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.

3 thoughts on “Blessings & Silver Linings

  1. If you come to America…we are here…sending you love and kisses….what hospital are you considering? Our daughter is being treated at Children’s Hospital in Philadelphia. Please feel free to contact me if you have any questions….and Happy 3rd Bday!
    XOXO
    Claudia

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  2. You are an inspiration to all of us, we are praying that good things come your way soon :-). Happy Mother’s Day!! You deserve it!

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