“There will be a day”

We began this journey 15 months ago. Full of questions, fears and sadness, we took it one day at a time, one procedure and one treatment at a time, looking forward to the end of the 12 month long protocol {treatment plan} when we could go back to being a family without cancer and hospitals. If you do the math, we are three months past that date and here we are looking into our sleeping daughter’s room as she tries to dream of princesses and ponies, painfully discussing the next steps to bring our daughter back to health. This journey didn’t get easier, the days don’t go by without pain and sadness, and my sweet little baby girl is getting tired. All those months ago, Abbigail was just a little baby, not even two years old and now we countdown the few days left before she turns three and we are no closer to helping our little girl than we were 15 months ago.

I too am tired and looking back on all of the pain I let them put her through, all of the procedures, cuts and needles that were necessary and all of the poison pumped through her tender body makes me ache more than any mother could imagine, more than anyone will ever know unless they walked in my shoes. Tonight, I can’t do it. I won’t recount her journey, I won’t revisit those endless days and nights I watched her lay limp and lifeless as they put her through hell time and time again. I hope my sadness doesn’t cloud my writing, please bare with me.

Abbigail completed her 2nd course of chemotherapy on March 28th; weekly treatments of 6 hours for 4 weeks, just in time for Easter. We were hopeful. She was tired over Easter weekend but that was expected as she was also undergoing home treatment {pulses of steroids} that same weekend. The following week was so encouraging, uplifting and we thought for a few days that we might have finally found the perfect cocktail of poisonous drugs to help our daughter be”normal.” You see with OMS, you undergo many treatments for many years {average of 7 years of intense and active treatment} before a baseline or remission is reached. Remissions for OMS children are short lived, with relapses lurking at every corner, with every cold, flu or virus floating in the air of schools, birthday parties and public places. We now know all of this, we now know that the 12 month plan we were given 15 months ago was just an unrealistic “hope” our oncologist at the time felt we needed to hear to make it to the next day, the next hour. So here we are now, a week or two after our last chemo and we see improvements, not great leaps or huge successes, but little improvements that give us hope. She doesn’t scream all day, she sleeps longer, she didn’t fight with herself as much, her brother’s weren’t being attacked, and she wasn’t as wobbly or clumsy as she had been in the past months. Abbigail really gave herself and us a few good days where we thought she was beating the odds. Then the painful reality hit again as I watched my baby girl flip like a switch in the matter of days. This time was different than all the past “relapses” {I use the term relapses lightly as she has yet to reach a neurological remission, so she technically doesn’t relapse}, this time Abbigail was showing all the signs and symptoms of her initial presentation before diagnosis. She began stumbling a bit more than usual, stomping as she ran and fumbling into doors, walls, tables and toys as if she were unbalanced again. Her moods, behaviours and cognitive abilities began to decline; screaming almost all day, easily getting irritated and quickly getting frustrated, her words she used last week were not mumbles and sometimes lump sounds making no sense. Abbigail isn’t always showing acute OMS symptoms, she makes short visits to family and friends, can manage an outing to the grocery store with minor disturbances {similar to that of a spoiled toddler and an incompetent mother} but without notice and without prejudice, an attack occurs and she smacks a fellow playmate, pushes a child walking in the store or bites herself until she breaks the skin as she screams in a fit of rage. Abbigail now, more than ever before in this journey, requires supervision and management 24 hours a day. As her mama I call it “24 hours of undivided attention and unconditional love.” In the last few days, I’ve experienced many moments that have brought me back to those dreadful days before she was diagnosed, those days when I feared the worst and when I see her eyes dancing again, I am paralyzed in fear as I remember the doctor walking in to tell me my baby had cancer. Our bubbly, adventurous and playful daughter is now lethargic, exhausted, sad, depressed-like and most days she is living a very low quality life more hours than not. I have slowly watched my innocent girl be robbed of her days as a toddler, and now we are going to have to hold her hand and explain to her that the fight isn’t over, that she must endure more chemo, more needles, pokes, sedations, tests, procedures and treatments. Treatments that would be lethal to some adults, treatments that compromise her growing body and alter her immune system not yet matured in ways that will affect her for the rest of her life. So Abbigail’s last 15 months of treatments didn’t work. The chemotherapy we had such high hopes for only weeks ago has let us down. We are back at square one, with no more treatment options left in Canada.

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I received the call this week, from Abbigail’s oncologist {whom we absolutely trust and value} and case manager, that she believes in her heart that we have hit a wall here. We have tried all of the treatment options offered in Canada and they have all failed our daughter. This journey will now take us all the way to Springfield, Illinois, USA to meet the infamous Dr. Pranzatelli, the founder of the National Pediatric Myoclonus Centre (NPMC). This is the only centre of its kind in the entire world and he is the only doctor who has treated and consulted on 120 patients worldwide in his carrier. An oncologist could only dream of ever hearing or even seeing an OMS patient, let alone treating one in their carrier and he has helped hundreds reach their baseline functions after all of the damage OMS caused their brains, bodies and lives. We are hopeful, excited and anxious…we are fearful, saddened and anxious. This life, this world we live in now is full of it’s ups and downs and we take them all with the knowledge now that each moment, regardless of their nature, are precious and a gift. After a rough morning, holding my daughter tightly so she doesn’t hurt herself, or cuddling for hours because she can’t muster the energy to simply play, I see tiny moments of joy and happiness in her eyes and I capture them in my mind {and camera lol} and focus on them when the next wave of symptoms comes roaring in our lives.

With all this said, the next chapter in healing our daughter takes us to Illinois. We have no idea what is there, we have no clue what to expect and we have very little details as to what sort of procedures and treatments are in store for Abbigail, but we are going to take it one day at a time as our life now implies, we are going to fight together as a family, and we will continue to hope that there will be a day with no more tears, no more pain and no more fears.

July 23 2011 {always by each other's side}
July 23 2011
{always by each other’s side}

7 thoughts on ““There will be a day”

  1. Hi, Paula Ernst’s fb posts led me to you. I’m so sorry for this very hard journey you are on. I can only imagine how exhausting and frightening it is. I will pray for Abigail and all of you. And I’m asking the Lord to bring you to my mind often so that I will pray often throughout the days.

    Like

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