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!

How long can we be ignorant for?

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.

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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!

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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.

Getting through more tough days…

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.

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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.

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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.

When you ask “How is she doing” (Day 53)

Being home, back from transplant and her last chance at a “normal” life, has been both a blessing and a challenge.

The last few weeks we have experienced extreme joy and gratitude as a family; being together again, under the same roof in time for the holidays, and all of the festivities that come with this time of year. Abbigail has been slowly recovering from her transplant with very few complications and she has been regaining strength in her muscles, walking, “running” and even doing the stairs again. She isn’t showing any further signs of dangerous infections and she has been responding well to her new medications. It is only a few weeks to Christmas and there are no signs that lead us to believe she will be having Christmas in the hospital this year!!! She’s slept in her own bed now for 18 nights, she’s been able to stop taking the dangerously renal toxic antivirals, her CVL has continued to work, with at home maintenance, and she no longer cries for her brother’s in sadness. Abbigail saw her Princess friends at the mall last week, she also visited with Santa and shared with him her Christmas wishes, and she even shopped for her brothers. She has done so well, come so so far and been able to do so much since being home. We are so grateful for all of these tiny miracles in her life.

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Our bright and bubbly four year old girl is still lost within herself. There isn’t often an hour that passes in her day that she doesn’t spend screaming, crying, hurting or fighting with herself or us. Almost any activity, outing or event attempted, with her alone or as a family, is interrupted or abruptly brought to an end, in order to calm her or distract her from her own obsessions and thoughts. During her moments of play with her brothers, as we decorated our Christmas tree and have family meals, Abbigail is followed by a tall, heavy and cold IV pole; which holds her feeding pump. She still requires 24 hour NG feeds; which is fed through a tube inserted into her nose and through to her stomach. Since her conditioning chemo began, the first week of October, Abbigail has not eaten more than a couple hundred calories on a good day, so she continues to painfully have her NG tube replaced every few weeks to ensure she is nourished enough for her body to recover. When Abbigail asks for food, of any kind (only those bacteria free of course) you can be sure we do whatever means necessary to accommodate and promote her eating by mouth again, even if that means leaving the table, shortening an activity or changing our plans completely. Being able to leave the house is not easy; ensuring we have all of her central line emergency supplies, double checking we have the hand sanitizer and wipes and if we plan on being out longer than an hour we must bring her feeding supplies too, including syringes, adapters, sterile water, formula and pump. Our girl loves to shop and it brings her joy to hold a toonie and pay the “deedee” (cashier) but you will have to look through her mask to see her smile since anytime she leaves the house she is required to protect herself from germs with a mask in addition to the hand cleaning. You also won’t find Abbigail in crowds or shopping during peak times. I had to contact the princess company and have alternate arrangements made for her to meet the princesses briefly last weekend at the back entrance of the mall an hour before the crowd was to arrive to see them introduce Santa, then we raced the kids over to the other end of town to see Santa without the crowds. Abbigail still fights each and everyday for her miracle…she struggles through most hours,in one way or an other. At home we are getting through the days, trying not to think of her reality every waking moment. Come time to speak to the doctors, Abbigail is consumed by her friends company or Molly the Clown’s loving laughs and entertainment. If only I could ignore the reality. Her liver engines continue to climb, her kidney function remains fragile and at risk and her immune function is still compromised. All side effects of lethal chemotherapies and years and years of dangerous medications originally designed for either adults or other diseases.

Abbigail has made progress with her physical recovery; her marrow is producing cells again, although not yet functioning, we have no reason to believe they won’t be in time and her physical OMS symptoms have been improving and some even disappearing. Her hair started to grow back again but the bald appearance and mistakes that she is a boy still stand out as a reminder of her pain endured and struggles to come.

