Has it really been that long!?

It’s hard to believe that it has been over six months since my last update.  Abbigail has fought so hard, to come so far, over the last four years, but she has made most of her leaps and bounds these past few months alone. 

  
Just over six months ago Abbigail was once again facing huge life threatning battles that no child should have to. She was admitted to the hospital for a septic blood infection that was, without surprise, rare and not easily treated without strong antibacterial infusions. She spent three long weeks in hospital, mustering the strength to push out the monsters threatning her body and ultimately her life. Once the infections were under control, we were back to discussing the multiple and progressive nodules forming in her liver. Were they an anomaly or more cancer? No one could be sure because nothing with Abbigail has been text book up until that point and everything documented to date has not been able to discount further neoplasm (cancer).  After numerous challenging and cautious fine-needle biopsies, we faced the dreaded consent form for an open liver biopsy and possible resection. Slicing and dicing a liver is never simple or clear cut and isn’t without immense risk for morbidity and even mortality. An other human being, possibly a father himself, had to ask us specifically if we understood that once we left our baby girl in his care, on that cold table, that she possibly may not wake up or that if she did, she would not be the same. Is this even part of real life? Often I find myself wondering these questions. That morning, I signed my name on the dotted line, giving consent to surgeons to open our daughter’s entire thoracic area and examine it for further cancer or at the very least remove a portion for lab analysis. Then I waited. I waited and stared at her empty bed on the fourth floor of CHEO, a place we’ve considered home for far too many years and I waited for the nurse to say she was out of surgery. When the desk clerk’s phone rang that time, I knew it was about Abbigail. I dashed to the elevator, flush, nauseated and petrified. What would he say as he removes his mask and sterile cap? What happened these last few hours in that cold sterile room? Where is my girl? Before he could speak I layed my eyes on her ragged body in recovery and sighed in relief. I sat at her bedside until her intubation tube was removed and she was awake enough to know I was there. The surgeon who has cut into our daughter more times than I can count, along with the radiologist who has invested numerous days and hours analyzing her multiple liver images and studying her nodules, smiled as they both confirmed that surgery was a success. They also confirmed the lab had enough liver sample to examine and diagnose these nodules without having to fully resect an entire lobe of her liver.  After a long few days of epidural pain management, drug reactions and rehabilitation, we were finally transferred from the surgical and rehab unit back to our “home” unit on the oncology ward. Ten long days later, we received  exhilarating  news that it was not cancer but that further lab testing was required from SickKids hospital in Toronto before we could know exactly what the lesions are. Abbigail was feeling better, not eating much by mouth and still recouperating  from an extensive thoracic surgery, but we still could not be discharged. Now, almost a month in hospital, barely home a day or two from our Florida trip, realizing we are never free from this world as we face our worst fears all over again.  After much debate and review from many specialists, near and far, Abbigail was diagnosed with a rare disposition of extramedullary hematopoiesis. Abbigail received large doses of chemotherapy last year, and the theory is that her body has not been able to keep up with blood production post transplant and her bone marrow now is producing blood cells outside of her marrow (i.e. in her organs). This new diagnosis only added to her complicated medical care. Two incurable rare diseases battling inside of our five year old little girl’s body, that has yet to recover from years of cancer treatment and a life altering stem cell transplant that ultimately saved her life last fall. Her scars are gigantic – physical and emotional, but we finally went home after a long month of close calls in hospital. Despite being “out of the woods,” Abbigail now faced new hurdles and we didn’t know then just how big they truly were. 

   
 Abbigail had more than a hundred nodules confined to her liver. Continuously monitoring their activity with imaging and although they had not stopped multiplying, they had yet to spread to other organs. Also closely monitoring her liver health with regular blood work to ensure that these lesions did not affect the basic functions she desperately needed. Abbigail was tired, her entire body covered in cuts, bruises, catheters and scars. Smiling for photos with an NG tube still taped to her sensitive cheek, she didn’t let any of this stop her this summer. We spent every day possible, that we weren’t at CHEO, at our camp. Roasting marshmallows, wading in the waters, making forts and sand castles while chasing the boys. She even made a few new friends and won the hearts of every single other camper in the park. There wasn’t anyone who didn’t know who Abbigail was after her first week there. Memories were cemented in our hearts and despite the hurdles, the pain and sacrifices that don’t cease, we were blessed with an entire summer without a single night in hospital! 

