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. 

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.

Abbigail’s New Beginning and Brave Journey to Healing

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

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

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

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

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

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

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

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

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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!