The journey continues…

Dealing with life’s daily interruptions are grueling when you have a sick child. Especially when “daily interruptions” can mean trips to the ER. Anyone who has been through the journey of caring for a child with cancer can attest to the fact that a family experiences many levels of loss along the way. The process of loss does not begin with the death of a child. In fact, personal losses for parents and siblings begin to pile up early, from the beginning of therapy to the final outcome of treatment. From the first day of treatment, daily life is irrevocably changed by the demands of caring for the sick child, and everyone in the house feels the pain. Siblings experience a great deal of uncertainty and anxiety, based primarily on the absence of their sick sibling and one, or possibly both parents, due to long hospital stays, or late night departures to the emergency room when chemo’s side-effects kick in, demanding treatment. Parents lose individual time with the healthy siblings, family dinners get skipped, school and special occasions get missed. It’s all part and parcel of the great amount of time that has to be devoted to the sick child, and the sacrifices that come with this reality. Siblings are acutely aware of the absence of their parents. What we wanted most to avoid was becoming isolated from our healthy children. Making sure they were involved in the care of their sister was an important way to stem the feeling of loss and isolation, and keep everyone together. How much that helped Abbigail’s two brothers I can’t be sure, but at least we are trying to keep our family normal, in an otherwise abnormal situation. While it’s important to focus on the healthy kids and how they are feeling, keeping a close eye on your spouse and their feelings is of equal or possibly greater importance. Given the difficulties and time constraints caring for a sick child can put on a relationship, it’s easy to grow apart. Most of the time, mom is one place, dad is another. I know this is a reality in our experience, the loss of personal time together in just about every aspect. The challenge is to try and restore some of the intimacy and private moments, while still dealing with the constant pressure of caring for your family. Ultimately, depending on the progression of the disease, there will be lesser, or greater losses the family will experience. Communicating with Matthew and the boys on how everyone is feeling, trying to keep us close, both emotionally and physically, is the goal, hopefully mitigating some of the loss that caring for a Abbigail has brought to our family over the last three and a half years. 

Today Abbigail and I are cuddling beneath a bright pink Barbie blanket, enjoying each other’s company, but it isn’t in the comfort of home and it isn’t surrounded by our loving family. We are in hospital. The boys are back home with Daddy trying to carry on with the daily chores and coping with the daily losses implicated when Abbigail is in hospital, and Mama by her side. 

Our family has been blessed this past month with the gift of time. We were given use of a home in Orlando, which offered our family the opportunity to drive down to Florida and have unplanned, uncharted time together, without treatment interruptions, or medical appointments. Abbigail was well the time we were away, with the exception of a few days of cough and cold, and she was able to have her NG tube removed, as she now eats well enough and is able to take her medications orally. She turned five years old during our trip and had the time of her life; splashing her toes in the water, enjoying breakfast with Sophia the First (child princess from Disney) and spending each day with her brothers and both parents without exceptions. There were no hospital visits and no additional medications or blood to be drawn. After countless beautiful sunny days with Mickey and his pals and so much pool side fun, we hit the highways for two days to get back home. We chose to detour 12 hrs though, which gave  us the chance to visit with close friends in Memphis. They have been relocated there for almost a year now, seeking life saving treatment for their daughter, Abbigail’s best friend, Phoebe. This entire trip, as busy as it was, truly was a huge break for our family, an opportunity to be together without planned interruption, a blessing beyond comparison.  There continued to be small daily losses as Abbigail still suffered from the sometimes debilitating OMS symptoms, which made the day to day struggling at best, but in the end it was magical.  Once all of the roads were behind us and we finally saw our fields, local farms and neighbours, we were relieved to be home and back to our comfort zone. As amazing as the ignorance has been this past month, we knew that this serene feeling of freedom from the diseases that have festered our lives for years, was likely over. 

Abbigail was due for her follow-up MRI on her liver lesions only two days after returning home. Wednesday, May 27th, she underwent sedation for the umpteenth time and had images taken of her abdomen and pelvis, with the focus being on her liver. After two days of waiting for results, we arrived to hospital again Friday the 29th of May to hear that her tumours have now doubled to an astronomical number of 60+ spots confined to her liver. This is not only puzzling to her team, but also very concerning and worrisome. Abbigail is continuing to pave her own way and write her own story about Neuroblastoma, relapsed disease and living with OMS from infancy through childhood and we will keep following and supporting her with all of the hope and faith that we can muster. 

That Friday also turned out to be one of those unimaginable moments in a parent’s life, when they hold their child tightly, fearing the worst, but knowing that life is a gift…that this child is a gift that can be taken from us at any given moment. That moment of surreal fear brought nauseating feelings to our clinic room Friday morning as Abbigail threw herself to the floor in agonizing pain only mere minutes after showing off her talented dance moves. 

