Cohen is finished with the study drug

(I started writing this post but never finished it... So here it is almost 4 weeks later. It's still not finished but I decided to post it anyways.)
Cohen finished his last treatment of the study drug on November 14th. I'm so relieved that he is finally done! He is done! Wow that is so weird to say but I'm so glad to be saying it. He has come such a long way in a year and a month. I'm still just so baffled to how far he has come. Just a year ago we were told that Cohen had a cancerous tumor the size of 2 grapefruits. That he was in stage 3 which is high risk (stage 4 is the highest.) That only 30% of kids with neuroblastoma stage 3 survive. To be in that 30% he has to be in remission for 5 years. I'm just so thankful that he's been in remission for 4 months! Now we just play the waiting game. He will have his next scan in the first of January and then every 3 months after that.
Thank you so much for your support, thoughts, and prayers!!!

Costume contest

I just wanted to thank everyone for voting for Cohen. Unfortunately he didn't win 1st place but thanks to all of you he won 2nd place. They gave us tickets to Disney on Ice, a DVD, and a CD. We couldn't take Cohen to it but Kelsi had a lot of fun.
Cohen just finished his last treatment of the study drug last week. I will post more about that tonight.
Thanks again!

Kelsi's 6th birthday

<a onblur="try {parent.deselectBloggerImageGracefully();} catch(e) {}" href="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWusSWlKeKznstw9RqgcIcTbK8_hXAreYtjzi4360Afawkn3aYfJGv58_23VVK4K9b7vxrdkacC6tCOS-bjy6zYo04k7Kqy6wXX1R68ap0p5SHOYtgvrhKl8E57KD3VwHWc9oLLtJXM_M/s1600-h/P1040714.JPG"><img style="margin: 0px auto 10px; display: block; text-align: center; cursor: pointer; width: 320px; height: 240px;" src="https://blogger.googleusercontent.com/img/b/R29vZ2xl/AVvXsEhWusSWlKeKznstw9RqgcIcTbK8_hXAreYtjzi4360Afawkn3aYfJGv58_23VVK4K9b7vxrdkacC6tCOS-bjy6zYo04k7Kqy6wXX1R68ap0p5SHOYtgvrhKl8E57KD3VwHWc9oLLtJXM_M/s320/P1040714.JPG" alt="" id="BLOGGER_PHOTO_ID_5269327883710673138" border="0" /></a>Yesterday Kelsi celebrated her 6th birthday. We started out by opening her birthday presents. She loved everything we got her. Cohen helped her open her presents and wasn't jealous at all. Her daddy made her pancakes for breakfast and we got ready for the day. We went to see Madagascar 2 and then went out to lunch and got some ice cream with one of her friends. Yesterday Kelsi celebrated her 6th birthday. She started out by opening her birthday presents. Her daddy made her pancakes for breakfast and then we got ready for the day. We went to see Madagascar 2, went to lunch, and got some ice cream with one of her friends. She had a really good birthday. Here are a few of the many pictures I took yesterday.\
I can't believe it's already been 6 years since we started this journey with her. She is doing so well now and I am so thankful with all of the many blessings she's received. Thank you for the many prayers and good vibes you've sent her way. We really appreciate it!

Vote for Cohen in a costume contest!!!

I entered Cohen in the 97.1 zht Jack-O-Cuties costume contest. He is #170. Please please vote for him. Tell everybody you know to vote for him. We will win $500 and could really use the money for Christmas. Here is the link to the website http://www.971zht.com/pages/halloween/cuties08/. He is in the 0-2 year old category.
Here is the picture you will be looking for.
Thank you so much!!!

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.