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.

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.