{her story}

7days
Our Innocent Abbigail at 7 Days Old

Our precious little baby girl was barely two years old at diagnosis in February 2012 when we noticed over a period of a few short days that our vibrant and active little 22 month old, who was previously perfectly healthy, hitting all her developmental milestones, went from running with her four year old brother to barely crawling at best. She had been “shaky” for about month before that and we had begun to see strange eye movements that past week too. After a bad fall on Family Day, we found ourselves having her lip stitched in the local ER and the doctors quickly grew concerned with her presented symptoms and advised us to seek further medical help no later than the next morning. The following morning turned out to be the beginning of a chapter in our lives that no parent imagines would happen to them never mind live through. We found ourselves in a whirlwind of waiting rooms, explaining our last few days to over a dozen different physicians and finally ending up being admitted to the Children’s Hospital of Eastern Ontario (CHEO) for three long weeks of tests, procedures, treatments, isolation, diagnoses, questions, fears and tears.

February 23rd 2012 is a day I will never forget.  I remember the nurses on staff, the voices in the halls, the children in the playroom and the sounds of the footsteps of our team of doctors walking into our room.  On that day, our precious little girl Abbigail was diagnosed with cancer. This childhood cancer called Neuroblastoma, which for her, consisted of a solid tumor on her left adrenal gland. All too often this form of cancerous tumor is discovered at a much later stage, resulting in the cancer being metastasized (spread). We consider our Abbigail as being one of the “luckier” ones because her cancer did not spread and her tumor was able to be resected. This stroke of medical luck did not come without its price though. Abbigail was subsequently diagnosed with Neuroblastoma associated Opsoclonus Myoclonus (Ataxia) Syndrome (OMS), which affects only 1 in 10 million people a year worldwide. Although the tumor has been removed successfully, her neurological prognosis is unfavourable (medically speaking) as we now face the reality that she is battling a rare paraneoplastic neurological auto-immune disease, which has no cure. To explain, her brain is an innocent bystander caught in the “cross-fire” between the body’s immune system and the tumor as antibodies meant to attack tumors, suddenly turn and assault the nervous system.  Because infections will often exacerbate her OMS symptoms, it is very important for her to avoid any unnecessary exposure to infections as even cold and flus could reactivate her immune system and cause her to relapse post remission.

Diagnosis was quick, the tumor was removed March 5th 2012 successfully and treatments were started before discharge in mid March 2012. Abbigail began a journey which has seen her grow up way too fast. Her days quickly filled with appointments and procedures, not playgroups or preschool. Words she won’t understand for years, words we as her parents still can’t pronounce, have become a large part of our daily vocabulary; immunosuppressive therapies, chemotherapy and corticosteroids are all a part of her daily life now.

Once the tumor was removed, we traded one set of worries and fears for another. The OMS grew in importance and all of our energy was focused on treating her current symptoms and determining how close to normal she could be.

We never imagined this happening to our own child and we could have never prepared ourselves had we.  The sinking of your heart when a doctor walks into your child’s hospital room introducing himself as the hospital’s oncologist never goes forgotten.  The lump in your throat only gets bigger night after night in that hospital room watching your baby girl try to sleep with all of those monitors and IVs pulling at her tender skin.  I only let myself cry while she was asleep and I was alone on my chairbed.  Those 21 nights were among the longest of my life and although I was joyously pregnant with our third child, I couldn’t remember how many weeks pregnant I was when asked because my mind and heart was clouded with fear, anger, worry and a heavy sadness.  I couldn’t let myself be happy when my precious baby girl was being robbed of her innocence.

