Tuesday, April 21, 2015


It was a hop from one appointment to the other kind of day. We had the amazing Auntie Amber with us to help distract the children and keep everyone calm. She even came home with us to help through the night. Our friend Michiko dropped everything to bring us lunch! We feel blessed at this outpouring of love!

Yesterday was a little bit of a let down, we left our MRI with a general feeling of being unimpressed. I have yet to see the official pathology report but the preliminary readings show no significant decreasing.

Here is the short version of what is going on; we have been doing weekly chemo since August, the first protocol was working and we saw significant decreasing in tumor size in October. Emma developed a life threatening allergy to that medication so we switched to a new chemo in January. From October to yesterday her MRI shows no significant decreasing. To say I am unimpressed is an understatement. We are thankful it did not grow or spread or take her seeing eye. However, weekly chemo with no breaks should be doing more then just stability and it could mean that it is having no effect at all since her type of tumor goes through periods of great growth and periods of nongrowth. We had nongrowth on no meds at all! 

Next steps? I am gathering Emma's GIANT box of medical files and taking her to other doctors who can look at her case and tell us if we are on the right track or if there is a better option. Until then we
will stay in our current treatment and add cannabis oil once I get a doctor to prescribe it for her. We have two fundraisers coming up to offset the costs of travel and new doctor appointments, one in Modesto and one online. More on that later.

Please try not to ask us what this means for the future, that is too frightening to talk about right now. For now Emma is stable, she is here, she is fighting, she is smiling. That is enough for now.
Love from our Ohana to all of you, thank you for following us on this journey.

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