Did it scare you?
It did me too. Monday, January 17, on our regularly scheduled date we didn’t exactly hear this word. What we heard was something sort of garbled, similar to the sound that comes from the cassette tape left in the front seat during the summer just a little too long. Or perhaps the sound that Robin Williams, as Mork, made when he was in a “time warp”.
Nothing was right about the day.
To get to the hospital we leave at least two hours before our appointment. Most of the time, we get up, throw stuff in the car and drive away. As I was getting ready, Money said, “I am brewing coffee.”
With panic in my voice I respond with a squeaky, “Whaddaya mean making coffee, you never make coffee, you can’t make coffee.” This obviously makes no sense, since we both welcome coffee in any practically any form at frequent intervals throughout most days.
Then the really weird thing. I put on make-up. Has Jerseylicious gone to my brain? Thanks Olivia, now I am creating a smokey eye before hosptial day.
Then, he, my husband had the audacity to turn left. LEFT!! The day just gets weirder.
We stopped for gas. We never stop for gas.
He bought snacks at the gas station. Do I really need to say that he never buys snacks?
After arriving at the parking garage things started to seem normal again, but started going awry once we hit the waiting room.
The rooms have been rearranged, computers added, a nurse who normally worked in the infusion room moved up to the front, and the doctor rather than the nurse practitioner. Seriously. Everything was different. Certainly a worm hole.
Dr. Hill came in, felt her belly, asked a couple of questions then came back and said, “We need to get a bone marrow.”
This is not what I wanted to hear. This information hit me in a way that the first diagnosis did not. When someone tells you that your child has leukemia, you have no idea what to expect, but if someone tells you your child has relapsed, you know that you will be repeating the entire process. The entire thing from the beginning. Also, if your child relapses on treatment. Ouch. I felt sick. To both our credit, neither one of us vomited.
My first thought was, ‘I need a cancer parent.’ I reached out to someone who I’ve met online. It was definitely the best move. Even getting an unofficial second opinion from their oncologist!
Because Isa had something to eat, we could not perform the BMA and had to come back. Most of the evening we spent crying and moping. Feeling sick and feeling sick and tired of cancer. The feeling, a combination between, hopefulness and complete despondency.
Tuesday the 18th could have been one of the worst days of my life. Luckily for our family it wasn’t. Isa’s bone marrow checked out okay, but that doesn’t explain her low platelets. After an ultrasound with flow the doctors found no problems with either her liver or her spleen. And that still doesn’t explain her low platelets.
The oncologist approved the vincristine, dexamethasone sent us home and back on meds, one 50mg 6-MP a night and four Methotrexate.