Public updates have been few and far between this year for several reasons. We have received each and everyone one of your prayers, well wishes and private messages seeking good news about Abbigail and we… More
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.
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.
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!
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!
Sigh…as you may have gathered, this journey has been nothing short of complicated and the uncertainty of every aspect of Abbigail’s health is wearing our family thin. One step forward has always been followed by two steps backwards and her rare presentations of complicated tumours, symptoms and even her resistant OMS have puzzled Abbigail’s medical teams all over the continent.
“How’s Abbigail doing,” you ask?
Abbigail’s OMS symptoms are once again working against her. Her legs have been aching and her pain centre doesn’t seem to signal pain intensity to her until it’s unbearable so she often overworks herself and causing further pain. Her coordination and motor planning is frustrating to her when it comes to small and simple tasks for the average 4-5 year old, at best she is at the same level as her 2 year old brother. When it comes time to communicate, she has her own system that works well with family, most days…she is learning so much from her little brother but the frustration this huge gap has created causes so many difficulties for her and our entire family dynamic. The other aspect of her OMS which causes her the most difficulty is her temperament, irritability, self control and behaviour. She screams. She cries. She hits and smashes. When her immune system is the least bit activated, either due to fatigue, infection or stress, it is obvious to all. It is alarming to us as her parents to witness, it is unfair to her siblings and it is so difficult on Abbigail to be constantly at battle with herself. We saw a huge leap in improvement of these symptoms a few weeks back, then recently we found ourselves a few steps back this last week with increased symptoms. Perhaps this is indication she is fighting something but that the stem cell transplant is still trying fight off the OMS within her body. We will continue to hold her tight and help her through the difficult days in hopes of a better tomorrow for her.
“What about those liver spots found Christmas Eve,” you secretly wonder but are afraid to mention?
Just before tearing open the gifts under the tree, we were burdened with news that her MRI showed a significant number of small nodules within several segments of her liver. This is news we were not prepared to hear. Our hearts sank AGAIN. She just finished going through one of the most gruelling treatments known to a Cancer patient; lethal doses of multiple chemotherapies over the course of only a few days, essentially putting her at a high risk for mortality due to complications. How could this be happening now? We cling to the possibility that this was a complication of her post transplant infection, that these spots would slowly disappear as she healed and her infection cleared. In early January we put her through a long ultrasound to further investigate these spots and it revealed that they were still there and perhaps even slightly more prominent than three weeks prior on MR imaging. There were discussions with surgeons, radiologists, oncologists, GI specialists, the infectious disease team and her bone marrow doctor in Toronto. The consensus was that we needed a piece of tissue to definitively know what these spots are. They have press rated themselves in such a way that they do not fit any diagnosis with even partial certainty. The tumour board then reviewed her case and decided to wait yet an other week, now a full 5 weeks after finding these on MRI, to rescan her liver to see if they had changed and if a biopsy was granted, because this procedure poses a certain risk and merits considerable discussion before proceeding.
Yesterday Abbigail had a beautiful day with her good friend Molly Penny, CHEO’s therapeutic clown. They were photographed for an Art project being published by medical students. Their ever growing relationship has had a huge impact on Abbigail and this will be beautiful to see in print. These two “clowns” also played play doh and acted silly together, Molly always following Abbigail’s lead and never letter her lose sigh of the laughter. Molly kept Abbigail from remembering how hungry she was (she had to fast all day) and she didn’t allow her to worry about why she was even there yesterday. It was such a wonderful day watching them interact and laugh together, like we weren’t even in a hospital, that I too had a few moments of sheer bliss and ignorance, not thinking of the fear I had. This beautiful day was just that for Abbigail! She got through her ultrasound with Molly and her CHEO buddy Erika by her side and she was none the wiser…memories of laughter, simple play and good friends are what filled her day!
She lay still, talking about the silliest of things, farting on us all and laughing without a care in the world, as I watched the technician’s screen full with bright spots as she scanned my daughter’s liver. What was a near blip it seemed two weeks ago has magnified and multiplied significantly. The radiologist walks into the room as Abbigail prepares to take her friends outta there and confirms what my untrained eye witnessed. Abbigail’s liver nodules aren’t going away, in fact they have grown and it appears as though they are multiplying once again. The blood rushed down my body as I tried to gather my thoughts to ask the proper questions, while I had the radiologist there to answer them.
Abbigail will be undergoing a biopsy, potentially within the week, to extract samples of the tissue that is consuming her liver…and our fears. There are a few possibilities for these nodules, none of which are favourable at this point. A liver consumed with infection is our best case scenario. A rare post transplant complication could also explain this. The alternative is unfathomable to her team and even more so to us. The idea of it makes me sick and angry and heartbroken.
“How is Abbigail?” you often wonder…she is happy today…oblivious…small and mighty force that outshines her illnesses.
Praying she has more laughter and beautiful days in her future and that the dark clouds that have loomed since that phone call on Christmas Eve, will quickly pass.
Since that dreadful call on Christmas Eve, I have been consummed with fears and questions, both of which have yet to be relieved or answered.
Abbigail has had an MRI and ultrasound of her liver since returning from transplant and they both reveal the same differential diagnosis and affirmation of my fears. These nodules found to be growing and multiplying within her liver, aside from her never disappearing liver tumour treated with 8 cycles of chemotherapies last year, are suspect of further metastasis, PTLD (post transplant complication involving further cancer) or infection. We have consulted with liver specialists and infectious disease and they have all suggested a biopsy to evaluate a tissue sample from the “spots” to see what they are because blind treatment could result in further damage. So could time…I am pushing as hard as I can to get these procedures and tests completed as soon as possible because in my heart and my gut, I don’t feel this is “nothing to worry about” and time has only hurt our baby girl in the past.
So as Abbigail struggles most days to keep her temper under wraps, tame her irritability and muster the energy to be a kid, we are worrying and trying to get everything organized to face anything thrown our way. We thought for sure we would be enjoying a new life by now, but despite the odds we are continuously being thrown, we won’t stop fighting!
This fight is nearing three years and this past year we have received more support and generosity than ever before…than we could have ever dreamed of or prayed for. We have so many people, families and organizations to thank. We will post a formal thank you to everyone shortly and hope that everyone knows just how much each and everyone of you means to us and how much we appreciate your support; whether it be monetary, emotional or through prayers and kind words. We thank you ALL!
One of the recent fundraisers, in support of Abbigail, is the CNL Black Bears Charity Hockey Tournament being held this week. Colleagues of mine at CNL (Canadian Nuclear Laboratories – formerly AECL) have for ten years raised money, for local charities, through their annual hockey tournament.
Last year they raised a huge amount of funds which were in support of both the Pembroke MRI fund as well as a colleague family with a child in medical fragility. Much the same this year they have again chosen the MRI fund in addition to Kisses For Abbigail. We couldn’t be more blessed and humbled by this. We would love for our family and friends to go out and support this huge team of generous and kind heart hockey enthusiasts who chose Abbigail to pray for and raise funds for this year.
We hope that everyone has a week of fun filled ice time while we continue to look further into Abbigail’s liver tumours and we look forward to hearing about all of the fun the kids had during the festivities. Please send me photos of the event, Abbigail will one day look back on her supporters throughout her battles.