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.

Paralyzed in Fear

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

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

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

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

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

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

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

“There will be a day”

We began this journey 15 months ago. Full of questions, fears and sadness, we took it one day at a time, one procedure and one treatment at a time, looking forward to the end of the 12 month long protocol {treatment plan} when we could go back to being a family without cancer and hospitals. If you do the math, we are three months past that date and here we are looking into our sleeping daughter’s room as she tries to dream of princesses and ponies, painfully discussing the next steps to bring our daughter back to health. This journey didn’t get easier, the days don’t go by without pain and sadness, and my sweet little baby girl is getting tired. All those months ago, Abbigail was just a little baby, not even two years old and now we countdown the few days left before she turns three and we are no closer to helping our little girl than we were 15 months ago.

I too am tired and looking back on all of the pain I let them put her through, all of the procedures, cuts and needles that were necessary and all of the poison pumped through her tender body makes me ache more than any mother could imagine, more than anyone will ever know unless they walked in my shoes. Tonight, I can’t do it. I won’t recount her journey, I won’t revisit those endless days and nights I watched her lay limp and lifeless as they put her through hell time and time again. I hope my sadness doesn’t cloud my writing, please bare with me.

Abbigail completed her 2nd course of chemotherapy on March 28th; weekly treatments of 6 hours for 4 weeks, just in time for Easter. We were hopeful. She was tired over Easter weekend but that was expected as she was also undergoing home treatment {pulses of steroids} that same weekend. The following week was so encouraging, uplifting and we thought for a few days that we might have finally found the perfect cocktail of poisonous drugs to help our daughter be”normal.” You see with OMS, you undergo many treatments for many years {average of 7 years of intense and active treatment} before a baseline or remission is reached. Remissions for OMS children are short lived, with relapses lurking at every corner, with every cold, flu or virus floating in the air of schools, birthday parties and public places. We now know all of this, we now know that the 12 month plan we were given 15 months ago was just an unrealistic “hope” our oncologist at the time felt we needed to hear to make it to the next day, the next hour. So here we are now, a week or two after our last chemo and we see improvements, not great leaps or huge successes, but little improvements that give us hope. She doesn’t scream all day, she sleeps longer, she didn’t fight with herself as much, her brother’s weren’t being attacked, and she wasn’t as wobbly or clumsy as she had been in the past months. Abbigail really gave herself and us a few good days where we thought she was beating the odds. Then the painful reality hit again as I watched my baby girl flip like a switch in the matter of days. This time was different than all the past “relapses” {I use the term relapses lightly as she has yet to reach a neurological remission, so she technically doesn’t relapse}, this time Abbigail was showing all the signs and symptoms of her initial presentation before diagnosis. She began stumbling a bit more than usual, stomping as she ran and fumbling into doors, walls, tables and toys as if she were unbalanced again. Her moods, behaviours and cognitive abilities began to decline; screaming almost all day, easily getting irritated and quickly getting frustrated, her words she used last week were not mumbles and sometimes lump sounds making no sense. Abbigail isn’t always showing acute OMS symptoms, she makes short visits to family and friends, can manage an outing to the grocery store with minor disturbances {similar to that of a spoiled toddler and an incompetent mother} but without notice and without prejudice, an attack occurs and she smacks a fellow playmate, pushes a child walking in the store or bites herself until she breaks the skin as she screams in a fit of rage. Abbigail now, more than ever before in this journey, requires supervision and management 24 hours a day. As her mama I call it “24 hours of undivided attention and unconditional love.” In the last few days, I’ve experienced many moments that have brought me back to those dreadful days before she was diagnosed, those days when I feared the worst and when I see her eyes dancing again, I am paralyzed in fear as I remember the doctor walking in to tell me my baby had cancer. Our bubbly, adventurous and playful daughter is now lethargic, exhausted, sad, depressed-like and most days she is living a very low quality life more hours than not. I have slowly watched my innocent girl be robbed of her days as a toddler, and now we are going to have to hold her hand and explain to her that the fight isn’t over, that she must endure more chemo, more needles, pokes, sedations, tests, procedures and treatments. Treatments that would be lethal to some adults, treatments that compromise her growing body and alter her immune system not yet matured in ways that will affect her for the rest of her life. So Abbigail’s last 15 months of treatments didn’t work. The chemotherapy we had such high hopes for only weeks ago has let us down. We are back at square one, with no more treatment options left in Canada.

