Another month down! This month was a bit more challenging than the past few, but Sofia rolls with it all.
On Sofia's last treatment day they decided to bump her chemo up from 50% to 65% because her numbers had been stable for months. Although we hate giving her chemo she needs it to keep the cancer from returning. So ideally we could inch closer to 100% of her dosage (though most don't take 100%). Well 2 weeks after the increase I noticed a change in her eating and activity level. I called and requested blood work for the following day. She had a 11:30am appt and she didn't get home until 6pm! Crazy enough, about 7 nurses were out sick so the floating nurses were having a hard time accessing Sofia's port. Her port wiggles around a bit and can be tricky if you're not used to it. Finally got her accessed and it had a clog (also common if not used often). So after a lot of waiting the labs were back and she was neutropenic. This means we were on a chemo hold and went back on house arrest for Mothers Day weekend to avoid any illnesses. We don't mind being home on the 90 degree days because it means pool time! Unfortunately our weather can't seem to make up its mind, 95 to 63 in 2 days??
Luckily, her counts recovered after 5 days so we could restart treatment. Her eating is still not great because nothing tastes right. It's been a struggle because she wants to eat but spits almost everything out. So right now we alternate between nectarines, pizza crust and chicken noodle soup (from one specific restaurant). Her doctor said that next year after she finishes treatment food will start to taste really good and she might eat too much.
This past Monday Sofia had another Lumbar Puncture with 5 chemos and started her steroid pulse. She woke up a bit cranky but by the time we got home she felt great.
The next morning we surprised her with a trip to The Monterey Bay Aquarium and the Santa Cruz boardwalk. She had so much fun!! Maybe a bit too much fun because she was wiped out the next day and just wanted to lay on the couch and relax.
We are so blessed to have Sofia handling all of this so well! Sadly this month I have heard about too many kids who have lost their life to this exact disease, most from relapse years after finishing treatment. It makes me sad, angry and so scarred! But we have to have faith that God will keep our baby cancer free, forever!
I'm the meantime we won't stop fighting for all the kids by raising awareness and money so we can find a cure!!!
Thank you all for your love, support and prayers![...]

Day 1 of Cycle Four in Maintenance! We had a pretty good month since our last hospital visit.
First big news, Sofia went back to school for the first time since September! Sofia had only been to school two days in the past so she didn't really remember what she was missing. Given that she missed basically the whole year I told her to just go and have fun and not worry if kids could do things she couldn't do. Well, she jumped right in as if she never missed a day. She loved to do school work and she and I work on it a lot at home so she was happy that she was "really good at school". So while Sofia was at school I went for a workout and put Noni in childcare for the first time ever. He did great, too!
Now, when you leave your house, you get exposed to germs. The stomach flu hit our house, hard! Luckily it was only a 24 bug so we all got it and were over it within a week.
Sofia thought we were all wimps with our reactions to throwing up. She literally woke up, threw up and went back to bed. Mike and I were lying on the bathroom floor, crying like babies. It was pretty funny when we thought about it after the fact.
We had a beautiful Easter, some fun neighborhood play dates and a couple of Birthday parties. It was a good month!
Today Sofia went in for a lumbar puncture with triple chemo in her spine and one in her port. Each cycle in Maintenance is 3 months. For our first four cycles we have to get 2 lumbar punctures in every 3 month cycle. So today is our first and next month will be our second LP in this cycle. The good news is that after this cycle we move to only getting 1 lumbar puncture every 3 months. This means we only have 4 LP's left!!!!
Sofia's counts were great today so they decided to bump her nightly chemo up to 65%. We are praying this doesn't take a huge toll on her ANC so we will check counts again in 2 weeks.
Though it was a long morning Sofia was actually excited to go to the hospital today because her friend has been in-patient with fevers for the past 6 days. We visited her over the weekend and Sofia really remembered what it feels like to have to sleep there every night. Though she didn't get to spend time with her today, it made her feel better knowing that they were both there. On the way out she said "other kids don't really know about hospitals, like we do." There is a lot of thoughts going on that little head of hers. She really does inspire me every single day.
When we came home I told her it was a take it easy, jammy day. So she put on her finest princess Jammies with every piece of jewelry she owns and a tiara. Than she just relaxed on the couch. Just a normal Monday!
We are so blessed with our support system, our families and friends.
Thank you all for your prayers thus far and please continue to pray for Sofia and all the other kids fighting for their lives.
Love #teamsofia[...]

more pictures of the Gala! Also a picture of us prepping Sofia's meds for the week!!! She is such an amazing girl.[...]

