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!

The journey continues…

Dealing with life’s daily interruptions are grueling when you have a sick child. Especially when “daily interruptions” can mean trips to the ER. Anyone who has been through the journey of caring for a child with cancer can attest to the fact that a family experiences many levels of loss along the way. The process of loss does not begin with the death of a child. In fact, personal losses for parents and siblings begin to pile up early, from the beginning of therapy to the final outcome of treatment. From the first day of treatment, daily life is irrevocably changed by the demands of caring for the sick child, and everyone in the house feels the pain. Siblings experience a great deal of uncertainty and anxiety, based primarily on the absence of their sick sibling and one, or possibly both parents, due to long hospital stays, or late night departures to the emergency room when chemo’s side-effects kick in, demanding treatment. Parents lose individual time with the healthy siblings, family dinners get skipped, school and special occasions get missed. It’s all part and parcel of the great amount of time that has to be devoted to the sick child, and the sacrifices that come with this reality. Siblings are acutely aware of the absence of their parents. What we wanted most to avoid was becoming isolated from our healthy children. Making sure they were involved in the care of their sister was an important way to stem the feeling of loss and isolation, and keep everyone together. How much that helped Abbigail’s two brothers I can’t be sure, but at least we are trying to keep our family normal, in an otherwise abnormal situation. While it’s important to focus on the healthy kids and how they are feeling, keeping a close eye on your spouse and their feelings is of equal or possibly greater importance. Given the difficulties and time constraints caring for a sick child can put on a relationship, it’s easy to grow apart. Most of the time, mom is one place, dad is another. I know this is a reality in our experience, the loss of personal time together in just about every aspect. The challenge is to try and restore some of the intimacy and private moments, while still dealing with the constant pressure of caring for your family. Ultimately, depending on the progression of the disease, there will be lesser, or greater losses the family will experience. Communicating with Matthew and the boys on how everyone is feeling, trying to keep us close, both emotionally and physically, is the goal, hopefully mitigating some of the loss that caring for a Abbigail has brought to our family over the last three and a half years. 

Today Abbigail and I are cuddling beneath a bright pink Barbie blanket, enjoying each other’s company, but it isn’t in the comfort of home and it isn’t surrounded by our loving family. We are in hospital. The boys are back home with Daddy trying to carry on with the daily chores and coping with the daily losses implicated when Abbigail is in hospital, and Mama by her side. 

Our family has been blessed this past month with the gift of time. We were given use of a home in Orlando, which offered our family the opportunity to drive down to Florida and have unplanned, uncharted time together, without treatment interruptions, or medical appointments. Abbigail was well the time we were away, with the exception of a few days of cough and cold, and she was able to have her NG tube removed, as she now eats well enough and is able to take her medications orally. She turned five years old during our trip and had the time of her life; splashing her toes in the water, enjoying breakfast with Sophia the First (child princess from Disney) and spending each day with her brothers and both parents without exceptions. There were no hospital visits and no additional medications or blood to be drawn. After countless beautiful sunny days with Mickey and his pals and so much pool side fun, we hit the highways for two days to get back home. We chose to detour 12 hrs though, which gave  us the chance to visit with close friends in Memphis. They have been relocated there for almost a year now, seeking life saving treatment for their daughter, Abbigail’s best friend, Phoebe. This entire trip, as busy as it was, truly was a huge break for our family, an opportunity to be together without planned interruption, a blessing beyond comparison.  There continued to be small daily losses as Abbigail still suffered from the sometimes debilitating OMS symptoms, which made the day to day struggling at best, but in the end it was magical.  Once all of the roads were behind us and we finally saw our fields, local farms and neighbours, we were relieved to be home and back to our comfort zone. As amazing as the ignorance has been this past month, we knew that this serene feeling of freedom from the diseases that have festered our lives for years, was likely over. 