   
   
Once camp season came to a close and the leaves began to fall, Abbigail started school! Something I never allowed myself to think of again after last year because we were so focused on her treatment and survival. She has been surprising us and everyone else with her abilities and potential. She is speaking so many more words. She can now even understand French a bit. She has learned routine, made friends and been able to detach herself from me. Her learning is greatly affected due to the extensive damage to her brain from the OMS as well as the four years of dozens of repeated chemotherapies, but that does not stop her from always trying.  She is part of a regular classroom with all of the support she requires to thrive. We are so proud! 

   
  
 Our spitfire never lets life settle down though, just as she adapted to the new routine, stopped crying when I dropped her off and began to have less OMS episodes at school we were facing difficult decisions regarding her overall health. Abbigail had started losing weight very quickly and without reason other than her appetite and eating habits. Post liver surgery, they inserted an NG tube for her nutrition because when a child has such a huge abdominal surgery, they are not able eat for days due to their “guts” being stunned and paralyzed, meaning unable to digest. So after a week of not eating, having huge stomach pain inside and out, her appetite that was finally returning post transplant had now taken a nose dive. Since June, she continued to lose weight and struggle with her appetite. In September, she had lost a few pounds and it was evident now in her face and it wasn’t long before doctors and specialists were considering a more permanent feeding solution. Abbigail was 50lbs in the summer and although it was an unhealthy weight for her height, we knew it was temporary and that it was caused by steroids. Presently Abbigail is holding at 35 pounds. 

  
That 15 pound lose in a short period of 3 months had us remove the NG tube (in her nose) and have a surgically implanted g-tube directly into her stomach. After almost 5 months without a night in hospital, Abbigail and I were cuddling under nurse and doctor supervision, in the very familiar and oddly enough, comforting walls of her second home once again. December 7th she received her new “tubie” and again our trusted surgeon was successful in cutting through the layers of scar tissue in her abdomen to have the new device inserted. Only a few days to recover from yet again an other stunned tummy surgery and we were home to begin the holiday season with new hope for recovery from yet an other hurdle in the journey. 

   
 This Christmas should have been different though. For so many reasons. We never imagined still being in such a fight for our daughter and we never imagined experiencing the loss that we have. Being a part of a world where kids have cancer and it is normal, becomes scarier the longer you are in it. You form friendships, extend your family and fall in love with the strongest, bravest and most beautiful young souls that walk the earth. When things are good, in cancer world relative terms of course, we laugh, have private little room parties and make today count because we know how fragile it is. We often fall prey to thoughts of tomorrow and we allow ourselves to believe that it will all be ok one day…that is, until it’s not. 

  

   

 November 18th was not ok. Abbigail’s closest friend earned her angel wings far too early. Phoebe left this earth, forever 5 years old. She left her pain, suffering and sadness behind with her grieving mama, daddy, big sister and many family and friends. For Phoebe’s family, tomorrow is now too hard to face because today is already so painful without her here. My heart has been aching since that day. Abbigail  understands Phoebe is gone, that we can no longer visit or play with her and that we can only see her in our photos and videos but she often asks “but mama where Phoebe?” It breaks my heart on so many levels. Losing Phoebe was harder than I could have ever imagined it would be. Christmas this year was bittersweet. We weren’t in intense treatment, there were no life-threatening emergencies or hospital sleep overs and for that we were blessed and grateful. But we also felt a huge sense of lose and guilt. Every twinkling light had new meaning, each gift unwrapped was a reminder that not everyone was so lucky. The kids were spoiled and had “the best Christmas ever” visiting family and making memories but I couldn’t help but carry the guilt with me. My friends also got to spend the holidays out of hospital for the time in five years too but for very different reasons. Phoebe’s passing hurt. It was painful. Unfair. Phoebe lives on though and will forever be our Christmas angel, reminding us to never lose faith and hope, just as she never did! As the years pass, treatments continue and Abbigail grows up, she will forever have Phoebe in her heart, watching over her…that I believe.   
Today, Abbigail continues to receive immunosuppressive therapies both in hospital and at home. She goes to CHEO for infusion treatments every two weeks and continues with her daily oral treatments at home. Her medication list, for treatment and for symptoms caused by the treatments, is still very long and disheartening but in a world where there is very little known about her disease we do not have many options left. We are currently trying to slowly taper her off of the very aggressive steroid treatments she’s been on for four years in hopes that we don’t create the perfect storm in her body for an OMS relapse. If she regresses once the steroids exit her system completely we will have hit a wall in treatment options. 

