The face of cancer today

Today is one more of those heart breaking, fear instilling, life changing days. This morning Abbigail faces an other difficult day as she faces the ever feared anaesthetic gas mask, undergoing an other MRI. We take a look at her liver tumour and surrounding area to see what this dreaded cancer has been doing in her body since January and her last chemo treatment.

Our princess has had some of the most memorable days recently visiting the enchanted disney princess castle, having tea with her favourite princess and having a true princess makeover to be The World of Disney’s honorary princess of the day in Florida however none of these magical moments came without difficulty. Increasing medications, recurrent infections, walking difficulties, more pains and increasing OMS symptoms all have been part of her days too. We hope for some answers this week, some guidance, new plans from the OMS specialists in the USA and we will seek further pain resolution as we see specialists in urology and nephrology.

There are always going to be silver linings and positive outlooks to be had, even in our sometimes dark and lonely fight with cancer but “what cancer can’t do” sometimes misleads outsiders into thinking that after the chemo has run through and the throwing up has stopped, that life returns to normal.

Cancer can break our spirits and cancer does change you! It changed our whole family.

Throughout this long battle we’ve been fortunate to have a strong support system within our family and communities both near and far, but we still struggle to get people to understand our day-to-day life and the difficulties we face. Abbigail is in constant battle with herself, not understanding what is happening to her and why she must endure this suffering and frustrations are heightened as she still remains without speech. Her doctors continue to price the puzzles together as her cancer still hasn’t responded and her OMS continues to progress and change as she grows. Hospital stays, ER visits and unexpected diagnostic procedures are not uncommon in an average month. Multiple CHEO visits weekly is still the norm. Her rare disease has us seeking specialists out of country and travelling which leads to battles with OHIP and insurance companies. Fear, anxiety and worries are constant in our lives, often stealing our breath, haunting our dreams and robbing our simple joys.

Sadly, most people do not want to hear these realities and at certain points we feel our support fading away. Other cancer warriors and their families share this loss and pain but without living through this storm, we can’t assume understanding from others. Some assume that treatment makes you better, that things become OK, that life goes back to “normal.” However, there is no normal in cancer-land. Cancer survivors have to define a new sense of normal, often daily and in our case, it’s hourly most days. How can others understand what we have to live with everyday?

My blog, my photographs, they show this daily life. They humanize the face of cancer, on the face of our daughter. They show the challenge, difficulty, fear, sadness and loneliness that we face, that Abbigail faces, as she battles these diseases. Most important of all, they show our Love. My post aren’t always grammatically correct, poetic or insightful and my photographs aren’t professional but they are true, real, raw emotion and very true of the day to day life we have had to accept and they give a real face to the word cancer. “They do not define us, but they are us.”

Cancer is in the news daily, and maybe, through these photographs, the next time a cancer patient is asked how he or she is doing, along with listening, the answer will be met with more knowledge, empathy, deeper understanding, sincere caring and heartfelt concern.

We still laugh, love and cherish…maybe even a little harder now that we know what tomorrow could bring but next time we say “we are good” know that it is all relative and your good and ours are different.

Prayers and support are appreciated as we face this terrifying monster today and as Abbigail faces an other of her fears in this world she lives.

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Blessings & Silver Linings

We are lucky. I am lucky. Abbigail is alive and with us. I can tuck her in, kiss her cheeks and watch her grow…no matter what that may entail, at the end of the day I get to rock her, cuddle her and tuck her in to bed…some are not so lucky.

Our road is long, it’s scary and it’s painful to say the least. Most days bring challenges, hurt and sadness no parent ever imagines facing, but our family is together and that creates strength. When the lights are out and my thoughts are alone, I try to focus on that strength, our blessings of the day passed and the silver linings which we find along this road and our journey, and I pray for a brighter, better day tomorrow…so if you ask yourself how we “do it,” this is how I’ve learned to at least cope with the impossible.

We never know how strong we truly are until being strong is our only choice.

The last two weeks have been busy, exhausting, trying, scary, but joyous.

