Rollercoaster Labs: Hoping for a Smoother Ride

Demi has been able to restart her toxo meds and has been on them for one week now. On
Tuesday we were told she had a significant drop in her neutrophils yet again. I’m a bit frustrated, concerned and still somehow optimistic. I have the utmost faith in Demi’s hematologist. I will continue giving Demi neupogen injections as the doctor orders.

Demi has her labs repeated on Thursday and her neutrophils were the highest they have ever been. So now we are in a position where at some point her neutrophils are bottoming out and then being overshot from her injections. Her hematologist has a great plan this coming week that I definitely support. Hopefully we can get a handle on this and keep Demi from having these huge lows and huge highs.

Demi’s neutrophils drooped so low this week that I thought we may have to stop toxo treatment but luckily we did not. So hopefully we can manage this well enough for her to stay on her treatment plan.

We want Demi to remain on her toxo meds. Remember these meds are proven to give children with toxo better neurological and cognitive outcomes. Demi is honestly doing very well considering. In my opinion, she is on target developmentally for a child with a visual impairment and potentially on the heels on those who do not have visual impairments. We are continuing all of her therapy and she seriously impresses me daily!


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