Heimlich or not?

So we are now officially done with our consolidation phase part 1.  This phase seemed to have a focus on protecting the spinal column/fluid and brain from the possibility of any leukemia entering these areas.  During this phase, which lasted days 36 days (28 days normally but we added 8 because of our hospital stay), Sinatra had 4 spinal procedures which means she was under heavy anesthesia and had to fast for a minimum of eight hours before each time. In addition to the LP's (lumbar punctures) Sinatra also had 6 different types of chemo therapy, approximately 7 hours of chemo being administered by IV,  4 hours worth of blood transfusions, 9 doses of chemo therapy taken orally, 1 virus, 5 nights in the hospital,  and too many blood labs and hydration by IV to count.  We are all worn out right now.

Enjoying a snack after her last LP

Now that this phase is over we have a 7 day break and then it is on to Consolidation Phase Part 2.  This is the final 28 days of consolidation and is the 'study' portion of the chemotherapy treatment plan.  This being a study doesn't mean that this is untested drugs or new operations, it means that the Children's Oncology Network (COG) is testing a more aggressive approach to the chemo therapy for very high risk ALL patients.  In this study the doctors are using the same aggressive chemo therapy drugs on Sinatra that they would normally give to a child who has relapsed.  The goal is to see if giving this strong chemo the first time around will better the success rate and  reduce the chance for relapse in the future.

Even though we are glad that this phase is complete, and we haven't posted to the blog in a couple of weeks there has not been a lack of action in terms of side effects for Sinatra. We had quite a scary night this weekend.  When Sinatra was diagnosed we decided that at the end of each successful phase we would go out (date night) to celebrate another step closer to Sinatra being cured.  At the end of this phase we had planned to go out on Friday and had just finished cooking the girls dinner.  The baby sitter was on the way and we were getting ready and while the girls were at the table eating Sinatra started to vomit.  The first two times weren't to bad but then she started screaming and panicking like she was in pain and then stopped making any sound at all, but continued flailing around like she was choking on something.  This was so scary because we weren't sure if we needed to start giving her the Heimlich maneuver or just let her get through the vomiting.  We plucked her out of her seat and luckily she started calming down but then continued to vomit for another 20 minutes.  Since she didn't have a fever or other signs we believe this was a side affect of the chemo which the doctors said would happen.

Outside of the nausea which is starting to become a more frequent occurrence, Sinatra is a bit more wobbly on her feet than she has been. More of her hair is starting to fall out one strand at a time and we are learning that the side effects of her chemo are actually more likely to show up once she has had three doses or more. Then if they do happen its not immediately after treatments but generally 3+ days later right when you would think its out of her system. Its a real reminder of how intense the chemo really is. 

The other fun thing that is happening is that Siena is starting to have what we are discovering might be typical three year old, big girl bed, issues. She has us up tending to all sorts of things to make her happy and waking up randomly at night. There have been snakes in her bed, shadows on the wall, and friends that she must have in order to go to sleep which apparently she can't grab on her own. Needless to say sleep is still not what it used to be. On the bright side, the girls are becoming closer than ever, playing together and imitating each other and our parenting partnership just gets stronger and stronger everyday. We realize how fortunate we are to have each other to manage through each day. We are both managing to still be really engaged in our day jobs thanks to our amazing family helping us out. We are positive and optimistic as we approach each day and try to take care of ourselves and each other to stay strong for Sinatra. Wish us luck on our next round!