Waiting

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!