Abbigail was due for her follow-up MRI on her liver lesions only two days after returning home. Wednesday, May 27th, she underwent sedation for the umpteenth time and had images taken of her abdomen and pelvis, with the focus being on her liver. After two days of waiting for results, we arrived to hospital again Friday the 29th of May to hear that her tumours have now doubled to an astronomical number of 60+ spots confined to her liver. This is not only puzzling to her team, but also very concerning and worrisome. Abbigail is continuing to pave her own way and write her own story about Neuroblastoma, relapsed disease and living with OMS from infancy through childhood and we will keep following and supporting her with all of the hope and faith that we can muster. 

That Friday also turned out to be one of those unimaginable moments in a parent’s life, when they hold their child tightly, fearing the worst, but knowing that life is a gift…that this child is a gift that can be taken from us at any given moment. That moment of surreal fear brought nauseating feelings to our clinic room Friday morning as Abbigail threw herself to the floor in agonizing pain only mere minutes after showing off her talented dance moves. 

Abbigail appeared to be in septic shock as her body temperature rose well above 40 degrees Celsius and her heart rate jump to 175, forcing her bloodpressure to plummet down hard and fast. This brought on severe headaches, uncontrollable shakes and shivers and confusion. Abbigail was suffering from sepsis, what was once called blood poisoning. It was quickly determined that Abbigail’s entire system had been “showered” in bacteria when her lines were flushed post blood draw. It turns out Abbigail likely had her central venous lines too close to the pool in Florida, where bacteria came into contact with foreign and vulnerable object in her body. She was immediately started on antibiotics, cultures were sent off to the labs for analysis and we were transferred from the day unit care to inpatient, where we would be for the coming weeks. 

So again, here we are cuddling, well actually she’s snoring now, and although it has only been a few days, it feels like a lifetime.  We have so much uncertainty to face and far too many unanswered questions for both infectious disease and our oncology team, that taking it day by day even sounds and feels insurmountable. 

Her Spirirt is seeing her through

Abbigail’s spirit is such a gift. Something so special it is just as rare as her diagnoses. She runs at her challenges and faces them head on…never giving up. 



We have stood up for her, battled for her and carried her for over three years as she suffered the unimaginable over and over again. We are tired. She is tired. Her brothers are tired. Our family is tired. Exhaustion never stopped Abbigail to date. It won’t stop us either. As we watch her get up from a fall, shake as she tries to cap her lipstick or repeat herself tirelessly to get her thoughts across, we are never short on inspiration. Abbigail is not giving up!

Over the last few weeks we have brought Abbigail for blood work, tests, clinic visits and we’ve watched her fall asleep by anaesthetic a handful of times. All in the name of hope. We had hoped to find an explanation for her symptoms, her lack of improvement and the nodules riddling her liver and threatening her future…her spirit. 

The latest scans, done on Thursday, revealed multiple new lesions, growing and enhancing nodules and possible damage to surrounding areas and organs. She is experiencing some abdomen pain and back pain, above and beyond her chronic pain caused by year’s of steroid treatments, chemotherapies and in addition to her torturous OMS attacks and flares. Her liver enzymes measured in her blood are slightly elevated however other than these symptoms, we have no other explanations or indications to provide answers for these aggressive nodules in her liver. We have consulted physicians at both CHEO and SickKids. We have a team of oncologists, neuroblastoma specialists, radiologist, pathologists, and surgeons reviewing her images, lab results and biopsy slides trying to piece this mystery together because she is falling into every minority, rarity and impossible diagnosis. To date we have eliminated many possible diagnoses but have still not been able to dismiss more Cancer. 

Tomorrow this team that cares for Abbigail, their little hallway hero, the firecracker they all know, recognize and hear in the halls several times a week, will meet again to plan the safest way to obtain a new piece of tissue from the largest of tumours in her liver, on her backside. The hope is that this could provide insight and a path forward for treatment. She is not in any immediate danger and she is far from critical, however time is of essence because as we have seen, within a week these ugly things have already grown and spread and have been steadily doing so since December. 

