Today we found ourselves driving to CHEO early in the morning once again for our weekly bloodwork and oncology appointment. Although I’ve driven these same 140km over 90 times this last year, the drive never gets easier. I am not talking about the baby crying to be changed or fed, or Abbigail’s relentless screams, outbursts or attacks, those are only small parts of our everyday life which seem far easier to deal with when faced with the one and a half hour feeling of anxiety felt during my drive to the clinic. I’m always finding myself swallowed by the fear of each treatment, it’s side effects and possible reactions, the fear that comes with each blood draw not knowing if bad news looms from the lab and the fears that consume the room of each of our visits with the oncologist. These fears can sometimes paralyze you.
Finally got through traffic this morning and I sit at the stop light only blocks from the hospital and I am so frustrated at the person in front of me for not claiming the intersection therefore forcing me to wait an other cycle before turning left! ARG! Don’t they know what Im dealing with? Go already! Frustrations are common when we look at our life, Matthew and I are burdened with our daughter’s treatment success evaluation. There is no blood test or scan or procedure to tell us how Abbigail is doing, just us! So here I an about to enter the clinic full of fear and frustration. What else could make this day so F!?!
We are casual people, friends with most of the other families in the adjacent rooms, so shutting the door to discuss Abbigail’s latest rash or recent symptoms is not common. Today, the nurse took both my kids to the playroom, sending me to room 22 where I am met by our case manager and primary oncologist, she shuts the door. My heart races and I immediately want to run, grab my babies and go to the toy store! The “feeling” I had this morning waking up is about to find its merit. I was anxious all week for this appointment because I “knew” this was the appointment where she would tell me that the chemo didn’t work. Having done two heavy rounds of chemotherapy already in this protocol which called for only one, I have to wonder if we are grasping at straws now. After we lighten the air with some casual talk, I clench my knuckles and ask if we’ve failed my sweet Abbigail…have we hit a wall?
Abbigail is not improving. Her symptoms continue to persist and even worsen. She is miserable, lethargic at times, irritable at best for most waking hours and absolutely unpredictable when it comes to her rage and attacks. Her walking has recently shown a slight decrease in ability (stomp walking, tiptoeing and unbalanced) seeing her fall a few times a day has me so afraid as it brings me back to those initial days before diagnosis. She is also back to hurting herself and siblings at every chance she gets. I am forced to keep her at my side every minute of every day. At least I get a lot of cuddles and time on the floor with my babies!
…but where do we go from here? With much discussion, debate and evaluation on both my part and our doctor’s, we agree to touch base with Dr. P in the U.S. He has consulted and treated 120 OMS children from all over the globe, he has got to have answers!!! So the nurse opens the door and I see my babies…I’ve just realized that Abbigail’s immune system is still in attack mode and her brain is not safe yet, but there are two of my three beautiful children smiling at me and for a moment I wasn’t worrying. ToysRus, then that long drive home again…
Looking forward to the weekend doing nothing but enjoying the simple pleasures of being a mom to three beautiful children. Crafts, mud puddles, church with friends and some much needed cuddling! I will save the worrying for Monday as I await the call that will hopefully change things for Abbigail and our family.