When high blood pressure is normal for parents...

Sinatra helps pump a syringe in her port

It has been a busy week since our last post.  In our last post we had mentioned that Sinatra had a low ANC count so her chemotherapy was postponed.  Well at the end of that week we went in to the clinic on Friday hoping for an ANC over 750 (minimum required to continue) but it was down to 300.  We thought there was no way that her ANC would rebound over the weekend and be above a 750 on her Monday lab appointment.  You can imagine how surprised we were when we learned that Sinatra's ANC was above 900 at her Monday labs so we were approved to start her treatment again on Tuesday March 11th.

The next 30 days we Sinatra will participate in a round of treatment called Consolidation Part II and this is the first of the two "study" arms of treatment Sinatra will have. What that means practically is that treatment will have different medications and frequency than whats typical during this phase. Because Sinatra is considered in the Very High risk category of A.L.L. this could really help increase her chances of avoiding relapse. The treatment that we started on this week was pretty intense for Sinatra and consists of 5 straight days of chemotherapy. During the sessions Sinatra began with a drug to help her battle nausea (Zofran), then would have a two hour IV drip of a very intense chemo therapy (Etoposide) mixed with saline solution for dilution followed by a second 30 minute IV drip of a different chemo therapy (Cytoxan) and finally two hours of IV hydration after all of that is complete.  Needless to say the days are extremely long. 

Here is Sinatra on her first day of this chemo

The first day of new treatment is always a scary adventure and this time was no different.  When we started the chemo on Tuesday our nurse was responsible for checking Sinatra's vital signs every 15 minutes while Link was responsible for making sure Sinatra wasn't doing or acting out of the ordinary which could be an early indicator of an allergic reaction.  The chemo started and within five minutes Sinatra started coughing heavily, panting for air and dry heaving.  We called the nurses instantly and they rushed over to immediately stop the chemo and observe Sinatra.  After 10 minutes of observing and Sinatra calming down we started again and luckily everything was okay with the exception of daddy's heart rate, blood pressure and over worked sweat glands.  During the first two hours Sinatra also broke out in a rash but that went away after a few minutes and didn't cause any issues.  

Day two FaceTime with Daddy at work.

These days feel so long to all of us. We get to the infusion center at 8:30 am and don't get home until 3 or 4pm each day. By the time we get home we are so mentally and emotionally exhausted because the entire day we are on edge trying to ensure that everything is ok with Sinatra. Not to mention we are trying to keep her happy and busy while stuck at the clinic or hospital. It is clear that Sinatra is feeling some of the side effects of the chemo because she is a little more grumpy than usual.  But remarkably, the hardest part for her is removing the bandages from her port on her chest.  Because she has had so many bandages on, and she is being accessed every day, it has made her chest area raw.  It especially hurts when they have to do an alcohol swab to ensure the area is clean before they put the needle in.

Getting some good snuggle time with Mommy

The week is finally over and now we have a 10 day break from chemo (however we will still be drawing blood quite regularly).  Essentially this phase will be done in 24 days from today and that is when we have an extremely important marrow and blood test again. This test will determine how well Sinatra is reacting to the drugs and also determine our next steps for treatment.