Last Monday was a chemo day we have been fearing a bit. In addition to our weekly Lumbar Puncture, Sofia was also going to receive 2 chemo's she saw in her first month. One of those chemo's has a higher reaction rate when the patient gets it for a second time. This was her second time. So we started our appointment with labs, where we found out her ANC had dropped to zero but hemoglobin and platelets still looked good. This meant no transfusions needed but no real immune system. Next Sofia went in for her third Lumbar Puncture and spinal chemo of this round. Then the hold my breath chemo. Luckily, no reaction!! So after the one hour mandatory wait time we headed home. The rest of Monday, Tuesday and Wednesday were spent playing at home... Lots of playing! I think we are all getting a little cabin fever. Thursday we went for labs and were happy that her ANC had jumped to 670 and still no transfusions were needed. Unfortunately an upset tummy caused Sofia to get sick in the car but she was good right after. With the higher counts, we moved forward with having "Christmas" with my side of the family now that everyone was healthy. Sofia had so much fun and now wants to have Christmas every weekend! On the morning of our second Christmas I noticed quite a bit of hair on her pillow when she woke up. I got a nervous feeling in my stomach but smiled and said "look!" Sofia smiled and said "Finally! It's taking forever to come out." Over the past two days her hair is everywhere! Between my postpartum shedding and her there is a lot of hair falling!! Part of me just wants to shave it off so she doesn't have to see it all fall out but so far it doesn't seem to bother her. Today, I heard her talking on the phone to my sister and she said "auntie it's me, the girl who's hair is coming out" and than they both cracked up. I think it will be harder for me and Mike than for her. Yesterday Sofia looked Pale! I knew a blood transfusion was in our future. Her energy level was great but in the middle of playing she got sick. It snuck up on her so she got a little upset, but again, she showered and went back to playing. Even though she was fine, it was the first time she seemed sickly to me, and I couldn't help but think, it's about to get harder. This morning was our last LP of consolidation!! As expected her hemoglobin was low and they started her with a blood transfusion right away. What I didn't expect, is that her ANC dropped again to 150. I had assumed once it went up last week it would stay up until we started the harder chemo's again next week. These counts rule our lives and you just never know what's going to happen with them. Sofia was not having it today! Though it's the same appointment we've been having for weeks, everything made her upset. She cried and complained the whole time, just wanting to go home. Once in the car she said she felt really sick and just wanted to sleep. It brakes our hearts to see her like that. She slept the whole ride home and I carried her in and onto the couch. My mom said hi but didn't even get a smile. Than my mom brought baby Michael to her and she lit up! She was hugging and kissing him while he was smiling ear to ear. She was back! Off the couch and into her room to play doctor with Grandma. She told my mom all about her day in total detail as if it was the easiest day ever. Cousin Vincenza arrived and our dance/karaoke party started. So beyond grateful that these kids who fight this horrible disease are so resilient!! We pray that Sofia feels good this week and her numbers start to climb. We are supposed to start the second half of consolidation next week but we need an ANC of 750 to start. Thank you again for the prayers, the kind words, the meals that are dropped off, the occasional Starbucks on our porch but mostly for the love and friendship!

On Monday Sofia started her second week of Chemo in consolidation. She had a lumbar puncture with chemo on Monday, IV chemo monday-Thursday and nightly oral chemo. We were told to prepare for some low counts and a big drop in energy from her red blood cells dropping. Sure enough, Monday's labs showed her ANC at 300, so she is neutropenic (basically no immune system). So we decided to lay really low this week so she could rest and not be around all the sick people that are EVERYWHERE right now! I swear, every time I go out in public and hear someone cough I want to run for the hills!! So I am still waiting for her drop in energy because this kid isn't slowing down. Yesterday we had her relaxing on the couch so we could do her chemo but she was off riding bikes and baking cakes the minute it was over. She is remarkable!! Tonight we celebrated the end of 2015, together as a family. When the year started I was hoping to get pregnant, which happened in January. I had a great pregnancy and a really easy labor. I had a beautiful little girl who loved her new brother and was about to "get big" and start school. Entering October with an amazing husband and two beautiful kids I would have called 2015 one of my best years. Then November 10th happened and our lives changed forever. So much beauty and sadness crammed into 6 weeks! So, I will always remember 2015 as the year Sofia got sick but I will also remember it as the year Sofia showed us all how to live, love and appreciate every moment of every day. I will also remember it as the year my family recieved so much love from family, friends and strangers. The year that I made some of the most amazing new friends and re-established the bonds with my best friends. But most importantly the year that our families came together in the most amazing way and remembered what is really important in life. I know 2016 will bring great things into our lives because we will live with love, laughter and faith. Happy New Year!!

