Good News All Around

The scans came back and the tumor has shrunk condiserably! We are very happy. The cramping pain he had been having was making me so worried. The doctors expect that there will always be some residual tissue there from the tumor even if the cells are dead, so it may never be completely gone. They are only concerned if they see new growth. So everything is right on track. The other really good news is that the new medicine they gave him worked and he slept really good 2 nights without cramping pain. So they think the pain was from reflux probably caused by all the treatment stuff. He got his chemo last night and so we are now at home. It was almost a week at the hospital, but it was productive so we are glad. We do have to give him the IV antibiotics at home for an hour each time at 6:00am, 12:00pm, 6:00pm, and 12:00am till Wednesday. Thank you everyone for the food, calls, visits, and prayers.

New Plans

Well they decided just to do the scans tomorrow since we have been anxious about them and we are here anyways. They are still not concerned, but hopefully the scans will ease our minds. They'll do the chemo after that and then we will be home on Friday.

Day 4

More bad news and good news. Last night was a really bad night. Jordan had lots of cramping pain keeping him up a lot. It gives me flashbacks to when he was initially diagnosed and even though none of the doctors think this pain has to do with the tumor, it is impossible to be rational and not be anxious. They are going to try another medication. Apparently, it is common for kids undergoing treatment to have abdominal cramping, but hard to always understand where it is coming from.

The good news is his counts went back up again, so they are going to have us stay and do his chemotherapy tomorrow. and Assuming everything is ok, they'll send us home after that. I'll have to give him the IV antibiotics 4 times a day at home. That is going to be something. It is a two person job, because he is so wiggly and grabby and you have to keep everything sterile.

Day 3

Well the good news is they are going to send us home tomorrow afternoon it looks like. He has had 2 negative cultures and they assume the 3rd will be negative so they said they'd send us a little early. The bad news is that all his blood counts are really low. That has never happened before. They gave him a blood transfusion today. One of the nurses said, "just what he needs, more energy!" For most kids if they need a transfusion they are really tired and worn out, but not Jordan. Anyways, they can't give him his chemo till the white blood cell count goes up. So we'll probably have to come back on Monday for that. Another bummer is the the combination of the previous chemo drugs and low counts has made walking difficult again.

Day 2

Well we're here at least till Thursday at this point. Jordan's counts are low for the first time in this whole ordeal which is a little discouraging, but today he seems to be feeling good. He's done lots of trips around the floor in his yellow taxi car. He's greeted all his friends..Zach, Lazar, Jack (from radiation), Ethan and all his favorite nurses. He's had a visit from the clowns and the singing chaplain. He is enjoying his new Elmo book from his friends Lisa and Lucy and his suitcase of toys from his friend Liz. His favorite is the Angelina ballerina Nutcracker piano which he plays and dances to. We are in a huge room by ourselves which is nice. It's usually for 3 people but we have it to ourselves. Brent said he felt like he was at a sports bar with all the TVs. I don't think I'd take it that far. Thanks for your prayers. We'll keep you posted.

Back at Children's

Jordan came down with a fever early Saturday morning. I took him to the ER and they did a blood draw, checked him out and sent him home. Unfortunately, the blood cultured came back positive for a bacterial infection so they called us last night at 10:00 and told us we had to come back and get admitted. It was a long night. We went to the ER again and then finally to a room by 1:30 am. So the rule is that we have to have 3 days of negative cultures until we can go home which means we're here at least until Wednesday. He is supposed to be admitted Friday for chemo so they might just keep us till then or try and do the chemo early so we don't have to be here that long or come back on Friday. Jordan is doing pretty well. He seems a little out of sorts, but is feeling ok. This is like the last time he had a blood infection. They are not worried, but it is very important that he gets the antibiotics so it does not become serious.

Speed

We are finally past some of the side effects of the radiation which is a relief to me. He seems to be feeling good today and slept well (for him) last night. And today, he actually had a two hour nap. I couldn't believe it! His latest past times are ... Taking off his shoe as I'm putting the second one on, and then screaming till he can get his socks off too, sitting on the cat, wearing Sitara's headbands, messing up any game the kids try and play, unrolling all the toilet paper, helping Tate and Luke play video games, pulling all the books off the shelf, and WALKING! Finally! A guy at the library called him "Speed" and Sitara thought we should actually change his name. Not a bad idea since he can undo anything you're trying to do in no time. I keep trying to post new pictures but have had some trouble. Hopefully, I'll get them on soon.

The Last Wednesday

Jordan's friend Kyle from radiation sang a little song yesterday (his last day)..."Today's the last Tuesday, the very last Tuesday, do ta da do do do!" So today, I can't get out of my head.."Today's the last Wednesday, the very last Wednesday, do ta da do do do!" Thank you everyone for celebrating with us. Brent and I got to go out to lunch. Jordan spent the rest of the day swinging, playing in his car, yelling at the dogs, and getting into the animal cookies in the cabinet. He loves the pink and white frosted ones. We've got an appointment tomorrow at Children's and then we're there all day Friday for chemo. Then we will be at the very middle of the middle of chemotherapy, but definately on the way down the mountain.