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Hope for My Daughter: A Mother’s Experience with Optic Nerve Meningioma

By Mo Breden

Erin and me, 2 January 1981, Plattsburgh, NY

Erin and me, 2 January 1981, Plattsburgh, NY

When I made a commitment to write these blog posts I never imagined my life taking the turn it took two weeks ago, when my daughter called and told me she was having vision changes.

When Erin was eight years old she failed a routine vision screening at school and I took her to an optometrist. He called me back into the exam room and told me that something was blocking the flow of blood to the optic nerve in her right eye. Life from that point would never be so care free again, nor would I ever take vision, or health for granted again. We saw many specialists over the following years, however nothing was done until she was 14, at which point the vision was getting progressively worse in the right eye and a tumor was discovered. Two craniotomies later and Erin was blind in the right eye, the tumor was diagnosed as an optic nerve meningioma. Rare, at that time in a child. The surgical dissection of the tumor left residual tumor, which began to grow when Erin was a junior in college and experienced visual changes in her only seeing eye. This time the course of action was radiation of the right orbit, which contained the now, growing again tumor. Radiation was successful, and 6 months post radiation Erin was seeing better out of her left eye than she ever had.

For twelve wonderful years, Erin graduated college, began her teaching career, got engaged, and married a wonderful man, with a wonderful family. She and I traveled together on her spring breaks, last year at this time we were in Ireland; it was the trip of a lifetime. I retired, life was good.

Two weeks ago Erin called me and said, “Oh, Mom, I’m having vision changes.” The knot in my stomach was back, the same knot that I had when she was eight years old.

The last two weeks, were a cluster of interactions with the medical system, which were enough to make me scream in disgust and anger, but I did not. I pushed, Erin pushed and her husband, Pete, pushed. We got through to where we needed to be. With the help and the prayers of family and dear dear friends, we are where we need to be. Erin’s original tumor is still unchanged. This is a good thing because the radiation performed 12 years ago has stopped that tumor. However, a new tumor is growing in Erin’s only seeing eye, it is growing around and squeezing the vision from her only optic nerve. We saw this on the MRI, it was devastating. We stood in a physician’s office and were told to get things in order (affairs) think about another career field, and hope that the new tumor could be radiated.

Last Thursday, a maximum number of people were aware of our situation. Also a maximum number of people were sending prayers, light and good wishes to Erin. Erin told me to go home. I cried, the entire length of the trip home. When I got home Erin called me and told me to pack a bag and come back, she had reached her radiation oncologist in Gainesville (Shands Hospital) and he wanted her up there the following morning.

We left Gainesville still uncertain of the outcome, but with a decision to proceed with radiation if MRI showed it was possible and to proceed with radiation with the same radiation oncologist who performed the original radiation. On Monday this week, we returned to Gainesville, where MRI confirmed a new tumor, which could be radiated, and a start date for the radiation of March 17. Erin will receive radiation to her only seeing optic nerve twice a day for six weeks. For six weeks, we will live life in Gainesville and come home on the weekends, as we did once before.

At several points in these two weeks, I looked at my daughter, suffering and thought, “My God, how could this be happening to this loving, giving spirit?” I questioned, I lashed out, but in the end, I don’t know how to live my life without faith and without the love of my God. The moment, allowing me to hope, came when everyone had been notified of Erin’s problems and prayers for her were filling the universe. As bad as it is, prayer got us to the best-case scenario. This is what I believe with my head, my heart and in my soul.

Please pray, as we do, for the maximum damage to the tumor and the minimum damage to Erin’s only optic nerve. Even if you do not believe in prayer….pray.

Erin is posting to a Facebook page, Hope for Erin. Please join the page and follow our progress. Also a fundraising page has been set up by Erin’s best friend Jennette.  The money raised will help to pay insurance deductibles, co-pays and costs associated with treatment so far from home, and bills while she is unable to work.

Thank you for anything and everything you have done, or will do for my beloved daughter, Erin.

mo and erin

Thanks for stopping by to read my post; I hope to see ya’s next week, for Life with Mo… as it is.

One comment

  1. Lorna & Pete /

    Hi Mo, thank you for the detailed article about Erin. It sent a chill up our spine. We can only hope that when Erin gets over this hurdle, it will be the last one to bear. Our prayers are with all of you. See you at the 5K.

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  1. hope for erin. | - […] for more of erin’s story: hope for erin, jennette’s story & erin’s mom story. […]

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