It has been a busy but (luckily) uneventful week. After Sofia's long Monday we weren't sure what to expect. We decided to keep her on a constant dose of Zofran so she didn't get nauseous. Tuesday morning we started with our meds and than it was play time! As far as her mood, she was great. She was her normal 3 year old self. Laughing, playing and the occasional foot stomping when mommy and daddy say no. Her appetite is gone! It's crazy how different things are being off steroids. She went from eating around the clock to a couple of bites at meal time. Her steroid cheeks and belly have also gone way down. Tuesday, Mid day I put on my mommy Nurse gear and administered her chemo into the line attached to her port. I really played up the nurse thing which made it kinda fun. I was crazy nervous but it went well. Still can't believe they have us do these things at home. Wednesday was a lot of the same with the addition of a long nap! Sofia was running around chasing me and stopped quick, looked at me and said, I want to lay down. She was asleep in minutes and was out for hours. She woke up smiling ear to ear. The doctors and nurses always say that kids handle all of this so much better than adults. They feel good until the don't and the minute they feel better they are up and playing again. Christmas Eve was an early morning as we headed to the hospital for labs. After 2 hours of waiting, the labs came back and everything looked great. Her ANC was 5600, which is the same as any other health kid. We know that the chemo she started last Monday will drop her counts about 7-10 days after starting (so this coming week) but with that high number we could rest a bit easy on Christmas Day. Christmas was great! Sofia was so excited to see if Santa really came. And after three months of asking, she finally got her bow and arrow! Though, the easy roller has easily been her favorite gift. She's been riding all around the house non stop. As Mike and I would get stressed about the normal holiday stuff, I Had to stop and say, none of it matters! Sure, I would love to shop the sales, to go to my favorite midnight mass and for the house to clean, but truthfully right now I don't care about any of it. We were all home, together and feeling good, and that's all that matters. So our prayers were answered this past week, as Sofia had no real problems with her chemo. We start the process over again on Monday, so we pray for another good week!! And let's not forget about my baby boy! Happy to report that my little angel has been sleeping a 7-8 hour stretch at night! God knew what he was doing when he sent me that baby!! Hope you all had a great Christmas! Love to you all...

Today was day 1 of our second round of treatment, called consolidation. In order to start the phase your ANC needs to be at 750. When we went to the hospital last Thursday, to start consolidation, we found out Sofia's anc had dropped to 598 (they were 620 last Monday). So instead of doing all 4 chemo's, the doctor only did Sofia's lumbar puncture and administered a triplete of medications into her spinal fluid. We were told to come back on Monday and hope for that 750 so we could start. I remembered the wise worlds of another mom going through this, "her body just wasn't ready to start that day and it needed just a little more time to get strong." Sofia ended up having a great weekend and was feeling good going into today. This morning we headed off to the hospital and crossed our fingers as we waited got the blood test to come back. Finally, she was at 2600! With that we got the ball rolling, the very slow ball. The first chemo she was to get is very aggressive and it requires a specific amount of hydration. One hour of pre hydration, an hour drip for the chemo and 4 hours of post hydration. Lots of sitting around, playing games and coloring. After the first chemo was complete the nurse came in to teach me how to administer her chemo into her port at home over the next 3 days. What's scarier than getting chemo? How about when your mom tells you she needs to give you medicine and she's in a disposable smock, gloves, a mask and major eye protective gear. I told her I asked for all that stuff so I can play dress up nurse at home. Fingers crossed it goes well! As we were getting ready to wrap up they went over our instructions... Chemo pill is to be taken at night on a completely empty stomach, that means no food or drink. But don't forget that be cause of today's chemo, she needs to drink a ton of water. And don't forget she will also need to keep the nausea at bay, so give her some zofran too. So which is it, Drink all you can tonight or nothing my mouth for the chemo pill?? And when is the zofran happening??? It's quite the learning curve. Now we are home, water drank, meds down and Sofia's fast asleep. We struggled to get her medicine in as she kicked and screamed, but it's in there. Day 1 of 50 is done! Going back in on Thursday to check labs as these meds should make all of her counts drop and she might require a transfusion. Praying for little to no side effects and an uneventful week so we are good on Christmas! Oh, and Noni... He's awesome, just like his shirt says 😘