Abbigail will continue to fight and we will fight with her…

Please keep her in your prayers. 

She continues to laugh and spread her joy!

In Abbigail’s mind, there is always laughter to be had and smiles to be shared.

Today she beamed down the halls of the hospital, waving to the many staff she has come to know and cherish; the cafeteria cook and cashier, the pharmacy assistant, the coffee shop ladies who keep mama awake and the ultrasound techs who took care of her baby cousin. She was such a proud big girl today, showing off her baby cousin and ensuring he knows his way around CHEO. While he was meeting his new doctors and having his first CHEO experience, she was doing routine central line maintenance, having her lines “unclogged” and blood work drawn for her weekly virology tests.

She doesn’t understand the details behind her diagnosis, she doesn’t know anything different than the multiple weekly visits to CHEO, treatments, surgeries, “sleepy time” (anaesthetic) and clinics. Abbigail is blessed with the naivety of a baby, not understanding why strangers are intruding in their personal space, but knowing their parents will keep them safe. Abbigail is still very much like her 4 month old baby cousin today, even at the beautiful age of almost five. She doesn’t know that she has a rare and incurable disease for which she has battled for three years and continues to. She doesn’t realize that the “medicine” that saved her life twice already, received through her central lines, aka “tubies,” is in fact chemotherapy and that it could cause future, secondary cancers, and life long, sometimes detrimental side effects. Abbigail is graced with a certain ignorance despite having her innocence robbed from her three years ago.

Tomorrow she will walk back into CHEO to have her liver scanned. It shouldn’t be long before we have more information and before we have a plan forward…something to cling onto and pray for.

Please keep her in your prayers tomorrow morning and envision a “healthier” liver for our princess. She deserves to register for kindergarten and not have to withdraw again this year.

Thank you everyone for all of the support!

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!

DAY +18 – The road less travelled

Would you believe me if I told you my neutropenic but afebrile girl was sick? If her vitals were only slightly elevated would you think I was paranoid? Do you think you know enough about OMS because you read an article and a few pages of her chart? What if I insisted something was wrong, would you believe me then?

Abbigail is 1 in 10 million! She defies all odds and sneaks within every minority she possibly can; always the star of the unlikely and rare! It is near impossible to apply any expectations to her recovery post transplant and if she can, she will take the road less travelled! She’s a true warrior, paving her own way and leaving her mark. She doesn’t need to scare us as much but we are proud of her always, blessed and honoured to be her parents.

A week ago I was running on little sleep, no calorie intake and likely only enough water to flush out the caffein that was keeping me going. Abbigail was a mess. I had shared with you the devastation and fears I was facing as I watched her battle what I described as her worst relapse of OMS, something similar to the first days post diagnosis. My heart was in disbelief, but my gut and instinct told me she was ill. Any time Abbigail is nearing any infection, whether a cold, flu or urinary tract infection, I always “know” before any medical signs, symptoms or tests. I always speak as though I too am going through treatment, not to take away from the trauma our girl has experienced, but I feel connected to her in such a way that I feel her pain and truly know her on a level I can’t explain. I knew that despite her fevers, lab tests or vitals, that my daughter was not well. I was reassured over and over, as I rang the nurses bell or paged the doctors to return and exam her, that Abbigail is doing relatively well and that she shows no signs of infection. I was never reassured. I continued to monitor her vitals on my own, take lots of notes and continue to show concern to anyone who walked in our room. There were many long days and nights I feared for Abbigail, that her unique presentation would hinder her transplant recovery and possibly cause her irreparable consequences.

