So much happened…so little changed. 

Public updates have been few and far between this year for several reasons. We have received each and everyone one of your prayers, well wishes and private messages seeking good news about Abbigail and we whole heartedly appreciate them all. Thank you for never forgetting about our precious girl and her battles. It has been a long year with many difficult times but we’ve also had many joys to celebrate as well. Looking back is always bitter sweet, seeing all that we’ve been through, all that Abbigail has accomplished and how far she’s come, but also seeing all that we’ve missed, all the milestones she’s not attained and all that is still ahead for her. Over the last year so much has happened yet so very little has changed. 

Abbigail’s last year started out very roughly with an agressive OMS relapse leaving her relying on her feeding tube for nutrition, losing weight daily, unable to be a kid, stumbling, missing school, in pain, extremely exhausted and overly irritable. We quickly had to increase her medications, double up her in hospital IV treatments every two weeks and watch her body and mind transform again…not for the better. Relapses are very difficult in her body and cognition and sadly result in further brain damage. Although she was able to recover from the acute OMS symptoms, she has not been able to reverse any damage nor reach remission neurologically.  Despite these difficulties though, Abbigail managed to successfully change schools in September and prove that she is capable of so much more than we ever thought! Change is difficult for Abbigail, so this decision to switch schools was not taken lightly and was a challenge for us all however it was so worth it! Her old school has always been so supportive of her and our family and was sad to see her go but it was with their support that we were able to transition Abbigail and all of her services. They will always have a huge place in her heart and mine because I watched my sick little girl light up and bloom so much when she walked through their doors. They set the bar high for her education and support. Thank you will never be enough ❤️ Now that she attends an english speaking school Abbigail has reached levels of speech we didn’t think we’d ever witness, her motor skills and academics have made leaps and bounds which I have strongly attributed to her amazing support system there that has allowed for her growing confidence to shine. I can’t explain to you how it feels to see her accomplishments on paper and to hear her speak about her pride in what she is doing with her peers. You can’t help but smile when you see her light up. 

We couldn’t be prouder of how hard she is working in class! She surprises us daily and hearing her stories from her day brings me so much joy knowing how it “could be” instead of how it is…at least for today. 

Turns out so much happened that I can’t fit it into one post. 

Has it really been that long!?

It’s hard to believe that it has been over six months since my last update.  Abbigail has fought so hard, to come so far, over the last four years, but she has made most of her leaps and bounds these past few months alone. 

