Peaches and Eggs!

Sinatra is not herself, she only wants to
cuddle and lay down.

We are currently in the throws of Sinatra's Delayed Intensification round of treatment and it has not been easy. This has been one of the hardest phases so far for all of us.  Sinatra just seems like she is not herself. She doesn't have all the energy she usually does and seems to be much more 'ill'. Its also become more difficult to give her the many medicines at home she takes each day because she often says "no thank you" when you approach her to give it. It's sweet that she's polite about it and it breaks our hearts when she nearly vomits trying to get it down or cries. We have experienced much more vomiting, sleepiness, anger and weight loss in this phase. Sinatra has lost almost all of her weight again. She weighed 10.3kg recently which is less than 1kg more than when she was diagnosed in December 2013. If you recall at that point in time they were concerned with her weight being so low.  It is sad to see Sinatra this skinny, her spine sticks out very far and even the port in her chest looks like a stack of 10 quarters under her skin. 

This will satisfy Sinatra for maybe 1 day!

We have also started steroids again. Now compared to the first time she was on steroids this has been a breeze but we can see hints of Chulk coming back.  The good thing is she will be done with the steroids  on 7/22/2014.  One thing that definitely makes it easier is that she can talk now, so when that insatiable appetite starts taking control of Sinatra she can tell us what she wants.  We assumed it would be more buttered toast (similar to the thousand of slices she had during her first run on steroids), but not even close.  Chulk's new steroid food is scrambled eggs and Dole diced peaches in the plastic cup.  We literally have seen her eat 8 eggs and 8 cups of Dole peaches in one day.  She is so addicted to these right now that we can offer her ice cream, whip cream, pudding, cereal, buttered toast, money, toys, candy and cake frosting but she will always reply with 'Peaches' or 'Eggs'. There are even some nights where she demands that the peaches and/or the eggs are placed in Tupperware or on a plate or in a cup. Of course we comply with her requests to avoid the wrath.

We really hope that we get through this phase soon because the mental strain on all of us worrying about her have really weighed on us this month.  We had a night where Siena started vomiting and her response was that she was sick like Sinatra. So sad that she recognizes the hard time that Sinatra is having.  We also hear the girls say, 'When Sinatra is better maybe we can go to Legoland, or the beach, or Las Vegas (don't ask), and Disney etc.?'

Speaking of Siena. We noticed a few small bumps on her cheek when she got home from preschool one day. We started thinking about what it was and of course thought, hand foot and mouth, or chicken pox. We definitely were nervous because chicken pox are on the list for us to head to the hospital with Sinatra, even if it is only being exposed to them. We quarantined Sinatra in her room right away and made an appointment for Siena to see the doctor the next morning. Luckily it was only a minor infection and we got it under control.

This has been a tough 28 days for us and we are ready to move on and start our next phase  around Aug 4th. We will keep you posted on how Sinatra feels in the upcoming weeks.

Delayed Intensification begins!

It was very weird to go back to the OPI to begin treatment again. We were discharged from the hospital on June 16th and gave Sinatra her last Oral chemo on June 22nd. During this break Sinatra lost all of her hair and it literally started growing back within days of its disappearance.  Now she has a very soft peach fuzzy head!! It was nice to have such a long break from reality but as of July 2nd we are back in treatment full speed ahead.  We began our delayed intensification treatment on the 2nd with a lumbar puncture and two types of chemo.  The one chemo (Doxorubicin) was pink in color and weirdly enough Sinatra's urine made her diaper pink for the next day. We must warn anyone that comes near Sinatra...... she has started her steroids again. We began steroids the night of the 2nd.  Sinatra's steroid dose is almost double what it was in January but she wont be taking it for a full month.  She will essentially take it for 7 days then break for 7 days and then back on for 7 days.  So hopefully the side effects wont be as prominent this time.  We are hoping that Chulk does not enter the building again.

One amazing piece of information is that on July 4th Sinatra got to go with the family to a 4th of July party.  It was amazing to have her at a social event and we know she loved it. She was so happy walking around and saying hello to everyone.  We even brought her to see the fireworks at the beach.  We know these wont be regular occurrences but we are happy she got to enjoy this day.  We are looking forward to Sinatra entering her maintenance phase which should be around mid October. Once we get there many of these restrictions should be lifted and Sinatra can be much more social.