  

    

For those new to Abbigails journey or for anyone who is still confused about OMS, it is a rare (1 in 10 million) disease that presently is without a cure. Children who are doing well with OMS today are said to be in “neurological remission” however are prey to relapse or regression at any time and it is believed by the few specialists in the world, that these children will suffer several of these relapses in a lifetime. A regression could present itself as slight shakiness and imbalance, darting eyes, uncontrollable and aggravated behaviour, insomnia, muscle jerks and trunk or full body ataxia. These small symptoms can be triggered by any immune response; which are fatigue, stress (physical and mental), certain medications and sedatives or the more obvious, infections. Once the immune system is triggered, Abbigail’s brain is caught in a crossfire. Simply put, OMS is an immune disease characterized by her immune system being programmed to attack particular cells which were present in her cancerous tumours but that are also present in her brain. This means that part of her brain, the part that controls movement, stability, speech, some learning and development as well as behaviour and sleep, have the identical cells that her cancer has. When Abbigail’s immune system is activated, it begins to fight and destroy the cells in her brain, causing multiple cells to misfire and often creating the perfect environment for brain damage and that is when we begin to see the symptoms described above. If the damage caused is extensive enough, the regression in Abbigail’s abilities and functions could quickly become a relapse in the disease, requiring more than patience and antiviral or antibiotic treatment. During a relapse, OMS must be stopped as quickly as possible to minimize the permanent brain damage that is occurring. At diagnoses, the peak of her illness, and when she has relapsed in the past, She has completely lost the ability to speak, slurring her sounds, has also lost control of her trunk, losing the ability to even sit up on her own, she’s even lost her ability to walk and crawl during relapses and self feeding was impossible. This is when we would begin more chemotherapy, new experimental drugs and stronger immunosuppressive treatments to stop her immune system from functioning, putting her back in that vulnerable and dangerous state she knows all too well. 

So this is where Abbigail finds herself in treatment today. Hopeful we can wean her off of the treatments that are affecting her growth and long term bone health but also fearful to remove the drugs that have kept her brain safe from relapses over the last two years. She has done each and every treatment protocol and trial available to children in Canada and the US to date and is still unable to wean from the destructive drugs keeping her immune system at bae. 

I can’t thank you all enough for your support and prayers throughout this journey and for checking in over the last few months during my online absense. Abbigail and our family is continuously blessed by you all! Thank you!

February 23rd…

On the floor, covered in sanitized mats for her own protection from both germs and her unstable stature, nail painting as we pass the hours until her MRI. This will be her second MRI in two days. It’s been 2 full days of strictly IV fluids, no food or drinking, since February 21st at midnight. As she gazes at her pretty pink nail polish, I can’t stop thinking about what today will bring. Yesterday was my most difficult day as a mother; I laid my limp child in the arms of a stranger and watched them tape her eyes shut and connect her to a breathing machine, before entering her into the MRI machine. A parent’s worst fears were began at that moment and little did we know, that we were going to be the main characters of this awful nightmare. That was my worst day as a mother. Today will be different. How could today possibly be any worse I asked myself…

That was three years ago. To the day. February 23rd 2012.

I can’t remember much these days, my brain is constantly on overdrive, but I can recall exactly what I was doing, at this very moment, three years ago.

