Thursday, March 13, 2014


We are done.

It feels weird. Cancerville has been where we've lived for the past 15 months, so it's odd to think that it's done. Soph finished up on Feb 12 with cycle 9, and it's been a month now. We were dreading the post-chemo side effects of fever, possible infection, but by the grace of God, it was minimal! The previous cycles that had this cytoxan chemo were brutal. Back in June 2013, Jeannie & Soph spent 3 nights at the hospital b/c of fever, and in Sept 2013, another 3 nights battling an ear infection, nose infection, in addition to fever. We avoided any fever visits this time around, and only had 2 visits for transfusions. Her counts recovered pretty quickly, and she was back to her feisty self pretty quickly. Amazing. Praise God.

We went back this past Tuesday for some post-treatment discussions with our APN, and to get her monthly pentamidine vaccine. We'll start to wean her off the nightly TPN, which will hopefully lead to increased eating, weight gain, strength. We want to get her into Rehabilitation Institute of Chicago, b/c they have this motion/gait analysis that we think will help Soph. Hopefully it'll be a baseline for us to get her back into Marianjoy as well. MRI on 3/28 and every 3 months thereafter to make sure this cancer beast doesn't come back. Clinic visits probably at the same time to check-in. Targeting July-ish to remove her port.

We also got to visit Ella Joy, who's in-patient for chemo, and met a new friend, Ava, who was very recently diagnosed with a mixed-lineage type of leukemia. Yet another precious young girl who is fighting her own cancer battle. Follow their journey here and find ways to help. Check out 3 of the bravest, strongest little girls you will ever see.

What else? We are busy planning lots of fun things! In 2013, we didn't go on any vacations, didn't visit my parents in IN, which we did about every other month or so previously, and generally stayed close to home. So we are planning to make up for lost time this year!
  • Fri, March 21 - St. Baldrick's event at Soph's school, Madison Elementary. I will be a shavee. Please make a donation to St. Baldrick's to help find a cure for childhood cancer. It's a good, legit organization.
  • Sat, May 3 - party, party, party! if you are reading this, you are invited! It's our end-of-chemo party for Soph. Hoping to have lots of fun activities for kids, dancing, food, video (if I can muster up my limited creative juices), and lots of hugs, thank-yous, moments. Don't bother bringing anything except yourselves, and your families. Don't worry if you don't know us well, or don't know us at all! Come in anytime from 11-3, say hi, give us a hug, eat something, drink something, dance a little! I think the facebook event is public, so anyone should be able to RSVP. If not, let me know!
  • July - we are hoping to go to Lighthouse Family Retreat in FL, for a week of fun in the sun, and meeting other families who have gone thru some of the similar experiences as we have. The thought of driving to FL (14 hrs!) is daunting though, with 3 kids!
  • August - Another camp, this a Brain Tumor Family Camp, which is closer, WI, I think?
  • October - Make-a-Wish trip to Disneyworld! woohoo!
  • go to the pool in the summer! visit the grandparents in IN! other ideas?