March 2003 Updates
3/31/03 Update
March 2003 Updates
3/31/03 Update
Ben's Counts are good enough to start 2-CdA chemo this week (his 10th round). We are going to do something new and only give it to him for four days instead of five just to be a little easier on him.
His EEG of his brain came back normal. We expected this because it was normal even when he was having seizures and blindness. We are going to slowly take him off of the anti-seizure Phenobarbital medication over two weeks. It is an additive medication so we will see how he does.
Ben has not started talking yet at all. We are going to investigate speech therapy. He understands everything, just no speech.
We actually took a week of vacation last week and visited Carolyn's parents up in the Mountains (Reno, Carson City, Lake Tahoe & Kirkwood area). Ben and Marie went sledding and loved every minute of it! Ben really enjoyed watching the snow cats groom the ski trails every evening. Marie went skiing and she is getting much better. She also tried ice skating (like the cartoon mouse Angelina Ballerina) for the first time. So cute.
I love this picture of Ben - he looks so grown up.
3/19/03 UpdateOnce again Benjamin's white blood counts are suppressed. His ANC is 345 and we want it to be 1000 at least. His neutrophil count has been low for several weeks. This Monday we tried for chemo, no luck. Today, Wednesday, we tried again, no luck. We are going to take a break for a week and see if they go up on Monday the 31st. We are seeing that Ben's counts are taking longer and longer after each treatment to recover.
We are not going to give Ben neupogen (which artificially boosts his ANC) this time. We want to see if his system recovers on its own.
Ben had an EEG today to check his brain waves for abnormal activity. We do not have the results yet. We expect them to be normal. If they are, we will try to remove him from the antiseizure medication.
Ben looks like a boxer lately. He has landed on his face many different times and he now has a fat lip, cut up nose and bruised forehead. Couple that with his few teeth and his big ears and he looks like a seasoned prize fighter.
We found out some very sad news today. One of Ben's roommates from PCH is no longer with us. She was a beautiful, wonderful person - we are extremely saddened to have her leave us at only nine years old. Read Haleigh's story here.
3/10/03 UpdateBen's counts were not high enough to start chemo this week. So we are giving him neupogen shots each day this week and we will try for his 10th course of 2CdA next Monday, March 17.
We finished his home IV antibiotic infusions yesterday. We are glad to be through! Ben is doing fine. No signs of fever or anything else. They took another blood culture at clinic today to make sure the bacteria is all gone.
We are going to get an EEG done next week to see if there is any seizure activity going on in Ben's brain. If it is clear then we will try to wean him off the anti-seizure medication (Phenobarbital) and see how he does. We are eager to get him off the Phenobarbital if we can.
Ben loves to feed himself yogurt. He would like to feed you some too....
3/1/03 Update
Ben came home from the hospital today. His fever is gone and he seems to be feeling much better. We are all tired, as it is hard to sleep in the hospital. We are glad Ben is OK and to be home!We will have to continue IV antibiotics (Vancomycin) for 8 more days here at home. The nurse came today to train us how to hook the meds and pump up to his portacatheter. He will receive a 2 hour drip 4 times a day. We are trying to figure out what he will do while hooked up to the pump for 8 hours a day. We will try to do it during naps and sleep. But, it is sure better than being in the hospital.
In this picture you can see Ben's new backpack setup. Can you see the big medicine syringe sticking out?? The IV pump is in there pushing the meds through the syringe into his porta-catheter. It makes him very back heavy, but he is getting used to it - and the key all important thing is that he is still mobile - he has MANY things to do!!
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