Another 4 Months!

Today was our 4 month checkup at St. Jude. We started with blood work, which Alyssa still hates. But the nurse was very good and quick so we were in and out in no time. Scans and X-Ray’s also pretty quick. Which meant Alyssa and Luca had time to make decorations for the Mardi Gras parade. (Luca was out of school due to ice, so he got to hang out with us today). The parade was really well done. They had tons of beads, foam balls and cups to hand out to everyone. Alyssa was throwing beads out in huge bunches. She had such a blast.

We met with her oncologist and went over all her specialists and things going on. He told us that they saw something on a scan that was unclear. He was 99.9% sure it was okay. That .1% still makes you worry. I don’t know why, the odds are totally in your favor. So we had to squeeze in another scan after endocrinologist.

I don’t really know at this point why we even went to the endocrinology appointment. Her IGF-1 labs were not back yet. And even if they were low again, there is nothing to do. Increlex is off the market. Growth hormones probably won’t work, plus insurance won’t even pay because she is IGF-1 deficient, not growth hormone deficient. We did find out there is no sign of puberty hormones. No shocker there! She did grow almost an inch in a year. Wow! Setting some big records there. I guess tiny growth is better than no growth. It’s just so frustrating. They know what’s wrong and how to fix it, but they can’t. No idea how much or if she will grow. How tall will she be? Who knows!

After lunch we headed back to the oncologist who told us the scan was fine. Whew! That is a relief! He did mention her scoliosis looked worse on the scan and it made him nervous, so we moved her orthopedic appointment from June to March just to have it checked out. I don’t expect anything strange since we were just there in December. I do love getting the report in my hands that says NED (No Evidence of Disease!). That makes us all happy!

2 Comments  to  Another 4 Months!

  1. No matter how much Alyssa does or does not grow, she will always have that HUGE personality!!

  2. Aunt Cathy says:

    Wow! Glad to see NED! That is great news. I am praying that her appointment in march will be ok. Alyssa you amaze me ! You are such a strong young lady! Live Strong! Love you all very much. Aunt Cathy

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