  
Just over six months ago Abbigail was once again facing huge life threatning battles that no child should have to. She was admitted to the hospital for a septic blood infection that was, without surprise, rare and not easily treated without strong antibacterial infusions. She spent three long weeks in hospital, mustering the strength to push out the monsters threatning her body and ultimately her life. Once the infections were under control, we were back to discussing the multiple and progressive nodules forming in her liver. Were they an anomaly or more cancer? No one could be sure because nothing with Abbigail has been text book up until that point and everything documented to date has not been able to discount further neoplasm (cancer).  After numerous challenging and cautious fine-needle biopsies, we faced the dreaded consent form for an open liver biopsy and possible resection. Slicing and dicing a liver is never simple or clear cut and isn’t without immense risk for morbidity and even mortality. An other human being, possibly a father himself, had to ask us specifically if we understood that once we left our baby girl in his care, on that cold table, that she possibly may not wake up or that if she did, she would not be the same. Is this even part of real life? Often I find myself wondering these questions. That morning, I signed my name on the dotted line, giving consent to surgeons to open our daughter’s entire thoracic area and examine it for further cancer or at the very least remove a portion for lab analysis. Then I waited. I waited and stared at her empty bed on the fourth floor of CHEO, a place we’ve considered home for far too many years and I waited for the nurse to say she was out of surgery. When the desk clerk’s phone rang that time, I knew it was about Abbigail. I dashed to the elevator, flush, nauseated and petrified. What would he say as he removes his mask and sterile cap? What happened these last few hours in that cold sterile room? Where is my girl? Before he could speak I layed my eyes on her ragged body in recovery and sighed in relief. I sat at her bedside until her intubation tube was removed and she was awake enough to know I was there. The surgeon who has cut into our daughter more times than I can count, along with the radiologist who has invested numerous days and hours analyzing her multiple liver images and studying her nodules, smiled as they both confirmed that surgery was a success. They also confirmed the lab had enough liver sample to examine and diagnose these nodules without having to fully resect an entire lobe of her liver.  After a long few days of epidural pain management, drug reactions and rehabilitation, we were finally transferred from the surgical and rehab unit back to our “home” unit on the oncology ward. Ten long days later, we received  exhilarating  news that it was not cancer but that further lab testing was required from SickKids hospital in Toronto before we could know exactly what the lesions are. Abbigail was feeling better, not eating much by mouth and still recouperating  from an extensive thoracic surgery, but we still could not be discharged. Now, almost a month in hospital, barely home a day or two from our Florida trip, realizing we are never free from this world as we face our worst fears all over again.  After much debate and review from many specialists, near and far, Abbigail was diagnosed with a rare disposition of extramedullary hematopoiesis. Abbigail received large doses of chemotherapy last year, and the theory is that her body has not been able to keep up with blood production post transplant and her bone marrow now is producing blood cells outside of her marrow (i.e. in her organs). This new diagnosis only added to her complicated medical care. Two incurable rare diseases battling inside of our five year old little girl’s body, that has yet to recover from years of cancer treatment and a life altering stem cell transplant that ultimately saved her life last fall. Her scars are gigantic – physical and emotional, but we finally went home after a long month of close calls in hospital. Despite being “out of the woods,” Abbigail now faced new hurdles and we didn’t know then just how big they truly were. 

   
 Abbigail had more than a hundred nodules confined to her liver. Continuously monitoring their activity with imaging and although they had not stopped multiplying, they had yet to spread to other organs. Also closely monitoring her liver health with regular blood work to ensure that these lesions did not affect the basic functions she desperately needed. Abbigail was tired, her entire body covered in cuts, bruises, catheters and scars. Smiling for photos with an NG tube still taped to her sensitive cheek, she didn’t let any of this stop her this summer. We spent every day possible, that we weren’t at CHEO, at our camp. Roasting marshmallows, wading in the waters, making forts and sand castles while chasing the boys. She even made a few new friends and won the hearts of every single other camper in the park. There wasn’t anyone who didn’t know who Abbigail was after her first week there. Memories were cemented in our hearts and despite the hurdles, the pain and sacrifices that don’t cease, we were blessed with an entire summer without a single night in hospital! 

   
   
Once camp season came to a close and the leaves began to fall, Abbigail started school! Something I never allowed myself to think of again after last year because we were so focused on her treatment and survival. She has been surprising us and everyone else with her abilities and potential. She is speaking so many more words. She can now even understand French a bit. She has learned routine, made friends and been able to detach herself from me. Her learning is greatly affected due to the extensive damage to her brain from the OMS as well as the four years of dozens of repeated chemotherapies, but that does not stop her from always trying.  She is part of a regular classroom with all of the support she requires to thrive. We are so proud! 

   
  
 Our spitfire never lets life settle down though, just as she adapted to the new routine, stopped crying when I dropped her off and began to have less OMS episodes at school we were facing difficult decisions regarding her overall health. Abbigail had started losing weight very quickly and without reason other than her appetite and eating habits. Post liver surgery, they inserted an NG tube for her nutrition because when a child has such a huge abdominal surgery, they are not able eat for days due to their “guts” being stunned and paralyzed, meaning unable to digest. So after a week of not eating, having huge stomach pain inside and out, her appetite that was finally returning post transplant had now taken a nose dive. Since June, she continued to lose weight and struggle with her appetite. In September, she had lost a few pounds and it was evident now in her face and it wasn’t long before doctors and specialists were considering a more permanent feeding solution. Abbigail was 50lbs in the summer and although it was an unhealthy weight for her height, we knew it was temporary and that it was caused by steroids. Presently Abbigail is holding at 35 pounds. 

