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!

Decisions No Parents Plan

So here we find ourselves again debating yet an other decision that must be made quickly.  As most of you know, Abbigail has had little to no luck when it comes to accessing her veins for treatments or even blood work for that matter, and so after many requests, we had a Port-a-Cath (PAC) line surgically inserted to allow for easy and virtually pain free access to her artery for treatment and blood draw.  This was inserted in April 2012 and we were told that it can last anywhere from a couple months to even years.  Abbigail’s has officially been displaced within her body and must be removed after almost 11 months of constant use.  This will require yet an other surgery, however not too complicated of a procedure.

IMG_7373

IMG_7375

IMG_7385

Abbigail still requires two more rounds of chemo for this course of treatment, in addition to her monthly IVIg infusions that have no end date in sight so after much debate and discussion with each other, doctors, nurses, our oncology team and even Abbigail, we have decided it is best to have it removed and replaced with a new one.

This is just an other decision we have had to make on her behalf that breaks our hearts…

We have been placed on the “urgent surgeries” list, meaning we will be waiting by the phone for a call from the hospital stating that Abbigail is scheduled for surgery within 24 hours.  The last time we went though this, they called tuesday at 3pm and we had to be there at 8am the following morning.  So we hope that within the next week or so she has her new and functioning port!