Hello to all-
We met with the doctors here in Green Bay last Thursday, After long discussion and learning that St.Jude would accept Colton we learned that the protocol that they use for the hyploidentical transplant ( the chemo region prior to transplant) is not a good idea to put colton through this. The chemo regimen that St. Jude uses is different then what Madison uses and unfortunately the chemo region that St. Jude uses is what nearly killed Colton last year with his liver VOD.
The insurance company has approved Madison for the transplant but at the out of network benefits so we are responsible for an usual and customary charges that may come up. Which means basically on top of our 12,000 out of pocket it could be $1,000 to $500,000 and beyond. So until we try all the appeals process and go through that, our only option is to just continue on with chemo and wait. I only pray that the wait is ok for our family and Colton is able to find peace.
It makes me sad that our only option for a potential cure has been ripped out of our hands because of insurance and money. There is only 2 hospitals in the united states that tries this transplant and its the only potential option for a cure. so now our family has to for the time being accept that fact that we have lost this battle and we may lose our son too. Please pray for our family, they tell us with chemo alone it will not cure Colton's disease it will only buy time. I pray that we will get comfort and peace.
I apologize for not updating this site sooner. Things have been a little hectic around here. But... we have some exciting news!!! Jeff and Tara are expecting their third baby! Tara is about 13 weeks along. Although this clearly isn't the greatest time, we truly believe that God has blessed them with this baby. So what do you think? Boy or Girl? Thank you for supporting and taking this journey with Jeff and Tara. They greatly appreciate it... in fact, we ALL appreciate it! <3 Bridget
Finally the whole family had a nice relaxing weekend! We really did nothing but watch football together! It was nice to just sit at home for a bit. Camden and Colton have been playing all morning! Just got done with some breakfast before we get our labs done. Colton keeps asking me when the packers play again that kid just loves Aaron Rodgers and the packers. Colton has had a restful week so far a bit tired but is enjoying playing games with mom. Camden is up to no good trying to walk! I don't know if I'm ready for that!! We go back for round four of chemo on October 27 th. Hope all is well with everyone!!! Miss you all!!!!
Yesterday was a big day for Colton - he got to meet Tim Tebow of the Denver Broncos! Tara had to explain to Colton that Tim was like "Aaron Rodgers, but for a different team." LOL! What a great guy to go up and visit the pediatric oncology floor. Colton is back home now and has finished his 3rd round of chemo. Keep fightin' buddy~! Bridget
Today Colton had a visitor! Her name was Mrs. Gia! Colton's third round of chemo has been pushed back to tomorrow. When Tara took him in for his stem cell rescue yesterday, they were only able to collect 1/2 of what they needed. In the end they will be harvesting over 6 million stem cells for when he gets his high-dose chemo. So far things are pretty steady - so let's hope it stays that way! Hope everyone is doing well :) <3 Bridget
Received some excellent news today! Colton got his bone marrow tests back and they show no traces of cancer! He goes in for his third round chemo next Tuesday. It's amazing how much progress he has made with only 2 rounds. It seems like yesterday that Tara called me and said the cancer has spread to his marrow. All your prayers - and obviously the medicine - are working! Thanks everyone for the support. Oh - check out Colton's Halloween costume. Pretty sweet, huh? <3 Bridget
Received some great news today... Colton's CT scan came back and it looks like his body is responding to chemo! The tumors are shrinking :) The attached picture is the official report - if you're into all that medical stuff. Me - I don't understand most of it. But the results are good! Thanks you so much for your prayers and support. Keep them coming! *Bridget
There a couple of things I would like to share with everyone. The first being that if you are on Facebook, please "like" LaFontaine Hyundai and for every like they receive they will donate $1 towards Childhood Cancer Research. The second thing I wanted to share was a video I came across. I found it to be quite beautiful and wanted to share it with everyone else. Hope everyone is doing well! http://www.youtube.com/watch?v=nK9CSie_3gU
Hello! We came home from the hospital Wednesday night just in time to pick up Grandma Debbie from the airport. While at the hospital we had
2 blood transfusions and 2 platelet
transfusios. We have been doing well
ever since. Colton had his labs drawn
today and our numbers were within range so we get to relax this weekend
and just be home!!! Colton goes in Tuesday for a CT scan and Thursday for a stem cell rescue since he will
need those stem cells in January (when he gets his high dose chemo.)
