Re: Josie LiNI - Now it is November news

Made it. First appointment bright and early tomorrow 

Thanks to everyone who offered to keep Joe and June fed and amused

Our bags are packed and we are ready to go.  Josie and I are headed to Stanford for a week and a half to see if oral medication is a good option for her.

If all goes well she will leave with a central line but no IV pump.   If all is still well a month later we can have the central line removed.

Yea.  That would be a big deal.

I will update as we go along.  Prayers and good wishes appreciated.

With love

Kim

Ps. I am taking only my iPad this time.  I will need typo mercies!

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The big news is that we have arranged for Josie to be enrolled in the clinical trial at LPCH/Stanford.  This is the clinical trial to see if she can take an oral form (more like a swallowed medical device in fact) of the medication currently delivered via her central line and pump.  

It will be quite a bit of time and effort, but a central line is not the safest or easiest thing, so we are glad to give it a try.

Joe and JJ will hold down the fort at home.  Josie and I leave for Stanford Nov 11. On the 12th they will evaluate her, and if it looks good will enroll her in the study.  After that, as soon as a bed is available, she will be admitted to try and switch her.  The pump will be slowed down as her oral meds are increased.  We expect to be IN the hospital for at least 5 day - maybe more as Josie can be sensitive to medication changes.

Once she is switched we will be back up to Stanford at 3 weeks, 6 weeks and 12 weeks - so it is a travel commitment for sure.   If everything looks good at the 3 week check we can arrange to have the central line removed.  That will be a great Christmas gift.