  
That 15 pound lose in a short period of 3 months had us remove the NG tube (in her nose) and have a surgically implanted g-tube directly into her stomach. After almost 5 months without a night in hospital, Abbigail and I were cuddling under nurse and doctor supervision, in the very familiar and oddly enough, comforting walls of her second home once again. December 7th she received her new “tubie” and again our trusted surgeon was successful in cutting through the layers of scar tissue in her abdomen to have the new device inserted. Only a few days to recover from yet again an other stunned tummy surgery and we were home to begin the holiday season with new hope for recovery from yet an other hurdle in the journey. 

   
 This Christmas should have been different though. For so many reasons. We never imagined still being in such a fight for our daughter and we never imagined experiencing the loss that we have. Being a part of a world where kids have cancer and it is normal, becomes scarier the longer you are in it. You form friendships, extend your family and fall in love with the strongest, bravest and most beautiful young souls that walk the earth. When things are good, in cancer world relative terms of course, we laugh, have private little room parties and make today count because we know how fragile it is. We often fall prey to thoughts of tomorrow and we allow ourselves to believe that it will all be ok one day…that is, until it’s not. 

  

   

 November 18th was not ok. Abbigail’s closest friend earned her angel wings far too early. Phoebe left this earth, forever 5 years old. She left her pain, suffering and sadness behind with her grieving mama, daddy, big sister and many family and friends. For Phoebe’s family, tomorrow is now too hard to face because today is already so painful without her here. My heart has been aching since that day. Abbigail  understands Phoebe is gone, that we can no longer visit or play with her and that we can only see her in our photos and videos but she often asks “but mama where Phoebe?” It breaks my heart on so many levels. Losing Phoebe was harder than I could have ever imagined it would be. Christmas this year was bittersweet. We weren’t in intense treatment, there were no life-threatening emergencies or hospital sleep overs and for that we were blessed and grateful. But we also felt a huge sense of lose and guilt. Every twinkling light had new meaning, each gift unwrapped was a reminder that not everyone was so lucky. The kids were spoiled and had “the best Christmas ever” visiting family and making memories but I couldn’t help but carry the guilt with me. My friends also got to spend the holidays out of hospital for the time in five years too but for very different reasons. Phoebe’s passing hurt. It was painful. Unfair. Phoebe lives on though and will forever be our Christmas angel, reminding us to never lose faith and hope, just as she never did! As the years pass, treatments continue and Abbigail grows up, she will forever have Phoebe in her heart, watching over her…that I believe.   
Today, Abbigail continues to receive immunosuppressive therapies both in hospital and at home. She goes to CHEO for infusion treatments every two weeks and continues with her daily oral treatments at home. Her medication list, for treatment and for symptoms caused by the treatments, is still very long and disheartening but in a world where there is very little known about her disease we do not have many options left. We are currently trying to slowly taper her off of the very aggressive steroid treatments she’s been on for four years in hopes that we don’t create the perfect storm in her body for an OMS relapse. If she regresses once the steroids exit her system completely we will have hit a wall in treatment options. 

  

    

