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[...]

Day 50, the last day of Delayed Intensification!
It's hard to believe that we reached the end but the past 60 days (how long it took with delays) seemed like forever.
This week was good but we have been dealing with cytarabine side effects all week. Sofia needed a blood transfusion on Wednesday, she's had zero appetite and dropping counts. We were hopeful that labs today would show her counts coming up, but she's at zero. 👎🏼 So even though the chemo is done for this round we can't move forward until her ANC recovers back to 750. We will get labs again on Tuesday and see how it's progressing.
Sofia is still excited about meeting Buster Posey but always has to talk about Hunter Pence in the same sentence.
So, now we need to start thinking about maintenance which I guess means "living" a bit more. Since diagnosis, so much has been out of our control. The only thing I could control was her surroundings and keeping her space as clean as possible. We made it trough the whole winter with no colds in this house! Naturally, the idea of letting her go to school (guaranteed cold) or walk into a mall scares me to death. Today the nurse told me that sometimes maintenance is hard emotionally for the parents because you get a bit of breathing room and the emotions you haven't been able to focus on, start to kick in. PTSD is very common for parents of sick children. It's good to know so we can deal it as it comes. Though I know re-entry to life will be good for all of us, it sure is a strange feeling. I might need an anti-anxiety on her first day of school!!
The one thing I know for sure is that my children are the strongest, cutest and most loving people, ever! We are so incredibly blessed to be able to wake up every day to those adorable faces!!!
This was a scary phase but we made it through surrounded by all of your love and prayers, and we thank you! If you're going out this weekend, have a glass of champagne for me and cheers to the end of DI![...]

Delayed Intensification Day 37... 13 days to go!
We had a pretty good week after we finally started our day 29 chemo. We kept Sofia on a steady dose of zofran which seemed to do the trick as she didn't complain of nausea all week! Our at home chemo, both IV and oral also went without a hitch. On Monday after I administered her last IV chemo of the week, I had to de-access her port. I've seen this done countless times and felt pretty comfortable doing it. Those of you who have any experience with ports or Picc lines will know that the most challenging thing is not the actual de-access, it's removing dressing! The bandage they put over the port has to stay on there nice and strong so it hurts, like really hurts, when removed. Luckily, Sofia is getting better with it, but there are still many tears shed. After we were free from the port we had three days to play, swim and shower before getting accessed again yesterday. The chemo she received last week is supposed to drop your ANC, your red blood cells and your platelets. As of Wednesday, Sofia's RBC and platelets were good and her ANC was 840, so we were happily not neutropenic or needing transfusions. We would get another blood test on Friday morning before her procedure.
Thursday night, our normally very happy son, was a bit whiny at dinner time. As I went to get him, he was burning up with a temp of 101.5! Panic sets in as this is the one stage we don't want Sofia to be exposed to anything. I quickly got him some Tylenol and called our pediatrician (yes, I have his cell). We decided I would take Sofia to her appointment on Friday and Mike would take Michael to the pediatrician. I was crossing my fingers for an ear infection! Poor baby is sick for the very first time and all our attention has to go to Sofia.
Luckily my mom also had an appointment at Stanford yesterday so she was able to come with us. Now that Sofia has had so many of these lumbar punctures she now knows she doesn't like "the sleepy medicine" and she panics when we get into that room. I hold her in my arms until she's asleep and than I lay her down. It never gets easier for me so it was nice to have my mom there when Mike couldn't be. Knowing that Sofia has struggled with vomiting after LP's the anesthesiologist thought he was mix in some benedryl with her zofran. Word to the wise, propofol and benedryl lead to a horrible wake up!!!! The propofol is pretty easy to come out of, but the benedryl is not. So instead of just waking up she was like a wild animal arching her back, flailing her arms and screaming loud for about 15 minutes straight! The nurses and I had to hold her down until it wore out of her system. It was horrible to see and I hope to never see that again! I'll take the vomit!!
As my nerves were completely shot, I got the call from Mike that it's a virus and he was contagious before the fever. The nurses told me there wasn't much we could do now other than lots of hand washing as we went between the two of them. We had just gotten the results from that mornings blood test and her ANC had dropped to 360! Yep, neutropenic and can't fight off germs. Any fever for Sofia is a guaranteed hospital stay because her ANC is expected to stay low for about the next 4 weeks. Considering we never leave the house, I'm so confused how he could have gotten sick?! Our Doctor told us that adults are carriers of lots of different viruses that we don't actually get but we pass on the germs. So you run to the store to get milk and you bring home a virus, awesome.
Sofia felt good yesterday and feels great today. She's not happy that she can't hug and kiss her brud! Noni's fever broke today, so now we are just taking it all day by day, praying for no more fevers in the house.
We will continue giving IV chemo until Monday and than de-access for the last time at home. So, 13 more days, 5 more IV chemos and 6 more days of oral chemo. Praying for no fevers and no transfusions during these last few weeks of DI! I know you will all be praying with us.
To end I would like to acknowledge that today is my 6 year wedding Anniversary. When we met with Sofia's oncologist for the first time he said this process will either make you two stronger or it will tear you apart. I saw very early on what he meant. It's very hard to make your marriage a priority with a newborn and a very sick toddler. We don't go out, we rarely eat dinner at the same time and Sofia sleeps right between us. But, Mike and I know that we are stronger and better together than apart, and that's all that matters. I didn't get dressed today but it was a Happy Anniversary because we were all together. #teamsofia[...]