Abbigail is a very active little girl, full of energy, who doesn’t let anything stop her.  She loves the outdoors!  Waking up each morning, putting on her rubber boots, pink hat and bush coat on top of her pyjamas at 6am, hoping to charm one of us to take her outside before the sun comes up.  It is not uncommon to come over in the evening to find her riding with her daddy in the yard truck, on the four wheeler, lawn tractor or ski-doo.  She loves animals; our family dog and rabbits have become a big part of her life and she “takes care” of them with great love.  Abbigail is happy playing just about anything with her older brother, she looks up to him and loves him without fail.  There is not a moment that goes by in Abbigail’s day that she does not think of her brothers, always considering them when we are shopping, baking or even cleaning. Although she loves the outdoors, getting dirty in the mud with her brother and dog, and four wheeling with her dad, she is still Mama’s little girl, loving purses, boots, shoes and fashion.  She is often found in the closet, with her purse in hand, trying on all her boots before we get in the van.

As her mother, I put on a brave face despite my heavy heart and Matthew also carries himself bravely despite his fears, but Abbigail, she is a fighter, she is strong and she pushes us through. She kept going despite the fact that she couldn’t walk or run at diagnosis. She got on those ride on cars and toured the hallways from morning until night with the most infectious smile, no nurse could ignore. You would never have known at the time that she was a patient if it weren’t for her IV pole following her down the halls of the oncology floor.

December 2012
December 2012

Remission from Neuroblastoma is typical in children with OMS, but the neurological remission (OMS) is the challenge.  Myoclonus tends to lessen over time, but incoordination often persists. Learning and behavior problems, such as attention-deficit hyperactivity disorder, conduct disorder, and obsessive-compulsive disorder often require treatment with medications specific for those problems. Relapses often occur with each minor illness.  Abbigail will always be susceptible to neurological relapse since infections often exacerbate OMS symptoms.   Neurological symptoms may return during illness, fever, stress, sedatives or anesthesia, tapering or discontinuation of immunotherapy, and after immunizations. Such relapses are common and usually occur more than once. Rarely, many years may elapse between episodes. Relapses will be treated again in much the same as we are treating her presently.

There is a risk she suffers from permanent neurologic problems.  She will live with the scars of her journey forever and face new roads at every milestone she hits.  The needle pokes, tests, procedures and treatments won’t end but her strength continues with her and will see her through it all.  We can’t say for sure when or if she will come to a neurological remission and experience what any other “normal” toddler would, however we can be sure that she will have the same love for life.

Relapses will always consume my fears but staying in the moment and embracing what has been given to us allows us to move on and continue the fight.  There may never be an end to this journey but there will come a day when we are no longer consumed by it and we can go a day without thinking about it.

Abbigail just turned three and in the last 15 months she has bravely endured over 150 needle pokes, 40 IV accesses, 30 Port accesses, countless ultrasounds, X-rays and regular MRIs to ensure the cancer doesn’t return.  She has spent more than 90 days in the hospital, 24+ hours sedated, had 3 surgeries, numerous spinal taps/lumbar punctures and endured 4 ER visits, one on Christmas day.  Abbigail inspires me.  Abbigail has a strong will, she is stubborn and she doesn’t give up!  In my heart, I believe this is why she has come this far and hasn’t let this cancer or this disease beat her or bring her down.  She lives each day to its fullest, not taking anything for granted, appreciating the simple things and always smiling through her tears and fears.  She inspires me to run at life with all that I have got and not look back.  She is a force to be reckoned with and I am proud to say she is my daughter.

We hope that she can continue to inspire others and share her story, spreading awareness of childhood cancer and OMS.

{Mama has no much more to say but it will have to wait until the sun comes up darling…}

3 thoughts on “{her story}

  1. Hi there from an OMS Mummy in the UK,
    It would appear God cut our precious, brave, strong and beautiful daughters from the same cloth and chose to give them (and us!) an extra special purpose in life.
    Know that you will all get through this, Abbigail will be well and you will help and support others due to the strength this journey has made you acquire.
    I hope we can talk soon and maybe, who knows, our little cuties may meet one day.
    Sending strength your way,
    Deborah

    Like

  2. my daughter 18 m0nths old too diagnosied with neuroblastoma in left adernal gland and with severe oms. We are from India where there are limited options….as far as this disease is concern

    Like

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