We had such a GREAT weekend!
As you might remember, last summer we traveled to Orange County to visit NEGU and fill Joy Jars. The Jessie Rees Foundation: Never Ever Give Up - NEGU has been a big part of our lives since that trip. This past weekend they had their annual Gala to raise money and honor many individuals who have contributed in various ways over the past year. We were lucky enough to be invited to this very special evening!
Since the event was being held at The Disneyland Hotel, well how could we not get a little Disneyland in!!! What's even better was that we got to do it all with Ava and her family!
Though Sofia knew we were going to LA she had no idea we were going to Disneyland. So, minutes before we left for the airport we told her the secret, and she screamed!
Since we were only going to have 24 hours for the parks we went full force! Given that Sofia and Ava are very sun sensitive and get tired very quickly we were able to skip the main lines and go through the fast pass lines, which made things so much easier. Sofia made it very clear that she was not going on any roller coasters, that is until she tried one! She definitely has her daddy in her with the rides and I'm happy she's not scared like me! Since it was going to be such a packed weekend we decided to leave Noni at home. Of course, he got a fever the day we left!!! Mommy guilt was kicking in but his aunties, grandma and cousin gave him plenty of cuddles.
On Saturday night we were overwhelmed by just how amazing the Jessie Rees Foundation is and were so inspired by the Gala. Ava and Sofia even got to go onstage and present an award!! But the highlight of the night was when the girls got awards for being so courageous! The night was full of joy, tears, inspiration, dancing and even a wardrobe change by both Sofia and Ava (2 dresses are better than 1)! It was an amazing weekend!![...]

March 16th is a special day!! In exactly 1 year, on March 16,2018, Sofia will finish her treatment for Leukemia!!! Instead of talking in years, we will talk in months, until it becomes weeks, days and minutes!! To celebrate the day we decided to raise some money 💰 for Pediatric Cancer. So if you would like to buy this awesome shirt for $20 you can do so emailing [email protected] . It comes in men's S-4XL and kids sizes S-L. You all are Sofia's Army, and we couldn't have made it this far without you! #teamsofia #oneyeartogo #goodbyechemo #sofiasarmyfightlikeagirl[...]

I can't believe it's day 475!
Today Sofia went it for another Lumbar Puncture with chemo. Though I absolutely hate LP's, we have found comfort in having a routine on these days. Given Sofia's extreme sickness after her Lumbar Puncture in December we have started taking every pre and post step possible. It worked well last month so we crossed our fingers this month and did an exact copy of last month. Happy to report that Sofia did great and had a really good day post treatment! We even went out for ice cream and dinner (she gets the ice cream first because she can't eat dairy near her evening chemotherapy). Her ANC is lower than it's been in months, at only 590. All of her other numbers look good so we just need to be cautious and check again in a couple of weeks.
After our ER scare a couple of weeks ago, we've had a pretty quiet month. The rain kept us home, even more than normal. We tried to take advantage of every sunny moment outside! Sofia was also lucky enough to be invited to Disney of Ice. She had so much fun!! But the highlight of the past month was when Mike, Sofia and I attended an amazing event called Ava's Kitchen. As you all know, Ava is Sofias bestie who we went to Hawaii with. Ava's Mom, Ashley has been working for months on a charity event for NEGU and children battling Pediatric Cancer. The evening was perfect, emotional and inspiring. And somehow, the normally quiet, and a bit shy little girls, completely transformed into The belles of the ball! They were on stage cooking with Michael Mina, smiling from ear to ear! Oh, and did I mention that the evening raised over 200K!!!!
It means so much for us that Sofia understand the importance of giving back and being grateful for every day. It's something that we will be focusing on for the next 40 days, especially. We have our "grateful bag" ready and every day during Lent we will put one item into the bag. At the end the kids will donate the 40 items to The Thrift Box in Willow Glen, where all proceeds go to LPCH.
In no way do I look at my life as easy, but I know it can be worse and we are so grateful for every moment together!!!
We have some exciting days coming in March and we can't wait to share them with Team Sofia!
For those of you who have been asking about my mom, she's doing well. She had a pretty hard time her first few months on her medicine but she's settled into a good dosage for her body. She has had some rough moments but right now she's feeling good, especially when she's with her grandkids! She comes over to visit three times a week and last week when she walked in, Noni yelled grandma! He, of course, got spoiled rotten that day!!
Thank you to all of you for your continued love, support and prayers! We feel them all!!![...]