Tuesday morning after rounds, my instincts were confirmed; Abbigail’s virology lab work found she was fighting a dangerous viral infection that could threaten her life. My heart sank…the words mortality are too often spoken about on the transplant unit and when it is in context of your own child it is paralyzing. The “signs” and “symptoms” I was seeing over the past week were confirmed to be a result of her body trying to fight a virus that she didn’t have the ability to fight, hence the severe OMS. I have to explain that the medical professionals did not have grounds for worry because Abbigail did not have any scientific or medical evidence of infection…all she had was Mama’s instincts and knowledge; a three year honorary degree granted through a three year long, 24/7 placement in the field. Although doctors are aware of the rare possibility that because Abbigail has taken high doses of oral steroids twice daily for three years, that she may potentially not produce a “fever” to signal infection, they did not realize that this is what was happening over the last 10 days. Abbigail generally has a cool body temp and so when she hits 36.5-37F I know as her expert that she is likely fighting something. Anyways, she was indeed fighting something, and that something has her at it’s mercy.

Abbigail is at day 18 post transplant. Although every child is different, especially Abbigail, we expected her to have recovered by now, or at the very least begun engrafting to signal that her marrow has accepted the transplanted stem cells and is making it’s own cells. That hasn’t happened yet. So she still does not have the ability to fight any type of infection and remains in BMT isolation.

This virus is now taking over in her stern but frail body, and this week we found out it has infiltrated her organs and is passing through her stool and urine, indicating that it has progressed significantly this week.

She has begun treatment, however this treatment is also a huge risk and danger to her. The drug she is receiving, to help her body manage the virus, is a cytotoxic carcinogenic, which quite simply means it is toxic to her organs and is known to cause cancer. This drug causes kidney damage, resulting in dialysis or transplant and can be the cause of secondary cancers to her. You can probably safely assume that it was not easy hearing that the only treatment to potentially help our daughter fight and live against this virus was also likely to cause further damage and life altering morbidities. We started the treatment, along with the other precautionary medications, and although Abbigail is responding physically, the viral load is still increasing. This treatment will not kill the virus, the hope is that it will tame it enough to allow Abbigail to produce her own fighting cells to kill it off. This could potentially take weeks and months. The virus is killing her cells and the medication to tame the virus is also attacking her cells, making her weaker. Unfortunately, the only natural killer cells that kill this virus are the cells that we purposely eliminated from Abbigail’s immune system last year because they were the main cause of her OMS. Here Abbigail goes again paving her own path! The cells we killed to help her OMS are the cells we now need to save her life.

I have far too much medical information and knowledge about this and could write you a novel, but all you really need to know is that Abbigail needs your prayers. She is fighting hard! Between her resting and raging, crying and the doctors and nurses monitoring her, she still has moments of joy and that I am grateful for. She still shares her smile and screams for her favourite nurses to come sit by her side. She still shines and shares her spunk when she can.

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Halloween was a good day! Although she couldn’t leave her isolation room and participate in the hospital trick or treating events, she managed to lure the candy, treats and tricks to her bedside! She had a blast and when she finally settled and fell asleep she had a well rested night and smiled this morning as she woke!

The road may have gotten longer, darker and curvier, but Abbigail is a force that no one has ever witnessed before. She can beat this!

Thanks again everyone who has been messaging me, commenting on my quick posts and prayer requests. Thanks to so many people, organizations and groups who have been fundraising and donating (www.YouCaring.com/KissesForAbbigail), the burdens are easier to face with some extra help! Thank you to those who brought me snacks and “drinks” and also thanks to everyone who has been cheering Abbigail up daily with the mail they have been sending. Every morning she looks forward to checking her mailbox. Thank you!!!

DAY +2

10 15 2014 14:24 … an other moment in time that I will never forget. The day’s details etched in my brain as it is the day that Abbigail received her stem cell transplant.

I still can not believe it at times. after so many days, months and years of battling beasts far larger than most could imagine, after experiencing pain no child should endure and after so much hope and faith was lost, she received the most anticlimactic but exciting 15 minute infusion! Yup, that’s it; 15 minutes is all it was, after months of preparations with chemos, surgeries conditioning treatments and hospital stays, 15 minutes could have changed her life forever…not to mention saved her life from the trauma of conditioning.

