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. 

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!

DAY -5

There are days I have to tell myself “get through the next five minutes, you can make it through five minutes,” and I did! I have been making it through years of our daughter’s cancer and OMS relapses and treatments…five minutes at a time.

Last night Abbigail and I said farewell to some families we have met and bonded with while staying at the Ronald McDonald House here in Toronto as we walked over to the hospital for her admission. We also had to kiss our family goodbye. Matthew, Nana and our two boys came for a visit this week and it was so great to be together again after two long weeks. As grateful as I am that we had those days with family, last night was quiet, lonely and sad without the commotion, noise and laughter of Abbigail playing with her brothers. Last night was also an anxious night as I sat staring at my girl as she slept peacefully beside me. Today is DAY -5 and that marks the beginning of conditioning treatments preceding the actual transplant of her stem cells.

Abbigail has a way of always making the best of every situation, her innocence hasn’t been completely robbed if her. Her heart is so big and beautiful, it shows on her face as she proudly makes her own thanksgiving apple pie in one of the children’s lounges today. I faithfully pray that these moments of pure joy and innocence continue to shine through the difficult times that lay ahead.

As I type, Abbigail sleeps through the first poisonous dose of chemotherapy, part of her pre-transplant conditioning. When she wakes up, she will likely be sick, miserable and I will have to tell her that an other fight has begun.

Up until now, despite being here for over two weeks now, she hasn’t had to remember the chemos, the pains, the nausea and vommitting. She has enjoyed making new friends and having tea parties with the occasional surgery, ultrasound and poke or procedure. She will quickly and sadly be reminded of her reality when she awakes, possibly ill and they forcibly insert an NG tube, hoping not to induce further throwing up. At that moment I will have made it through the last five minutes and I will move on to the next five…perhaps with a little less energy but never any less love or faith.

Tomorrow will be DAY -4; she will receive more chemo and it should be an uneventful day with only one chemo treatment. Sunday however promises to be difficult as she receives a very powerful immunosuppressant, much like chemo but somehow not as poisonous.

Pray for an other five minutes…that Abbigail too can get through them.

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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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Abbigail’s New Beginning and Brave Journey to Healing

Last week Abbigail went through more scans and procedures, including a bone biopsy to quantify the recent findings by radiology that suggested further metastasis to her pelvis marrow.

The pathology of this biopsy came back after a painstakingly 7 days of waiting and they believe that there is no evidence of disease within the samples they tested. Her bone marrow aspirates and trephines clear, MIBG showed no uptake, however her bone scan showed abnormal uptake and her MRI clearly shows abnormalities within the questionable area. You might say it’s good news about the biopsy, but I still can’t bring myself to equate questionable evidence of disease, within a body already known to show new disease, which is what it almost always is (even though we keep being told that it might not be), with good news. So instead I think of it as not bad news. I was hoping for not bad news, and it wasn’t bad news. So in that sense you could even say it was good. I can’t help but wonder and worry while I am trying to be grateful because it was clearly stated by radiology that he could not be truly confident in that he retrieved the biopsy samples from the area in question. It was also clearly defined in the pathology report that within the 5 samples studied, only 20% was bone matter and that leaves me nervous and anxious that we are celebrating something irrelevant, but I will chose faith and hope today and chose to be leave that this disease will no longer inhabit my precious girl’s body.

The fact remains though, that this new activity found within her pelvis on several radiological and nuclear scans could potentially affect her eligibility for transplant, never mind what that actually means to have new inoperable lesions in her tiny body. So with hope in our hearts we will push through the next steps in healing and chose only to worry if just cause is presented. We are hoping to have new imaging done in a few weeks, before actual ablation and transplant, to see if the area in question has changed.

After Abbigail’s biopsy, Matthew and I took a quick trip to Toronto to meet with her new Bone Marrow Transplant doctor from SickKids hospital in hopes of securing a date in the immanent future to begin the transplant process and get her chemo underway. This hopeful procedure will bring us to Toronto for numerous months, away from family, friends, work and the comfort of our own home and CHEO, however it may bring us hope, and a new life we never thought possible again!

Although transplant hasn’t yet been scheduled (day 0) for various logistical reasons and due to the complicated case Abbigail is, we have started the lengthy process leading up to Day 0; Abbigail’s New Beginning and Brave Journey to Healing! Monday we will check into the Ronald McDonald House in Ottawa for a quiet family night together before Abbigail is admitted to CHEO the next morning to begin a week of chemotherapy. I will stay there with her as always, hold her when she’s too weak to sit up and carry her when she can’t walk. I will cuddle her and rub her belly when she’s throwing up and nauseous. There’s nothing I wouldn’t do to take her place through these difficult days of treatment; to take away her bone pain from the stem cell stimulants, the nausea from the poisonous life saving treatment, and so many more of the acute and long term side effects she will experience over the next weeks, next months and for many years after.

Abbigail is a firecracker, and she continues to battle through it all with joy, love and bravery. We can’t help but follow her lead. She has grown up so much over the last two and a half years and we look forward to watching her continue to grow and become the girl we always knew she was!

As we travel for treatment, spend countless months away from home, and hold Abbigail’s hand through the most difficult months of her life, please follow for frequent updates as each day will have the potential to change her life. Stem Cell Transplant was not a quick and light decision, it has been over a year to get here. You see, Abbigail will be the second child to go through a transplant of this type for OMS in Canada and third in North America and it currently represents a 50/50 chance for her remission. Her protocol has been carefully mapped out with chemos, steroids, immunosuppressants and numerous immune altering drugs specifically to target OMS and has also been tweaked further to target Abbigail’s stubborn and rare neuroblastoma presentation as an OMS child. Stem Cell Transplant has the potential to be life saving but still holds significant risks for morbidity in many cases and even mortality in as high as 5% of children. This was by far the toughest decision we’ve made to date and although we know there is no cure for OMS, and it could return several times within her lifetime, we have high hopes that this finally treatment will bring her to a better quality of life and allow her to experience more as any other child would.

Your support and prayers are appreciated and truly make a hard day or long night slightly more bearable knowing we are not alone throughout this journey. Thank you from the bottom of our hearts.

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