Tube-less

We are finally heading back to RIC today!  This round 3 stay has been longer than anticipated due to a few of the normal not-normal complications of chemo.  Among the complications, Jonah experienced a UTI, possible SIADH (where your brain tells your body to get rid of too much sodium, which is a big problem) that resolved quickly, concern of a seizure (negative) and almost uncontrollable nausea & vomiting.  The vomiting does have a silver lining though - he lost his NG tube, which was one of his arch nemesises!!!  This isn't the first time he's thrown his NG tube up, but this time, our team is willing to give it a trial to leave it out!!  If it's possible to love your medical team, I mean really love them, not just like them, this decision has made me love our medical team.  Dr. Lulla & Katie, I LOVE you!!  I don't have the vocabulary to describe Jonah's anxiety and animosity provoked by his tube.  The only personal goal he's made so far was to get rid of the tube, which because clear as soon as he started talking.  Although his food consumption still needs to increase to make this successful, he is doing an amazing job taking all his meds by mouth, "even if they taste disgusting".  He really wants this!

I share this update to ask for specific prayers - prayers that Jonah will be able to develop the stamina to consume the required calories to maintain his weight, and prayers that he continues to be able to take his "disgusting" medicines - prayers that this trial is successful.  Our primary treating team, Dr. Lulla and Katie, are onboard with this trial, but the in-patient team is quite worried we're being to aggressive.  This "W" for Jonah and his spirit, would have more personal impact for him than the good MRI results we received as few weeks ago, and so this matters a lot.  I know NG tubes aren't the worst thing in the world and actually can solve a lot of problems, but because it matters so much for him, it matters so much for me.