Abbigail appeared to be in septic shock as her body temperature rose well above 40 degrees Celsius and her heart rate jump to 175, forcing her bloodpressure to plummet down hard and fast. This brought on severe headaches, uncontrollable shakes and shivers and confusion. Abbigail was suffering from sepsis, what was once called blood poisoning. It was quickly determined that Abbigail’s entire system had been “showered” in bacteria when her lines were flushed post blood draw. It turns out Abbigail likely had her central venous lines too close to the pool in Florida, where bacteria came into contact with foreign and vulnerable object in her body. She was immediately started on antibiotics, cultures were sent off to the labs for analysis and we were transferred from the day unit care to inpatient, where we would be for the coming weeks. 

So again, here we are cuddling, well actually she’s snoring now, and although it has only been a few days, it feels like a lifetime.  We have so much uncertainty to face and far too many unanswered questions for both infectious disease and our oncology team, that taking it day by day even sounds and feels insurmountable. 

Getting through more tough days…

Since that dreadful call on Christmas Eve, I have been consummed with fears and questions, both of which have yet to be relieved or answered.

Abbigail has had an MRI and ultrasound of her liver since returning from transplant and they both reveal the same differential diagnosis and affirmation of my fears. These nodules found to be growing and multiplying within her liver, aside from her never disappearing liver tumour treated with 8 cycles of chemotherapies last year, are suspect of further metastasis, PTLD (post transplant complication involving further cancer) or infection. We have consulted with liver specialists and infectious disease and they have all suggested a biopsy to evaluate a tissue sample from the “spots” to see what they are because blind treatment could result in further damage. So could time…I am pushing as hard as I can to get these procedures and tests completed as soon as possible because in my heart and my gut, I don’t feel this is “nothing to worry about” and time has only hurt our baby girl in the past.

So as Abbigail struggles most days to keep her temper under wraps, tame her irritability and muster the energy to be a kid, we are worrying and trying to get everything organized to face anything thrown our way. We thought for sure we would be enjoying a new life by now, but despite the odds we are continuously being thrown, we won’t stop fighting!

This fight is nearing three years and this past year we have received more support and generosity than ever before…than we could have ever dreamed of or prayed for. We have so many people, families and organizations to thank. We will post a formal thank you to everyone shortly and hope that everyone knows just how much each and everyone of you means to us and how much we appreciate your support; whether it be monetary, emotional or through prayers and kind words. We thank you ALL!

One of the recent fundraisers, in support of Abbigail, is the CNL Black Bears Charity Hockey Tournament being held this week. Colleagues of mine at CNL (Canadian Nuclear Laboratories – formerly AECL) have for ten years raised money, for local charities, through their annual hockey tournament.

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Last year they raised a huge amount of funds which were in support of both the Pembroke MRI fund as well as a colleague family with a child in medical fragility. Much the same this year they have again chosen the MRI fund in addition to Kisses For Abbigail. We couldn’t be more blessed and humbled by this. We would love for our family and friends to go out and support this huge team of generous and kind heart hockey enthusiasts who chose Abbigail to pray for and raise funds for this year.

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We hope that everyone has a week of fun filled ice time while we continue to look further into Abbigail’s liver tumours and we look forward to hearing about all of the fun the kids had during the festivities. Please send me photos of the event, Abbigail will one day look back on her supporters throughout her battles.

Abbigail’s New Beginning and Brave Journey to Healing

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

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

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

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

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

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

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

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

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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}

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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Abbigail’s Story from the Beginning…

I would like to start from the beginning for those new followers and anyone who doesn’t fancy Facebook and who may not be up to date on Abbigail’s prognosis and progress.

From the beginning of her journey & fight…

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Our Innocent Abbigail at 7 Days Old

One year ago surgeons successfully removed Abbigail’s cancerous tumor. Some might think that once the cancer was gone that she would return to the life of an average toddler, which was not the case. She endured 12 months of chemotherapies, transfusions, treatments, immune altering drugs and countless procedures that brought heavy tears and frightful moments to her not-so-average life of an oncology toddler. That moment when the surgeon walked down the long narrow hallway to take me to her, in our minds, she became cancer free. This did not mean that the battle was over, this had meant we dealt with the obvious and that the true fight begins. Abbigail endures regular scans to ensure that her cancer has not hidden itself and that she does not relapse. Neuroblastoma does have a relevant relapse rate, hence the numerous scans. We are however optimistic after her 1 year scan last week, which came back clean as a whistle, that she continues to be cancer-free and that she will continue to beat the odds.For those of you unfamiliar with much of Abbigail’s diagnosis, she is indeed a case for the books. She is 1 in ten million a year that are diagnosed with this rare diseased indirectly caused by her cancer. Opsoclonus Myoclonus Ataxia Syndrome (OMS) is life altering and can be very debilitating at times, especially for a toddler, and it currently has no cure. When Abbigail first was diagnosed, she couldn’t stand on her own, she couldn’t walk, nor barely crawl and even sitting up alone was a task. This is not close to the average for a 22 month old, given that she was running, climbing, self feeding, and keeping up quite fine with her 4 year old brother just weeks prior. Abbigail went from an above average 22 month old to barely being comparable to a 9 month old. She began quickly losing motor functions, both fine and gross, shaking tremulously, unable to keep eye focus (darting eyes), confusing prior learned sounds/words and being quite irritable and inconsolable at times.