Last week, while still in the hospital, Sofia asked when she was going to take her picture with Santa. I reminded her that Santa came to the hospital but she said she wanted to see him at the mall. Going to the mall with her sounded like the worst idea, ever! But, I needed to find a way. Stanford seemed ideal since it is outdoors, but it's right next to the hospital and we can't be near that construction. I decided to call Valley Fair. I spoke to someone in customer service and explained to them that Sofia has a compromised immune system and I was hoping to be the first person to see Santa for the day so we could get in and out quickly with minimal germ exposure. She said she needed to make a call and she would call me back. I recieved a call an hour later letting me know that they were going to bring Santa in early, before the mall opens, for us. And, they wanted to pay for our pictures. I was so appreciative and we set it up for 7:45am Wednesday (today). I later recieved an email letting me know that I should just pull up and they would valet our car. Again, so nice! So last night we told Sofia that we were going to see Santa in the morning. She was so excited! After the news we had just recieved it was a good distraction for us as well. This morning at 7am there was a knock on the door and outside was a stretch limo to pick us up!! Or as Sofia called it "our fancy car". Turns out the valet company at the mall made this happen. Our driver, Rob, took us to the mall and we went in to an empty Valley Fair. Anusha, who works for the mall, was there to take care of us. We took pictures and chatted with Santa. Sofia even recieved a gift from Santa. Once we got our pictures, Anusha escorted us to Build A Bear where they had sanitized the store and let her build any animal she wanted, all compliments of Westfield Valleyfair. As if all of this wasn't enough, they also gave Sofia a gift card to use anywhere in the mall. We were blown away!! It was such a special morning for all of us. Attached are pics from our morning.

Yesterday, we received a call from Sofia's Doctor, asking if Mike and I could go up and meet with him. My stomach dropped and of course I needed to know why. He told me that in addition to the standard mrd test that came back last Friday as undetectable, he runs secondary tests to make sure the results are all the same. Unfortunately these tests came back detectable. Because of this, Sofia is being moved into a High risk treatment plan. I was in shock and so sad. Of course my thought is, the medicine isn't working. Here is the frustrating part. In order to be considered undetectable, standard risk, her MRD has to under 0.020%. Her MRD came back at 0.021%. So she is so borderline but because of that fraction they want to treat her more aggressively just to be sure. She is still in "remission" as 99.079% of the cancer is gone but she is now high risk. We received our new chemo schedule and though the length of time is similar, the amount of chemo she gets is about 4x more than she was going to get in standard risk. She will also be hospitalized 4 times during the next phase to receive very high dose chemo. I'm giving us today to feel sad and angry. Tomorrow we start our consolidation phase, and she will get 4 chemo's over 6 hours, so we need to be positive and strong for her. Sofia has been feeling great the past week and is back to her constant smiling and laughing. We had a really special morning that I will post about tonight. We pray that all of the new chemo gives little to no side effects and that her counts don't drop too low.

On Thursday morning I woke up extra early to ask the nurse if the had our new counts. Remember we were at 400 on Wednesday and needed to get to 500 to go home. Her count was 960! We were going to go home!! Before we could head home, Sofia needed to get her bone marrow aspirate and lumbar puncture with chemo. She was not happy when she woke up and found out she couldn't eat until after the procedure. She just kept crying and asking for her pizza! These steroids take over, big time. We took her over to the procedure room and I held her as they put her under. Watching that happen is one of the worst parts for me. She's so scared when we get in there and than she's out cold in seconds. The procedure was quick and she was already waking when we got to recovery. She quickly asked about her pizza!! When we got back to our room, Sofia got to eat and we began packing up. All the doctors and nurses stopped by in their hats that we gave them and sang with us, again. We gave the doctors all of our remaining hats and asked them to give them to any of the kids who wanted one. We were finally going home! Sofia was so excited to be home! I went straight to the shower and Sofia took an uninterrupted nap. Actually she has been exhausted and has been sleeping on and off since we've been home. Yesterday I received a call from Sofia's Doctor. He said he wanted to call me right away and let us know that he just received the results from her MRD and it came back undetectable! This means the cancer cells are gone and she is officially is remission!!!! We still have two more years of treatment, as they know if you don't keep treating it will come back. It's a marathon and not a sprint, unfortunately. Monday, we go back in and get Sofia's Picc line removed and her port gets put in. Though the port scares me, it will give her a lot more freedom than the Picc. After the procedure we sit down with her Doctor and get our "plan" for our treatment going forward. Sofia is so strong but she has been made stronger by all of the prayers and support from all of you. Thank you doesn't justify what we want to say to everyone! We pray Sofia handles this next phase of chemo well and we can sit tight for the Holidays!!

Tomorrow, December 10th, marks a big day for us. It is one month since I took Sofia in to the doctor for looking a little pale and finding out she has cancer. It is day 29 of treatment, which means we have completed the first and most dangerous stage of treatment. It is the day Sofia gets a bone marrow aspirate to see if the leukemia cells are gone. And, it's the day we think we get to go home! As you know, Sofia got a fever due to a bacterial infection two weeks ago. Though the fever only lasted one day and she has been feeling great ever since, we have had to stay in the hospital until her ANC reached 500. Yesterday this number was 80 and today it jumped to 400 so as long as it doesn't go down we get to go home tomorrow!! This couldn't come at a better time as Sofia got really sad today saying that we were going to miss Christmas because we always have to be in the hospital. I promised her that she won't miss Christmas, even if that means Christmas is on December 29th or January 4th. So tomorrow morning at 8am she goes in for a bone marrow aspirate and a lumbar puncture to put chemo into the fluid around the brain. She can't eat or drink anything from midnight on, which is going to be torture for my steroid eating machine! She normally wakes up at 5am starving so I kept her up eating until 11:59pm tonight. On Monday we will get the results from the bone marrow and blood tests. We are hoping for undetectable, which means the cancer cells are gone! I wish it meant this was all over but we still have a long road and a tough fight with two more years of treatment. We need extra loud prayers tomorrow from team Sofia!! Thank you all so much!

