Tuesday, September 20, 2011

No more Ouchie

I say no more Ouchie because thats how we would describe Konner's port to our other kids. They couldnt wait for Konner to not have an ouchie. The downside of not having a port in is now he will have to get an IV for blood draws. But that is ok. The good thing is we don't have to worry about infection and we don't have to make the 100 trips to E.R for high fevers :) There is are many feeling that we are experiencing right now. Excitement, sadness,anxiousness, relief..... just to name a few.

Excitement because we are excited to finally have his port out. to us it signifies the end of treatment.

Sadness because its hard looking back on everything our little guy has had to go through. He has lived with that port for most of his life. It was placed when he was 2 months old and he is now 19 months. Sadness because you can tell he knows he is missing something. Every once in awhile i will find him with his hand over his heart where his port was. He use to always touch it and now it is gone. That has to be hard for a little guy. To not know why it was there in the first place and to not know why we had it taken out.

We are anxious to see what the future holds for our son and for our family. We hope that it is with him staying in remission.

And relief......I'm sure you all know why.... we feel a huge relief. When we started this journey we didn't know what to expect or when we would see the light at the end of the tunnel. But we see it now and it is bright!

Having a baby with Cancer is so hard. They don't understand why they are so sick. You cant help take their ouchie away. All you can do is numb their pain. I wish that Konner understood why he had to go through everything. But i know that when he is old enough to understand, He will look at me and say thanks mom but i dont remember!

Again I can never say enough thank yous to our wonderful supporters and the AMAZING Doctors who helped save my babies life. Thank You A million Times!!!

I will keep Konner's Facebook and blog up. I will update all of his followers with pictures and how he is doing in life. Thank You for being such a huge part of our family and taking this journey with us. It does not stop here.

Can you just picture Konner in 17 years graduating! Yikes!

Saturday, September 17, 2011


I have not posted in such a long time. I think its cause I was trying to keep the video below at the top of the page :).. well alot has happened. Good things, overwhelming things, but good things! 

So on September 8th Konner had his scans to check on that tumor that they were concerned about. We got the results the following day and everything seemed great! His Neuro-Surgeon released Konner from his care. He said everything looks great and it looks like what they were worried about is old tumor. He said that it did not change characteristics and it did not grow. So with that being said Konner no long has to see the great Dr. Adelson at PCH anymore unless his Oncologists has any concerns in the future!! Yippee right......Right!!

A day later Konner's Oncologist Dr. Eshun called to say that he spoke with Dr. Adelson and they both feel that now is a great time to have Konner's Port taken out!! Woot Woot! We hung up and he called back no later then 5 minutes later to say that Konner is also in remission for REALS this time!! He said that Konner is NOT cancer free but he is in remission because his tumor is not growing and has not grown for a year.  So no more port for Konner! I cant wait for him to feel like a kid. He has not gone his almost 2 years of his life without having to get stuck with a needle, take medicine, get put to sleep every 3 months, go to the E.R. for fevers, transfusions etc. Man that's alot for a baby to go through. So on Monday the 19 Konner will once again be put to sleep and will have his port taken out! Prayers for him! 

Needless to say this is a big step for us. I have questioned myself at times. Is it ok to leave this tumor in him? Will he stay in remission? What a friend and fellow mommy to a Neuroblastoma fighter said to me was. There have been multiple parents who have decided to leave their kids tumor in and opt to not have surgery and their kids are still fine today. There is a chance that Konner's Tumor may become active again and then basically you are no worse off leaving it alone and watching it now. Does that make sense? Yes Because when we decided to leave the remaining tumor alone because it was attached to nerve endings, our doctors and us thought that was best for Konner. His tumor shrunk 80% with the chemo and he has done really well. I didn't want to risk paralyses or loss of bowel function if this tumor was going to calcify. Will he stay in Remission? I dont know, but no one knows except for our Heavenly Father. All I can do is pray hard and enjoy every minute with my boys. I can be there for Konner and I can do my part in finding a Cure! 

We as a family are so BLESSED to have all the prayers, love and constant support from EVERYONE! Konner has touched so many lives, he is famous and he doesn't even know it. I hope that one day they will find a cure for Cancer. I hope that one day they will find Why our babies get Neuroblastomas. Thank you All so much. Thank you for sharing Konner's story with your friends and family. And thank you for Always keep up with my "Little Tough Guy"!

I hope and Pray that one day Konner can look back on everything and in 10 years when his treatment plan is over say "Man that was a rough 10 years but I did it and I beat it like a CHAMP!"