I remember what the doctors were saying behind the curtains, the fear in my husband’s silence, the tears rolling down our baby’s face as we held her down for the tenth time in two days, my heartache as they poked and prodded her tiny frail and shivering body over and over again. I remember it all. I can still hear my little boy’s voice over the phone, wondering why, for the first time ever in his 4 years, that his mama and dada had to abruptly leave him without any idea of when we would return with his baby sister. I remember not wanting to take too many pictures of this ugly new world because I didn’t want to have to remember any of it. I will never forget the 4 doctors who walked into our isolation room, shut the door behind them and lowered the volume of the Young and the Restless I had on in the background. It was 4:56pm. Abbigail was finally able to eat something after two long days of sedated tests. These doctors’ faces no longer appeared puzzled. What was once a mystery to almost every discipline in the hospital, was no longer. They now knew…what had been haunting our dear girl’s body all this time, had been found that morning. Although in complete shock, I finally was able to be honest with myself, because in my heart, I already knew. So here I was, alone with Abbigail, teaching her how to hold her fork all over again, and these 4 doctors, no longer puzzled as they smiled at Abbigail, and I noticed that yet again we have a new face in our room, whom we haven’t met yet. Neurology was no longer in the room, neither was genetics. This new gentle voice introduced himself, tagged with his profession, and that is all I needed to hear for our world to change forever. After days of sedation, hours of uncomfortable tests, over a dozen IVs and recounting the last months and days of our lives to every doctor and student in the building, four words is all it took. “I am an oncologist.” I have often wondered how these doctors could bring such terrible news to families day after day. “We found a mass on Abbigail’s kidney that has taken over her left adrenal gland,” he explained, “she has cancer and we need to remove it,” as they handed me the box of kleenex, and I remember Abbigail’s precious little baby face staring up at my tears, not even two years old yet, surely wondering what was mommy upset about. “She has cancer.” The entire time they were talking, explaining and trying to reassure me, all I could hear was “Cancer, she has cancer.” I must have blacked out for a few minutes, because the next thing I remember thinking to myself was how will I tell Matthew. He was on his way back to the hospital with our 4 year old to spend the weekend together. When he walked into our room, I didn’t have to say anything. The cold air, my silence and the way I held and looked into Abby’s eyes, he knew…

That was the fateful day; the culmination of all those weeks and months of wondering and worrying what was wrong with Abbigail. Nothing was the same ever again. Not our home, our family, our children, our marriage, even our hopes and dreams changed because from that day forward we could never forget…the life we lived,up until that day, changed drastically, with a few little words. It is often too painful to dream now, to hope and to plan for the future. Three years ago our world came crashing down on us. Matthew was sleeping in his car while I cried on a chair next to our tangled daughter in a cold barred crib. Three years ago we had to erase things off of our family calendar and replace them with countless hospital stays, chemo appointments and new therapy sessions. Although we lost so much that day, I can’t ignore the fact that we also gained so much too. Perspective. Strength. Understanding and compassion. New friends we can call family…and a closeness to one an other we never had before. Without all that we wouldn’t have been able to survive these last three years. Without all that we won’t survive the next three either. Cancer can be cured and Cancer may never come back for some but Cancer never leaves without a trace. It will always be part of who we are and how we live…sometimes bringing good and often times shedding light on the bad, but that is Cancer and we have adjusted.

This is going to hurt.

Three years ago we were told that we should have high hopes for Abbigail’s recovery and that with surgery to remove the tumour, and 6 months of chemo and an other 6 months of immunosuppressant therapy, that we should begin to see our little girl out of the hospital and off all of her medications and therapies. Three years ago we were naive and had the strength to hold tightly onto to hope.

Today is so different.

Today is three years after that day. Today we struggle to see any light at the “end.” Today we find it difficult to cope with the next hour, let alone the next treatment. Abbigail is still in recovery post transplant, she is systemically immunocompromised and she can’t attend school on so many levels. Today Abbigail is two months shy of being five years old and to an outsider, she appears to be barely two. Three years later, we still call CHEO home and spend more time there than anywhere else. Sadly, today, Abbigail is no closer to being that fearless and healthy sweet girl we saw giggling and running with her big brother so long ago. You could easily say that she is back to where she was three years ago, with the exception now that she has been through far too much over the years and is exhausted and has exhausted so many treatment options that were once full of hope. Today that “hope” that existed back then, even a after the devastating word “Cancer,” has slowly faded. Quite frankly, today Abbigail is in a worse position medically, developmentally and emotionally than she has ever been in her short life.