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The next time you see us or Abbigail, know that the answer to your question “how is she” isn’t as easy to answer as you may think. Although the most important thing is she is home with us, there is so much more that can not be explained with words. This road is still winding and unfortunately we do not have an end in sight yet, so please understand that when I say it is complicated or brush it off, that I am not being short, but rather emotional and heartbroken. Almost three years ago we were told she had cancer and OMS but that she was among the “lucky” ones and should be back to normal living before the year was up. Here we are today still on constant alert, administering dozens of medications every 6 hours and still calling CHEO our home. I have a hard time considering that she was “a lucky one.” My heart is aching daily for our constant complicated struggles as a family and for our daughter’s endless pain and suffering, but I am grateful for the hugs each night, the screams for mummy and the love we share as we celebrate Christmas in our new normal way.

DAY +23 Post Transplant Highs and Lows

The last couple weeks since the discovery of this virus, which invaded our little girl’s body, have been physically and emotionally draining for Abbigail, myself and our family. There have been so many ups and downs, highs and lows and far too much uncertainty.

Abbigail began to show signs of improvement come Monday, she was feeling more energetic and less irritable. She had longer periods of “play” and was able to tolerate increased tube feeds.

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That progress was swiftly stolen as she had to undergo an other surgery to replace her central line that had caused her so much torture, pain and frustration the week prior. She went into surgery breaking my heart with her fearful and terrorized cries, and she came out with a new but equally frustrating line, more bruises than I have ever seen, a large hematoma on her neck and shoulder and a few more scars added to her battered body.

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Progressively throughout the week I watched her wakeful moments get shorter and further apart, I anxiously tracked her lowering blood counts and I feared we may be facing a bigger monster than “they” believe. I knew this virus and the treatment to help tame the virus could potentially affect her counts however the doctors were confident that because she ENGRAFTED this week, that it wouldn’t affect her too much. That does not seem to be the case and I am sad to report that her engraftment was not hugely celebrated, as it should have been.

IMG_7058.JPG Once a transplant patient engrafts (begins to produce their own cells), they usually begin to heal, their ailments quickly improve and they are slowly weaned off the medications and sent home shortly there after. We knew this wouldn’t be the case for Abbigail since she is up against this virus, with a post-transplant immune system. Although we have successfully weaned her off of the IV nutrition and the “drip infusion” of hydromorph, she is still on an uphill battle. She has not “eaten” by mouth in weeks and has not taken even a sip of fluids by mouth either. She continues to show frightening signs of viral infection and we haven’t seen a decline in her viral load to date.

I am happy to say that it isn’t all bad; Abbigail still sits up and paints my if toe nail some mornings, she still fights the nurses on vitals and she always smiles when the clown pops in her room. She was at one point last week, laughing, playing and joking around like there was nothing wrong…this was hugely celebrated and noticed by all! She appeared so well “clinically” that her team felt she was ready to be transferred to our home hospital! There was talk that we would aim to have everything in place for a transfer this Tuesday. The thought of taking Abbigail out of this protective “bubble” and into the world outside these unit doors has me in knots. The fear of what I know is possible is sometimes paralyzing but I can not let that fear interfere with Abbigail’s healing or recovery. Going closer to home, to a hospital she has grown up in, with her friends and familiar faces would bring a type of healing we can’t find here. So I quickly set my fears aside and celebrated this milestone the way it should be celebrated! Abbigail has been talking about seeing her Daddy, Molly Penny (home hospital clown), Pam and Jen and all her warrior friends. She was so happy when I told her what would be happening soon.

Unfortunately, over the last 48-72 hours, I feel we have gone backwards again. We are back to her sleeping all the time, aches and pains, higher heart rates, creeping temperatures and highly noticeable OMS symptoms…which all lead me to fear possible secondary infections or the virus spreading further and faster.

We are still holding on to hope that we can keep her stable enough to travel to CHEO next week, but reality is that we are constantly at the mercy of illness, OMS and the world of cancer.

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Sweet dreams my girl. Rest your body. Mama is always here…

DAY +18 – The road less travelled

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

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

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

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

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

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

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

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

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

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

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

DAY +2

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

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

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

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

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

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

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

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

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

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