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Alicein 9 years 8 months ago #31711

  • crystal lee
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I think since this is the first time his platelets have really swung higher for you it is going to take awhile for his body to look healthy. And he WILL swing up and down. Just count on it. And he isn't going to necessarily look great while that is happening.

I'm not sure Luke looked "worse then normal" when his platelets were swinging. I think he looked "different" then normal. I think what was so hard for me is we'd gotten used to him looking so good and feeling so good that if he had a swing and he didn't look that good it would be difficult, and of course, concerning. When his platelets were zero to 20 he had a grey hue to his face and little energy. We stopped seeing that early in treatment. We would wonder if we were going backwards EVERY SINGLE TIME he would swing. Seriously, you'd think even with me knowing that was going to happen, and having been through it several times, that I would have been fine with it. But I think as a parent there is always that nagging feeling in the back of your mind, "what if?" A ways out now (3yrs in Aug. we started h-pathy), I would say I'm less fearful of swings (if I do see one). They are few and far between this far into treatment. And this far in, he NEVER looks horrible like he did when he was at zero. Now we mostly are looking to see his gut heal so I look for/see different things then 2yrs ago.

Not sure that helped at all.


Thanks, this did kinda help. My son doesn't really look different he looks like he does low teens even single digits..just not pretty..Maybe after a few weeks of looking GREAT it is just taking time to adjust but he has petechaie in more spots at the same time than I have seen in months..Under his eyes look a little dark..One of the first things I noticed when he was doing fantastic was how wonderful his eyes looked. I am trying so hard to keep the faith and hang in there but he was so stubborn for so long it scares me if he crashed he staying here for a LONG time..Thank you again for your help

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Alicein 9 years 8 months ago #31715

  • alicein
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Hi Crystal,

Luke had dark circles too! His were from food allergies, but still, it was so nice to see those go away. Yep. I think there are things as a mom that we KNOW what they mean on our kids. I honestly think it took me about two years to stop worrying about every little thing and even now, if something "major" happens (and it's really not major), I still have a nagging feeling in my heart. And, every time it ends up things are just fine. I think that's the natural course of a parent when you've had a sick kid. Hang in there. Make sure you're following up appropriately, dosing as needed, and he'll continue to heal. And feel free to express the fear anytime. I know sometimes it just made me feel better to be reassured that his body was healing. Sometimes the head knows that but the heart is a bit slow to follow. :)

All the best,


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