Wednesday, November 2, 2011

The end is near

First I would like to thank everyone that has stood by us through this whole ordeal.

Over the past couple days I've noticed Luke's eye being lazier and lazier and i knew that wasn't a good sign. So i told my wife yesterday that this EUA wasn't going to be that good.

I hate when I'm right.

I went in with full knowledge that this would be the one where they told us it was all for nothing and that Luke's eye had to come out. It gave me a chance to prepare for what the next steps are.

The doctor came in and told us that the tumor in his left eye has gotten bigger and also the seeding has gotten worse. Meaning that none of the treatment for the last couple months has been doing any good.

We had decided a while ago that we wouldn't put Luke through anymore chemo. for all the good it might be doing it was by far doing more damage to him mentally then what ever good it might have been doing physically. Also for such a small child to be having that much chemo....... how good can it be to poison the body that much?

next steps.

sometime in the next 2 weeks we will go in and have his eye removed. what happens from there were not to sure details at the moment are kinda sketchy.

NO i can't bring the eye home. I asked.
will keep you all posted as i know you will know.



  1. Good luck with everything! We have a little girl, Georgina she is seven months and also has bilateral RB. We are currently going through chemo. I have just read through your blog and it has been very interesting for me. If you have any advice for us please send me an email. Would love to hear from you. My add is Really hope the op is a success!!!

  2. Hi Jessgoulden

    Hope you don't mind me emailing you. I got your email address from Luke's Journey, which I also follow.

    My son Harry is now 10mth old, and was diagnosed with Bilateral Retinoblastoma when he was 13wk old. He has had chemo, and we are now in the nervous stage of waiting to see if anything new starts to grow. He finished chemo at the end of september.

    I too write a blog, its called and you are more than welcome to read. I am desperate to find other people with babies with this god awful condition as its so rare and it feels so lonely somethimes.

    If I can help you or just be a friend then that would be great. You can find me on facebook too under Lisa Stephenson or on twitter as @lisastephenson3.

    Please do reply

    Love Lisa and Harry xx