Day 28 of Delayed Intensification! I haven't posted an update in a couple of weeks because it's been a rough time. I try to stay positive as I believe in putting positive energy into the world. Well it was hard to put a positive spin on the past couple of weeks! Sofia had a really hard time on her second week of steroids. She basically lived on my lap and was sad, emotional, angry, tired and hungry... All at the same time!! Mike and I were both mentally and physically exhausted. In the past 2 weeks we have also received the news that two of our family members have been diagnosed with cancer, one of which is my mom. As many of you know, my mom is at my house 5 days a week, helping me with everything and anything. She has been a daily part of Sofia's life since she was 4 months old when I went back to work. To say our family was thrown a curve ball is an understatement. Obviously with all of this I was having a hard time with my positivity!
So now, with a week off of steroids and some more clarity about my moms tumor, I can give thanks again and know that we are strong enough to get through this. Sofia is back to her happy, loving, energetic self!! My moms tumor is treatable and she has a world renowned Stanford Doctor fighting with her.
Sofia is half way through delayed intensification but we are on hold right now waiting for Sofia's counts to recover. To start this second half her ANC needs to be 750 and as of Friday she was only at 67!!!! So she basically has no immune system which scares me but we are hoping the numbers rise fast. We will gets labs again tomorrow but I'm assuming we won't start until some time next week.
Life is so precious, and as we've learned too many times this year, it can change in a moment! I don't know that I'll ever understand why this is all happening in our lives I am sure it will change the way I live and love forever. God has a plan, it's just sometimes hard to see![...]

Today is Day 15 of Delayed Intensification. Today is also a great day.
The first two weeks went pretty darn great. Sofia got a little sad from the steroids for 1 day. She also got tired for 1 day.
Today she had the last dose of the "red devil" chemo, so good riddance! She also starts week 2 of steroids (she had days 8-14 off). Given that it's her second round we should expect the symptoms to be a big stronger, so day by day. We will keep her on zofran around the clock for the next three days to help with any nausea. Next scheduled chemo isn't for 2 weeks or longer, depending on counts.
When we arrived to the hospital today I was a nervous wreck because today has been 14 days since her last bone marrow aspirate. That special 1 in 1 million test takes 14 days to get results. So as Sofia's NP walked in I held my breath and she said no results yet! She then told us our Doctor is going to Europe for 3 weeks but they should for sure be back when he returns. I told her she was crazy if she thought I was waiting 3 more weeks. She promised that she would have a doctor call us even if it wasn't our Doctor. I agreed and we moved on with the "plan" for the rest of DI.
As we finished up chemo and the nurse came in to de-access Sofia's port, both our Dr and NP walked in. He was waving a sheet and was saying zero zero zero zero zero!!!!! Finally the words we've been waiting for... Sofia's leukemia is undetectable in every test possible! 1 in 10,000 = 0, 1 in 100,000= 0 and 1 in 1,000,000 cells = 0! I of course sobbed and through tears told him he could go ahead and go on vacation. So, now we power on and continue with 2 more years of chemo to make sure it never comes back!!!
7 months ago I realized how little control we all have in our lives. I've had a lot of dark moments and a lot of tears. But Mike and I promised to always smile and be nothing but positive in front of Sofia. Today when she saw me crying happy tears she just looked and me, laughed and gave me a kiss. She is literally my strength. Mike is the definition of positivity and baby Noni is 17 pounds of pure joy. Together we make a pretty amazing team!
Thank you all from the bottom of our hearts for your prayers, your positive energy and your friendship.[...]

We had such a great week and weekend!! We didn't quite know how high or low Sofia's numbers were so we stayed home most days and swam! She is officially crazy about getting in that pool! We attempted the beach on Friday morning but it was freezing so we came home to the hot backyard.
On Monday morning we went in for labs and her numbers were great!! All numbers were up and her ANC was 2300. We were a go to start delayed intensification today.
We have been nervous about today because the phase is supposed to be very hard, last time Sofia got an LP she threw up for 4 hours and we are getting another bone marrow 1 in a million test to see if any cancer cells show up. We mapped out a plan with our doctors and nurses to try and minimize the throwing up and for the rest we just need to stay positive and take it hour by hour.
We arrived at 8:15 this morning to get some pre-hydration and than Sofia was taken in for procedure. She got an LP with 3 chemos in her spine and a bone marrow aspirate. She was a little upset when she woke up so I held her in my arms and she went back to sleep. She then received two more chemos in her port, one on which (the one they call red devil!) was a new drug for us. Sofia slept through all of it and woke up after 2 hours feeling great!! She asked for rice crispies and a cookie. We went over the plan for starting steroids tonight and went home. As soon as she got home she was playing and dancing like it was just any old Tuesday. She of course could not wait to see her brother!
For dinner she requested a nectarine, a peach and some Rosemary crackers. I can only imagine what she will be requesting when the steroid hunger kicks in! We just gave our first dose of Zantac and steroids which she hated. She will take these twice a day for 7 days, get 7 days off and than again for another 7 days. This in addition to another chemo this Friday and the next 3 Tuesday's.
We know she will not feel great many days over the next 58 days, but today she feels good and that's all that matters.
Thank you all for your prayers, love and support. Go #teamsofia[...]