Best Halloween Ever!!!

I can honestly say that this was the best Halloween we've ever had. Both kids were home, nothing major was wrong, they were happy, and they had the cutest costumes!!! Kelsi was an Asian princessand Cohen was a trainWe even went trick or treating like a normal family! We started out in a big group but the older kids were so excited they didn't want to wait for us. So Chris, Cohen, and I made the loop around our house. Cohen was a pro by the third house. He'd start running for the door as soon as we were on they're driveway. I'd knock and then he'd knock. He said trick or treat a few times. His costume was definitely a hit. It would've been fun to have Kelsi with us but she definitely hit more houses in the same amount of time and I think she had more fun with her cousins and her uncle than she would've with us. Here is a picture of the kids before we left the houseI felt so blessed to be able to share this holiday with my family the way we did. Especially with the way Cohen's been feeling. He has thrown up about 3 times a day everyday since the Sunday before Halloween. We were concerned and so were the doctors so they admitted him on Wednesday and nothing came back positive so he was discharged on Thursday. I call it lucky!!! I'll post more about that soon. I have so many things that I need to blog about but haven't. I promise I will do it soon.

A year ago today...

Cohen was diagnosed a year today... Crazy huh? I can't believe it's already been a year. He has been through so much in just one year. 7 cycles of chemotherapy, resection of his tumor, 2 stem cell transplants, 6 rounds of total body irradiation, 4 rounds of focal radiation, and the study- 3 cycles of the CH 14.18 (aka antibody or study drug,) 2 cycles of IL-2, and 2 cycles of IL-2 and the antibody. He just completed his 4th cycle of the study and has one more the week of November 10th. Then he'll be done!!!!!!!!!!!
I'm so proud of our little boy. He has been such a trooper through all of this. He is normally really cooperative with the nurses and doctors and is rarely in a bad mood. Although he is famous for saying no to all of them. One of the Nurse Practitioners makes sure she asks the right question just so she'll get a yes.
I am so thankful and blessed for all of the wonderful people we've met along the way. You all have made a huge impact on our lives and we appreciate all that you do for Cohen and the rest of us.
Also thank you so much for keeping him in your prayers. I truly believe in the power of prayer and know that your prayers have done so much for Cohen.

Cycle 4 of the study

Cohen was in the hospital this month from October 6th-10th then again October 13th-19th . This month he received IL-2 the first week; which he handled really well; and IL-2 and the antibody the second week. He had a really rough time the second week. It was harder on him this time than in August. He normally gets Dilaudid for pain because he gets really itchy and hives on morphine but Dilaudid isn't compatible with the other two meds. So they gave him morphine again because he did alright with it in August. He didn't do so well this time; his heart rate was in the 190's, he was bright red, itchy, had hives, etc. So they decided to take him off the morphine and put in an iv in his foot (later moved to his hand) with dilaudid. They said if taking him off of the morphine doesn't remove all of those symptoms than they'd consider taking him off of the study. We were ok with their decision either way. But luckily it was the morphine and he did much better. He finished the meds on Friday but still had high fevers and was nauseous so they kept him until Sunday. One of his cultures came back positive so they put him on iv meds at home for 7 days. He is back to his normal self again, as of Thursday, playing around and eating again.

Our brave little man

Cohen has been doing really well since he came home from the hospital 2 Saturday's ago. He's still on TPN and lipids but he's eating more food and drinking on his own. The last hospital stay wasn't too rough on him. The first days were hard but the last weren't too bad. He didn't seem to be in too much pain after the antibody was done for the day. He only needed oxygen the first night and came home a day earlier than the other times. He will start the IL2 next week and then he'll have the combo of the IL2 and the antibody the week of the 13th (that's the one that hit him hard in August.)
Here are a couple of picture from this last hospital stay. He absolutely loves his elmo and look at that hair.Thank you so much for all of your thoughts and prayers.

Sorry for the slow postings

I just haven't been myself lately. We're going through so much it's been kind of hard on me. :o)
Cohen is doing great. Everything went really well on Thursday. He went in at 9:30 and came out an hour later. We were out of the hospital by 2:30. The site bled a little more than the last two times but nothing to worry about. He just slept the rest of the afternoon and was playing around by dinner. I love how he just gets back up and acts like a normal kid. It was really hard last month when he wasn't himself.
He was suppose to start the antibody therapy today (painful study drug) but the medicine was stored wrong so it went bad. Rather than staying at the hospital for no reason they sent him home and he will start tomorrow. It'll run for 4 days like always and he'll go home once he's recovered.
Thank you so much for all of your thoughts, prayers, and comments. We appreciate it.

Surgery will now be on Thursday

Unfortunate Surgery...

(Chris here) Cohen's central line sprung a leak last night when we were flushing it so we had to rush him to Primary's. They repaired the line but one of the lumen's clotted. They put some TPA in the line to try and break it up. After hours of waiting it didn't work. So they sent us home and told us to contact Home Health to try again that afternoon. The nurse practioner called us in the morning and had us try to flush the line. After that didn't work she had us come back up to the hospital. They ended up repairing it again to see if the glue they used may have clogged it. While repairing it they figured out the glue was not the problem. They figured it was just super clotted. So guess what..... Surgery to replace the line sometime on Monday.

Update: Surgery will now be on Tuesday.