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. 

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!

May her mountains be beautiful!

…and so the journey continues; climbing mountains, falling off cliffs, reaching for the stars.

Abbigail’s bone scan last week returned positive. The bony structure within the right ala of her pelvis lit up like a Christmas tree, correlating precisely with what was seen on her MRI images of July 15th (see recent posts since MRI). What does it mean? It means just that. Nothing more, nothing less. It barely moves us forward at all. But it’s official, I am now pronouncing it so. Abbigail is an enigma. The truth, of course, is that neuroblastoma is such a complex, multi-dimensional disease that there are children like Abbigail for whom modern medicine just doesn’t have any answers at present. Relatively speaking there is so much that is still unknown about what neuroblastoma really is, and how/why it behaves like it does.

With these results though, the ‘plan’ has an additional, hitherto unmentioned, element; a core biopsy. She’s had pretty much every scan and diagnostic test going, and has gone through multiple biopsies and aspirations in the past, I’m sure she’ll hardly noticed if we slip one more into the schedule.

So, I sit here alone, on a cold couch, in the dark waiting. Waiting for something to wake me, to end this scary road and show me the light again to a place where our daughter no longer feels pains from needles, chemos and cancers, where she can ride a bike and fall off, skinning her knees for band aids instead. Waiting for my heart to mend after it’s been broken too many times over. Waiting for the fear to stop invading my every thought and decision. Waiting to hear someone say she’s free. I’m waiting to hold my daughter as she wakes from her sedation today. She went in for her biopsy a couple hours ago, with a smile on her face as she fell asleep in my arms. She will wake hopefully and the interventional radiologist will come out confident he retrieved enough bone and marrow to provide answers and that our baby girl was unscathed through the procedure. The wait won’t be over though, not for us as her parents, family and team of doctors. Then we wait for results from the lab. Agonizing at best. Gut wrenching most hours, soothed by her laughter and the love she has for life but nonetheless painful and frightening. We pray it will come back negetive, proving once again that Abbigail doesn’t follow the norm or any precedents…we pray for the day when there is a small amount of certainty again in where we are headed with her treatments.  Please keep Abbigail in your thoughts and I know how much love is here for her! Let’s show her that love and share her beautiful smile with the world.

One final thing that is definitely worth mentioning, and that to my discredit I could easily have omitted. The medical teams who have worked closely with Abbigail over the last two and a half years at the Children’s Hospital of Eastern Ontario have been incredibly supportive of what we are trying to do in terms of getting the absolute best treatment for Abbigail. At various points over the last few weeks and months the simplest option by far would’ve been to turn around and ‘encourage’ us to take Abbigail elsewhere. Instead, her oncology team, and in main part her oncologist, has remained very active, talking to doctors in other cities, provinces and countries, facilitating the various additional procedures needed for her OMS away from home, working day and night to find the answers that aren’t always there. My feeling is very much that at the end of this period we will know as much as we ever could about what is going on inside Abbigail. The unfortunate thing is despite everything we have done, and are doing, there’s still not actually very much we can say for sure, and the future remains as uncertain as ever. Of course there have been times when I haven’t been completely happy with her care; I was recently very frustrated over the hospital’s “slow down” policy and the resulting difficulties arranging her scans and biopsies for this possible “relapse” and I’ve challenged the doctors, offered opinions, made suggestions, and asked some difficult questions (plus a fair few stupid ones as well). And at no time have I heard discouraging noises, or felt like I was being talked down to, or told what to do. It’s a very welcome contrast to some of the stories that I’ve heard from other parents going through this rare journey with OMS and neuroblastoma. Maybe I’ve just been lucky, maybe sometimes I see through rose-tinted spectacles, or maybe the times they are a-changin’. I believe in my heart that Abbigail’s team loves her, from her oncologist and case manager, to the team in radiology who have seen her and cared for her more than 100 times all the way to the nurses in MDU and the administration who are first to greet her everyday. They all have a special place for her in their heart and that is irreplaceable and priceless.