We watched Abbigail fail to respond to her last round of chemos, we saw her deteriorate a little more and learned that our team of doctors feels all their efforts are exhausted and failed over the last 15 months.

We started the process to begin this new chapter in our journey, which is beyond confusing and overwhelming to say the least but at least it is a step in the right direction….towards healing. Hours of research, planning, networking and worrying. It doesn’t get easier to swallow and as the day approaches for us to leave the country, the anxiety builds and clouds hope.

Abbigail and I were spoiled this past week with a visit from our Godmother! We shopped until the firecracker couldn’t shop no more! Abbigail also got some extra love at the clinic during our weekly visit, sharing yet an other birthday with the nurses and staff!

Thank You Matante Lise <3 Sleep Over, Shopping & Coming to CHEO
Birthday Surprises at CHEO {balloons, presents, extra big hugs} & Shopping with Matante Lise!

We also participated in the CN Cycle for CHEO last Sunday with our Kisses for Abbigail team, consisting of family an friends who have supported us and Abbigail throughout this journey and who helped us raise over $4,500 for Children’s Cancer in Ottawa Region. It was emotional and draining but amazing!

Most of our Team {minus some cousins & my mom who went m.i.a.}
Most of our Team {minus some cousins & my mom who went m.i.a.}

On Monday we celebrated, at home, our precious girl turning three! What a beautiful day that was! She had so much joy and pride it warmed my heart in a way I haven’t experienced in a long time; seeing her raise her fingers in attempt to communicate her age and her excitement knowing this day was hers alone. Abbigail received mail from strangers, cards and gifts from near and far and enjoyed cupcakes and gifts of pure love at home. I went to bed exhausted but genuinely happy knowing Abbigail smiled an understood it was her day. ❤

Family Celebration Post CN Cycle in Ottawa with the Lebeau's
Family Celebration Post CN Cycle in Ottawa with the Lebeau’s
A Day of Joy and Grattitude <#  Happy Birthday our Sweet Little Girl
A Day of Joy & Gratitude
Happy Birthday our Sweet Little Girl

The last few days were filled with appointments and preparations for our upcoming travels for hope but we managed to squeeze in a great night of family fun at William’s school where Abbigail and William enjoyed being kids and we chose not to worry for one evening! They ran with joy in their hearts, bounced without fears and inhaled cotton candy, snow cones and candy without worry. They enjoyed the giggles of balloon creations and creativity of face painting. Abbigail and William smiled all night long!

Lots of laughter and fun!
Lots of laughter and fun!

Yesterday Abbigail spent the day at the child’s cancer clinic (CHEO MDU) and received her monthly treatment. We were there for most of the day, where she visited a few of her fighting friends and then she quickly lost steam and slept through most of her treatment. She was quite lethargic and irritable but she was able to enjoy a short visit with great friends before the infusion finished and we were on our way home.

May 10th 2013 - Strength through her 17th IVIg infusion {one of her monthly treatments}
May 10th 2013 – Strength through her 17th IVIg infusion {one of her monthly treatments}

Just to clarify, Abbigail continues with her treatments as her last protocol (treatment plan) stipulates, despite its failure to send her into remission, because slowing or stoping any of her treatments or medications right now, allow for her immune system to go on attacking her brain again. To you, Abbigail looks good in the carefully chosen photos I post, the odd galavanting to the store on her “good days” or her short and manipulated visits with friends/family. To you she is doing great…to Abbigail, she is in pain at times, she is exhausted and doesn’t understand why her body is fighting her so hard. Abbigail’s moments of “normalcy” and appearance of health depend solely on the treatments and meds. A human being can not live through a lifetime dosing of immunosuppressive drugs, chemo therapies and transfusions. If we stop her treatments today or if we even lower a dose of her meds for a day she quickly deteriorates faster and faster and before the end of the week she would be unable to walk, crawl or even sit and it wouldn’t be long before she lost the few words she currently has or her motor abilities and cognitive functions. Abbigail will continue to “be treated” until her new doctor in the USA can come up with a more aggressive protocol that we hope will allow her immune system to function at a safer level and put her into remission, meaning no more chemo treatments to keep her “normal”.

