She continues to laugh and spread her joy!

In Abbigail’s mind, there is always laughter to be had and smiles to be shared.

Today she beamed down the halls of the hospital, waving to the many staff she has come to know and cherish; the cafeteria cook and cashier, the pharmacy assistant, the coffee shop ladies who keep mama awake and the ultrasound techs who took care of her baby cousin. She was such a proud big girl today, showing off her baby cousin and ensuring he knows his way around CHEO. While he was meeting his new doctors and having his first CHEO experience, she was doing routine central line maintenance, having her lines “unclogged” and blood work drawn for her weekly virology tests.

She doesn’t understand the details behind her diagnosis, she doesn’t know anything different than the multiple weekly visits to CHEO, treatments, surgeries, “sleepy time” (anaesthetic) and clinics. Abbigail is blessed with the naivety of a baby, not understanding why strangers are intruding in their personal space, but knowing their parents will keep them safe. Abbigail is still very much like her 4 month old baby cousin today, even at the beautiful age of almost five. She doesn’t know that she has a rare and incurable disease for which she has battled for three years and continues to. She doesn’t realize that the “medicine” that saved her life twice already, received through her central lines, aka “tubies,” is in fact chemotherapy and that it could cause future, secondary cancers, and life long, sometimes detrimental side effects. Abbigail is graced with a certain ignorance despite having her innocence robbed from her three years ago.

Tomorrow she will walk back into CHEO to have her liver scanned. It shouldn’t be long before we have more information and before we have a plan forward…something to cling onto and pray for.

Please keep her in your prayers tomorrow morning and envision a “healthier” liver for our princess. She deserves to register for kindergarten and not have to withdraw again this year.

Thank you everyone for all of the support!

Growing up with Molly Penny’s Love

Growing up in a hospital isn’t all bad.  For Abbigail, she has friends, fun and Molly.  Since the very first few days, Abbigail has found the joy within those grey walls and she brought her contagious smile no nurse could resist.  So even on those dreaded inpatient days, Abbigail was happy in the playroom, riding her cars down the halls when she couldn’t walk anymore, pulling her IV pole with her and trying to catch up to the older kids.  It is rare to see a young child on 4N with self pity.  Much like Abbigail, most of them do not know any different since their life has always been at the hospital.  Luckily though, on those difficult days where procedures were feared, and chemos were hard, Molly Penny was only a holler away.  In the halls of CHEO walks a retired ER nurse who just couldn’t stay away from our kids.  Her heart beats in the halls, she creates shrieks of joy and laughter in the waiting rooms, and she makes CHEO a home for children away from home for so long.  With the help of the amazing Child Life Specialist, Molly Penny is by far one of the reasons Abbigail has gotten through some of her darkest days and toughest tears…

Abbigail has a lifetime at this hospital behind her already and still more ahead of her.  Having a disease with no cure means just that.  We are so grateful to have Molly by our sides when we are scared, upset or just need a good old fashioned laugh or two.  She doesn’t just help Abbigail and all of the kids, she is always making sure us parents are taken care of too, whether its just a coffee or a huge loving hug.  She is a huge part of CHEO’s heart and we will always keep her in our hearts. We love you Molly!

 

This morning we are off to CHEO again, to hopefully get more answers and a clear path forward for the neuroblastoma so that we can return to focusing on the OMS and giving some quality of life back to our precious girl. Today Abbigail will enter the “big orange door” again to Nuclear Medicine where she will have an other substance injected into her veins to be imaged which is more specific to bones. She has had this scan before and it is much the same as last week’s so let’s keep our fingers crossed that she is just as brave again! Mama is very happy to be by her side today, these moments are milestones for her, just as walking, talking and going to school are for every other child, and I can’t bare to miss anymore. I don’t ever want her or the boys to doubts desire to be there for them through it all, including the darker milestones.

It is with a hopeful heart and a desire for relief for our girl that I ask you to pray and offer your good thoughts today as she faces more scans, tests and procedures.

We may walk in through the orange door with fear and uncertainty but we will walk out with faith that no matter what happens afterwards, we will get through it together.

If you take a moment to stop and listen today, you will hear the unique sound of a young girl, fighting for her life, through joy and laughter with Molly Penny and her love. Just listen…

Happy Easter Adjustments

An other holiday celebrated unlike any other that have preceded. Much like last Easter and then Christmas, this Easter weekend was not without its challenges, however we overcame them together and ended with smiles and memories for years to come.

We completed our course of chemotherapy, I often – if not always, say “we” freely when referring to cancer/OMS treatment and journey because I would never dream of letting my baby do it alone (I’d do chemo if they let me), so we completed the fourth treatment, we seem to have overcome the gastro bug that knocked Us out and we made it through an other holiday!

Friday was a nice day, we relaxed and hung out at home as a family not doing much of anything except enjoying each others company, some more than others I imagine since we started our pulse steroid treatment at home so Abbigail is not always “pleasant” to her brothers. Nonetheless, Friday was nice! Saturday morning William stood at the window for what felt like an eternity, repeatedly asking when his grandparents, uncle and most importantly, his cousin would be arriving. Since it was only 6am, we attempted to convince him to keep busy as it wouldn’t be until well after lunch until they arrived. Wow was that a long morning! Once family arrived, toys flew, babies screamed and the boys had fun! I love watching my oldest son and my nephew play, it brings me back to the days I used to con and bribe my little cousins. Abbigail tries so hard to fit in and most times does with those two but this weekend wasn’t her finest of days. I won’t go into detail, but she was a wreck. A ball of pain and emotion! She’s recovering from surgery, getting over the flu still and on steroids. Enough said. If you still don’t know why that would be so bad, I’ll write about life with steroids for you. The kids had fun and the bunny left behind plenty to be grateful for. Although these holidays have changed, some being consumed by medication, ER visits (like Christmas Day) and symptoms of the disease, chemo and drugs, we are together!

Family left, the mess is cleaned and the babies are asleep.

Reflection…

Easter is about sacrifice for the greater good. Sacrificing for those we love and something bigger than ourselves or us together. Everyday Abbigail sacrifices and everyday our family does too. We sacrifice more than any person could imagine and I only hope that it too is for a greater good. I will continue to fight with and for my baby girl knowing in my heart that one day these painful days are a distant memory only thought of as a reminder of what we are so grateful for. Abbigail will move mountains and she will help others through her journey…together we will come out stronger and that is enough to make these sacrifices into stepping stones.

Happy Easter!

Despite the sad few days she has had…she is still our fun loving and candy obsessed daughter!

20130401-075910.jpg

20130401-075937.jpg

20130401-080018.jpg

20130401-080036.jpg

20130401-080102.jpg

20130401-080126.jpg

20130401-080143.jpg

20130401-080157.jpg

20130401-080215.jpg

20130401-080243.jpg