Abbigail you will never climb alone and once we get you to the top you will hold the stars in your hands and shine among the brightest. I believe!

Paralyzed in Fear

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

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

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

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

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

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

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

Her Journey Continues…

Who's sick? This girl is a firecracker! {3 weeks in hospital - February/March 2012}
Who’s sick? This girl is a firecracker! {3 weeks in hospital – February/March 2012}

No evidence of disease…what does that mean? Simply put, in Abbigail’s case, at the time of the scan there was no detectable cancer cells. For that small moment, we could breath…until that moment passed and we were reminded that the next moment could hold a growth spurt for an undetectable cell they maybe missed. Then we held our breath again. For some childhood cancers, these scans are performed numerous times a year and for several years past remission and for others life can begin to simplify again and this scan means the start of something new. Abbigail has had her body scanned every couple months since last February and we continue to receive those quick gasps of air, the difference being that each of those gasps where never of fresh air. Abbigail’s reality is not so simple. Without medically boring you, her tumour was “unfavourable” with many markers that would indicate that if she did not have OMS which led to the early detection of her cancer, she had a high probability of being full of cancer throughout her body by the time we would have “found” her tumour because of its “type” it held the chance of being a tougher battle….which could have taken many more months or even years. This being said, as we know, Abbigail is one in ten million, so everything that the very few articles and studies are saying about Neuroblastoma Cancer and OMS does not seem to be ringing true for Abbigail. Most children with OMS tend to have a lesser evil cancer, Abbigail’s as I mentioned was not the case, and so we continue to fear relapse. So we continue to lose sleep when she gets a tummy ache, thinking the tumour has reared its ugly face again causing her cramps, or that her swollen lymph node under her ear is reason to believe that “IT” has spread. You see, as an oncology parent, nothing is simple anymore, not even after the cancer has left the body. There is no such thing as a simple tummy ache, headache or flu and all fevers tend to become ER visits due to the state the chemotherapy has left our child’s immune system in because as we learn when we become a part of this ever dreaded club, infections and late effects of treatments take our children from us too. We have to think twice about every simple symptom our child complains about or doesn’t, then that fear returns, the heart palpitations take over your body and the anxiety kills you inside. You are brought back to that very day they so simply stated that the innocent baby you are holding has cancer. I do not know how to describe this pain, this ache and gut wrenching feeling to anyone who has not suffered such tragedy. I honestly do not think it is easily explained because even us feeling it do not have the words for it…it is just felt.

I posted a few days ago that Abbigail’s recent MRI scan came back “cancer-free” and as true as that is and as wonderful and as relieving this is to us as her parents, this is not her end. Her scan showing “no evidence of disease” was a hurdle happily beat but this is not even her toughest battle. Abbigail may have fought her battle with cancer last year and as I have written and reminded myself many times, her cancer left her body when they removed her tumour, but she has a long road ahead of her still. That feeling that I explained above that never goes away, that fear felt when your child says their tummy hurts, those are real, true and grand. I feel them everyday as I watch my darling little girl fight with herself. In our home, we do not only fear the cancer returning, we fear her OMS is attacking her brain again and again and we are brought back to that sad day in February when she went from an average toddler to a tragic infant unable to control herbown movements right before our eyes. With each scream my daughter makes, with each abnormal eye movement I witness and every trip or fall, I analyze and wonder if it’s sneaking back up on us again.

