Had a great weekend playing at home! We even picked up Padrino, who is staying at our neighbors, and took him for a walk. 

Counts today came back at 420. Still neutropenic and not ready to start chemo. We will come back on Thursday and try again![...]

We are still waiting... On Monday we went in for labs to see if we had hit 750 so Sofia could start round 2 of consolidation. Since last Thursday she was only at 99, we didn't have too high of hopes. As we expected, she wasn't at 750 but she had raised to 580. The good news was that she was not neutropenic!         The plan was to go in again today to re-check counts and possibly start tomorrow. We don't love the idea of staring on a Friday because that means we are administering her home chemo over the weekend when the clinic is closed. There is just a sense of reassurance and support when you know the clinic is open and you don't have to go to the ER if something comes up.                                       So with this holding pattern, it has been 10 days since Sofia has had chemo. You would think she'd be feeling great but she's actually felt the worse that she's felt since this cycle started. She has no appetite! This is so hard because I want her to nourish her body but she just has no desire to eat. When she does ask to eat, she takes a bite, gags and spits it out. I know when she gets a certain look on her face that her tummy is feeling really bad. She won't always admit this because it means  I'm giving her medicine for nausea. So, I've just decided to give her the zofran as soon as I see the first sign and not wait for her to tell me. She has also been very tired. She goes from laughing and playing to I want to lay down in about 10 seconds. So we are letting her call the shots, she plays when she wants and rests when she wants. Most moms cringe when their kids "nap" at 4pm! I let her because her body needs it but it's still hard to do because I know she'll be up all night and exhausted tomorrow.                                     Given that we are in our house all day, every day, we needed another form of stimulation for her. Prior to Sofia's diagnosis, we had enrolled her to start pre-k on December 1st. We took her to see the school and were supposed to go buy a lunch bag the day she was diagnosed. She asked about school early on in the hospital and we told her it was going to have to wait a bit because the schools have lots of germs that she can't be around. My aunt has been running a pre-k in Santa Clara for many many years and she reached out to me and offered to have Sofia be part of her class. One of the parents set up a large tv screen and computer in the classroom so they can skype with us at home!  My cousin, who also teaches in the pre-k, arranged for Sofia to have a uniform and they put together a packet for her every week. This week we had our first day of school! She of course didn't say a word and just stared at the computer. We only skype in for a short period, usually for story time, or instruction on a project that we got in our packet. But each time, 4 kids stand up and introduce themselves to her. We decided to try again the next day and she did great! She talked and participated and was so happy. She can't wait until she can go to school there (and not have mom teach)! She already told me that she wants to do school work with dad, because I'm her mom and not her teacher. I'm happy to give this one to dad!                                                   We went in today for labs but left before they came back. We thought for sure her numbers would be up so we promised Sofia we would take her to a restaurant for lunch. She loves going out to eat and this is one of the things she has requested the most. It's been a long time since she's done anything outside of our house or the hospital. We decided to make a quick stop at her school so she could turn in her project directly to her teacher. We walked in and within seconds all the kids ran up to us yelling Sofia's name. They were so excited to see her in person. It was the sweetest thing I've seen in a long time. After she looked all around the classroom she whispered to me, "mom, can I touch something." I'm happy that she's so aware of germs but it also breaks my heart a little. Mike and I said or course, so she walked over to a group of girls and started to play. They all acted like they have known each other for months. If we could all view life and each other as kids do. We left there and went out to lunch. For our first outing we didn't want to go anywhere super crazy and crowded so we headed to Boulder Ridge, which is Country Club associated with The Bay Club (the company I work for). Our table was set and the staff brought over a crown for her to wear during lunch. She didn't each much but she loved every minute. In the middle of lunch our nurse called to give us our counts. 493! We are neutropenic again which made me panick because of our outings. He reassured me that it should be fine and to enjoy our lunch. We are going back on Monday for labs and if we hit 750, we will start on Tuesday.                                                   At the end of lunch we went outside to look at the beautiful course, and she said "mom I want to come here every day. We can all eat lunch and then you and the baby can watch me and dad play golf."                                   So I won't think about yesterday or what might come tomorrow, because today was a good day![...]

After 3 days of Sofia seeing her hair EVERYWHERE, she decided she wanted to shave it. She watched Mike shaving his head this morning and said I want to do that too. I was hesitant to say the least, thinking we still have a little more time before it all comes out. Me saying no made her sad, I'm not not going to make her sad about this! So after our doctor appointment (ANC of 99, but all else is good) we came home and daddy got his clippers. She has been smiling ear to ear since it was done! Brave really can't describe this girl!! We are so lucky ang blessed that she's our girl. She's also loving that she has the same hair as her brother and dad now.

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!!