Maintenance Day 1

It has been 2 weeks and 4 days since we finished delayed intensification. A long 2 weeks and 4 days! We have been on a hold because Sofia has been neutropenic with an ANC under 100 almost the whole time. With counts this low Sofia was low energy, tired and not eating at all! I had a feeling about last Friday that her counts were on the rise because she actually ate breakfast! Our nurse wanted to wait until Wednesday of this week to check counts again but I pushed for Monday and we just acted like we had normal counts all weekend. The power of positive thinking! We went to our neighbors birthday party, which was Sofia's first social gathering outside of family, since diagnosis. She was a little quiet to start and sometimes felt the other kids didn't want to play with her but I think it was mostly nerves. Speaking of nerves, I felt sick to my stomach the whole time because I had to let her play and I didn't actually know her counts. She got tired and a little nauseous after a couple of hours so we ran home for some zofran and rest.
Sunday was also a big day because it was our first family barbecue with my warrior moms and all of our families. It was so great! The parents talked about anything and everything because it's OK to talk about cancer and it's ok not to talk about cancer. The kids swam, played and laughed! At one point I walked in and the kids were playing doctor (because all of our kids have massive amounts of medical supplies) and they were talking about their ports, and needing a transfusion. It was just normal for them, and it was so sweet to see.
So after our big weekend we got up early on Monday and got ready for Jessica, our home nurse, to come draw labs. By the way, we LOVE Jessica from Coastal Kids!!
Monday at 4 we got the call that her ANC was 1000 and we needed to be at the hospital at 7am Tuesday to start maintenance!!!
It's such a good and weird feeling to be here. Let me start by saying that maintenance isn't easy it's just less of the heavy duty chemo. It means hopefully a more stable ANC which means we can start to resume more activity. Sofia will still get one lumbar puncture with triple chemo in her spine and one IV chemo every month. She will take 5 days of steroids a month, one oral chemo pill nightly, antibiotics on the weekends and 5 more chemo pills every Tuesday. It's a lot!!
So today was day 1 of our 19 months in maintenance. Today sucked! Sorry, can't sugar coat today. I just told Mike I think I need a shot of something after today, and if you know me than you will know what kind of day I must have had. Sofia now knows when she's going to be given "sleepy medicine" and she panics the whole morning. It makes her dizzy as it hits her head and she screams. So she was sad and anxious all morning. After she woke up from her LP she was cranky and luckily fell back to sleep while we waited for our IV chemo. Our NP came in to discuss our home meds and the strict instructions. Steroids and Zantac morning and night with food, chemo at night on an empty stomach 2 hours after dinner but 30 minutes before bed. This means that for the next 19 months we will be eating dinner at 5pm! And no snacking between dinner and bed. Did I mention these are pills. Because she has not mastered swallowing her practice m&ms the plan was to let her chew the pills until she learned but today we were told no chewing. So after a long day, 3 naps and needing to be held the entire day, medicine time took 2 hours with her throwing up the meds on me twice. She then declared today the worst day ever and that she will never take medicine ever again for her whole life! Can't wait for the steroids to kick in so we can increase this drama by 1000%. Sometimes it's the meds, sometimes it's because she 3 and most of the time, it's both.
By 10pm the meds were in and she was asleep! Tomorrow we will start again. I'm sure she will get it before the 18 months are up, right?!
It's been a long 9 months and 6 days since diagnosis but we really are so blessed and grateful to be at this next step. Sofia has handled it all with so much strength, joy and love! I saw a shirt that read "some people never get to meet their hero, but I gave birth to mine." So true!!!
We have a lot of exciting things coming in the next few months, with school starting, our first family weekend getaway and both kids birthdays! Though I'm hoping to not have too many medical updates, I will keep posting all of our steps in this journey.
September is also Pediatric Cancer Awareness month and Mike and I are getting involved with numerous charity events to raise money and bring awareness. I hope you can all help by passing along the info as I share with you! Team Sofia is the best!!! #teamsofia