We arrive at clinic after dropping Av off at school. She'd already gotten her vinecristine and was happily playing dinosaurs on the floor when they started the PEG on her IV. 8 minutes into it, she starts scratching her back real hard and I could see as she lifted her shirt to do it her skin was bright red. I was feeding Anderson. I alerted the nurse who was standing by, and handed Anderson over to the Child Life Specialist. As soon as I turned around, Alaina was screaming, rolling around on the floor, kicking and hitting the nurse. This is not common behavior anymore (it was at the begining of treatment with all these strange people trying to mess with her...but now she's friends with all the nurses and staff and frequently let them pick her up and play with her etc.)
So I pick her up and tell her over and over everything is okay while taking her to the procedure room down the hall. As soon as I lay her on the bed in there my heart literally stopped for a second. Her lips were purple and huge, like a bee had stung both of them. Her eyes were swollen and blood shot. Her skin was pale and she was clamy and sweaty. Under her arms her skin was ruby red. She was crying, scared, confused. I realized shortly after the reaction why she started throwing a fit on the floor. Her throat was closing up on her. Her tongue was swollen, too.
I couldn't stop asking the nurses and doctor "Is this normal?" "Did you see there?" Trying my best to keep it together. I have to commend the staff at the Grapevine H/O clinic....they are awesome. We LOVE them and our doctor. They kept me calm, gave Alaina epinephran
Right now, sweet Alaina is fast asleep in he rhospital bed, stable and okay. The clinic called the ambulance and they came and took us back to Cook Children's. We talked to the doctor about other options to replace this chemo. We were both very scared this missed dose of Asparagenaise (forgive me, I really don't know the correct spelling for all of these and our treatment book is at home) could put her into relapse. Doc said it shouldn't and that there is other options of Asparagenaise that isn't PEG. The difference is that PEG is a long lasting chemo that stays in the body a while so you only need one dose, whereas the other version you need to go in M-W-F for two weeks to get the same effect. We'll do whatever it takes, but my husband said something that haunst me and will forever and ever: This is all poison. My baby is getting posion flushed thorugh her body to kill this bastard that is cancer...or rather, make sure it doesn't come back. Because it WILL if she doesn't keep treatment going, studies show it will.
What crushes me though is how much her little body has gone through in just three months. THREE MONTHS. The Child Life here does something called Beads of Courage, where the child gets a bead for everything: blood transfusions, x-rays, pokes, surgerys, bumpy roads (having to learn to walk again), losing hair, learning to take a new medicine, having chemo, having hospital stays, having clinic visits...the list is long. For each thing, she gets a different color or type of bead (each one has a bead assigned, so for instance, every hospital visit (days) she has yellow beads for)....I haven't counted all of them yet, I don't have the courage to. But she has a bowl full of beads. It's to help tell her journey, and her story. But looking at all of them...all that's ben accumilated for just 3 months....well....all I can do is look at her sweet sleeping face, try not to cry, and pray my baby's body can continue fighting and being strong. Because all of this stuff happening to her: surgerys, toxins, allergic reactions (her allergy bracelet now has 4 things on it), and having fought back an aggressive lymphoblastic cancer....I mean, what else is going to be thrown at her, and will she continue having this amazing strength to fight it?
I have to believe she will. I have no other option. But it's still terrifying. Terrifying. No other word comes to mind.