Yesterday was a new and scary experience in this horrible cancer journey!
Sofia has been doing great recently. She had her lumbar puncture with chemo and steroid pulse last week. She handled it all like a champ! No tummy aches, no sadness and no throwing up! We are still staying low profile with all the cold and flu going around.
So I was very surprised when yesterday morning, Sofia woke up and felt warm to me. She said she felt great, was running around, eating and drinking, all with a low grade fever. At about 3:00pm her fever spiked to 101.4 which is an automatic trip to the ER. Again, she still feels good. So I'm confused and slightly nervous.
Stanford ER is great getting us back right away to one of the special rooms. Labs were drawn for bacteria cultures and for our standard blood tests. Then we just sat and played. We sat and sat! Eventually our nurse came in to tell us Sofia was not neutropenic so there was no need for antibiotics. I asked what her anc was and he said 8600! Now please remember that Sofia's anc has been living at 1200 for over 3 months and the highest it has ever been was 5000. When the nurse saw my surprise he started doubting the number so I asked for her white blood cell count so I could calculate. He told me her WBC count was 9.8 and I almost fell over. This number has always been either very low up to 2.8. The nurse was even surprised when he looked at her numbers from the past. He said, let me go talk to the doctor. Two hours went by! I kept asking what was going on and they kept saying they were waiting for oncology. We were having a million flash backs to waiting for hours in that same ER with a healthy little girl who had been getting fevers for no reason, with the night ending in a leukemia diagnosis.
Finally, 4 hours after our lab draw the resident came in and said we could go home but we needed to contact oncology first thing in the morning. I questioned the high WBC count and she said she couldn't speak to it. Another doctor came in and said we should get labs done again the following day and if the WBC goes down than it was her body just fighting something but if it continues to go up it could be a relapse, but only time will tell. I thought I was going to pass out!
So we left and I held my baby all night watching her sleep, praying to God that this wasn't happening.
Today we, not so patiently, waited to hear from her oncology team. Than I got an email from her NP that said "labs look fine, keep her hydrated and let us know if she spikes another fever." What?? I sent her another panicky email about no symptoms and the word relapse. She promised me that everything looked fine and that the number was probably high because Sofia's fighting something. I was still nervous! Than, the email from her oncologist came. He explained that though the WBC was high all of the cells were mature (leukemia is basically when you white blood is overtaken by baby, immature cells that don't work). He was very angry that anyone said the word relapse to us. He promised me, the labs were fine.
I read it, I took and deep breathe and I cried. I was happy and terrified of worrying about this for the rest of my life.
After calling Mike to tell him the news, I sat down with Sofia to talk to her about it. She knew I was nervous and I didn't want her to worry. I explained to her that I was nervous about her numbers last night but that her doctor said everything looks great. She jumped up and gave me a huge hug and said, mom, don't worry, I'm ok, I'm all healthy.
Oh, my heart.
So, we did as we always do and had a dance party. Noni now copies Sofia's moves and it's hilarious.
One day at a time!!!! [...]

.[...]

