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100 days done... Got green light but need to go slow too

posted Sep 28, 2013, 10:20 AM by FightingFor Mya

We went down to Dana Farber yesterday because it has been 100 days since Mya had her bone marrow transplant. That was needed to get rid of the rest of the bad and to start with only good cells. So, Mya was weighed (15.2 kilos/33.4 pounds) and measured (102.4 centimeters). It was quite a relief to see that she has continued to gain and that she has gotten even taller. For those few who have seen her these last couple of months, everyone has remarked how tall she is getting! Mya is thrilled at that, says that she is a big girl now! :)

We met with the nutrionist. She was pleased with the progress. I expressed concern that she just doesn't seem to be eating consistantly. Her response was that she has continued to gain and that is the most important thing. We came up with a strategy on slowing down on the overnight formuala in the hopes that that will increase her hunger during the day. We shall see.

We met with Oncology. They want us to start a new drug, called Acutain. This is used for acne; however it has been discovered that it can also help in cancer patients. We are hoping that this will stop any new growth of the tumor that is remaining inside of Mya's head. The regime is 2 weeks on, then 2 weeks off; for 6 months. Ugh! But, they are hoping that this will help. We will learn more about it and probably start this next week.

We also met with the Bone Marrow Transplant team. They reviewed Mya's blood work (boy, that was fun to do with a 4 year old!) and said that Mya could now slowly go out into the world (grocery shopping, etc). We are still to avoid really crowded places, but each week, her immune system is getting stonger and stronger.

Right now, we are going through therapies with Mya. We have Physical, Occupational, and Speech therapists coming to our house, each 2 times a week. All have said that over the past few weeks, Mya has shown improvement. Our overall goal is to have Mya ready to enter school next year with no delays or problems.

The next big day is November 6th, the next MRI. On this day, we hope the image will show that the "shadow" still looks the same and that it hasn't grown or spread. Please join us in our wish.

We also wanted to let everyone know, that as of today our family and friends have raised over $9,000 for Mya's care. We do not have the words to express our gratitude and relief to everyone who has taken the time to give of themselves, of their time, and of their dollars to our daughter's cause. The support that has been giving to us so willingly and freely has made a huge difference in our lives. We will continue to work towards our goal to be cancer-free and I know in my heart WE WILL WIN!