I'm a day late with this post because our wild lifestyle change caught up to us and Sofia now has a cold! To be fair, the baby caught it first, passed it to Mike, than me and finally to Sofia. We kept her home from school today to make sure she gets the rest she needs to fight this.
Ok, back to our weekend. Saturday, Mike and I hosted a benefit concert to raise awareness about Pediatric cancer. One of Mike's former classmates and good friend Matt, has a band named The Hard Truth and they were kind enough to put on a free concert at Bellarmine for the event. About 80 of our friends and family came out, had some wine, listened to great music and learned a little more about the harsh reality that is Pediatric cancer and the need for action! Though the event was free, we sold Team Sofia shirts and The Hard Truth CD's, with all the proceeds going to Pediatric cancer research. We were also able to share some other amazing events that are coming up in September, so everyone can get involved. Don't worry, I'll be sharing all these events all month long!! September is Pediatric Cancer Awareness Month and a great time for everyone to do something and make it a month of Action and not just awareness.
A late night on Saturday and an early morning rise on Sunday as we headed to SF to meet up with Boster Posey and his wife before the Giants Game! We were all feeling great and Sofia was very excited. We were escorted into a press room where Kristen Posey and their twins came in to greet all the families. Sofia was the youngest kid there so Buster's son Lee came right up and started chatting with us. Buster came in an recognized Sofia right away, saying I know Sofia, she likes Hunter Pence! You would think she might change her story but she's still declaring Hunter as her favorite. As Buster went around the room, Lee stayed and chatted us up. After all the pics were taken and items were signed We said goodbye and Lee asked if we could sit with them or maybe go to their house. He was the sweetest! Sofia had pizza, ice cream and popcorn. Noni got to meet Buster Posey at his first ever Giants game and the Giants had a big win! All in all it was a great day and we are so blessed to have been able to be there. So happy this cold didn't pop up until after the weekend!! Those of you who asked where they could buy a BP28 Pediatric Cancer Giants hat, they had them at the dugout store outside the ballpark.
I also want to thank everyone who came on Saturday night and those sent their well wishes.
Tomorrow we get labs to see how Sofia's ANC is looking which will determine how much chemo we can continue on. We are hoping for a great number as we have a fun getaway planned for September 8th. I'm feeling a bit sad that my baby boy is turning 1 in September, so we are trying to do a couple of things with the kids before the birthdays.
Thank you all for the love, support and prayers! Love for #teamsofia [...]

So much to write!
It has been almost two weeks since we've started maintenance, and I feel like we've gone a bit crazy!! First off, Sofia did great on her first pulse of steroids. She never got angry like in the past, just a little clingy starting about the 4th day. But, much better than I was anticipating. Her craving was not pizza or pizza rolls ( which she told me she will never eat again) but Parmesan flats. These gourmet croutons were eaten all day for 6 days straight! My mom was delivering 6 bags at a time. After our last delivery she decided she was done. I can only imagine what cravings we are going to see in the next year and a half!
With steroids over we decided to focus on our pill taking. Remember, Sofia takes one pill every evening and 6 pills on Wednesdays. For the first week she refused to swallow the pill and ended up chewing it. Pieces were stuck in her teeth and I was worried she wasn't getting it all so I bought this pill taking cup on Amazon and we set out on our mission. This oraflow cup is great and you really can't tell your taking a pill but Sofia would stick her tongue in the spout which would wet the pill and it would get stuck. Basically, it wasn't working. After many tears, a couple freak outs and a long talk about how big the hole leading her throat is, she just said ok mom, I'll do it now. I put the mini m&m on her tongue got her sport top water bottle and she swallowed it. We got the pill and down it went. She now loves taking her pills and can do all 6 in a row, no problem! The mind is a powerful thing!!
So, with her week of steroids over last Sunday and pills down, we made the call to start preschool on this past Tuesday. I was nervous and she was nervous, but so excited. Of course on Monday night she woke up screaming with joint pain and was up for hours. I told her in the morning that maybe she should stay home and rest but she said I'm going to school! Mike, Noni and I dropped her off and than went to breakfast waiting for pick up. My aunt is her teacher and we thought maybe she should only stay for 2 hours that first day. We went to get her and she was doing great so we left her there until pick up. She had so much fun!! She got in the car and told us everything in detail. She said "mom, my teacher was talking about God and Jesus, so I told her that you have a brother named Anthony who lives in heaven with them." I knew than that there was extra angels watching over her when I couldn't be there. When we got home we were surprised to see that while we were gone our first 2 butterflies had hatched! And because the day wasn't already emotional enough, I looked up and thanked my dad and brother for the sign. I guess after me kindly yelling at them in my prayers every night for 10 months, they knew it was their time to give me a little signal that they're with her.
At this point, I'm emotionally drained and have a horrible headache so I say what the hell, let's go out for dinner. I know, I went from living in a bubble to germ overload in like 60 seconds! Sofia was over the moon happy. She loves going to restaurants!! Mike and I made it a point to start taking her out to restaurants from birth so that she would learn to behave and it worked, she's great in restaurants. Now, Noni hasn't been to a restaurant since her sisters birthday and at that time he was only 7 days old. He not as quiet or calm at 11 months. It was a great day!
The week of fun was just getting started! I can't wait to share about what we did this weekend. But it's past midnight and I'm exhausted, so Stay tuned tomorrow for part 2.
Thank you #teamsofia for all your prayers![...]

The Hard Truth concert for Pediatric Cancer

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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[...]