ANC is 770 so we are good to go! Just waiting to go in for her lumbar puncture where she will receive 3 chemos in the spine. When she wakes up they will continue hydrating before getting 2 more chemos in her port. All followed by 4 hours of post hydration. It's going to be a long day!!! Sofia won't feel great for the next 30 days and all her counts will drop pretty low. But, this is the end of DI and maintenance is just around the corner!! Thank you team Sofia for your prayers!!![...]

just some pics from us as we've been waiting to hit counts! Hope everyone had a great 4th of July![...]

Day 28 of Delayed Intensification! I haven't posted an update in a couple of weeks because it's been a rough time. I try to stay positive as I believe in putting positive energy into the world. Well it was hard to put a positive spin on the past couple of weeks! Sofia had a really hard time on her second week of steroids. She basically lived on my lap and was sad, emotional, angry, tired and hungry... All at the same time!! Mike and I were both mentally and physically exhausted. In the past 2 weeks we have also received the news that two of our family members have been diagnosed with cancer, one of which is my mom. As many of you know, my mom is at my house 5 days a week, helping me with everything and anything. She has been a daily part of Sofia's life since she was 4 months old when I went back to work. To say our family was thrown a curve ball is an understatement. Obviously with all of this I was having a hard time with my positivity!
So now, with a week off of steroids and some more clarity about my moms tumor, I can give thanks again and know that we are strong enough to get through this. Sofia is back to her happy, loving, energetic self!! My moms tumor is treatable and she has a world renowned Stanford Doctor fighting with her.
Sofia is half way through delayed intensification but we are on hold right now waiting for Sofia's counts to recover. To start this second half her ANC needs to be 750 and as of Friday she was only at 67!!!! So she basically has no immune system which scares me but we are hoping the numbers rise fast. We will gets labs again tomorrow but I'm assuming we won't start until some time next week.
Life is so precious, and as we've learned too many times this year, it can change in a moment! I don't know that I'll ever understand why this is all happening in our lives I am sure it will change the way I live and love forever. God has a plan, it's just sometimes hard to see![...]

Today is Day 15 of Delayed Intensification. Today is also a great day.
The first two weeks went pretty darn great. Sofia got a little sad from the steroids for 1 day. She also got tired for 1 day.
Today she had the last dose of the "red devil" chemo, so good riddance! She also starts week 2 of steroids (she had days 8-14 off). Given that it's her second round we should expect the symptoms to be a big stronger, so day by day. We will keep her on zofran around the clock for the next three days to help with any nausea. Next scheduled chemo isn't for 2 weeks or longer, depending on counts.
When we arrived to the hospital today I was a nervous wreck because today has been 14 days since her last bone marrow aspirate. That special 1 in 1 million test takes 14 days to get results. So as Sofia's NP walked in I held my breath and she said no results yet! She then told us our Doctor is going to Europe for 3 weeks but they should for sure be back when he returns. I told her she was crazy if she thought I was waiting 3 more weeks. She promised that she would have a doctor call us even if it wasn't our Doctor. I agreed and we moved on with the "plan" for the rest of DI.
As we finished up chemo and the nurse came in to de-access Sofia's port, both our Dr and NP walked in. He was waving a sheet and was saying zero zero zero zero zero!!!!! Finally the words we've been waiting for... Sofia's leukemia is undetectable in every test possible! 1 in 10,000 = 0, 1 in 100,000= 0 and 1 in 1,000,000 cells = 0! I of course sobbed and through tears told him he could go ahead and go on vacation. So, now we power on and continue with 2 more years of chemo to make sure it never comes back!!!
7 months ago I realized how little control we all have in our lives. I've had a lot of dark moments and a lot of tears. But Mike and I promised to always smile and be nothing but positive in front of Sofia. Today when she saw me crying happy tears she just looked and me, laughed and gave me a kiss. She is literally my strength. Mike is the definition of positivity and baby Noni is 17 pounds of pure joy. Together we make a pretty amazing team!
Thank you all from the bottom of our hearts for your prayers, your positive energy and your friendship.[...]