Paralyzed in Fear

Where to begin!?! We started the month in the USA searching for hope. We left home, boarded a plane with three spirited children, and went to meet the world leading specialist in OMS. He was supposed to provide s Arita, insight and give us a plan to bring home which would rid us of this monster that has stolen our beautiful girl’s innocence. While in Springfield the kids enjoyed some sight seeing of the town of Lincoln, we visited a small local zoo and we enjoyed some amazing weather. Abbigail’s big procedure was a spinal tap to reveal which cells exactly are being taken over and turning against her immune system. This test also revealed the extent of the brain inflammation as well as some other hugely scientific markers used to determine Abbigails prognosis and to trailer a treatment plan for her. The doctor was amazing and so was his staff. Abbigail enjoyed most of her visit and was the talk of the hospital in her super scrubs!

After a week long stay, we went home an waited for news on the spinal tap. These results were our hope. They were supposed to give us answers and logic and help us save our daughter from the OMS terrors, suffering and pain. We waited all week after returning.

In the meantime, Abbigail had an other routine MRI (every 3 months). We continually check her abdomen and pelvis to ensure her cancer doesn’t return. She has had a half dozen already and they always come back NED! Best three letters any cancer patient could receive! Just so everyone knows what NED means…..NED means no evidence of disease. It means there’s no test or scan sophisticated enough to “pick up” disease. A child can still have disease in the body, but it’s just not seen.20130630-232231.jpg

So we did the scan on the Thursday after returning and the following day was her monthly antibody infusion treatment (IVIG). While I played with my precious baby girl and watched her giggle as she tickled her baby brother’s tummy, the oncologist walks in making our usual small talk to Abbigail. No doors shut this time, just a few words is all it took, much the same as those dreaded first days as a cancer mom. My heart began to race as I listened to her tell me they found a new growing mass in her liver. I want to know what this is and when can it be removed! Slow down I’m told. This mass required a biopsy. Without going into detail, a liver biopsy is dangerous and complicated and in Abbigails case, as most medical things seem to be with her, extra rare and difficult. They tried to get a biopsy last week, Abbigail endured more than you want to know, more than a parent can stomach, and the biopsy wasn’t successful. The urgency to discover what this still growing tumor is exactly, is increasing. We are off to camp trillium tomorrow and as we try to relax, we know the team of doctors, surgeons and radiologists are meeting to discus Abbigail’s case. Her lungs and kidney are obstructing access to the tumour making closed biopsy difficult and risk. There will be an other biopsy scheduled for next week, we will be called away from camp to bring Abbigail in for yet an other CHEO sleep over and days of torturous testing and more anaesthetic and sedation, needles and pain. This second attempt at a biopsy is being done because we still need to know if this is Neuroblastoma again and doing an open biopsy could be potentially life threatening.

There are so many feelings being felt here this week, so much being said and even more not being said. Matthew and I are paralyzed in fear that our daughter is possibly facing a fate we know all too well now. We aren’t naive anymore, we can’t be told it will be ok. We know too much. And so we wait, the agonizing wait for answers. We are paralyzed and unable to move for we fear those words…this time the words are louder and much much more painful.

Oh wait! Dr. Pranzatelli … He wanted to provide us with the hope we so desperately sought, but he was unable. Abbigail does have substantial brain swelling and our fears of OMS have been confirmed. The damage that was caused to her brain is permanent. She has suffered a number of relapses since diagnosis and he feels that they have each caused further permanent damage and that subsequent ones will continue to do so as well. So he laid out a plan for us to review. This plan however didn’t involve much in terms of changing what the OMS is doing to her. He wants to prevent relapses with oral chemotherapy at home weekly for a year. This will hopefully train her immune system to stop turning on the OMS and attacking her brain each time her immune system is activated (cold, virus, fever, extreme fatigue, sedation, etc). He feels that Abbigail may be as close now to being at a baseline, which means this may very well be as good as she gets meaning further treating her will do more harm than good. This kills me! She isn’t Abbigail! I don’t accept this and wont stop fighting!

Next week is huge for Abbigail. We will know if she has relapsed and if the cancer has returned. If it has, we will put one foot in front of the other and keep on fighting like a kid! If we dodged a big one, we return to her OMS treatments as scheduled, as for now we must stop them until this tumour is dealt with.

“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}

F!!! Fears, Frustrations and Failures!

