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.

6 thoughts on “How long can we be ignorant for?

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