It isn’t news to most; that we are still devastated that her last chance at controlling her OMS, with the dangerous and experimental stem cell transplant she underwent last fall, may not have worked as we hoped. We are still struggling to manage her symptoms and relapses of OMS with each illness that comes her way. Over the last few days we’ve watched her limp, fall and completely lose control of her motor function in her legs. It is likely caused by the UTI she got again last week, which activated her immune response and allowed the OMS to take over again. Her sleeplessness and exhaustion do not help with her behaviour and cognitive functions, she’s in constant battle, with decreasing moments of contentment with each day that passes. OMS is still very much present, active and destroying our beautiful girl’s livelihood. Today, much like three years ago, we are consumed with fear. Today, the lack of knowledge and information, much as it has been during this entire journey, is paralyzing most days. We’ve searched long and hard for information regarding OMS, it’s prognosis and treatment and we’ve connected and had Abbigail surgically and physically assessed by one of the only world leaders in this disease. Yet, here we are, three years later, no closer to remission and with far less options than we had before. Much the same has been for her Cancer. Almost three years after they resected her tumour completely and told us how rare it is, for a child with OMS and Abbigail’s presentation, to ever relapse with more Cancer of this kind, here we find ourselves.

Today we fear a third possible recurrence.

You may recall that since Christmas Eve, we have been trying to ignore the 9 new lesions within Abbigail’s liver. Since then, she has been biopsied, in two different locations, having resected 5 separate core samples of her lesions. She’s had an MRI and 2 ultrasounds, all which have brought up our worst fears all over again. The recent biopsies have not provided any definitive answers to date. All we have been told is that they are “unsuitable for pathological diagnosis” but that all of the cultures of the samples studied returned no bacterial, fungal or viral growth. Again, we are faced with the uncertainty and fears associated with that unknown factor.

Today, three years after hearing our daughter has cancer, we can’t help but fear hearing those words again. Abbigail is about to undergo one more scan, to see if these liver nodules have changed and what the next steps are.

Three years…our baby girl is almost five! I’m so proud! Please continue to pray for our girl and the far too many other little children and share this so that everyone knows KIDS GET CANCER TOO & CAN’T FIGHT ALONE!

That moment…

I packed two lunches this morning, zipped up two school bags and excitedly but emotionally photographed you and your big brother under the tree, as I did with him each year. I saw you proudly standing at the end of the driveway with your big brother; waiting for the bus, with a pink lunchbox in hand and a smile so radiant it lit the early morning dew. I anxiously stood outside your classroom, proud you were sitting quietly, attentively and participating as every other child was, all the while still partly saddened you didn’t call out for me. I drove away in tears as I noticed it had been hours I was stationed at your classroom door, and I thought of the years that past too quickly and how far you have come, and how hard you have fought to get to this day…this very moment. The day was long. I stood waiting for the bus to bring my babies home for an hour outside in the rain and wind…but I didn’t feel cold and I wasn’t wet. Finally the bus pulled up to our driveway, after what I felt was at the slowest of speeds possible, and I saw your pride and your excitement as you ran up the driveway; ponytails flailing in the wind and boots splashing in each puddle. You were happy. You were a typical 4 year old who was excited to be a part of something and accepted. Once the excitement settled slightly and you both sat down for dinner, it seemed as though your father and I couldn’t keep up to the stories both you and your brother had to share about your first day of school. You competed for airtime, both rambling about your classmates, rhyming off names and games played at recess. At that moment, we were so happy, so proud and nothing could have brought us down.

Then I woke up. On the couch, 11 at night and the TV playing some infomercial about a new anti-aging remedy. Then I realized we weren’t going to feel those joys, see those smiles or hear those stories. I wasn’t going to be that mom in my dreams.