Today we found ourselves driving to CHEO early in the morning once again for our weekly bloodwork and oncology appointment. Although I’ve driven these same 140km over 90 times this last year, the drive never gets easier. I am not talking about the baby crying to be changed or fed, or Abbigail’s relentless screams, outbursts or attacks, those are only small parts of our everyday life which seem far easier to deal with when faced with the one and a half hour feeling of anxiety felt during my drive to the clinic. I’m always finding myself swallowed by the fear of each treatment, it’s side effects and possible reactions, the fear that comes with each blood draw not knowing if bad news looms from the lab and the fears that consume the room of each of our visits with the oncologist. These fears can sometimes paralyze you.

Finally got through traffic this morning and I sit at the stop light only blocks from the hospital and I am so frustrated at the person in front of me for not claiming the intersection therefore forcing me to wait an other cycle before turning left! ARG! Don’t they know what Im dealing with? Go already! Frustrations are common when we look at our life, Matthew and I are burdened with our daughter’s treatment success evaluation. There is no blood test or scan or procedure to tell us how Abbigail is doing, just us! So here I an about to enter the clinic full of fear and frustration. What else could make this day so F!?!

We are casual people, friends with most of the other families in the adjacent rooms, so shutting the door to discuss Abbigail’s latest rash or recent symptoms is not common. Today, the nurse took both my kids to the playroom, sending me to room 22 where I am met by our case manager and primary oncologist, she shuts the door. My heart races and I immediately want to run, grab my babies and go to the toy store! The “feeling” I had this morning waking up is about to find its merit. I was anxious all week for this appointment because I “knew” this was the appointment where she would tell me that the chemo didn’t work. Having done two heavy rounds of chemotherapy already in this protocol which called for only one, I have to wonder if we are grasping at straws now. After we lighten the air with some casual talk, I clench my knuckles and ask if we’ve failed my sweet Abbigail…have we hit a wall?

Abbigail is not improving. Her symptoms continue to persist and even worsen. She is miserable, lethargic at times, irritable at best for most waking hours and absolutely unpredictable when it comes to her rage and attacks. Her walking has recently shown a slight decrease in ability (stomp walking, tiptoeing and unbalanced) seeing her fall a few times a day has me so afraid as it brings me back to those initial days before diagnosis. She is also back to hurting herself and siblings at every chance she gets. I am forced to keep her at my side every minute of every day. At least I get a lot of cuddles and time on the floor with my babies!

…but where do we go from here? With much discussion, debate and evaluation on both my part and our doctor’s, we agree to touch base with Dr. P in the U.S. He has consulted and treated 120 OMS children from all over the globe, he has got to have answers!!! So the nurse opens the door and I see my babies…I’ve just realized that Abbigail’s immune system is still in attack mode and her brain is not safe yet, but there are two of my three beautiful children smiling at me and for a moment I wasn’t worrying. ToysRus, then that long drive home again…

Looking forward to the weekend doing nothing but enjoying the simple pleasures of being a mom to three beautiful children. Crafts, mud puddles, church with friends and some much needed cuddling! I will save the worrying for Monday as I await the call that will hopefully change things for Abbigail and our family.

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Our Firecracker…Explosive but Beautiful, Unique & Radiant.

Oh Abbigail, our Firecracker, you never cease to shine through your struggles!

Today was a gorgeous day outside, the skies were blue, grass was sprouting and the toys aren’t buried in the snow anymore! Abbigail saw the colours in the windows of her toys from what seemed like a lifetime ago. This winter was long and for a child like Abbigail, it was longer! With a compromised immune system the entire winter, 8 rounds of chemo and a spirited personality we didn’t go anywhere for months! Today was a breath of fresh air though and once Abbigail noticed those toys, the boots were on and bush coat buttoned running for the door.

I let her loose! Boy did she run…

Abbigail has always been an active girl, spirited, loving life and every moment offers her a new opportunity to enjoy the simple things. Today reminded me of that girl. I jokingly call her my Firecracker because she is loud, impossible to miss, brightly explosive and UNPREDICTABLE, but she is more than the moods and behaviours OMS has imposed on her. Abbigail is our beautiful, bright, excited and colourful girl who brings out the best in anyone who is lucky to have her in their life.

I get tired sometimes and frustrated with our situation but the truth is I feel blessed when I look into our daughter’s eyes and see the joy she has for life in face of all that she endures.

My Firecracker Abbigail…my precious baby girl!

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Spring! New Beginnings…

At least she found a hat & mitts!
At least she found a hat & mitts!

Although it doesn’t look much like spring outside our door right now, Abbigail felt the urge to run outside onto the deck without her jacket! Did I ever mention what a firecracker she is…really!

Today is the first day of Spring and I for one am looking forward to a fresh new perspective. We all know that before we get to sit outside and soak up some spring sun that we must first sludge through the melting snow, dirty slush and wet socks. Abbigail still has two more chemos to go this month and once that sludge is past we too will enjoy some new beginnings this year.