Sweet moments are made even in these settings {June 2012 Chemo #4}
Sweet moments are made even in these settings {June 2012 Chemo #4}

Yes, Abbigail was free of evidence of disease on February 25th 2013 at 2pm when they completed her MRI scan of her head, spine and pelvis! Thank you for all of the wonderful wishes and sentiments, we truly are blessed to have such amazing family and friends and even support from strangers, but I feel as though I may have mislead you to believe she has been cured of her illness or that she has beaten the beast that we call OMS. This cancer-caused disease will follow her for her entire life, she will live with the sequelae of not only her current treatments and what they are going to do to her brain and body but she will also live with the constant relapses and life altering conditions that OMS causes. Abbigail may be cancer-free today but she is not free. She will endure months, possibly years of intense treatment before she can reach a neurological remission (simply stop the brain damage), where she will then have to continue to battle the symptoms, because there is no cure and hope that the next cold or flu doesn’t send her back to crawling or slurring words and more intense chemotherapy and immuno-supression.

Daddy Snuggles Melt her Fears Away {Diagnosis}
Daddy Snuggles Melt her Fears Away {Diagnosis}

We are not giving up and we will not let this beat us, but it is not an easy road and it is not easy to watch our baby girl go through the things that she does. I can’t even say out loud some of the things I must give permission to doctors’s to do to my baby girl because it makes me ill – so please do not stop praying for our little girl, she needs you more than even. She fights harder and harder everyday to get through the next and she deserves all of the support we can muster.

{Below is my updated post from last week – painfully repeating the words through many calls, texts and messages, I realized I was not clear. Please accept my apologies and sincerest thanks for your understanding support and love}

We received the full report recently from Abbigail’s most recent MRI scan.

My Hero <3
My Hero ❤

The long day of fasting and being bumped on the scan schedule endlessly was worth it. At that moment on February 25th, the cancer had not reared its unwelcome face again, as there were no visible tumours found on her scans, medically the doctor’s report states “no evidence of disease,” and we couldn’t be happier! Each time she has been scanned this past year, we get one step closer to days without cancer on the brain, although Abbigail does not have any evidence of disease today in her body, the reality is that she poses a higher risk than the average child to have subsequent cancers or to still have premature cancerous causing cells still in her body, undetectable to scans yet. What this means is that she is not actively fighting cancer right now, but her fight is not over and the fear of cancer will never be over. As years pass, and more scans return NED {no evidence of disease}, Abbigail is further from cancer and the possibility of battling with it again. Every cancer has a different “time-frame” to be monitored post active treatment, for Neuroblastoma, for about two years post treatment, follow-up tests and scans are every three months, then every six months and eventually none unless symptoms present themselves again. It is hard not to worry, however the further from treatment Abbigail becomes, because the symptoms of relapse can be similar to those of a host of childhood illnesses and conditions and we must continue to be vigilant.

So here we are, not directly fighting cancer, but its rare creation – OMS! We hope and pray and maintain faith that one day we will get to where we are supposed to be with her OMS but in the meantime we will battle with Abbigail and enjoy the moments along the way…we will get there one day at a time.

Abbigail was a real joy that day, despite the difficult circumstances, and she spread her smile throughout the halls as we passed the time visiting friends, favourite nurses and even crashing a private playroom for a quick nap. She truly has some of her best moments and days at CHEO. As strange as that may seem to an outsider, she has spent the most vulnerable days in that place and had many strangers touch her life quite literally and to her it is a place away from home that she is comfortable in. She has much love there and is quite the shining star.

Off to spread some more joy!
Off to spread some more joy!

Here she is, sure to keep the nurses on their toes in MRI, when she awoke from her anaesthetic she didn’t waste a minute’s time, she tore out her IV before her meds could even be pushed through the line! She is a firecracker!!!

Abbigail has made a name for herself at such a young tender age, she is one of the 2 cases known at CHEO of OMS and she continues to fight this battle with every willed fibre in her tired little body. Don’t get us wrong, we are thrilled and remain positive and optimistic for our baby girls future but take this news with the understanding that her toad doesn’t end here. Please take this news of her recent scan and wish for many more shiny tumour free scans in the future as our baby girl has endured enough and will continue to endure what this life long battle trows at her. With no cure she will have a life of battling and so we ask you to pray we do not have to watch her battle cancer again too.

Beautiful even post-aneasthetic
Beautiful even post-aneasthetic