Instead, I remembered I had to retake your temperature because you were warm and started to show signs of a fever at 9pm when I administered your nightly injection as you slept. Then there I was, trying so desperately to cling on, capture and remember each facial expression, feeling and joy that I had in that dream as I drove to the ER in the middle of the cold, damp night. That dream has been put down, left to the side and may begin to fade now as it comes to a screeching halt, crashing into our reality again. The reality that a fever tonight means that you will be examined and poked several times and for several hours before laying your head to rest as a patient on the oncology ward, because you are neutropenic; you have 0.0 fighter cells left in your immune system, opening the gates wide for bacteria, viruses and fungus to settle in your blood and take every dream you, me or your dad ever could have imagined for you. The fight didn’t end yet.

It is now almost 24 hrs after I awoke from that dream. I am sitting at your bedside, in an isolation room at the end of a brightly decorated but oh so dark hallway in the hospital, watching you lay lethargically, bruised from the overnight battle between neutropenic veins and the need for urgent antibiotics to avoid septic shock, and I see a glimpse of that girl, all dressed in pink with her princess school gear. A glimpse is all it is though, because now you are awake, unable to sit up because you are too week from the poisonous chemos given to save your life, unbalanced, uncoordinated, ataxic rendering you unable to walk, just as the first day we found ourselves in this room. You scream for “dew” which I know means juice and I am reminded that you won’t be sharing school yard stories tonight at the table because you lost your speech 2.5 years ago, before getting a chance to even learn your ABCs and we are in the hospital, far from family and even further from that dream than we were before I fell asleep.

Abbigail will be spending the next few days in the hospital, hooked up and trapped in to protect her fragile body from the many dangers that are outside these walls. Our flight is still booked for Monday, with the faith that our miracle is still within our reach. So now I lay holding my firecracker, praying that her body will begin to produce her own fighter cells and that she may become strong enough to board that plane to Toronto and begin the journey towards healing.

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Battles, struggles, pain & fears larger than her but not her life!

The battles she is fighting, the struggles she is facing, the pain she feels and the fears she is overcoming never get in the way of her sharing at least one of her infectious smiles!

Yesterday Abbigail flashed a huge, bright and heart-melting smile to Mama as we left CHEO — Children’s Hospital of Eastern Ontario. Her day was quite long, with several clinic appointments and procedures she rather not have to endure time and time again but despite her irritability, exhaustion, rage attacks and overwhelming fears she made it through an other day along her unique journey.

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Childhood cancer isn’t just chemo, hair loss and medications. The obvious fight is only half the battle. Our children are forced to learn early to accept their reality which includes more than most adults ever experience in an entire lifetime. Lately I’ve been reflecting on more than ever before, maybe because we have more time to sit and be rather than run from procedure to treatment every couple days. My heart breaks a little more for these kids as I think of everything Abbigail has faced already in her short life, all that she continues to battle and all that she still has to go up against.

We are looking forward to a weekend of family visiting. Please keep Abbigail in your thoughts this weekend as she battles herself yet again, with her OMS flaring (the-activating) due to a lingering bladder infection. The days are long and nights longer as she tries to resist her own urges, rages and uncontrollable actions. Also, I ask that you please don’t forget these kids, don’t let Abbigail or any of these precious babies fighting or fallen go without notice. They all deserve every little bit of support that we can muster.

Their battles, struggles, pains and fears are bigger than they are but they never ever give up or give in to defeat – neither should we!

Abundant hope, faith restored & prayers answered

Abbigail is being honoured, supported and ultimately blessed in some of the most amazing and inspiring ways lately! There have been countless amazing people who have offered their support to our family and who have followed along with us as we go through this journey.  There have also been several generous and kind hearts that have gone above and beyond just support, they have taken time out of their lives to fundraise and help our family in big ways and for that we are eternally grateful.  There are also those rare few that truly have changed our lives.

