Little T's platelets came back today at 87, the lowest in a while. His hemo doctor talked about putting on Vincristine again, aka chemo if his numbers don't improve. Little T has been on high doses of steroids for over two months. His hemo doctor's not comfortable having on him high doses for too long due to steroids' long term effects. He's ( Read more... )

I guessed Little T's platelets would be 95. They were 97. That's not normal, but also not dangerous. If his platelets continue to remain at this level or above, he's going to continue on the same high dose of steroids for another month, then gradually wean down ( Read more... )

Unfortunately his platelets have dropped to 67. Below 50 is when we need to worry about him pulling up and cruising, but it's a downward trend. Also the clinic is closed on Friday, so instead of going in then as we would normally with a number like that, we have to wait until Tuesday ( Read more... )

Little T's platelets today were 87, so really about the same. That's what I thought going in. But I didn't hear what I was dreading: he would have to go back on Vincristine. I'm very grateful for that ( Read more... )

I'm having a really hard time not worrying about Little T going back on Vincristine. I know we can get through it. We went through it before. But I feel sad when I think about him getting another Broviac, losing his voice, getting weakness in his legs. I don't know why I can't stop thinking about it. It does no good, since there's nothing I can do ( Read more... )

Today Little T's platelets fell back down to 80, so Little T is back on massive amounts of steroids. We're not in the "fall down brain bleed" danger zone, but in the "fall off changing table" danger zone. Like most parents, we're already cautious about that type of falling anyway. He's already immuno-compromised. I'm bracing myself for more ' ( Read more... )

This morning we had amazing news. Little T's platelets suddenly bounced back to normal (211) We're totally stunned. His tumor has never responded so quickly. We were expecting weeks of treatment ( Read more... )

We had a bit of a scare last night, because we saw petechiace on his left forearm. We were worried that his platelet count might be dropping to the dangerous internal bleeding level. So this morning C took him into for another blood test. His platelet count was 97! Not normal, but definitely out of the worry if he bumps his head stage ( Read more... )

Little T's tumor is regrowing at the ends, though it continues to shrink around the middle. It would all be fascinating if it weren't my son. He's back on Amicar and Prednisolone (steroids), which means that he's immuno-compromised again. His tumor consumes platelets again. Kasabach Merritt Syndrome returns again ( Read more... )

Yesterday Little T seemed quite recovered from his illness. He said his first word. He said "bye" clearly and distinctly as his sister left the car for preschool. He has uttered no other intelligible words since unless you count 'gah' and 'yeah yeah yeah yeah'. At this age, Special K loved to repeat words over and over again. She made sure everyone ( Read more... )