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Day ZERO itself was an exciting concept for me. I was full of hope, and Abbigail had no understanding of why it was so momentous to me, the nurses and her Transplant doctor. The nurses and I scurried all morning to prepare Abbigail, our belongings and our room. Abbigail’s counts had dropped significantly over night, she went from 7.1 to 0.6, needless to say, she slept through her morning, giving her body some much needed rest while everything around her was about to change. Once she was “sterilized” and our things were too, we moved to our new home; an isolation room prepared for transplant patients that are at a significant risk of life threatening complications due to immunosuppression. she technically had no ability to fight anything in addition to possessing several additional risk factors for complications. This is her bubble, or as her and I now refer to it as, her new Princess tower, like her favourite Princess Rapunzel, being protected from the dangers lurking just outside the door. She has quickly adapted to the changes quite surprisingly actually. She can not leave the room, nor can she have visitors, she can no longer eat foods prepared by anyone but me at the moment or the special meal train for bacteria free diets here, which includes no more take out, fast food or snacks from the cafeteria. She also has to be cautious with any fresh food.

Mentally Abbigail is doing amazing, far beyond our expectations at this point! Physically though, Abbigail is causing a lot of distress to our physicians, specialists, nurses and me!

Day zero, post transplant hour, Abbigail began to show signs of adverse reaction to the preservative used to store her stem cells. Her blood pressure rising and her heart rate plummeting, she kept the Fellow, nurses and me on our toes all night long. Extreme caution was taken, safety measures put in place, boluses, and medication changes and high alert watch until her heart rate and blood pressure started to come within “acceptable” range. By midday on Day +1 we saw improvement however because we still weren’t sure if the danger was gone, we kept her attached to all of the machines for further monitoring and lucky we did because it wasn’t long before her vitals began plummeting the other direction. Despite her alarming vitals, she was otherwise in a great mood considering and she even tolerated some clouning around with A LaBoo the hospital clown and some painting with a Camp Ooch volunteer. She tired easily though and after speaking to the dietician and doctors we had Abbigail begin IV feeding to allow her body to gain some strength to fight! She was attached to more lines, now 6 IVs hanging from her small body, and given lipids and essential nutrients to compensate for her lack of eating. Once she fell asleep, her heart rate steadily rising and her blood pressure continued dropping alarmingly low, and so she was again on high alert, vitals every 10 minutes, no sleep and people coming in and out of her room the entire night.

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I remember just giving birth to my kids, didn’t matter if it was William, my first born or Madden, our third baby, I distinctly remember not sleeping that first night they were born because I was watching their chest rise and fall as they breath because I was fearful they would stop breathing in their sleep. I think all moms can relate. Most would also agree that although the worry never goes away, you find yourself at some point not checking as much as we realise they are ok. Well last night I watched, I felt and prayed her cheat would continue to rise and fall again and again and again. This morning we called the intensive care unit team to assess abbigail and be sure we are doing everything we can for her right now to keep her safe. Our fear is that these alarming heart rate and blood pressure changes could be caused by an infection and so we’ve put her on 5 aggressive antibiotics, antivirals and antifungals to be profalactic with any possible infection.

She’s currently trying to rest as I type, she is uncomfortable with all of the wires, feeding tube, monitors and electrodes attached to her body and skin and we’ve had to start her on a form of morphine to alleviate some pain associate with mucusitis; which is the breaking down of cells within her GI tract causing painful sores to develop from top to bottom.

I am praying for a comfortable night for my sweet girl, I am holding onto faith that the next moments will be easier than the last. I hope that her team of doctors, and their are many now, can locate the source of possible infection and give us answers and a course of action quickly. She is at the mercy of far too many variables right now and although she remains stable this hour, I’ve seen how quickly things change when these kids, these babies are so weak.

Thank you to everyone once again for your kind words of support and encouragement, for your prayers and for the many donations that have come in this week. These all make the burdens that much easier to bare. Thank you for sharing her updates and YouCaring page.

If you wish to help directly too, you can click on Abbigail’s {Fundraising} page here for details on the many ways you can help or contribute!