Monday, April 21, 2014

Over the Hills and Through the Fields to a Third Option We Go...

We traveled across the state of California to UC Irvine hoping for a third option. So far the options Children's are,

1. Weekly chemotherapy with two drugs using a box that is surgically implanted under the skin so you have direct access to a vein. This treatment would continue for a year. About half of the children who undergo chemo for this type of tumor receive a second or third round because once you stop treatment the tumor begins to grow again. In order to get the tumor to stop growing you have to stop healthy cell growth as well. We are worried about what that would do to a three year old. There are also permanent damages to consider to her kidneys and liver.

2. Surgically remove the largest tumor that is wrapped around her eye. She would lose her eye and the surgery is risky (as in, she easily could die on the table from hitting an important artery).

So here is the update from today. We met with Dr. Tao of the Herbert a Eye Institute through UC Irvine. He is a doctor of Ophthalmic Plastic & Reconstructive Surgery and Oculofacial Cosmetic Surgery. He has experience removing these tumors and feels like he might be able to give us a third option, debulk the tumor without going too deep so she can keep the eye for now. This will reduce pressure which is causing her daily headaches and dizzy spells. Odds are she will need a second surgery where she
loses the eye in a year or two but it is short term fix for now. Other good reason for this option is we can test the tumor tissue to insure that it is not cancerous. Although it is rare for an NF1 tumor to be cancerous it will give us peace of mind to rule that out. 

Bad news is Emma is blind in one eye now. She can still sense light from dark but that's about it. Now we fight to keep her other eye and reduce the deformity that is increasing. I'll mourn that later but for now I am trying to focus on preventing total blindness. 

Next steps: we are taking Dr. Tao's recommendations back to Children's for a care council. Emma will have another MRI at the end of May, we will take that MRI back down to UC Irvine and if the tumor grows again we will move into surgery. If it is stable then we will give her a little more time. 

Moving forward we will need everyone's help and prayers. Any help with the next couple appointments would be wonderful. Also, our friend Arielle set up an auction to help us raise funds to help pay for Emma's medical bills which are quickly mounting. If you have anything that you can donate to the auction please comment on the blog and I will connect you with Arielle. We are also moving into a less expensive home to free up finds around the same time as all these appointments. We need help packing and moving. So, many ways to get involved! We thank you all for the help you have already given, the prayers and the kind words. Our friends and family have made this nightmare bearable. 


  1. Would art be helpful for the auction? What is the deadline to submit a contribution? I would be interested in connecting with Arielle. I can be reached at my email address which may post here when I click send but if it doesn't it's yvonne dot cullimore at gmail dot com. Prayers for your family. <3


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