It was recently brought to my attention that it has been almost a year and a half since I last wrote a post. I knew it had been awhile but was surprised to realize just how long. If I am being honest I haven't wrote a post because it scares me![...]

Month 3 is behind us! Today was Sofia’s monthly blood work and check up. Even though sofia has been feeling great it is hard to not worry when we walk into these appointments. Just three weeks ago I started noticing that Sofia had a lot of bruising on her legs. This is a huge trigger for me as that was her very first symptom almost three years ago. After a couple of frantic conversations with her Oncologist I took a deep breathe and watched the bruises fade over the week. PTSD is real and it hits fast and hard!
Today Sofia was practically skipping her way into the hospital which puts me at ease. Happy to report that her numbers came back looking great. Deep Breathe. Do it again in 4 weeks!
Since my last post about Sofia’s foot and her AVN, things have gotten much better. Instead of daily pain in her foot she sometimes goes a whole week without limping or pain. We will still plan scanning her again in October to check the other bones. This summer we will just take activities day by day. Appreciate and enjoy every day!
Thank you for the continued support for our family. I will attach some pictures from the past two months. I hope you all have an amazing summer surrounded by people you love! #teamsofia[...]

Well, it has been one month since we finished chemo! It was a pretty great month for the most part. Sadly the post chemo high didn't last too long.
One thing we always knew was that the drugs Sofia took for two and a half years cause some pretty bad side effects during and also after treatment. 70% of all Pediatric Cancer survivors end up getting another serious health issue from the chemo. I wasn't quite prepared to be experiencing this so early!
About two weeks ago Sofia complained about pain in her left foot. She limped for about an 5 hours than she was running and jumping again. The pain would come back and then go away. On Monday night I noticed that she was now walking with her foot pointing in, so I took her to the Dr. first thing on Tuesday. After an x-ray we found out that Sofia has Avascular Necrosis (AVN) of her Navicular bone. Basically there was not enough blood flow to her done so it died and collapsed. The oncologists were not surprised as this is a pretty common side effect of the steroids that she was on for 2+ years. They also told us that if she has AVN in her foot she also probably has it elsewhere. My head was spinning as I thought about what this meant.
Today we went into Stanford Pediatric Orthopedics to find out more. The Dr. was running behind so some other Dr. came in and told us that there was pretty much no good news. The bone was dead, it would never come back, Sofia would end up with arthritis and eventually an arch collapse. She she avoid running, jumping and dancing for the rest of her life. And yes, she probably has it in other parts of her body but they aren't going to check. I was not ok with this so he went to get the main Dr. so I could discuss it all with him.
Mike and I were crushed. Sofia dances all day every day, she jumps on our trampoline daily and loves to run! Sofia asked what it all meant and we told her she could swim, take art classes, play golf. She started sobbing and said it all made her really sad. She said the only sport she wants to play is baseball. Mike jumped up and said "you are going to be a Designated Hitter and play first base, and I will make sure you are the best DH ever." We told her we would get rid of the trampoline and get a slide. We will make it work!
After a couple of minutes the Dr. we were there to see came in. He explained that yes the bone is dead but eventually a small amount of the bone will grow back. He also explained that the reason they do not x-ray other areas is because nothing can be done if they find it. There is no cure but many young AVN Leukemia kids only feel symptoms for about 5 years. He said she can dance around the house, she just shouldn't take tap or plan on being a dancer. She can run around the park, she just shouldn't play soccer. He said if you are going to get AVN, you want it in your navicular. When it hurts, let her rest and when it doesn't hurt, let her have fun. He agreed to do an x-ray of her hips/knees in six months but because she can run perfectly and with no pain there is no need to do it now. He actually had her running up and down the halls and said "she looks great!" Oh, the waves of emotions!
So, is it great news, no. But, as long as she stays cancer free,we can handle anything!!!
Now,we will mentally prepare for her every four week blood work in a week and a half. Hold our breathe and know everything will be fine.
As always, we appreciate the love and the prayers!![...]

Yesterday Sofia went in for her monthly iv chemo treatment, her 76th and LAST iv chemo treatment! Yes, the end is sooooo close. As this day has gotten closer my anxiety has been getting higher. There is a kind of comfort in knowing that the chemo is keeping any cancer cells away. It sounds crazy but it is real! So as we prepared for our appointment yesterday I was an emotional wreck! It is so surreal that we are almost done! We have been is this journey for so long that we almost have to re-learn how to live "normally" again. Now, we know that the first 6 or 7 months off treatment can be hard as Sofia detoxes and her body fights to build an immune system. So we will continue to take it day by day.
We were all so excited for yesterdays appointment. We had our poster made, our specials shirts on and gifts for the nurses. I was hoping the excitement of the day would make the actual placement of the IV less traumatic, but it was still pretty bad. Luckily once it was in, it was all fun afterward. We were so lucky that our former home nurse Kendall was there to administer her last treatment. All the nurses and Doctors came by to say congratulations and present her with a cake and a completion certificate. We had gifts and even a surprise visit from her Auntie and Grandma who showed up with balloons and donuts (it was donut Monday, after all).
We continued the celebration at home with a special dinner and a quick shopping trip, per her request. She has her last round of steroids this week and will continue to take her nightly chemo until March 16th!!! Three weeks to go!!
We have lots of things we want to do to celebrate the end of treatment. We are going to Palm Springs the weekend after she finishes and promised her another trip to Disneyland sometime soon. We will also be planning a party where everyone who has prayed for us along this journey can come and celebrate!! The date and location are TBD as we want to wait until the weather is a bit warmer.
Thank you from the bottom of our hearts for the years of support and love! #teamsofia is strong!![...]