Once diagnosed and a treatment plan was researched and decided on, we put one foot in front of the other and pushed through the next day. Abbigail began a year of more than I ever expected. I did my research, I read more studies than I did books in my 30 years, I may have gone through more literature in the last 52 weeks than our oncologist has when it comes to OMS. I was prepared…so I thought. We went into her first day of treatment with the understanding that in 12 months she would be back to health with perhaps a few minor setbacks that would easily be overcome and some mild side effects from her treatments. Watching the other sweet kids walk in and out of the oncology playroom with numerous cancer treatments hanging from their IV poles, hearing the other moms talk about how this was their 15th trip to the ward this year and seeing the size of some of the children’s charts on the shelf, we had it easy we thought. Now, 52 weeks later, 3 treatment plans unsuccessful, we too have had to push a heavy IV pole with three pumps attached to it, and I laid awake in my daughter’s hospital crib crouched at 9 months pregnant just to hold her while she endured yet an other sleepless night attached to too many wires and her charts too are so large they require numerous binders on the shelf.

In March 2012 Abbigail started her first treatment protocol, which consisted of high dose steroids orally at home on a daily basis, in addition to the other oral medication to control the treatment side effects and she received intravenous chemotherapy and intravenous immunoglobulin (IVIg) transfusions every 28 days. If that wasn’t enough for her little body to endure, she underwent weekly blood tests and office visits with her oncologists at CHEO. Abbigail’s acute symptoms, the obvious physical ones of walking and standing improved significantly, however never returned to anything near that of a 12 month old just yet. Then throughout the summer months we began to see her symptoms return and she began once again to deteriorate. She began shaking again regularly, her eyes would dart numerous times in a day and her awkward and uncoordinated balance became more and more obvious as the weeks went by.

It was decided by her team of oncologists that this first treatment plan didn’t succeed, and that we would begin the search for a new treatment plan, which came recommended by a doctor in the United States. This next plan consisted of much of the same however rather than daily immunosuppressive steroids we went to a higher dose pulse therapy in addition to the IVIg and side effect medications. Come November 2012, although we saw her walking more and shaking less, her gross motor skills took a back seat to her now cognitive symptoms. We experienced some of the darkest and toughest days yet. We were losing that bright bubbly baby girl to such frightening and dark symptoms. It was and is so hard to watch our once joyful little girl slowly slip away and viciously lose her sparkle.

Now, pushing the lump in my throat further down, as we run through an other treatment plan, we again, in part with our oncology team, consulted with the same doctor from the United States who is as experienced as you can be with OMS, and we came up with an other plan and it started immediately. This plan consisted of an unapproved course of treatment for her diagnosis however one that proved promising in the little research there is out in the world for OMS. Hope was restored and although the battle was nowhere near over, we had a plan again. Abbigail endured four more weekly rounds of a different targeted chemotherapy, throughout the month of December; her last treatment was January 3rd! She received her treatment of IVIg transfusion on January 18th and February 15th as she had been for the last 12 months as well as continued to receive steroid treatment at home.

That brings us to the present.

Abbigail saw a number of weeks in December and January where her physical symptoms and motor skills appeared near average for a 2 year old (she is almost 3) and her rage, behavior, mood and overall irritability had improved enough for us to breath again. Her sleep disturbances continued however we felt that was bearable. Come February, we noticed that each day Abbigail got increasingly worse. She now requires a supplement to sleep, otherwise I am up with her a lot, sometimes up to 8 times a night, which is only exacerbating her OMS symptoms. She spends many hours a day screaming or fighting herself in a fit of rage, sometimes inflicting pain on herself or her siblings and us. Her walking is still leaps of improvement as we look back on one year ago, however she tends to be uncoordinated more and more and her ataxia (shakiness) has gotten more evident over the last month; more often when she is tired, which feels like all the time now.  I know these symptoms all too well and I recognize them, their patterns and how her body and immune system tend to react to them on a daily basis and that is why I have no doubt in my mind, my heart and my gut when I say that she has yet to induce a neurological remission.  This is why we decided to start an other course of treatment.  Her oncologist agrees, that she has not reached her “potential” yet and that we can not take any chances of letting her immune system go on the attack again, risking further brain damage and life long sequelae.  So for the month of March, Abbigail will endure yet an other course of chemotherapy, every Friday until Easter.

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2013 March 08 {Day 380}

Abbigail may exhibit symptoms that would make most strangers sneer or stare and she might not be up cognitively with her soon to be classmates, but she is still our little girl, she still loves playing dollies and dressup, and she adores her big brother.  I could go on and on about how she is, how I wished she was and how she steals my heart each and every smile regardless, but I will save some fun for an other day and many more posts.

I realize this was long, but now that you are all up to date on her prognosis and progress with this brave journey, I invite you to continue to follow her journey through my eyes here and to like her Facebook page http://www.facebook.com/KissesForAbbigail for fun photos, quick updates and interactions.

Thank you for reading and sharing.