It has been a week since we were admitted into the hospital. Luckily, Sofia has continued to be fever free with no signs of an infection. We are just waiting for her counts to go up. Normally you need to reach an ANC of 500 to be discharged but the doctors just want her over 100 and rising and we can go. When we arrived on Wednesday we were at 20 so we thought 100 would come quickly but it's been 7 days and we are only at 40!!! The good news is that Sofia feels great! She's not even getting IV fluids so we are literally just living at the hospital. She's bored and over our room but I can't blame her. Given that we will be re-admitted once her counts hit 750 to start new chemo, we might only get a couple of days at home. We are going to make them great days!!![...]

On Wednesday Sofia woke up feeling pretty yucky. She didn't want to eat a thing and had no energy what s ever. This is so unlike her so we knew she wasn't feeling well. Her temp was hovering around 99 for most of the day and finally jumped to 101 at 6pm. We packed a bag and headed up to Stanford. We knew she would be neutropenic so we were guaranteed an overnight in the hospital. Sure enough her counts came back at zero so they drew blood cultures to check for a bacterial infection, started her on antibiotics and admitted us.[...]

Today we are getting our last chemo of consolidation!! It's been almost 10 weeks since we started the phase, but we made it through. With every new chemo we don't know what to expect and these past 10 weeks we got some strong ones, but Sofia did so well!! We are so proud of how brave and resilient she has been.[...]

Wanted to share a special day that we had with Sofia yesterday.

Let me start my telling you that Sofia loves the beach!! I hate to admit that she's only been a couple of times but when she goes she's in heaven. For the past 4 months Sofia has been asking us weekly if we can go to the beach. Given that we have been lying low and it has been rainy we have been waiting.[...]

As you can tell from Mike's last post, we are back to getting our chemo on a regular schedule. We hit counts two weeks ago, so today was the start of 3 out of 4 weeks. Happy to report, that other than our ER scary night, things have been going well. The past 2 weeks consisted of high dose chemo on Thursdays, at home chemo through the port 4 days a week and an oral chemo at night. The first time we had this protocol, Sofia felt pretty good so we were expecting the same. Her appetite has been building and her energy level has been great! Spending our days out in the sunshine has helped everyone!! I know we still need the rain but I wouldn't be upset with the warm temps sticking around.[...]

As I sat down to write an update on Sofia (I'll get to that tomorrow) I realized the date
Today is February 10th, 3 months since Sofia was diagnosed. It is crazy that we have made it through three months, but sometimes it is hard to remember life before. It is just bizarre that 3 months and 1 day ago, childhood cancer was not even a thought in our minds.
What I think about most as I reflect back on the past 3 months, it is this "rare" disease that doesn't seem so rare to me.
When I first posted to facebook about Sofia's leukemia I was immediately messaged by friends who connected me with moms they knew who had gone or are going through the exact same fight. I don't have thousand Facebook friends, I have 252. That first day I was given eight names of moms in the Bay Area who have kids with leukemia. Within the week I was given 5 more names. I had a former employee tell me their sibling had leukemia as a child. I had family across the country tell me about their friends who went through this fight. Even the guy who was installing our baby gate around our pool had a close friend locally who had a son with leukemia. Not to mention the families in-patient at the hospital and the packed waiting room in the clinic. I hate to say misery loves company, but there was a comfort in hearing all of the happy ending stories. Or just talking through the bad or sad days with someone who knows how you feel. But remember, this disease is rare!
Since our diagnosis on November 10th I have also had three friends reach out letting me know their friends child was just diagnosed. They asked if I would talk with the families and my answer is always YES! I can't begin to thank the moms who spoke to me that first week. But, how are there so many kids here getting this "rare" disease?
I keep saying "rare" because this is why childhood cancer gets so little research funding. It is "rare" and therefore it only gets 4%. Let me repeat, the taxpayer-funded National Cancer Institute dedicates 4% of its annual budget to childhood cancer. Cancer is the number 1 cause of death by disease for children in America. I am so ashamed to say that I didn't know any of this three months and 1 day ago. I wish it didn't take my daughter getting cancer to realize this horrible fact. Just 1% more funding would result in $50,000,000 in addition funding for children with cancer.
I do not want to hear about any more of my friends or their friends children getting diagnosed with cancer. So now you know. I encourage you all to learn more about this and if you are donating to a cause make sure you know where your money is going. Know that September is Childhood Cancer Awareness Month. Know that the color that that represents childhood cancer is Gold. Know that February 15th is International Childhood Cancer Day. Then share it, post it, give it attention. My daughter and all kids who had, have or will have are worth so much more than 4%!![...]

So last night we all had a bit of a scare. Following a nice relaxing day at home, filled with our new normal (med struggles, and the like). We were preparing for the night. Gina was getting sofia ready to take a bath, while I was giving Michael a bath. Then, the scare began. Gina came to the bathroom carrying Sofia, telling me in a firm, yet not panicked (so sofia won't freak out) voice,  that we need to go to the ER. I looked up only to see Sofia with blood all over her belly and shirt! So we as quickly as possible got the two kids ready, called the Stanford oncologist and made our way into the car. Being that our daughter is bleeding, and we are not sure how much blood is actually coming out, we decided to go to the closer ER at Good Samaritan. Both of us I think were freaked out, me maybe a little more so than Gina just because I can barely stand the sight of blood. We were admitted fairly quickly so that they could draw blood and cultures to see what would be the next step. This is when it was discovered that the issue was that there was crack/hole in her line. The line that is connected to her port which allows us to administer the at home chemo, as well as draw labs. Because it was not a "closed" line, Sofia was actually pumping blood out of her port which is where the dripping blood came from. So now that we have an understanding of what happened, we find out that we are going to de-access her port, then re-access her port so that we can successfully flush her line. We also find out that the ER at Good Sam does not have Heparin available without the pharmacy having to make it. So Michael and I go home to grab the supplies that we should have originally brought with us, but in all honesty, I forgot to grab on our way out in the panicked state that we were in. As I return, with our supplies, Gina then de-accesses Sofia’s port. [...]

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.