A very long day...

Sinatra began her first day of the 'Consolidation Part One' phase of her treatment today.  Consolidation will be a very difficult phase of Sinatra's treatment.  In this phase Sinatra will be going to get chemo four times a week for the first two weeks and has lumbar punctures (under anesthesia adding chemo to the spinal column) on Tuesdays through 2/18.  The first of the four days in a row she will be getting four different types of chemo.  Needless to say we are already counting the days until this phase is complete.

The first day of treatment started by having Sinatra fast 8 hours before her lumbar puncture procedure at 9:30 am. This fast was much easier since we aren't dealing with the 'roid rage' but it is still hard to have her fast for so long because she gets hungry and doesn't understand why we won't feed her.  The good news was that after Sinatra ate her dinner (only a few bites) she went to bed and slept through the night. This was the first night we have had a full nights sleep in over a month so we were thrilled!

At breakfast time we didn't want to rub it in that she couldn't eat so Jenn and Siena went to breakfast before school and Link didn't eat because he was taking Sinatra to OPI for the procedure.As soon as we arrived at OPI just after 8:00 am the nurses instantly hooked Sinatra up to IV fluids because one of the chemo treatments (Cyclophosphamide) that she was receiving today is extremely hard on the bladder and kidneys so they have to hydrate her two hours prior and four hours after administering the chemo.  

While hydrating we were able to weigh in again and Sinatra has lost another 2.6 lbs since her last weigh in on Wednesday 1/22. She is losing weight almost as quick as she gained it on the steroids, which the doctors prepped us for.

Within two hours of getting to the OPI Sinatra had already been put under anesthesia, gotten her lumbar puncture (Intrathecal Methotrexate), received a second type of chemo therapy (Cytarabine) via IV  and was prepping for the third type of chemo by continuing her hydration.  After another hour we started the third chemo (Cyclophosphamide) which takes one hour to completely run. While we were running this chemo Sinatra couldn't stand still and was out and about walking the floors of the OPI and playing with whatever toys she could find. This is a great sign but we are told that the effects of the chemo won't be truly visible until 3-4 days after the treatment starts.

By the time the third chemo was done Jenn had come in to the OPI to relieve Link for the rest of the day.  At this point Sinatra was just receiving IV fluids and being monitored. Thankfully she was able to fall asleep in the chemo chair and slept for a couple of hours. 

When Sinatra got home it was after 6:00 pm and we had to feed her dinner quickly because her fourth and final chemo (Mercaptopurine) for the day was to be given to her 1-2 hours after she eats dinner.  The problem is her appetite is clearly waning now and by the time we got home from OPI she barely ate anything at all.  After trying to entice her with a buffet of food we gave up and got her in for her bath and ready for bed. 

Its crazy to watch her run around and seem so happy after she had such an intense day.  Sinatra literally runs around the house hyperactive, yelling, smiling and laughing.  It is a very good thing to see but also very confusing for us as parents. It makes it difficult because it is very easy to slip into a state where you see her acting so healthy that you forget for a moment and think that she can just play and be normal. Tonight and for the last few days Siena has had a really nasty cold with a cough. We have been trying to keep distance between the girls but when you see them so excited to see each other and want to cuddle and play its difficult because we have to try to create more space for Sinatra. We try to stay as aware as we can and keep reminding ourselves that its 8-9 months that we have to be to be very disciplined with how we manage and take care of Sinatra and her Leukemia.