"Choc Nannies!!!"

So we know it has been a really long time since we have updated the blog and many of you have asked how Sinatra is doing and have some sense of how crazy things have been for us the last few weeks. Here's a little more on whats happening now and what is coming.

She had just eaten chocolate covered frozen bananas, aka "Choc nannies"!

We have completed 3 of 4 rounds of inpatient chemo, which is 4-5 days long in the hospital, for this phase of Sinatra's treatment called Interim Maintenance. This phase ends in early June. We will check back into the hospital this Wednesday, 6/4 if her labs are good at the beginning of the week and will finish the fourth round. This phase of treatment has been tough for a lot of reasons. Having to stay in the hospital every other week is chaotic for Sinatra and for us and it has been pretty disruptive to the sort of routine we have had in treatment so far. It's hard for her to be away from her sister and without either dad or mom each night, and its hard for us because we don't get to talk in person for more than a few minutes a day. We are truly trying to divide and conquer to keep things running as smoothly as we can for both of the girls.  The chemo this time has also been intense for Sinatra and we have had many sleepness nights both in the hospital and at home as she has the tendency to get sick and vomit at night. The endless medications at home and the hospital are supposed to help her and I am sure they do but there are times when its just so hard to give her one more.

She talks now, which is the cutest thing ever. She responds to questions and says "sure" instead of "yes" and when you ask her to do something she says "of course". Literally makes our hearts melt every time. She loves to sing, especially songs from the movie Frozen, and is truly just such a sweet, cuddly, soul. She still loves to drink lots of milk and eats an abnormal quantity of toast everyday, and has found a new favorite food. The chocolate covered frozen bananas from Trader Joe's are always a slam dunk no matter how bad she feels. She looks really good and healthy and if she hadn't lost so much of her hair in the front of her head you might not even guess she is treatment. She is super active around the house and we can't wait until we can take her back to the park again, or to a gym class, or other activities that the other 1-2 year old children are doing right now.

So here is a bit about what's next. I created a little treatment cheat sheet for us to share what we have ahead of us for the next part of treatment.

Round 2 of 4

Sinatra showing her displeasure with the
'CHOC Bear' waffle. It clearly doesn't fit
into the Toast or Whip Cream category.

We have now finished the second of 4 rounds for the 'Interim Maintenance' phase of Sinatra's treatment.  We were able to start this round much sooner because we didn't need to have a lumbar puncture procedure to start, this enabled us to start the required 6 hour IV hydration right away when we arrived at the hospital.  

One things that was surprising but exciting was the weight gain that Sinatra had shown.  In the previous round Sinatra was ~9.7 kg and when she weighed in this round she was up to 10.7 kg. This is great because it means that she is eating.  Even though all she wants is Whip Cream, Toast and Milk, she is eating!!!!  Now the tough part of this weight gain is we had to increase all dosages of her medication and chemo.

Sinatra showing a big 'smile'
while drawing at the CHOC playroom

As the treatment went on for the first 24 hours around dinner time each night Sinatra started sweating and vomiting.  Sinatra didn't react this way to the High Dose Methotrexate in the first round so we were surprised by this reaction.  We talked to the nurses and doctors regarding this and they say that this is expected.  They mentioned that in the 4 rounds of this treatment plan Sinatra will react worse each time of the treatment.  That is scary because now we can only imagine what round 3 and 4 will be like.

During this stay at the hospital we only saw Sinatra's Blood Sugar drop to a low level one time, which is very good news. It was again at a time when she didn't eat anything for the prior 24 hours so we still think it is during times of fasting.

We finally discharged on Sunday at 10:00 pm and it was nice to get home again.  We are scheduled to begin round 3 of this treatment plan on Wednesday 5/21/14.