Sevi Update 2/1/16: Allergic Reaction

Today’s update is mostly about medicine–the good and the bad.

Sevigny goes to chemotherapy each week on Fridays–she is now a “Friday girl.” Each Friday, we go to the hospital, not knowing whether it will be 2-hour routine stuff or an 8-hour marathon, complete with anesthesia, blood draws, and demon-in-a-blessing’s-clothes chemotherapy. We’re always nervous on Friday, and the anxiety starts the Thursday night before. This last Friday, we had reason to be nervous.

In case you have not been following, Sevigny’s leukemia has not responded completely to the first course of chemotherapy treatment. Her risk level went from standard to high. Although the survival rate for ALL (her type of leukemia) is 85% overall, she had a higher chance of surviving when she was first diagnosed.

Now, her chances for survival have lowered to somewhere around 85%, which has warranted the use of more aggressive, dangerous drugs.

This last Friday, Sevigny received her first course of asparaginase–one of the more aggressive chemotherapy drugs used to treat leukemia. This medicine, which could save Sevi’s life, has some terrible side effects–so nasty that we cried when we first found out she needed the drug. Some side effects include inflammation of her pancreas, and loss of fertility. It’s weird to think about my 8-year-old daughter and her fertility, but that’s what cancer does to a parent.

Sevi experienced the first (and most common side effect): she was allergic to the medicine. I’m not talking itchy skin allergic. She received it via IV, so there was no turning back. Immediately, she screamed at the top of her lungs, her breathing slowed, her skin turned into one big giant hive, and she started kicking the nurses away because she was in so much pain. Her doctors used an epipen right away to help her stabilize, but she had to be admitted to the ICU overnight. It was a very scary night, not knowing if she would be okay, not being able to stay with her (our baby, Rowan, is not allowed on the ICU–no babies are). We feel so helpless sometimes.

Since then, Sevigny has returned home safe and sound. She still needs that darned drug, though, so the doctors prepared it differently and will give her two injections of it every Monday, Wednesday, and Friday this week and next week. We have to be with her. Yesterday was the first dose, and she did not have any allergic response! We are so, so thankful. Still nervous about tomorrow (Wednesday), but things are slightly improving.

Sevigny’s 9th birthday is February 7. We will be updating our wish list with some birthday gifts for Sevigny. We really want to take this good news about the injection and keep the momentum going for our sweet 9 year old! Hopefully, pictures will follow.

Until then, thank you for reading and being with us. Sevigny would love to hear from you–blog, call parents, or letters.