18 Days Off

It's been 18 days since we ended our high dose methotrexate. 18 days of Sofia feeling GREAT! This little break really has been awesome for Sofia. With her ANC up between 1000-2000 we were able to get out a little more and have some fun. We went to Great America for Courageous Kids day where Sofia was honored as an Ambassador, she had play dates with old and new friends, she threw out the first pitch at a Bellarmine game, she met her new baby cousin and got to visit with her Great Grandma who was visiting from Florida. And I can't forget, we had countless dance parties!!!! Not only did she feel good but she has had a great appetite and has even gained a couple of pounds!
Even though we have had a great couple of weeks, I've had a little pit in my stomach as I couldn't help but think to the phase ahead called Delayed Intensification. This is Sofia's last phase before she reaches "maintenance ". Delayed intensification is a really rough phase. It goes for about 57 days and she gets hit hard and often with Chemo (2-4 times a week). We know that these chemos will drop her counts making her neutropenic for most of the 60 days. She will also probably need blood and platelet transfusions. She will be nauseous throughout and could lose all her hair (which has grown so much!) She will also be put back on Steroids which if you remember caused extreme hunger, Giant cheeks and a lot of anger and sadness. With her counts so low for so long she will be at risk for infection so we will be locked in for a while. If she does get a fever than we would be admitted back into the hospital. So you can see why one would feel uneasy as this phase approached!
In order to start this phase Sofia's ANC needs to be 750, but since last Thursday she was at 1600 we thought we had it in the bag for an on time start. We had labs on Monday to prepare for a start today. We were quite surprised to learn her ANC was only 240 and she is neutropenic! I swear you wouldn't know it the way Sofia is running around every day. We checked her numbers again today and she was still only at 300. So we will check again on Monday and hope for a Tuesday start. So another weekend of fun and laughs but because of the low counts we are staying home. Noni has found his voice and personality so he keeps us entertained and on our toes! Three year olds love tiny little toys that babies just have to put in their mouth!!

We pray that Sofia's numbers come up and that she goes in strong as we take on these poisons! I will update on Monday if we hit the numbers to start on Tuesday.
Thank you all for the continued love and support (and the meals and COFFEE!)