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I received the call this week, from Abbigail’s oncologist {whom we absolutely trust and value} and case manager, that she believes in her heart that we have hit a wall here. We have tried all of the treatment options offered in Canada and they have all failed our daughter. This journey will now take us all the way to Springfield, Illinois, USA to meet the infamous Dr. Pranzatelli, the founder of the National Pediatric Myoclonus Centre (NPMC). This is the only centre of its kind in the entire world and he is the only doctor who has treated and consulted on 120 patients worldwide in his carrier. An oncologist could only dream of ever hearing or even seeing an OMS patient, let alone treating one in their carrier and he has helped hundreds reach their baseline functions after all of the damage OMS caused their brains, bodies and lives. We are hopeful, excited and anxious…we are fearful, saddened and anxious. This life, this world we live in now is full of it’s ups and downs and we take them all with the knowledge now that each moment, regardless of their nature, are precious and a gift. After a rough morning, holding my daughter tightly so she doesn’t hurt herself, or cuddling for hours because she can’t muster the energy to simply play, I see tiny moments of joy and happiness in her eyes and I capture them in my mind {and camera lol} and focus on them when the next wave of symptoms comes roaring in our lives.

With all this said, the next chapter in healing our daughter takes us to Illinois. We have no idea what is there, we have no clue what to expect and we have very little details as to what sort of procedures and treatments are in store for Abbigail, but we are going to take it one day at a time as our life now implies, we are going to fight together as a family, and we will continue to hope that there will be a day with no more tears, no more pain and no more fears.

July 23 2011 {always by each other's side}
July 23 2011
{always by each other’s side}

F!!! Fears, Frustrations and Failures!

Today we found ourselves driving to CHEO early in the morning once again for our weekly bloodwork and oncology appointment. Although I’ve driven these same 140km over 90 times this last year, the drive never gets easier. I am not talking about the baby crying to be changed or fed, or Abbigail’s relentless screams, outbursts or attacks, those are only small parts of our everyday life which seem far easier to deal with when faced with the one and a half hour feeling of anxiety felt during my drive to the clinic. I’m always finding myself swallowed by the fear of each treatment, it’s side effects and possible reactions, the fear that comes with each blood draw not knowing if bad news looms from the lab and the fears that consume the room of each of our visits with the oncologist. These fears can sometimes paralyze you.

Finally got through traffic this morning and I sit at the stop light only blocks from the hospital and I am so frustrated at the person in front of me for not claiming the intersection therefore forcing me to wait an other cycle before turning left! ARG! Don’t they know what Im dealing with? Go already! Frustrations are common when we look at our life, Matthew and I are burdened with our daughter’s treatment success evaluation. There is no blood test or scan or procedure to tell us how Abbigail is doing, just us! So here I an about to enter the clinic full of fear and frustration. What else could make this day so F!?!

We are casual people, friends with most of the other families in the adjacent rooms, so shutting the door to discuss Abbigail’s latest rash or recent symptoms is not common. Today, the nurse took both my kids to the playroom, sending me to room 22 where I am met by our case manager and primary oncologist, she shuts the door. My heart races and I immediately want to run, grab my babies and go to the toy store! The “feeling” I had this morning waking up is about to find its merit. I was anxious all week for this appointment because I “knew” this was the appointment where she would tell me that the chemo didn’t work. Having done two heavy rounds of chemotherapy already in this protocol which called for only one, I have to wonder if we are grasping at straws now. After we lighten the air with some casual talk, I clench my knuckles and ask if we’ve failed my sweet Abbigail…have we hit a wall?

Abbigail is not improving. Her symptoms continue to persist and even worsen. She is miserable, lethargic at times, irritable at best for most waking hours and absolutely unpredictable when it comes to her rage and attacks. Her walking has recently shown a slight decrease in ability (stomp walking, tiptoeing and unbalanced) seeing her fall a few times a day has me so afraid as it brings me back to those initial days before diagnosis. She is also back to hurting herself and siblings at every chance she gets. I am forced to keep her at my side every minute of every day. At least I get a lot of cuddles and time on the floor with my babies!

…but where do we go from here? With much discussion, debate and evaluation on both my part and our doctor’s, we agree to touch base with Dr. P in the U.S. He has consulted and treated 120 OMS children from all over the globe, he has got to have answers!!! So the nurse opens the door and I see my babies…I’ve just realized that Abbigail’s immune system is still in attack mode and her brain is not safe yet, but there are two of my three beautiful children smiling at me and for a moment I wasn’t worrying. ToysRus, then that long drive home again…

Looking forward to the weekend doing nothing but enjoying the simple pleasures of being a mom to three beautiful children. Crafts, mud puddles, church with friends and some much needed cuddling! I will save the worrying for Monday as I await the call that will hopefully change things for Abbigail and our family.

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Her Journey Continues…

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

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

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

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

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

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

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