By Stephanie

  As you can imagine, both Avery and I are tired, both mentally and physically.  She had a cough last week, that is back and has a slight fever…figures.

We got home last night, about 7pm.  They made an appointment with the Cancer Clinic at University of Washington (which is right by Children’s) for radiation.

We met with the Radiation Oncologist for over an hour to go over all pros and cons of radiation here.  Proton beam radiation still looks like a possible option. 

But honestly…it isn’t great.  It’s actually more daunting than anything we have done so far. 


There is an 80% chance the tumor will stop growing or shrink

There is a good shot that she could keep the sight she has or possibly regain what she had in October. (she has very little so she doesn’t have much to loose) 

She could start treatment Thursday (she is actually already scheduled)


Her pituitary gland would most likely be destroyed.  That means growth hormones, thyroid meds, hydrocortisone for life and a high possibility of infertility. 

20% chance it does nothing to the tumor.

Neuro-cognitive damage.  Or other words, damage to her learning function.  This might be less with proton beam, we are looking into it.  It varies for each person, there is no way to know how much this could or would effect her.

She will have to have a dose every day (Monday thru Friday) at U of W in Seattle for a month.  Lots of driving. 

Headaches and nausea

Con’s of proton beam

Proton beam, even if it’s a better choice is probably not covered by our insurance.

We would have to go to Houston for 7-8 weeks.

We would probably need to leave tomorrow night or Thursday morning.

The expense.


As you can see it’s a tough choice.  On one side her sight (what’s left) on the other years of treatment and meds.  And that’s what we know of.  We meet with the doctors late afternoon tomorrow.  We will let you know.

Thank you for all the prayers and support.  It really helps. 

Again if anyone would like to donate, we are certainly thankful. 

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