This fight isn’t over and we understand what we are up against, and we are prepared to hold each other throughout this journey together and if we have to weather an other tough winter we will again look forward to the spring.

Abbigail is very tired the last few weeks and so far we haven’t seen a change in her since we started this chemo two weeks ago. We know it can take time to see results as we are slowly killing off her immune system one cell at a time. So for now we just weather the storm and pray we find some peace in all of this uncertainty.

Speaking of uncertainty, I finally contacted the family of the other OMS case that came through CHEO 9 years ago. I have had their information for five months now and I have put off contacting them out of fear. I know it sounds silly and I have heard it all before, that they are sure to bring me comfort and affirmation, that our daughter will be ok, but fear is stronger than logic. So we will see what comes of this.

Yet an other new beginning?

She Inspires Me

She is my baby girl, my inspiration & hero
She is my baby girl, my inspiration & hero

Today Abbigail received her IVIg transfusion, a few days late due to the critical timing of her chemo.  Her CBC (complete blood counts) dropped significantly from only four days ago when she was here for round two of chemo, this was expected and necessary however was not expected so early I guess.  I will be honest, nothing is really expected with Abbigail’s treatment and prognosis.  We never know what to expect and we rarely know for sure how she will react to any given treatment.  There are not many case studies, and of the ones that we do have to refer to, Abbigail has already been on their protocol and not responded adequately to stop or even slow down treatment.  It is really frustrating as a mother to have to make all of these decisions and provide all of these details to the oncologists, the burden lays on me to make the “right call” for her life.  This almost sounds ridiculous but true it is.  Of course her doctor knows medicine and cancer treatment and all that non-mom stuff, but when it comes to OMS, there are no blood tests or bone marrow that can be aspirated to see if the disease remains active or not.  Today was a an other reminder of how frustrating this disease is and how much it is hurting us all but Abbigail reminded me that it will not take us down.  We lend ourselves tears and offer our shoulders to one an other when needed, but we also remind each other that we have more in our loving family than cancer, treatments, hospitals and OMS…we have Abbigail!  We have William and Madden and each other.

Fighting
Fighting

This bright star has shown me what it is to love, to fight and to never give up…I will forever hold her high and remind her how inspirational she was and is…always!

Abbigail’s Story from the Beginning…

I would like to start from the beginning for those new followers and anyone who doesn’t fancy Facebook and who may not be up to date on Abbigail’s prognosis and progress.

From the beginning of her journey & fight…

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Our Innocent Abbigail at 7 Days Old

One year ago surgeons successfully removed Abbigail’s cancerous tumor. Some might think that once the cancer was gone that she would return to the life of an average toddler, which was not the case. She endured 12 months of chemotherapies, transfusions, treatments, immune altering drugs and countless procedures that brought heavy tears and frightful moments to her not-so-average life of an oncology toddler. That moment when the surgeon walked down the long narrow hallway to take me to her, in our minds, she became cancer free. This did not mean that the battle was over, this had meant we dealt with the obvious and that the true fight begins. Abbigail endures regular scans to ensure that her cancer has not hidden itself and that she does not relapse. Neuroblastoma does have a relevant relapse rate, hence the numerous scans. We are however optimistic after her 1 year scan last week, which came back clean as a whistle, that she continues to be cancer-free and that she will continue to beat the odds.For those of you unfamiliar with much of Abbigail’s diagnosis, she is indeed a case for the books. She is 1 in ten million a year that are diagnosed with this rare diseased indirectly caused by her cancer. Opsoclonus Myoclonus Ataxia Syndrome (OMS) is life altering and can be very debilitating at times, especially for a toddler, and it currently has no cure. When Abbigail first was diagnosed, she couldn’t stand on her own, she couldn’t walk, nor barely crawl and even sitting up alone was a task. This is not close to the average for a 22 month old, given that she was running, climbing, self feeding, and keeping up quite fine with her 4 year old brother just weeks prior. Abbigail went from an above average 22 month old to barely being comparable to a 9 month old. She began quickly losing motor functions, both fine and gross, shaking tremulously, unable to keep eye focus (darting eyes), confusing prior learned sounds/words and being quite irritable and inconsolable at times.