Details are coming together and our trip to the U.S. for answers and hope should be happening very soon…but for now we wait, enjoy what has been given to us and try to worry a little less, leaving more room for enjoyment and gratitude.

We are lucky. I am lucky. Abbigail is alive and with us. I can tuck her in, kiss her cheeks and watch her grow…no matter what that may entail, at the end of the day I get to rock her, cuddle her and tuck her in to bed…some are not so lucky.

Tomorrow is Mother’s Day and I am a lucky mom with three beautiful and wonderful children to celebrate.

If I haven’t said it enough, or if my thanks and gratitude have yet to reach you, please know that I appreciate you following Abbigail’s journey, sharing her story with friends and family and for reading about how this has affected and changed us and how we now live life and see the world. I am thankful for your continued support and prayers. I hope that I have kept you informed as much as I can…mustering the heart and stomach to relive some of the most painful times of my life is not an easy feat, even when I am sneaky enough to type my misspelled posts from my phone.

Emotions Running Fast

Whoa! Where did those tears come from? Almost 15 months and I have managed to keep those from rolling in front of others. Today seemed to bring about many thoughts, feelings, fears, and emotions I had been bottling up for so long, fearing they might be seen or heard with judgement or worse, pitty. For the most part, up until now, my tears have fallen on my pillow. The tears of fear for my baby girl’s future, of sadness for the unfairness, the endless pain and suffering she endures, and the tears for our family and the battle all my boys, husband included, must face too. All of these tears, soaked into the pillow for so many months…then today.

Today began with many of the daily frustrations that come with the new territory; family with a “special needs” child. I can’t believe I am saying this “out loud.” My precious girl has always been special, but now she has special needs, needs that I may not always be able to fill, needs that require extraordinary measures at times, and needs that require special attention, specialized care and therapy. Today was the first time I may have swallowed that pill. This new reality that I never really “saw” until now. I have never feared going out with the kids, having fun as a family, taking all of the kids with us to an event, gathering or celebration. I am never worried of how they will act, if they will lose their temper or patience or if I will too, I have always loved bringing my kids along with me anywhere I go and I have even travelled alone with the three kids without fear. Today was different. Today I saw our life through a different lens and today I was hurt. Before it was even 7am, I found myself so worn down and so exhausted that I couldn’t imagine how I would get us out the door, let alone get us through the day, week or next months. I am their mom, how is it that I can’t make it and it is only 7am? My shoulders dropped, head bowed and the tears welled in my eyes. This pain was knotted in my throat it seemed. The lump grew a size bigger this morning as I realized our lives were indeed different and will not be returning to “normal.”

We did eventually get out the door and off we went, van packed with balloons, cheer, our family and smiles of hope, hope for a great day! Today was the CN Cycle for CHEO, Candlelighters and RMH {benefiting childhood cancer research and famillies}. Today we were spending the day with family and friends and fellow warriors with one goal in mind, to kiss cancer goodbye together. Our Team Kisses for Abbigail set out to do that and raised over $4,500 on our own!!! The morning was rushed, the kids were anxious, I was tired and stressed over insignificant things, so when we pulled up to the event, and I got out to see dozens, and I mean dozens of people, wearing white, all there to honour our daughter, I couldn’t help but cry. I couldn’t help but feel so much love and so much support. We have the most amazing support system of family and friends who came out in the heat to proudly wear a piece of cardboard that represented our personal fight with cancer this year. To many, this was an event to raise money for Childhood Cancer Research and it was that, but to me it was a lot more too. Watching so many people walk along side us, travel from far to just be there for support, carry our children, laugh with us and give us some good old fashioned hugs was absolutely heartwarming and amazing. Today was amazing! The event was a success, raising over $725K for Pediatric Cancer in Ottawa, it was also a success at letting me open my heart to the blessings of this “new normal.”