For those new to Abbigails journey or for anyone who is still confused about OMS, it is a rare (1 in 10 million) disease that presently is without a cure. Children who are doing well with OMS today are said to be in “neurological remission” however are prey to relapse or regression at any time and it is believed by the few specialists in the world, that these children will suffer several of these relapses in a lifetime. A regression could present itself as slight shakiness and imbalance, darting eyes, uncontrollable and aggravated behaviour, insomnia, muscle jerks and trunk or full body ataxia. These small symptoms can be triggered by any immune response; which are fatigue, stress (physical and mental), certain medications and sedatives or the more obvious, infections. Once the immune system is triggered, Abbigail’s brain is caught in a crossfire. Simply put, OMS is an immune disease characterized by her immune system being programmed to attack particular cells which were present in her cancerous tumours but that are also present in her brain. This means that part of her brain, the part that controls movement, stability, speech, some learning and development as well as behaviour and sleep, have the identical cells that her cancer has. When Abbigail’s immune system is activated, it begins to fight and destroy the cells in her brain, causing multiple cells to misfire and often creating the perfect environment for brain damage and that is when we begin to see the symptoms described above. If the damage caused is extensive enough, the regression in Abbigail’s abilities and functions could quickly become a relapse in the disease, requiring more than patience and antiviral or antibiotic treatment. During a relapse, OMS must be stopped as quickly as possible to minimize the permanent brain damage that is occurring. At diagnoses, the peak of her illness, and when she has relapsed in the past, She has completely lost the ability to speak, slurring her sounds, has also lost control of her trunk, losing the ability to even sit up on her own, she’s even lost her ability to walk and crawl during relapses and self feeding was impossible. This is when we would begin more chemotherapy, new experimental drugs and stronger immunosuppressive treatments to stop her immune system from functioning, putting her back in that vulnerable and dangerous state she knows all too well. 

So this is where Abbigail finds herself in treatment today. Hopeful we can wean her off of the treatments that are affecting her growth and long term bone health but also fearful to remove the drugs that have kept her brain safe from relapses over the last two years. She has done each and every treatment protocol and trial available to children in Canada and the US to date and is still unable to wean from the destructive drugs keeping her immune system at bae. 

I can’t thank you all enough for your support and prayers throughout this journey and for checking in over the last few months during my online absense. Abbigail and our family is continuously blessed by you all! Thank you!

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 -5

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

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

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

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

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

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

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

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Growing up with Molly Penny’s Love

Growing up in a hospital isn’t all bad.  For Abbigail, she has friends, fun and Molly.  Since the very first few days, Abbigail has found the joy within those grey walls and she brought her contagious smile no nurse could resist.  So even on those dreaded inpatient days, Abbigail was happy in the playroom, riding her cars down the halls when she couldn’t walk anymore, pulling her IV pole with her and trying to catch up to the older kids.  It is rare to see a young child on 4N with self pity.  Much like Abbigail, most of them do not know any different since their life has always been at the hospital.  Luckily though, on those difficult days where procedures were feared, and chemos were hard, Molly Penny was only a holler away.  In the halls of CHEO walks a retired ER nurse who just couldn’t stay away from our kids.  Her heart beats in the halls, she creates shrieks of joy and laughter in the waiting rooms, and she makes CHEO a home for children away from home for so long.  With the help of the amazing Child Life Specialist, Molly Penny is by far one of the reasons Abbigail has gotten through some of her darkest days and toughest tears…

Abbigail has a lifetime at this hospital behind her already and still more ahead of her.  Having a disease with no cure means just that.  We are so grateful to have Molly by our sides when we are scared, upset or just need a good old fashioned laugh or two.  She doesn’t just help Abbigail and all of the kids, she is always making sure us parents are taken care of too, whether its just a coffee or a huge loving hug.  She is a huge part of CHEO’s heart and we will always keep her in our hearts. We love you Molly!

 

This morning we are off to CHEO again, to hopefully get more answers and a clear path forward for the neuroblastoma so that we can return to focusing on the OMS and giving some quality of life back to our precious girl. Today Abbigail will enter the “big orange door” again to Nuclear Medicine where she will have an other substance injected into her veins to be imaged which is more specific to bones. She has had this scan before and it is much the same as last week’s so let’s keep our fingers crossed that she is just as brave again! Mama is very happy to be by her side today, these moments are milestones for her, just as walking, talking and going to school are for every other child, and I can’t bare to miss anymore. I don’t ever want her or the boys to doubts desire to be there for them through it all, including the darker milestones.

It is with a hopeful heart and a desire for relief for our girl that I ask you to pray and offer your good thoughts today as she faces more scans, tests and procedures.