Tests are back and everything looks great!! Bone Marrow was normal and the 1 in 1,000,000 test showed no leukemia cells!
We will finish out our two remaining months and than pray that we stay in remission forever! We know that many things can happen after treatment and it’s a stressful time but we will take it day by day. She will continue to get blood tests once a month to ensure it’s not coming back.
Thank you for all the prayers this past week! We will update again as we get closer to the end of chemo![...]

Oh 2018, we’ve been waiting for you!!
Today was an emotional day for us as it was Sofia’s last scheduled Lumbar Puncture! I wanted to be so excited for today but it’s hard to get excited or happy anytime you have to watch your baby get put under.
So after a better, but not great IV placement they prepped her for procedure. Even though she knew this was her last it might have been the hardest for her. As she gets older she understands more and has so many more fears. We met with the anesthesiologist and the NP to go over our usual “she gets really nauseous” talk and a plan for IV meds. Than I carry her (also getting harder as she gets older) into the room and hold her super tight until she’s asleep. I lay her down, kiss her four times, tell everyone to take care of her and walk out. Mike and I grab coffee and wait for the call that she’s in recovery. Today was the 24th time we’ve done this. 24 times in 26 months that I have watched and waited for her to wake up from anesthesia. If you’ve never had to watch your child be put under, you are so blessed and I hope you never have to. You think it would get easier, but it doesn’t. Because I wanted this to be her last anesthesia I asked the Doctor to do her end of treatment bone marrow aspiration today. This test checks if there is any Leukemia in the bone marrow and is usually done after treatment. This is the test that our Dr sends to a specialized lab to check 1,000,000 cells instead of the standard 100,000 cells. We pray that there is still no evidence of disease and that it NEVER returns! Sofia was tired and very sore today but had only mild nausea! We started our week of steroids, loaded her with Zofran and Tylenol and just cuddled all day until her nightly chemo. We hope to get her test results in a week or so and just continue with our final two months!![...]

The verdict is in... the port must come out! I've had such mixed emotions about today's surgery. The port just makes things a bit easier, especially if something big comes up. Also the idea of watching Sofia scream through IV pokes is gut wrenching!! But, the port out means a much less risk of infection and we don't have to run to the ER for every fever. It lasted almost two years and we are grateful for everything it provided us.
Sofia had a lot of anxiety heading in today but the team at LPCH was amazing and let me take her all the way into the surgical OR. She took a little longer to wake (over 3 hours) but we are now home resting and keeping up on our nausea meds.
Our warrior princess turns 5 on Friday so we plan to be ready for "party time".
Thank you all for your prayers. I ask that you give us an extra prayer for next week when we get our first Lumbar Puncture and chemo with an IV. #teamsofia[...]

It's been a busy month!!
After last treatment we were gearing up for our first day of school. Sofia was excited and a tiny bit nervous because she didn't know anyone in her class. Because Sofia doesn't turn five until October she's in Junior Kindergarten this year. Like always, she ran right in without any hesitation. She's only there half days but it's 5 days a week. It was so strange for me to not have her at home so many days in a row! The first week went great and than.... well she made it 5 days and got sick. It was just a cold but she did get a fever so we had to go to the ER. After 7 hours we made it home and had her rest for the next 5 days as we had an important trip coming up! Of course, Noni caught it 2 days later so we spent those very hot days locked in the house. Luckily everyone felt better by Labor Day so we were able to leave the next day for Disneyland! It was Noni's first trip and we had so much fun!! Sofia is an adrenaline junkie and Noni just waved and pretended to scare everyone. It was a perfect getaway for the kids. I love that she still lights up every time she sees a Princess! It was also extra special because Grandma surprised us at the airport gate. No one thought she could do Disneyland so soon after her surgery but she didn't want to miss Noni's first time. It was a special trip.[...]

