What I wouldn’t do to go back to this sweet bliss of lying on the bed after her nap, nursing and playing as she wakes up. Instead, I am sitting in a vinyl recliner that I had to beg a nurse to grab from the NICU upstairs. The only similarity to the above pictures is that we are still nursing, and still co-sleeping, albeit sitting upright instead of laying comfortably in bed.
I am not sure when this will become “normal” to me, it feels like a bad dream that we can’t seem to wake up from. On top of the stress in the hospital, I often find myself asking if the emotions I’m feeling are okay. Am I allowed to cry? Yes. Am I allowed to be angry? Yes. Am I allowed to be relieved and excited when we get Ivy to crack a smile, take a bite of food, pick up a toy, or get good test results back? I sure hope so.
I threw up yesterday, twice, and all I can think of worry about is if I’m hurting Ivy. She has no immune system, so if my throwing up wasn’t from dehydration, nerves, or yucky cafeteria food, I could cause her to spike a high fever which is a super-no for a child with cancer. But, enough about me.
Ivy has been such a trooper these last five days of treatment. She is in the first phase, called Induction, which consists of 28 days of chemo and monitoring here in the hospital. Every four days she gets Vinchristine, which is a syringe full that they are able to push through her Port. Her port is on her left side, and is basically an internal IV that they can access at all times (super helpful during those 2am blood draws for lab work!), and is how she gets most of her medications and fluids. She also gets chemo through a lumbar puncture which happens every eight days, called Intrathecal chemotherapy, and that puts chemo in her cerebrospinal fluid.
On Monday she had Pegaspargase (PEG) which is yet another form of chemo, only administered one day out of 28, through an IV Drip bag. She has been wiped out all week since, and the only food she successfully wanted to eat was her three bites of vanilla pudding- a pill goes on each bite. She is totally a pro already! I am so proud.
Ivy’s still unsure about her team and nurses. Every time they come in she will wave and yell, “bye!” Trying to pursuede them to go away and leave her alone. I don’t blame her, although their support has been amazing.
The biggest feat of the day was that she was able to push her stroller all the way from our room to the outside garden! I am so proud. She hasn’t been walking since we got here, and it’s so hard to see our once wild and active babe struggle to walk. But, as always, she will power through and be even stronger than before.