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Really Tough Day in Boston

posted Nov 12, 2013, 7:31 AM by FightingFor Mya

Well, today was really hard for us. Got to Boston on time and Mya had the MRI done. It took longer, which made me worry more and with good reason. After Mya woke up, we made our way over to Dana Farber.

We got all the regular stuff out of the way (weight: 33.88 pounds, and 103 centemeters - she gained another centemeter!). Then we waited for the doctor. And waited.... and waited. We knew that that was a bad sign.

When the doctor came in, it was a team of them. They asked Mya if she wanted to go back out to the waiting room to play. She reluctantly went. Then the boom fell.

We have moved from a stable state to aggressive with Mya's cancer. The scan shows that she has another tumor in a different place in her head (in adddition to the remainder of the 1st tumor). The scan also shows that she now has another tumor (very small) on the middle of her spine. This is where they normally see tumors of this type of cancer. This is also why when they do MRI scans for this type of cancer, they scan the brain AND the spine.

So, this means that she now has cancer in a 2nd area in her brain as well as a completely different area in her body.

We then asked what the options were for treatment, since we've already done aggressive chemotherapy. The team told us that we could do radiation, but they would want to do it all over and not just targeted to the areas that are currently showing tumors. However, with this type of approach, they are concerned with quality of life and the effects the radiation would have on her development which would be permanent and life-changing. They then discussed using experimental drugs to combat the growth of the tumors. The percentages discussed for the success with the drugs was around 5-10%. Not awesome, but if you are in that small percentage, then its fantastic for you.

I asked if we had moved to a terminal diagnosis and the doctors said that we have moved in that direction, but we weren't there yet. However, they have encouraged us in the direction of indulging her whisms. I mentioned that I wanted to take her to DC to vsit family and they said that we should go.

We go back next Thursday. This will give them time to really analyze the scans and get all the team's input, even the neurosurgeons. So, we will give her all the hugs & kisses that we can and will go back to Boston next Thursday to see what they have to recommend to us for the treatment path. I think Ray and I are leaning towards the experimental drugs.

Please send our little Mya a heartfelt prayer if you can. Thank you.

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