This post is long overdue! To be honest, I wrote a very long post last week and while typing the past line my computer crashed! I was too exhausted to start over.
As a quick recap… We had an amazing Wish trip to Hawaii. Apparently that hotel can be very crowded and not enjoyable during high season, but we hit the perfect week. Sofia felt great the entire trip after a questionable day before departure. Getting to go on that trip with our friends was priceless. Though I am very sad that we had to meet through both of our girls getting cancer, having them in our lives has been such a blessing. And for those who asked, I didn’t get my spa treatment but I did get to paddle board, one night the mommy’s got to go out for a drink alone and Mike and I got away for a lunch. It was a perfect vacation for everyone!
We were happy to come home and enjoy the Christmas season. We made cookies, decorated every room, went out to see the lights, visited a few Santas and listened to Christmas music all day, every day. If you haven’t caught on, we listen to a lot music in our house. We made three special trips to the Hospital to drop off toys for the kids, as we were in the Hospital last December and we know how much those gifts mean. It is very important to us, that Sofia understand the importance of the kindness we have received and the importance of giving back.
We spent Christmas and New Years at home, together! Nothing more that we could ask for.
When we got back from Hawaii both Michael and I came down with a cold but luckily lots of hand washing spared Sofia from getting sick. For the past 6 or 7 weeks Sofia had been on 50% of her daily and weekly oral chemo and her ANC has stayed steady at 1200. Last week we went in for her monthly IV chemo and her nurse decided to bump her once a week oral chemo to 65% and keep her nightly chemo at 50%. We are hoping this slight bump up does not effect her counts too much because we want her on as much chemo as possible without crashing her counts. We will get a blood test next week to see how she is handling everything.
This last appointment was especially good for me because I had the opportunity to sit down with Sofia’s oncologist. The way Lucile Packard works is that we really only see our Nurse Practitioner when we go in for visits. I had a couple of things on my mind so I was really happy to see him. My first question was about Sofia’s Lumbar puncture IT chemo. The “regular” protocol in the US administers Methotrexate into the spinal fluid for Intrathecal Chemo. Sofia is on a study at Stanford where she receives 3 different chemos in her IT. I have been questioning if maybe why this is why she is getting so sick after her LP’s and if maybe we should drop out of the study. He quickly made me feel better, letting me know that this triple chemo is now standard protocol for all Leukemia patients at St. Jude. St. Jude has already proved that this combination of drugs causes less side effects than methotrexate alone and kids receiving the triple have a much lower % of relapse in the spinal fluid. So, we will stay on our study as that is exactly the point of LP’s.
The other thing I wanted to discuss with him was me. Sofia is looking good and feeling good and my nerves are shot! I guess you spend the first year just focusing on your current step and trying to get to the next step. Now that we are in maintenance and we have more freedoms it is all hitting me. If you saw Sofia out on the street you would never know that she is currently fighting to keep the cancer out of her body, but I know and it’s so scary. At night while she sleeps I lay there and think how did this happen to my baby? I try so hard to focus on all of the good from that day and slowly the thoughts of 70% of these kids will get a different life threatening condition because of the chemo. I think about worrying it could come back every day for the rest of her life and it is overwhelming. Than you feel guilty, as there are many parents who have lost their kids who would be happy to live with fear as long as they had their kids. You get the point, it’s consuming my mind. Her Doctor told me that I have the first stages of PTSD (very common for parents) and that it will likely get worse when treatment is over, so I need to start feeling with it sooner than later. The start of 2017 sounds like a great time to start, so that is what I will do.
To end this post on a lighter note I would like to tell you what we have been doing since Christmas. A couple of weeks ago, while watching Carpool Karaoke, Sofia discovered One Direction. Her first words were, can we rewind this. It was instant Love. Now, if she’s awake, she wants to be listening to or watching One Direction. I have seen every video more times than I could possibly count. We all (including Mike) know every word to every song and could probably act out the videos. If you happen to see us in public, we have it on repeat on my phone as background music while we walk. We are 1D all the way! She’s 4 going on 14!!
I hope you all had a Merry Christmas (and Happy Hanukah or anything else you may celebrate). I wish you all an amazing 2017! Our goals are health, mental focus, lots more laughs and quality time with everyone if our lives.
#GoTeamSofa[...]

Post written Tuesday (the 6th)

Thank you for all of the prayers and positive thoughts! We were thrilled to hear that Sofia's numbers were great with an ANC of 1200 (right where they want it). Smooth sailing, right?
Sofia woke up from her lumbar puncture not feeling good, at all. Even though she had a good dose of zofran while in her service she was throwing up on the drive home. She continued getting sick all afternoon, even after our second and third lines of defense (lorazepam and benedryl). The nurses suggested I re-dose zofran early but that didn't help either. Until 6pm we weren't sure if we would be making the trip.
Luckily, Sofia started to feel better in the evening and got through the hole night without getting sick. Our limo arrived at 5:30am and we were off!
We have been keeping Sofia on zofran and benedryl around the clock, but she did great on the long flight. Noni, not so much! That boy LOVES his twice daily naps, but will only sleep in his crib. He was overly tired for most of the 6 hours!
Oh well, we made it and we are thrilled to be here, together! I'm so blessed to have Mike, Sofia and Noni time all day/every day for the next 5 days (with the exception of my one spa treatment :)
Aloha! 🌺[...]