We may walk in through the orange door with fear and uncertainty but we will walk out with faith that no matter what happens afterwards, we will get through it together.

If you take a moment to stop and listen today, you will hear the unique sound of a young girl, fighting for her life, through joy and laughter with Molly Penny and her love. Just listen…

Growth and strength through pain…

“I have laid my child in a surgeon’s arms, I have slept upright in a hospital chair, I have listened to the beeping of machines and been thankful, I have smiled through the tears and I have found strength where there wasn’t any left. A Mother’s love is the fuel that enables a normal human being to do the impossible.”

Today as I pushed through an other day of deafening silence at work, missing my babies and torturing myself with thoughts of Abbigail facing her fears without me, she was doing just that! Abbigail, accompanied by her daddy and nana, was at CHEO for part one of her MIBG scan* (see below for detailed definition). I’m so proud of how she handled herself, with maturity beyond expectations and immense bravery I’ve never seen in her before. I am quickly becoming aware that my little girl, diagnosed even before becoming a toddler, is no longer that same baby. She gets blood work done without crying or even flinching, she has her port accessed by a large needle with little fuss and no more tears, she can push through a day full of procedures and long treatments and she no longer needs her “mimi” (blankie/soother contraption) attached to her at all times. She is growing up and I am having a difficult time coming to terms with this reality.

While other children her age were learning to talk, count, play and socialize, Abbigail was fighting for her life and relearning most infant motor skills, unable to stand on her own and depending on me for everything, just as an infant would. It wasn’t until recently that she began to step forward developmentally in larger strides and I saw her becoming a kid, outgrowing that “giant baby” persona she has been fighting to grow away from for far too long. This development is just the miracle we had been praying for, it is a small yet triumphant step in the right direction towards OMS remission and I couldn’t be happier that we have been given this ray of hope for our girl, but as her mom, I can’t help but feel a certain aching too. She has needed me for everything, and through everything for so long, that she has naturally become part of my identity and I do not know where to go from here, because she is about to face some of her toughest days thus far, as she prepares for her biggest battle with the monsters that are OMS and cancer. This will be a new battle for me too because I will have to adapt and learn how best to support and help my baby girl…who isn’t a baby anymore. All of the pains and joys have always somehow worked together to propel me through,to be tougher, stronger and to be exactly what my girl needs throughout this journey.

Today Abbigail needed me to get through the day at work so that I could hurry home and she could proudly “communicate” to me about her big brave day at the hospital; where she faced the “big orange door” that hid behind it, Scott, the nuclear medicine man and Colleen, the technician who straps her to the scanner to search for cancer in her not-so-tiny-anymore body. So that is what I did for her today…

“You do not know how strong you are until being strong is your only choice.”

***MIBG (metaiodobenzylguanidine) is a substance that gathers in most neuroblastoma tumors. When MIBG is combined with radioactive iodine (usually I123) and injected into the blood it provides a specific way to identify primary and metastatic (spread) disease and is helpful for locating both bone and soft tissue tumors. Prior to the test, the child will receive an injection (through an I.V. or indwelling catheter) with the I123-MIBG. Scans will be done 24 hours and sometimes again at 48 hours following the injection. Cancerous cells will appear on the scan as bright spots. There are also some normal organs that take up I123-MIBG and appear bright. The patient needs to lie still on a table while the scanner takes picture around the body. An MIBG scan does not hurt, but it may be difficult or uncomfortable for a child to lie still for an hour. Some children may need sedation to be able to relax and lie still for the whole test. Before and after the test, the patient will need to take an oral medication, potassium iodide (SSKI or Lugol’s solution), to protect the thyroid gland from the radioactive iodine that normally would be picked up by that gland.

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After You’ve Heard Those Words

After you’ve heard those words; “your daughter has cancer,” there are many ways it can go and there is really no way to know for sure…this becomes clearer over time.

