Saturday, April 12, 2014

False Hope and a Grim Choice

Yesterday, honestly, it was a bad visit. The Neurologist told us last month that the tumor had no significant growth but it did grow. We spent a month in a sense of false hope. Emma's tumor grew 1mm on one side and 2mm on the other side. Although to his credit that is not "significant growth" it was growth in a short timespan of three months.

Here is one huge problem, Emma has a very rare condition. She has a NF1 optic nerve, stage one glioma that is causing prosthesis, meaning is is causing her eye to come out of the socket. Her tumor is wrapped around her optic nerve in a spiral like manner making it inoperable with out losing the eye. Her condition is rare, her type of tumor is rare, the fact that it is causing prothesis is rare and that it spirals around the nerve is rare. She is such a unique case that no one knows what to do with her.

Emma's doctors are revisiting the idea of chemotherapy but we have huge concerns about that treatment. I have mentioned our concerns before but here are some of the main reasons. In other cases it does not shrink the tumor and as soon as treatment stops the tumor grows again. Half of these cases must undergo a second round of chemotherapy. The bottom line is it is not proven effective. There is no cure, there is no treatment. Medicine is not comfortable with that fact so they want to push us into a treatment just to try something, anything. But this mother needs a better reason to pull the trigger other then, "it's the standard model of care". Sorry docs but I'm a pain in the ass. I will be requiring second and third options from other doctors outside your practice. I will be reading studies, researching what other countries do and (gasp) alternative medicine. If in the end chemo is the best option then of course I will jump on board. Never let it be said that this mother blindly follows doctors orders with out doing her research. Luckily our Genetics doctor is a mother herself and understands my stance. She is backing my choice to research more.

We decided to have a conference with all of Emma's doctors at the same time so we can ask all of the questions. Present there will be a Neurosurgeon, Oncologist, General pediatric doctor and Genetics Specialist. While we wait for that appointment to be set up I'm going to get another opinion from a new doctor and contact the Children's Tumor Foundation to see if they have any cases similar to Emma and what they did in that case.

As it stands right now Emma's outcomes are grim unless I can find something. We are not, thank God, worried about mortality but this is still a very difficult "stuck between a rock and a hard place" situation. I wish Emma was old enough to decide for herself. I wish I wasn't already so tired and emotionally spent but most of all I wish for a better option. If anyone reads this and can help us please contact me.

That's all for now, forgive me if I take a few days to respond to messages


  1. We'll be thinking of Emma and your family.

  2. My family prays for you. You are a strong family!


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