More twists and turns

Monday brings more twists and turns.

Jenson's counts are still too low to do the new chemo clofarabine, AND he needs another blood transfusion.

Dr Cavalier (our oncologist) suspects it is the 2CDA side effects. Some kids can't get more than 2 doses because it can be so immuno suppressive. We are apparently one of those cases... the silver lining is at least it wasn't working so it's not like we are giving up something we wish we had!

His fevers and petechiae outbreaks continue, so he clearly needed something to help fight the disease. We give him vinblastine, a less toxic chemo.

Dr Cavalier is checking with other hospitals for the protocol they use for the new chemo (which we will hopefully be starting next week). She lets me know, "We may have a little wrinkle", as it is looking like most hospitals admit the full week of treatment and also until the counts recover. Translation = living at the hospital. She is still checking around, but that would definitely be a huge twist.

We cancel the scope & bone marrow biopsy tomorrow since his body is so weak. The next big test is the PET scan Monday which will show all the areas the disease is active.

Hopefully next Monday he will also be strong enough to start the new chemo too.

Jenson feels horrible later in the evening. He has all of us lay in the bed with him. I am in charge of rubbing his head, tummy, and back. He is moaning every few minutes and trying to get comfortable.

While I am rubbing his tummy, Sydney is copying me and rubbing my tummy. Cute. Suddenly Jenson pushes her arm back and says, "Gotcha!" and starts giggling. This makes all of us burst into laughter too.

I don't know where his amazing sense of humor comes from... he can take such a heavy, hard moment and make it so light. What a blessing!

This journey is filled with twists and turns, but it feels like whiplash right now. Fortunately God has given us a little laughter courtesy of our little inspiration.

Kristin