As the day culminated and I splashed around with the kids as they bathed before bed, I looked into my Abbigail’s eyes and saw my two year old baby girl, my warrior, my hero…battered and bruised, but never broken. Today was the last time I tucked in my “baby” as she will be three tomorrow! My “baby” girl will be one year older. She will have fought through an other year! We always seem to mourn our children’s birthdays, as the milestones are one year closer to them leaving our home, making a family of their own and just simply growing up, but tonight I felt happy she was going to be celebrating a birthday tomorrow. I am excited to see her blow out yet an other candle, open gifts, tear paper, throw cards and be a three year old. My baby is growing up and we have the privilege to watch and be a part of it. They are our gifts and for that I am grateful for and each year I will meet these milestones with happiness and gratitude for an other year of memories, sorrows felt together, laughter and joys. We are not all so lucky to have one more birthday. Although I am crying as I write this, I will not be sad that she is growing up, I will be happy that she is with me to blow out this third candle tomorrow. The tears will flow tomorrow, but they will be tears of absolute joy and happiness for the loving family that we have created Matthew. ❤

As I tucked our kids into bed tonight, I did not see the frustration from this morning, I did not hear screams or outbursts, I wasn’t worried about the time, the mess or the next day and what it might bring. As I tucked them into bed, I felt like the luckiest woman on earth. Here I am with three beautiful children and my husband at my side, and all of the blessings that come with the support of family and friends. The stresses of the morning, the fears of the future and the tears I wept today were pushed aside by their kisses goodnight. This journey is hard on us all and it is not something I can always express but at the end of the day, we are together and that is half the battle. Matthew, William, Abbigail and Madden, you are my world and nothing means more to me than your smiles, love and happiness. You are worth all of the tears I must weep…

 

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I am wearing a pair of shoes.
They are ugly shoes.
Uncomfortable shoes.
I hate my shoes.
Each day I wear them, and each day I wish I had another pair.
Some days my shoes hurt so bad that I do not think I can take another step.
Yet, I continue to wear them.
I get funny looks wearing these shoes.
They are looks of sympathy.
I can tell in others eyes that they are glad they are my shoes and not theirs.
They never talk about my shoes.
To learn how awful my shoes are might make them uncomfortable.
To truly understand these shoes you must walk in them.
But, once you put them on, you can never take them off.
I now realize that I am not the only one who wears these shoes.
There are many pairs in this world.
Some woman are like me and ache daily as they try and walk in them.
Some have learned how to walk in them so they don’t hurt quite as much.
Some have worn the shoes so long that days will go by before they think about how much they hurt.

We walk more carefully but we are stronger now...  {Walking before Diagnosis}
We walk more carefully but we are stronger now…
{Walking before Diagnosis}

No woman deserves to wear these shoes.
Yet, because of these shoes I am a stronger woman.
These shoes have given me the strength to face anything.
They have made me who I am.
I will forever walk in these shoes…

{adapted from an unknown source}

“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}

Our Firecracker…Explosive but Beautiful, Unique & Radiant.

Oh Abbigail, our Firecracker, you never cease to shine through your struggles!

Today was a gorgeous day outside, the skies were blue, grass was sprouting and the toys aren’t buried in the snow anymore! Abbigail saw the colours in the windows of her toys from what seemed like a lifetime ago. This winter was long and for a child like Abbigail, it was longer! With a compromised immune system the entire winter, 8 rounds of chemo and a spirited personality we didn’t go anywhere for months! Today was a breath of fresh air though and once Abbigail noticed those toys, the boots were on and bush coat buttoned running for the door.

I let her loose! Boy did she run…

Abbigail has always been an active girl, spirited, loving life and every moment offers her a new opportunity to enjoy the simple things. Today reminded me of that girl. I jokingly call her my Firecracker because she is loud, impossible to miss, brightly explosive and UNPREDICTABLE, but she is more than the moods and behaviours OMS has imposed on her. Abbigail is our beautiful, bright, excited and colourful girl who brings out the best in anyone who is lucky to have her in their life.

I get tired sometimes and frustrated with our situation but the truth is I feel blessed when I look into our daughter’s eyes and see the joy she has for life in face of all that she endures.

My Firecracker Abbigail…my precious baby girl!

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