Well, Ben has been neutropenic for 2 weeks and we found out yesterday that his numbers have dropped even lower :( His ANC is now down to 60. Hemoglobin is also low but at least his platelets are normal!
Ben is very bummed because he has been waiting all year for a special chess camp that is taking place this week. The boys went last year and they had the best time ever. When I asked them if there was only one camp they could do this whole summer what it would be - they both chose this camp without any hesitation (which totally shocked me). Anyway, we are trying to cheer him up by doing other activities, including taking over a good friend's pool this week while they are out of town. David decided he didn't want to go to the camp either without Ben - he said he wanted to hang out with his brother and try to still make it a fun week for him.
We are expecting to hear from his doctors this morning about what the next course of action is going to be. Very likely they will be putting him on antibiotics to help protect him from all the things currently going around. We are just really hoping we can get these numbers up soon so we don't have to postpone his Make-a-Wish trip!!!
Monday, August 9, 2010
Monday, August 2, 2010
Ben is 10!!!
Well a lot has happened since the last post.
Ben had his very last spinal tap in July - all went well except some crazy dreams about chickens attacking him but he handled everything with his fantastic positive attitude and as usual was in inspiration to everyone. We found out his numbers weren't terrific but not officially down into the neutropenic levels so we were given the okay to go on our trip as long as we agreed to go back to the hospital right after we returned for a blood check. We went up to Whistler, British Columbia and Ben was able to fish every single day!
We did visit the hospital upon our return to LA and discovered Ben's numbers had dropped so was neutropenic. We have had to make some adjustments to his activities and plans for his birthday but Ben really wanted to have a smaller celebration this year so we invited two great friends over for a sleepover and they had a blast. The silver lining to being neutropenic is that he isn't allowed to take some of his medications so he hasn't had to have his normal food restrictions in the evenings and he has been taking advantage by having lots of late night popcorn!
We went back for another hospital visit yesterday. Ben is still neutropenic and his liver functions are still elevated but the good news is that his ANC is going up (484) and his liver function is coming back down closer to normal levels so at least everything seems to be headed in the right direction. For his birthday celebration he went fishing with family and friends and had a great dinner grilled up by Scott with lots of presents to unwrap. Today is his actual birthday and he has a couple of friends who want to stop by but otherwise he says he wants to hang out and play with his new toys, watch a movie and eat popcorn! I think we can handle that!
As some of you know he had asked that people not send him gifts this year but instead make a donation to the Cedars-Sinai Pediatric Hematology-Oncology department. Thank you so much to all of you who have done so. It means so much to Ben to try to give back at least a little to this amazing place that has done so much for us!
Ben had his very last spinal tap in July - all went well except some crazy dreams about chickens attacking him but he handled everything with his fantastic positive attitude and as usual was in inspiration to everyone. We found out his numbers weren't terrific but not officially down into the neutropenic levels so we were given the okay to go on our trip as long as we agreed to go back to the hospital right after we returned for a blood check. We went up to Whistler, British Columbia and Ben was able to fish every single day!
We did visit the hospital upon our return to LA and discovered Ben's numbers had dropped so was neutropenic. We have had to make some adjustments to his activities and plans for his birthday but Ben really wanted to have a smaller celebration this year so we invited two great friends over for a sleepover and they had a blast. The silver lining to being neutropenic is that he isn't allowed to take some of his medications so he hasn't had to have his normal food restrictions in the evenings and he has been taking advantage by having lots of late night popcorn!
We went back for another hospital visit yesterday. Ben is still neutropenic and his liver functions are still elevated but the good news is that his ANC is going up (484) and his liver function is coming back down closer to normal levels so at least everything seems to be headed in the right direction. For his birthday celebration he went fishing with family and friends and had a great dinner grilled up by Scott with lots of presents to unwrap. Today is his actual birthday and he has a couple of friends who want to stop by but otherwise he says he wants to hang out and play with his new toys, watch a movie and eat popcorn! I think we can handle that!
As some of you know he had asked that people not send him gifts this year but instead make a donation to the Cedars-Sinai Pediatric Hematology-Oncology department. Thank you so much to all of you who have done so. It means so much to Ben to try to give back at least a little to this amazing place that has done so much for us!
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