Diagnosis, active treatment, end of treatment, cancer comes back (recurrence), active treatment again, possible survivorship with ongoing treatment and life-long sequelae, secondary cancers caused by the treatments that saved their life initially or an other recurrence and the cycle starts again and again with very little light some days.

With cancer, all sorts of things can change at any time, for better or for worse. While it would be great to know what to expect, there is no way to predict how anyone will do.

Tuesday Abbigail shared her radiant personality with her MRI nurses for the umpteenth time. This was her regularly scheduled scan to check her abdomen and pelvis to see how her liver tumour is. Last night we received the much anticipated call from her oncologist to let us know the results. We knew the tumour would still be there, but what we were praying for was it’s stability and those prayers were answered. Her liver lesion continues to stay stable with little to no growth or spread. As I received this news, driving with three kids behind me in their seats, I couldn’t help but hear pitty, sadness and disbelief on the other end as she said my name. She explained that the radiologist reported suspicion of metastasized neuroblastoma within the bone marrow of her pelvis. We used to worry about a possible relapse of her cancer, then it did return. Now we may never read an other report that says Abbigail is NED (no evidence of disease) but we come as close as we can each time they scan and report that her liver tumour remains stable. Last night our “normal” changed again.

Today I had to kiss my kids goodbye and tell my baby girl, that for the first time since diagnosis, Mama wouldn’t be there to hold her hand while she got her bloodwork done. I returned to work and it turns out it was harder today on me than on her thankfully. Next week will prove to be much more difficult than I could have ever imagined my return to work being. Due to the recent news of this suspicious lesion in her pelvis area, Abbigail will have to face her biggest fear at CHEO. She will have to do it without Mama for the very first time. This two-day procedure that will be performed next week, called an MIBG scan, involves injecting radioactive dye into her body, which will then be scanned 24hrs later to view any neuroblastoma that may be active in her little body. I walked the halls at work today with one of those “everything is fine” smiles when in reality my world was crumbling before me once again. My baby girl may have to face the innocence robbing disease that childhood cancer is once again and I am petrified at what it will do to her. Mentally I wasn’t at work, I was in a hospital isolation room watching my baby be infused with life saving poison again and I could not understand why life has put me in this office chair and not by her side.

I can’t count how many times today I was asked how I do it? And I heard countless times that “I am strong and amazing.” They want to know how we are all doing, especially Abbigail. It is difficult to relive the daily pain so publicly but honestly if you ask, I’m not strong, or remarkable…I’m a mom. I’m angry. Furious. I have never been so mad in my life at anything as I am at cancer. It messed with the wrong family this time. I recount her journey countless times as I run into people I haven’t seen in a while or others who recognize me and want to know more than the words I share online. I share intimate photos of Abbigail publicly. I open up our journey to strangers. I publicly journal my feelings as a mother who is experiencing the agonizing and ruthless pain cancer inflicted on my baby. No matter how raw and unpolished my words, feelings or photos are at times, I want the world to know who my beautiful Abbigail is; strong, brave, fierce, so loving and one of a kind! These reasons are why I appear strong, and why I share the worst days of my life so publicly.

I have become a different person since February 2012 when I was introduced to the world of childhood cancer in the worst possible way but I never want Abbigail to see anything less than what I pray for and hope for each and every time I beg for mercy. Today I was weak, I cried driving to work, I laughed at jokes I didn’t hear because my mind was clouded with fears for my daughters future…her life. Today I was not brave, I wasn’t strong, but that will not keep me from striving for better tomorrow as I pull away from my waving babies. I must always think positive, never give up hope, praise my children on any sign of improvement, and most importantly of all, never let Abbigail or the boys see me give up. I have become Abby’s crutch during this journey and she will react to my feelings and fears but will also react to my positive thinking.

So tomorrow I will report to work, I will support my husband as he holds our daughter through her fears for the first time alone and I will continue to pray and have faith that Abbigail’s fate extends beyond cancer because after you’ve heard “those words,” your world is never the same again and you realize that the control you once thought you had, never really existed.