BIG decisions

Her appetite has slowed down

Four days post steroids and Sinatra is doing great. Her 'roid rage' appears to slowly disappearing, the cravings have subsided, she is eating less, and she is becoming more active every day. Just like our doctor told us, we are beginning to get our happy baby back. Since the medicine takes time to fully work its way out of her system we are still experiencing the night time wake ups and the skin sensitivity which makes the diaper rash tough, but she is truly improving every day. Its so nice to hear her laughing again and playing with her sister.

Whats on our minds now is our next big decision. When Sinatra was initially diagnosed with A.L.L. we were asked by the Oncology team at CHOC if we would be willing to have Sinatra be 'on study' during the first phase of her treatment. At the time when we were asked, we learned that the risks associated with being 'on study' would be minimal as they would only need to take an additional sample of her bone marrow and sharing her personal information (age, ethnicity, etc) for research purposes. Given all of this we read through and asked questions about the consent forms, and agreed. We both are supportive of research and felt like if we could contribute to Leukemia research with no risk for Sinatra, that it was an easy choice.

Now that Sinatra has completed the first phase of treatment, called Induction, we are faced with the decision of determining if she should stay on study. We shared with you a week or two ago that the doctors discovered a genetic abnormality called MLL. Because of this, Sinatra's chances of successful cure rate go from the typical 90% for standard risk A.L.L, to roughly 50% because of the MLL abnormality.

So now comes the tough choice if we decide to stay on study. Assuming Sinatra's passes induction and has a positive MRD result (we still haven't heard yet), we will have 3 options for treatment, two experimental treatment arms and the standard treatment that we spoke of before.  Essentially being on study and having the option of receiving experimental treatment could increase Sinatra's cure rate significantly but because it is a study those results aren't available yet. Basically what happens is if we opt in, Sinatra gets put into a pool of patients and will randomly get assigned to one of three options for treatment. 

1. Standard treatment used for all ALL patients. Known, tested, but in her case only 50% cure rate with the MLL abnormality.
2. Experimental Arm 1.  More intense than the Standard treatment and introduces 2 additional chemo medications that may help minimize the risk of relapse but have increased and potentially serious side effects. 
3. Experimental Arm 2. Most intense of the three treatment options and adds the two chemo drugs from Arm 2 plus an additional medication with such serious side effects that it makes receiving the chemo an inpatient procedure because the patient needs to be monitored 24/7 during that period.

*Both of the experimental treatment plans are currently used as medication for patients when they relapse so the thought is that if you hit the cancer hard with these meds now, perhaps the relapse won't happen.

This decision is weighing very heavy on us because we want to do whatever we can to give Sinatra the best treatment we can but also worry about her ability and ours to manage the side effects.  There is also the fear of the unknown because we don't really know what  treatment is truly the best for her.  We are reading and learning so much that it feels like we are cramming for the most important exam ever, to have as much information as possible to try and make an informed decision.  The good thing is that if we opt in we can change our mind and be removed from the study at any time, no questions asked. The other worry is whether or not our insurance will cover the cost of these experimental treatments. There is just no way to know what is the right decision when your dealing with your daughter's life. 

We have our next family meeting with our assigned team of doctors, nurses and case workers on Wednesday 1/24.  This meeting is where we will learn what Sinatra's MRD is and where we will need to share our decision about being on study.  Keep sending your good vibes and prayers our way because your support means the world to us.