July 30, 2015

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Maintenance Day 113: Pressure

As we have learned over and over again, Scarlett is very intelligent. This month we had to go over the story of the boy who cried wolf. Shortly after her last appointment, she began to complain of a headache. Our hearts and stomachs immediately sank. Headache is a sign of cranial relapse, the most common relapse in T-cell ALL. We tried to think of everything that we could think that her doctors would ask her. Where does it hurt? The base of her neck (not a good sign). Is she nauseous? If so, that is another sign. No fever, no neck stiffness…It got to the point where we had to tell her that if it really hurt, we had to call the doctor. We are screwed either way. If we threaten to call the doctor and it really does hurt, she may not tell us. If it does hurt and we call the doctor, she may not tell us next time. After about a week of debating and arguing with her, we figured she was just finding something new to complain about.

The following week was when her ANC dropped. We tried to keep her away from people, home bound and protected. But infection wasn’t the only thing on our mind. Every day that she doesn’t take her meds, every dose that she misses, is a day her body can relapse. Her ANC was so slow to rebound that it took two weeks before we could restart. And even that was cutting it close to her monthly IV meds. Luckily, two days before her appointment, she reached an ANC of 2200. Not ideal (actually a little TOO high) but she reached her goal of 750.

Going in to her appointment, Brock and I were very nervous. We had nothing but bad signs this month. We were anxious, stressed, and dreading waiting for her results. After discussing with Dr. B what had happened this month, he decided to do an extra test during her lumbar puncture. In addition to testing her spinal fluid for leukemic cells, he decided to check her cranial pressure. An increase in the pressure in her cerebral-spinal fluid is another indicator of leukemia in the brain. The method for doing this is very old fashioned. After placing the needle in her spine, he attaches a vertical glass tube and allows the spinal fluid to equilibrate. However high the fluid stops in the tube, is an equal measure of the pressure in the cerebral-spinal fluid. Her pressure measured a little higher than normal but he also didn’t take her head off the pillow. So he was comfortable with the results. Everything else with her appointment was reassuring as well. After waiting a few hours, we also found her spinal fluid negative for leukemia!

Scarlett seems to be becoming more aware of what is going on at all of her appointments. This is the first time that, after she was given Versed, she looked for me to make sure I was still there with her. I had to lay her down (neither the nurse or doctor could do it!) and she held my hand during the entire procedure. She is still very aware of what is happening when she is sedated. She answers questions, tells us when she is uncomfortable, and is listening to everything going on. Her calm, patience and tolerance for pain and annoyance is amazing to us.

This month has been difficult for Brock and I in terms of confronting our fears. We forced ourselves to talk about things we have been too afraid to talk about. Even if it was just a short conversation, it was the first time that we admitted our deepest fears out loud. It was also the first time that we were able to send the kids to my parents’ since Scarlett was diagnosed. It’s a terrifying thing for us to allow someone else to give her her meds, make sure she’s safe and not exposed to anything bad. But we trust our parents greatly and know how much they love her. And Brock and I were able to do things we haven’t done in a year – have dinner with friends and go to a movie. Such simple things that have become such a big deal. We are so grateful for every small thing but mostly for the much appreciated gift of health, one day at a time.

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