A Good Day¡

Today was bound to be a good day! How could it not be?

Abbigail is about to receive her last of the four scheduled chemos for this treatment protocol, she is finally going to have an “easier” access (no more IV tortured by numerous pokes and screaming), her old bump no longer causes her severe pain and we are going to witness a dear friend complete her very last chemo treatment and ring that bell¡ To an outsider this must seem pretty grim if this is our idea of a great day and really they are not wrong but when you see and live the pain of these kids you begin to take these small and beautiful victories and make them big! Today is going to be a good day I told myself on the long drive to Ottawa this morning, and it was!

Her last of these treatments, for now, went as well as I could of expected 2 days post surgery for her PAC. She is tender, bruised and very protective of her wounds. She has an incision in her neck, and two on either side of her ribs; one from the removal of the old port and one from the insertion of the new one. Her new bump is slightly higher than the last, perhaps as she has grown a whopping 3cm this year! So needless to say it is expected that she be a bit more agitate at today’s treatment.

Although the clinic was busy it was nice because we got to see many friends and familiar faces we haven’t see in some time and spend lots of time celebrating Easter with our favourite nurses and pals.

It’s quite nice to feel “at home” there! Many must think I’m nuts for saying or feeling that but truly Abbigail, Madden and I have spent many nights and many more days there in the last year than most do in four lifetimes. Madden has grown up there so far and it doesn’t make me sad, it makes me feel blessed that we feel so welcome and taken care of there. I trust her doctor and nurses and they absolutely adore her and each time we walk in there we see more open arms than the last. When Abbigail has a tough day and she isn’t “herself” we can count on understanding not glaring and if she has special needs that might not be quite “protocol” they don’t hesitate to accommodate her and make her feel better both inside and out. I can go on and on about this so I will save this for a special day!

My precious baby girl had some tough moments today, she was in some intense pain and unfortunately the chemo and port access aggravated the pain but she had a long nap and we made her comfortable ensuring she wasn’t in pain as much as we could. She is stronger than most adults I know! She woke up full of life and ready to play with her nurse quickly yelling “MiMi & BaBa (aka Pam)”

Abbigail finished treatment and saw special friends and used her new port without issue (other than pain from tenderness of surgery). It was a good day!!! She didn’t get the stomach bug we all did and her counts are pretty decent this week so bring on the sunshine because we are going to have a great weekend…

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She Inspires Me

She is my baby girl, my inspiration & hero
She is my baby girl, my inspiration & hero

Today Abbigail received her IVIg transfusion, a few days late due to the critical timing of her chemo.  Her CBC (complete blood counts) dropped significantly from only four days ago when she was here for round two of chemo, this was expected and necessary however was not expected so early I guess.  I will be honest, nothing is really expected with Abbigail’s treatment and prognosis.  We never know what to expect and we rarely know for sure how she will react to any given treatment.  There are not many case studies, and of the ones that we do have to refer to, Abbigail has already been on their protocol and not responded adequately to stop or even slow down treatment.  It is really frustrating as a mother to have to make all of these decisions and provide all of these details to the oncologists, the burden lays on me to make the “right call” for her life.  This almost sounds ridiculous but true it is.  Of course her doctor knows medicine and cancer treatment and all that non-mom stuff, but when it comes to OMS, there are no blood tests or bone marrow that can be aspirated to see if the disease remains active or not.  Today was a an other reminder of how frustrating this disease is and how much it is hurting us all but Abbigail reminded me that it will not take us down.  We lend ourselves tears and offer our shoulders to one an other when needed, but we also remind each other that we have more in our loving family than cancer, treatments, hospitals and OMS…we have Abbigail!  We have William and Madden and each other.

Fighting
Fighting

This bright star has shown me what it is to love, to fight and to never give up…I will forever hold her high and remind her how inspirational she was and is…always!