Still in the hospital! Well, we thought we might be going home today but, not so much. As I mentioned before, Sofia's ANC number has to be 500 to go home. On Thursday her number was 410 so everyone thought Friday was our day. Today when we woke up we got the news that it dropped to 170! I was bummed but more nervous that something was going wrong. The doctors have assured us that this is what happens in this first phase of treatment. Numbers go up and go down and go up again. The good news is that Sofia is still doing well. No fevers, and stable vitals. So we continue on in our home away from home. Sofia is still having her moments of steroid rage and sadness but for the most part her spirits are up! She hates sitting in our room so she looks for any excuse to take a walk through the halls. Yesterday grandma brought her some Christmas hats so we now dress up and walk around singing jingle bells, which all the nurses love!! Though it might be getting old for them, as she wants to do it about every hour. 😊 As you can see in the picture of her sleeping, she's starting to get a little "moon face" from the steroids and the non stop eating. Pizza is still her first choice with Rosemary panzanella crackers as her all day snack. It's crazy to see my daughter who barely ate one meal a day last month, eating all day and all night. Yesterday she had her 4th dose of vincristine chemo so she's been a little sleepier than normal, but didn't complain about tummy aches as much as she has with the previous doses. So now we hope and pray that she continues to feel good and her numbers start climbing again. No matter what, she goes in for her bone marrow aspirate on Thursday and we find out if the leukemia cells have been killed. It will be a stressful week but we will keep smiling and smothering her with love! Thank you to all of Sofia's army for the constant prayers and love! We are so blessed to surrounded so much love!

Hard to believe we have already been here for 5 days! As crazy as it sounds, our days go by really fast in the hospital! Sofia has been doing great. We found out that the fever was caused by a staph infection, which is pretty common. We all have staph bacteria on our skin which can get into your system with a cut or break in skin. The difference is, Sofia had zero immune system to fight the bacteria. When talking about our immune system, the magic number is your ANC count. It is considered dangerous if this number drops below 500. When we were admitted, Sofia's number was 0. That's the point, though. The chemo killed all of her cells, bad and good. Now her body has to start rebuilding the healthy cells. So anytime Sofia gets a fever in the next 2 1/2 years and her count is under 500 she will stay in the hospital until it recovers. Sofia has been fever free since Thursday, the antibiotics are working to kill the bacteria and her numbers are slowly but surely on the rise. The hard part right now are the steroids! I've never known anyone on steroids, but I've heard the term "roid rage". For a 3 year old, it's like being on a roller coaster of emotions. Sometimes there is hitting, sometimes there is screaming but almost always there is crying. The constant crying breaks my heart. To hear her say "I'm not happy and I'll never be happy again" kills us! Luckily there are points when the crying stops and she smiles and goes back to being a 3 year old. The steroids have also increased her blood pressure so we have added blood pressure medication to the list. And finally, there is the hunger. This just hit 2 days ago. My little princess who barely eats anything, is now hungry! Food of choice- pizza. Today I asked, what would you like for breakfast, she answered pizza. Lunch? Pizza. Dinner? A hamburger, oh and mommy I forgot, also pizza. And the milk! She can't get enough milk! The rest of us are hanging in there. Every day, either Mike or I (we switch each day) take the baby for a walk over to Stanford mall. Coffee, Jamba Juice, browse around Nordstrom, just something outside the hospital in the open air. It also gives each of us a chance to have a little one on one with Noni. Speaking of Noni, he turned 2 months yesterday and he is the best baby ever!! Every morning my sister drops him off and she comes back to pick him up in the late evening after his last feeding before bed. He just eats, sleeps, smiles and poops. He is amazing and super cute!! This isn't going to be an easy road and for us and it has just begun. But, my sweet girl has been put through the ringer these past 18 days and she's handled it all like a warrior! I often felt that Sofia was going to do big things and make an impact on the world around her. She's already started! Oh, and did I mention all of the nurses request her. Every time a new Doctor comes around they say, so you're the beautiful girl everyone is talking about! If you think her blue eyes are pretty now, wait until she has no hair and they are all you can see!! #teamsofia #sofiastrong