Day 50, the last day of Delayed Intensification!
It's hard to believe that we reached the end but the past 60 days (how long it took with delays) seemed like forever.
This week was good but we have been dealing with cytarabine side effects all week. Sofia needed a blood transfusion on Wednesday, she's had zero appetite and dropping counts. We were hopeful that labs today would show her counts coming up, but she's at zero. 👎🏼 So even though the chemo is done for this round we can't move forward until her ANC recovers back to 750. We will get labs again on Tuesday and see how it's progressing.
Sofia is still excited about meeting Buster Posey but always has to talk about Hunter Pence in the same sentence.
So, now we need to start thinking about maintenance which I guess means "living" a bit more. Since diagnosis, so much has been out of our control. The only thing I could control was her surroundings and keeping her space as clean as possible. We made it trough the whole winter with no colds in this house! Naturally, the idea of letting her go to school (guaranteed cold) or walk into a mall scares me to death. Today the nurse told me that sometimes maintenance is hard emotionally for the parents because you get a bit of breathing room and the emotions you haven't been able to focus on, start to kick in. PTSD is very common for parents of sick children. It's good to know so we can deal it as it comes. Though I know re-entry to life will be good for all of us, it sure is a strange feeling. I might need an anti-anxiety on her first day of school!!
The one thing I know for sure is that my children are the strongest, cutest and most loving people, ever! We are so incredibly blessed to be able to wake up every day to those adorable faces!!!
This was a scary phase but we made it through surrounded by all of your love and prayers, and we thank you! If you're going out this weekend, have a glass of champagne for me and cheers to the end of DI![...]

Delayed Intensification Day 37... 13 days to go!
We had a pretty good week after we finally started our day 29 chemo. We kept Sofia on a steady dose of zofran which seemed to do the trick as she didn't complain of nausea all week! Our at home chemo, both IV and oral also went without a hitch. On Monday after I administered her last IV chemo of the week, I had to de-access her port. I've seen this done countless times and felt pretty comfortable doing it. Those of you who have any experience with ports or Picc lines will know that the most challenging thing is not the actual de-access, it's removing dressing! The bandage they put over the port has to stay on there nice and strong so it hurts, like really hurts, when removed. Luckily, Sofia is getting better with it, but there are still many tears shed. After we were free from the port we had three days to play, swim and shower before getting accessed again yesterday. The chemo she received last week is supposed to drop your ANC, your red blood cells and your platelets. As of Wednesday, Sofia's RBC and platelets were good and her ANC was 840, so we were happily not neutropenic or needing transfusions. We would get another blood test on Friday morning before her procedure.
Thursday night, our normally very happy son, was a bit whiny at dinner time. As I went to get him, he was burning up with a temp of 101.5! Panic sets in as this is the one stage we don't want Sofia to be exposed to anything. I quickly got him some Tylenol and called our pediatrician (yes, I have his cell). We decided I would take Sofia to her appointment on Friday and Mike would take Michael to the pediatrician. I was crossing my fingers for an ear infection! Poor baby is sick for the very first time and all our attention has to go to Sofia.
Luckily my mom also had an appointment at Stanford yesterday so she was able to come with us. Now that Sofia has had so many of these lumbar punctures she now knows she doesn't like "the sleepy medicine" and she panics when we get into that room. I hold her in my arms until she's asleep and than I lay her down. It never gets easier for me so it was nice to have my mom there when Mike couldn't be. Knowing that Sofia has struggled with vomiting after LP's the anesthesiologist thought he was mix in some benedryl with her zofran. Word to the wise, propofol and benedryl lead to a horrible wake up!!!! The propofol is pretty easy to come out of, but the benedryl is not. So instead of just waking up she was like a wild animal arching her back, flailing her arms and screaming loud for about 15 minutes straight! The nurses and I had to hold her down until it wore out of her system. It was horrible to see and I hope to never see that again! I'll take the vomit!!
As my nerves were completely shot, I got the call from Mike that it's a virus and he was contagious before the fever. The nurses told me there wasn't much we could do now other than lots of hand washing as we went between the two of them. We had just gotten the results from that mornings blood test and her ANC had dropped to 360! Yep, neutropenic and can't fight off germs. Any fever for Sofia is a guaranteed hospital stay because her ANC is expected to stay low for about the next 4 weeks. Considering we never leave the house, I'm so confused how he could have gotten sick?! Our Doctor told us that adults are carriers of lots of different viruses that we don't actually get but we pass on the germs. So you run to the store to get milk and you bring home a virus, awesome.
Sofia felt good yesterday and feels great today. She's not happy that she can't hug and kiss her brud! Noni's fever broke today, so now we are just taking it all day by day, praying for no more fevers in the house.
We will continue giving IV chemo until Monday and than de-access for the last time at home. So, 13 more days, 5 more IV chemos and 6 more days of oral chemo. Praying for no fevers and no transfusions during these last few weeks of DI! I know you will all be praying with us.
To end I would like to acknowledge that today is my 6 year wedding Anniversary. When we met with Sofia's oncologist for the first time he said this process will either make you two stronger or it will tear you apart. I saw very early on what he meant. It's very hard to make your marriage a priority with a newborn and a very sick toddler. We don't go out, we rarely eat dinner at the same time and Sofia sleeps right between us. But, Mike and I know that we are stronger and better together than apart, and that's all that matters. I didn't get dressed today but it was a Happy Anniversary because we were all together. #teamsofia[...]

ANC is 770 so we are good to go! Just waiting to go in for her lumbar puncture where she will receive 3 chemos in the spine. When she wakes up they will continue hydrating before getting 2 more chemos in her port. All followed by 4 hours of post hydration. It's going to be a long day!!! Sofia won't feel great for the next 30 days and all her counts will drop pretty low. But, this is the end of DI and maintenance is just around the corner!! Thank you team Sofia for your prayers!!![...]

just some pics from us as we've been waiting to hit counts! Hope everyone had a great 4th of July![...]