It's been 2 months from my last update! Lots has been happening in our lives, to say the least. Sofia has been having a fun but mellow summer. Her health had been great which is the most important thing.
Last month she had her third to last lumbar puncture which she handled like a champ. Unfortunately her steroid week left her feeling a bit tired and cranky. Luckily, she bounced back after a play date with a friend!
She was thrilled that Grandma came to stay with us for a week after her surgery. She got to play real Doctor as we all learned the ins and outs of checking blood sugars and giving insulin. We weren't quite prepared for how hard the recovery from her surgery was going to be but she's getting better every day.
This next part of the post is why I haven't sat down to write. I have debated whether or not to share this information. Tonight as we sat at Stanford for 6 hours Mike and I discussed it and decided to share since it's a part of our story. In May we were very very happy to find out that we were expecting another baby. Having more kids was always our plan but it was put on hold when sofia got sick. Sofia has been so excited and had a hard time not telling everyone. She was pretty clear that it had to be a sister so we were all surprised to learn it was a boy. I went in early for all my screenings because of old age! Everything looked perfect. A couple weeks ago sofia went with me to my 4 month check up and sadly we learned the baby had no heartbeat. Because Sofia was with me, I had to act totally normal and my poor doctor didn't know what to do or say. I was scheduled for a d&c and we went on our way. I later explained it all to Sofia and she was more worried about me. Luckily she still thought of the baby as an egg so it wasn't too real for her. Over the week, this event crushed me. I think it was kind of a tipping for my emotions. Mike has been amazing and now we are both focusing on how lucky we are to have two beautiful kids. Part of me feels like maybe I was meant to lose a baby so I lost this one so that I can keep Sofia. But truthfully no one should have to lose any babies. So, I think we have had our fair share of shit to deal with over the past couple of years. Again, this is hard to share but it's hard to write about how we all are and not include this. People keep telling us that we are so strong but we don't have any other choice. Nothing in this life matters more to me than my family! We are obviously still very sad and are taking our time to heal. This next year is going to be about healing, both mind and body, for all of us.
So we move forward...
Last week Mike, the kids and I went on an amazing two night get away to Sonoma. We did nothing but relax and spend time with some dear friends and their kids. It was perfect! Than this past weekend Sofia got to be in a very special fashion show with the Austen Everett Foundation. All of the models were girls who are or have battled cancer. It was such a special event.
Today Sofia went in for her "easy" chemo, which is normally about an hour appointment. Unfortunately she had a clog in her line so they couldn't get a blood return. After port meds and lots of waiting we were finally getting our chemo, 6 hours later. Sofia's numbers looked great. Noni had hand, foot and mouth 3 weeks ago so we are so happy that Sofia didn't get it as well. By the way, hand foot and mouth is AWFUL! I took Noni out of the house once in 3 weeks to go grocery shopping and 4 days later he's so sick! Not looking forward to cold and flu season!!!
Next week Sofia starts school! This year she is going into Junior Kindergarten and we are hopeful she will make it more than she did last year. She is so excited about going to school!![...]

Another month down! This past month was busy for us but uneventful health wise! That's the way we like it.
Over the past month we celebrated Sofia's last day of school, her first dance recital, graduation parties, Birthdays, Father's Day and a baptism! It feels good to be celebrating with our friends and families! Sofia also started swim lessons which has been amazing! After just one session, she was swimming! We only have two days left but she will continue to practice all day, every day at home! Between our pool and our trampoline she is constantly moving! She is exhausted at the end of the day.
We also did another awesome thing, but I'm saving that for a separate post!
Yesterday we had out last treatment in our first year of maintenance!! The chemo infusion is only 5 minutes but it's a long day! Arrive and wait, labs and wait, get into a room and wait, talk to the NP and wait, chemo check and double check and wait! Finally you're done and you have to wait for the pharmacy to finish all your home meds! Luckily the vincristine chemo doesn't seem to bother her but today she was complaining about her tummy hurting which is most likely from this round of steroids that she takes twice a day. Her counts were great at 2200 but they are going to keep her home chemo at 50% for another month.
Next month starts our second year of maintenance, which means LP's are only once every 3 months!! I have held Sofia while she gets put under, more times than you can imagine. At the end of all of this I will count but right now I don't even want to know the number. Looking forward and not behind.
This next month will be about playing, swimming and helping take care of my mom. After a very hard year on drug that took her to the brink, her tumor has shrunk enough that they now feel it can be removed! So on July 3rd they will remove her entire pancreas. When she wakes up she will be diabetic but she will hopefully be cancer free! It is a long hard surgery but that lady can get through anything! My mom had lost her son, her husband, her parents, her sister and countless friends. But even on her hardest days she makes sure she comes to visit Sofia and Noni, and make them feel special. I can't possibly explain how lucky I am to have her as my mom!
So thank you all for your love and prayers for us. When we started this post 19 months ago, we had no idea what the future had in store. And today, we still have no idea! But we have learned to love and appreciate every day. And that the power of prayer is strong! #teamsofia[...]