thoughts of Abbigail facing her fears without me, she was doing just that! Abbigail, accompanied by her daddy and nana, was at CHEO for part one of her MIBG scan* (see below for detailed definition). I’m so proud of how she handled herself, with maturity beyond expectations and immense bravery I’ve never seen in her before. I am quickly becoming aware that my little girl, diagnosed even before becoming a toddler, is no longer that same baby. She gets blood work done without crying or even flinching, she has her port accessed by a large needle with little fuss and no more tears, she can push through a day full of procedures and long treatments and she no longer needs her “mimi” (blankie/soother contraption) attached to her at all times. She is growing up and I am having a difficult time coming to terms with this reality.

While other children her age were learning to talk, count, play and socialize, Abbigail was fighting for her life and relearning most infant motor skills, unable to stand on her own and depending on me for everything, just as an infant would. It wasn’t until recently that she began to step forward developmentally in larger strides and I saw her becoming a kid, outgrowing that “giant baby” persona she has been fighting to grow away from for far too long. This development is just the miracle we had been praying for, it is a small yet triumphant step in the right direction towards OMS remission and I couldn’t be happier that we have been given this ray of hope for our girl, but as her mom, I can’t help but feel a certain aching too. She has needed me for everything, and through everything for so long, that she has naturally become part of my identity and I do not know where to go from here, because she is about to face some of her toughest days thus far, as she prepares for her biggest battle with the monsters that are OMS and cancer. This will be a new battle for me too because I will have to adapt and learn how best to support and help my baby girl…who isn’t a baby anymore. All of the pains and joys have always somehow worked together to propel me through,to be tougher, stronger and to be exactly what my girl needs throughout this journey.

Today Abbigail needed me to get through the day at work so that I could hurry home and she could proudly “communicate” to me about her big brave day at the hospital; where she faced the “big orange door” that hid behind it, Scott, the nuclear medicine man and Colleen, the technician who straps her to the scanner to search for cancer in her not-so-tiny-anymore body. So that is what I did for her today…

“You do not know how strong you are until being strong is your only choice.”

***MIBG (metaiodobenzylguanidine) is a substance that gathers in most neuroblastoma tumors. When MIBG is combined with radioactive iodine (usually I123) and injected into the blood it provides a specific way to identify primary and metastatic (spread) disease and is helpful for locating both bone and soft tissue tumors. Prior to the test, the child will receive an injection (through an I.V. or indwelling catheter) with the I123-MIBG. Scans will be done 24 hours and sometimes again at 48 hours following the injection. Cancerous cells will appear on the scan as bright spots. There are also some normal organs that take up I123-MIBG and appear bright. The patient needs to lie still on a table while the scanner takes picture around the body. An MIBG scan does not hurt, but it may be difficult or uncomfortable for a child to lie still for an hour. Some children may need sedation to be able to relax and lie still for the whole test. Before and after the test, the patient will need to take an oral medication, potassium iodide (SSKI or Lugol’s solution), to protect the thyroid gland from the radioactive iodine that normally would be picked up by that gland.

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