Sevi’s Labs are Lookin’ Good!

Hi all, We’ve been silent on the blog for a bit because things have been so hectic. Balancing three kids (one of them a teething infant monster, one of them sick with cancer), jobs, and a new city has been tough. I wanted to share a bit of good news:

Last week, we found out that Sevi’s body is responding to the more aggressive cancer treatment! Her labs show that the cancer is undetectable. This does not mean she is cancer-free or in remission, just that the treatment is working as it was intended. FINALLY!

Otherwise, no changes. She is still on track for chemo for the next 2-3 years. This past week, she has been admitted to the hospital (a scheduled admission) so she can be treated with a very toxic chemotherapy drug. Did you know there are cancer drugs so toxic that people can’t be around others when they are on them? What?! Crazy, huh? She gets admitted for four days, stays here all day and night, and gets this medicine. Then, when it’s out of her system, she can come home (tomorrow).

Patrick and I have been taking shifts going to the hospital. And he is still working! A real father superhero! It’s still pretty hard with all the kids and Rowan teething and not sleeping through the night. It’s a real stressor for us all. Sevi is such a big girl though, she stays by herself at night at the hospital and does just fine. She’s growing up, in a weird, unexpected sort of way.

That’s all for now. Thanks for all the help and support. We continue to want and need your texts/ calls/ letters showing support during this time.

Sevi Update 2/1/16: Allergic Reaction

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

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.