Once diagnosed and a treatment plan was researched and decided on, we put one foot in front of the other and pushed through the next day. Abbigail began a year of more than I ever expected. I did my research, I read more studies than I did books in my 30 years, I may have gone through more literature in the last 52 weeks than our oncologist has when it comes to OMS. I was prepared…so I thought. We went into her first day of treatment with the understanding that in 12 months she would be back to health with perhaps a few minor setbacks that would easily be overcome and some mild side effects from her treatments. Watching the other sweet kids walk in and out of the oncology playroom with numerous cancer treatments hanging from their IV poles, hearing the other moms talk about how this was their 15th trip to the ward this year and seeing the size of some of the children’s charts on the shelf, we had it easy we thought. Now, 52 weeks later, 3 treatment plans unsuccessful, we too have had to push a heavy IV pole with three pumps attached to it, and I laid awake in my daughter’s hospital crib crouched at 9 months pregnant just to hold her while she endured yet an other sleepless night attached to too many wires and her charts too are so large they require numerous binders on the shelf.

In March 2012 Abbigail started her first treatment protocol, which consisted of high dose steroids orally at home on a daily basis, in addition to the other oral medication to control the treatment side effects and she received intravenous chemotherapy and intravenous immunoglobulin (IVIg) transfusions every 28 days. If that wasn’t enough for her little body to endure, she underwent weekly blood tests and office visits with her oncologists at CHEO. Abbigail’s acute symptoms, the obvious physical ones of walking and standing improved significantly, however never returned to anything near that of a 12 month old just yet. Then throughout the summer months we began to see her symptoms return and she began once again to deteriorate. She began shaking again regularly, her eyes would dart numerous times in a day and her awkward and uncoordinated balance became more and more obvious as the weeks went by.

It was decided by her team of oncologists that this first treatment plan didn’t succeed, and that we would begin the search for a new treatment plan, which came recommended by a doctor in the United States. This next plan consisted of much of the same however rather than daily immunosuppressive steroids we went to a higher dose pulse therapy in addition to the IVIg and side effect medications. Come November 2012, although we saw her walking more and shaking less, her gross motor skills took a back seat to her now cognitive symptoms. We experienced some of the darkest and toughest days yet. We were losing that bright bubbly baby girl to such frightening and dark symptoms. It was and is so hard to watch our once joyful little girl slowly slip away and viciously lose her sparkle.

Now, pushing the lump in my throat further down, as we run through an other treatment plan, we again, in part with our oncology team, consulted with the same doctor from the United States who is as experienced as you can be with OMS, and we came up with an other plan and it started immediately. This plan consisted of an unapproved course of treatment for her diagnosis however one that proved promising in the little research there is out in the world for OMS. Hope was restored and although the battle was nowhere near over, we had a plan again. Abbigail endured four more weekly rounds of a different targeted chemotherapy, throughout the month of December; her last treatment was January 3rd! She received her treatment of IVIg transfusion on January 18th and February 15th as she had been for the last 12 months as well as continued to receive steroid treatment at home.

That brings us to the present.

Abbigail saw a number of weeks in December and January where her physical symptoms and motor skills appeared near average for a 2 year old (she is almost 3) and her rage, behavior, mood and overall irritability had improved enough for us to breath again. Her sleep disturbances continued however we felt that was bearable. Come February, we noticed that each day Abbigail got increasingly worse. She now requires a supplement to sleep, otherwise I am up with her a lot, sometimes up to 8 times a night, which is only exacerbating her OMS symptoms. She spends many hours a day screaming or fighting herself in a fit of rage, sometimes inflicting pain on herself or her siblings and us. Her walking is still leaps of improvement as we look back on one year ago, however she tends to be uncoordinated more and more and her ataxia (shakiness) has gotten more evident over the last month; more often when she is tired, which feels like all the time now.  I know these symptoms all too well and I recognize them, their patterns and how her body and immune system tend to react to them on a daily basis and that is why I have no doubt in my mind, my heart and my gut when I say that she has yet to induce a neurological remission.  This is why we decided to start an other course of treatment.  Her oncologist agrees, that she has not reached her “potential” yet and that we can not take any chances of letting her immune system go on the attack again, risking further brain damage and life long sequelae.  So for the month of March, Abbigail will endure yet an other course of chemotherapy, every Friday until Easter.

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2013 March 08 {Day 380}

Abbigail may exhibit symptoms that would make most strangers sneer or stare and she might not be up cognitively with her soon to be classmates, but she is still our little girl, she still loves playing dollies and dressup, and she adores her big brother.  I could go on and on about how she is, how I wished she was and how she steals my heart each and every smile regardless, but I will save some fun for an other day and many more posts.

I realize this was long, but now that you are all up to date on her prognosis and progress with this brave journey, I invite you to continue to follow her journey through my eyes here and to like her Facebook page http://www.facebook.com/KissesForAbbigail for fun photos, quick updates and interactions.

Thank you for reading and sharing.