For those of you who do not know, an 11-year old local girl, who was a stranger to our family just a few short months ago, took it upon herself to raise money for Kisses for Abbigail by holding her own fundraisers. She decided that she wanted to shave her head to recognize Abbigail’s fight, honour the children past, present and future who follow similar journey’s with Childhood Cancer and to help us raise much needed awareness. Her goal was to raise $1,000 before she braved the shave, and let me share with you that she has already surpassed that goal and we couldn’t be any more proud of her!

Chanelle’s Brave Shave started out as a huge idea in such a young but immense heart of a kind generous young lady, and now it has become so much more!

She and her family held a bake sale two weeks ago and it was far beyond anyone’s expectations. Everyone who helped went above and beyond and the overwhelming support of those who went out to the event was humbling. Because of the enormous hearts and generous supporters that helped the bake sale be a success, Chanelle and her family were inspired and wanted to do more. They held their annual Snowshoeing Evening at their property this past weekend and invited anyone who wanted to help their cause to join them and make a donation to Chanelle’s Brave Shave and they again fundraised for Kisses For Abbigail with heartwarming success. We can not thank this family enough and have no words to express our gratitude towards this amazing young lady! Chanelle really is a truly wonderful girl with so much heart to share!

Now with her impending big sacrificial head shave fast approaching, I can not help but feel nervous for her! I will be honest, I am not only floored that someone would go such lengths for OUR daughter, but that this is a young lady, of only 11-years old! We can’t imagine how difficult this would be for any woman, let alone a young lady! As Abbigail’s mother, someone who sees children fighting for their lives daily, who has grieved the loss of too many young fighters, this young lady’s sacrifice of her own long locks has not only inspired me, but has touched my broken heart in such a way, that I truly now believe in the power of prayers and the goodness of man kind. Chanelle you have changed me and I think you are going to change the world someday with your inspirational heart.

I hope as you read this, that you too are affected by her humble but immense gesture and that you feel compelled to show your support and make her feel as wonderful, beautiful and amazing as she truly is! On March 7th Chanelle will be shaving her head in front of family, friends and strangers to show her support for Abbigail and her fellow fighters.  She will be doing this I am sure with angst and fear but with strength and love.  Help me show her that she is doing something greater than she even knows or understands.  Please show her your support just as you have all these months for Abbigail because she truly deserves it for what she has done for our family and what she is doing for Abbigail and so many others.  Her brave shave is more than just a fundraiser for Abbigail, it is a true testament of the kindness and selflessness of humanity.  I have never felt comfortable with asking for support, let alone directly asking for financial help but to our family this fundraiser is more than that and we truly want to make Chanelle feel great about her decision and know what a huge impact she is having on our family and our daughter’s medical care.  This is no small feat for a young 11-year old, please help us show her that her sacrifice is priceless.  Donations need not be large, a small donation with a message of encouragement will help her see what an amazing person she is.

By following this link you will not only help Abbigail on her Brave Journey through Childhood Cancer and OMS but you will be showing Chanelle that she isn’t doing this alone!

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We understand that everyone has their own battles and their own financial burdens and we do not expect you to donate, your love, prayers and compassionate support is more than generous and abundantly appreciated, so if you feel you can’t make a contribution to Chanelle’s fundraising efforts, do not feel bad, instead please show her your support for her efforts and grand gesture by leaving her a message of encouragement or if you are local and can, please attend her Brave Shave on March 7th at 3:30pm at the Miramichi Lodge in Pembroke! Imagine her face and her fears melting away when she sees so many supporters.  My dream is to fill the place to capacity to let her know how much we absolutely appreciate what she has done and what she is sacrificing.

Abbigail’s supporters give our family hope with each new comment, message, prayer and donation that we do not necessary wake up with each morning.  Our faith in our community, our friends and our family has become clearer than ever when we see how much love people have for our daughter and with each new compassionate supporter we meet, our prayers for a better future for Abbigail are answered.  You may not come with a cure but you offer Abbigail something just as precious in her life; you offer her courage and strength in knowing that she has never fought a single day alone and that no matter how long her battle may be, she will never be fighting this on her own.  For that eternal gift, we will never have enough words or praise that would do our gratitude justice.

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!