Successful Run

Today was the Run for Konner's Fight!! It was a HUGE success. I would like to thank ALL Volunteers and All those who Participated!! Victoria Heuett You are an AMAZING person. I am so proud to call you my Friend. Thank You for doing so much and for Organizing the Run. Karah Flake Thank you For the Wonderful job today and for taking all the picture. I cant wait to post them!

Decisions, choices, decision....................................

So Kyle and I have made our decision about Konner and his treatment. To us this is the right choice and we know that Heavenly Father has us pointed in the right direction. So we have decided to leave the Tumor in Konner. At times I think to myself how can I come to this conclusion. How can I leave Cancer inside my baby, The thing that made him so sick in the first place. Well here is our reason...... Konners tumor shrunk 80%. That is what the doctors were hoping for. When you look at the image scans it really seems unreal. All of Konners Doctors have said the same thing about his tumor and I know they have his best at heart. Chemo stays in your body for up to 3 months after treatment. So that could shrink his tumor more. They also said that these tumors have a tendency to grow a layer of calcium over them which will make them become inactive. Yes his tumor will more than likely have to stay in him for the rest of his life. But it will be a dead tumor and will not bother him. I asked the question..."What is the likely hood of it spreading or returning if we leave it in him?"And the Doctors response to that was...

"Konner has a 10-20% chance of the cancer spreading or returning in a different area. But he also has that exact same chance if we were to take it out. Cancer has microscopic cells which you can not see. So even if you think you took it all out there might be some left over which could grow another tumor some place else in his body or spread."

Right now we have made the decision to watch it and have urine tests done every month and scans every 3 months for the 1st year. Then for the next 2 years do urine tests every 2 months with scans every 3-6 months. If something changes or his urine spikes then we know something is wrong and he will go through all tests again. And possibly start chemo again depending on the cause of the problem. We don't want to do another round of chemo cause although it shrunk the tumor it is also poisoning our baby. We also don't want his type of cancer to become immune to the chemo cause then that can make it more aggressive. This is the best thing for Konner.

Our other option would have been to remove the tumor (which is still deeply embedded into a nerve) and see how he does. This option though sounds better at first has its setbacks. If we cut that nerve it could cause him to loose function of his bowels, or urinary tract or possibly cause him to be paralyzed. All 3 of those don't sound ideal. and he would still have the 10-20% chance of the cancer returning. He would still have to have all the check ups and possibly more.

It has taken me awhile to write to you about this. I feel that our choice is right but at times struggle with the fact about leaving it alone. I know that he will be closely watched and if Kyle and I feel like anything is wrong we can ask for tests and they will do them. I know that Heavenly Father will watch over Konner. Konner has a lot of Angels in heaven watching over him. His brother Kade, 2 other angel baby brothers, my Dad, my cousin Ashley. So that is our choice and decision.

Thank You for your continued support and prayers...

Bracelets

Just Wanted to let everyone know that we have finally sent ALL the bracelet orders off. Thank You for your patience and hope you enjoy them!

Erin

The Results are in..................

Today Konner had an appointment to get his results from his scans. We started of with the usually access of the port. He got his blood drawn and it was sent to the lab. Within 10 minutes his nurse comes back and says he needs to have a blood transfusion cause his hemoglobin was at 8.8 not very good at all. So while we got that news we were waiting for the even bigger news. Before we went into the transfusion rooms Dr. Eshun came in to gave us the news. Konner's Tumor has shrunk 80%. So with that being said the chemo worked!!! He will not have to go through anymore Chemo as of now. He still has some chemo in his system so that could maybe shrink the tumor more and they are hoping that it will calcify. So we are going to talk with the general surgeon and see if it is possible to remove the tumor without damaging the nerve. Our options are to remove the tumor which could possibly damage the nerve and could cause him to be paralyzed or have an affect on his bowel. Or we can leave the tumor in and watch it carefully and see if it calcifies. Either way he has 10-20% chance of it returning. his Dr. said that he has a great outlook. So right now we are in the decision making part of the process.

 Konner now only has to continue taking Bactrim and can stop all other meds. If we decide to leave the tumor alone then Konner will go into the process of going to the clinic for monthly urine checks and every 3 months doing MRI, CT and MIBG scans. for the next year and then the next 2 years he will go every 2 months and then annually. Hopefully soon we can give you the news of Konner being classified as NED (No Evidence of Disease).

Thank You all for your Prayers And continued support. Little Konner is a strong guy and is making it through this hard time with your help. Thank You again.

Angels wings....

Please Pray for Little Caden Johnson's family tonight. I have been talking to Cadens mom and her little boy was very sick with a brain tumor. He has passed away today and my heart hurts for this family. This little boy was as old as little Konner. I know he is in a better place and he is no longer in any pain. Please pray that his family is comforted during this time. 

To Jessica: I am sorry for your loss. Even though we have only talked a few times through email, I feel like I've known you longer. And though I never met Caden he truly holds a special place in my heart. If there is anything you need, Im am here even just to talk. I will have you and your family in my prayers.  Lots of Prayers and Hugs of comfort your way. 

Scans...

So yesterday Konner went in for his CT, MRI and MIBG scans. They were successful and he was already waking up when we got into the room. They said he did great and everyone just loved seeing him. Its crazy when you walk into a nuc Med room (nuclear medicine) and everyone in there gets the biggest smile and says Oh Mr. Konner we missed you. Konner has definitely brought lot of smile to peoples faces. He is such a cute little man and is so happy. We find out Monday the results of all his scans so wish him luck. And please pray for good results.

Family Fun Day CANCELLED

Hey all,

The family fun day had to be cancelled. Sorry for the inconvenience. I will keep you updated if it is rescheduled. Thank you and have a lovely day!