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Easier, but harder day in Boston

posted Nov 14, 2013, 5:06 PM by FightingFor Mya

Ray and I met with Dr. Manley & Dr. Chu about Mya's status and where we need to go from here. They said that they met with the radiologist about Mya's case. He feels that doing radiation on her whole head and on her spine would be the necessary treatment for her tumors. The radiation would be done over six days; every day she would have to be sedated, then radiated. In the end, she would experience short-term & long-term effects of the radiation. Dr. Manley said that she would remain a 3 year old for the duration of her lifetime. All of this & with no guarantee that the treatment would even work. The tumors could still be there or new ones appear.

So, radiation isn't an option. We then discussed clinical trials. The few trials that are going are in Phase 1, where they only admit a handful of people. At this time, there aren't any clinical trials open for Mya. To participate in a trial, you have to qualify and Mya does not.

The only option that is available to Mya is experimental drugs. Dr. Chu told us about the 5 drug cocktail that they've found that's been used on Mya's type of tumor. Of the small amount of people that have been given the drug cocktail (9 patients, that's right only 9), 5 died from their tumors (meaning that they subcomed during treatment), 2 experienced no effects (good or bad), and 1 experienced slowing of the tumor growth. Unfortunately, this is the only option the doctors have been able to source out. The drugs that make up the cocktail aren't anything exotic. The reason this combination is called experimental is because these drugs normally aren't used in this manner. Two of them are chemo drugs, which she has received before. This time however, she is going to be getting much smaller doses over a longer period of time. The other drugs are used for different things. However, when used together, they are supposed to inhibit blood vessel growth. In this manner, the doctors are hoping to "starve" the tumors that are there so they won't continue to grow and possibly even shrink.

By using the drugs, we are hoping to gain time. There isn't a cure for Mya. No magic pill, no waving of a magical wand to make everything all better. We are going to work on ensuring what time we do have with Mya will be extraordinary. This is not to say that we are giving up. WE ARE NOT!! However, we want to do our best in making her life as full of joy and laughter as we possibly can. The doctors actually did give us an estimate of time, which they said they don't normally do. They think Mya might have between 6 - 12 months before the end comes for her. That's not to say that she might make it longer than that (we hope & pray), but it is hard to say.

For right now, we are going to focus on our trip to DC next week, then Thanksgiving with family. We are also going to take Mya to Florida around X-Mas, we are working on the dates for that trip. We are hoping to get that finalized soon.

As always, thank you to everyone who continues to send their love and support to us and our family. Believe it or not, it really does make a difference and makes the heavy load easier to bare.