He is doing great at home and trying
to walk a little more everyday to
build up his strength in his legs. We are so blessed with friends and family
who love us so much I can't tell you
how appreciative I am of the support.
Thank you to all.
Well - Tara is back in the hospital with Colton. The Dr. called and said they received his bloodwork and it showed he had little to no white blood cell count. Good catch Doc! Tara and Aunt Jessi had to take him back in so he wasn't exposed and at risk of catching anything. He received a blood transfusion last night so hopefully our count will boost up a bit! On a lighter note - Hyundai donated $100,000 to the Children's Hospital of Colorado and Colton got to be a part of the ceremony! All the cancer patients and family got a nice gift basket (Tara didn't tell me what was in it.) Thank you Hyundai for your generosity! *Bridget
Sorry it has taken me so long to update this site. Jeff and Tara have been busy trying to transition to life back home and I've been doing the same! Our little Colton got to go home this past Thursday! He got through his second round of chemotherapy and will be staying at home in Colorado Spring until he starts his third round. Jeff had to leave on a work trip for about a week but Auntie Jessi flew out to help! The days have mostly consumed by playing. Colton has been helping Tara and Jessi cook dinner at night. His favorite of course, is steak and chicken nuggets. Such a silly kid. Uncle Tanner and Aunt Sloan had a chance to stop over and see everyone. Uncle Tanner even helped Colton take a bath! As of right now Colton still has his port in his chest which is where they will administer the chemotherapy, and he also has a small catheter on his leg so that Tara can give him injections without having to poke him. I'll try my best to keep everyone updated! I just bought myself a new iPad so I can Face chat with the Coltonmeister. Hope everyone is doing well. Thank you for all the support and prayers for this wonderful family!
I'm a lion.... Hear my roar!
Yesterday was a great day for our little buddy! They finally took his chest tube out, which is great because he told us numerous times, "I don't like this thing." Also, he got a surprise visit from the Denver Bronco cheerleaders! We start his second round of chemo today so hopefully we'll be able to go home Thursday. This little guy has a busy week! Oh- and Grandma Jan is here visiting us as well! Thank you so much for all your prayers and support.
Today was a big day for Colton. He finally got to eat! The doctors think his chest tube may be able to come out in the next day or two. They're small steps... But we'll take it! Thank you for the love and prayers. Go Pack!
Playing with marshmallow shooters today! Helping Colton with his lung capacity. Check out the story below. Video to come!
Pat, who then worked in management at a lumberyard, found herself at the counter with a bag of miniature marshmallows, a one-foot length of half-inch PVC, and her younger daughter as a target. In the instant that Pat took a breath and pelted Kelsey with a marshmallow, the two of them knew how to bring joy to kids who were isolated and fighting to live. They experimented with a chop saw, a propane torch, sandpaper and more PVC. Before long, hospital staff members carried the Bohmans' prototype, dubbed a marshmallow launcher, in scrubs' pockets. Doctors, nurses and their young patients bombarded each other during gleeful marshmallow battles. A supervising physician pointed out that the launchers, much more fun than a standard spirometer, augmented respiratory therapy, ""¦and the laughing helps, too." Pat and Kelsey knew they would not turn back; laughter in a cancer treatment center is a precious commodity.
I don't know how beneficial this will be... But I did a mini tour of the hospital. I know how it feels to be far away and I thought maybe this would help people understand what Tara and Jeff see almost every day. Warning: Don't watch if you get motion sick. There are two parts. Part one is downstairs atrium and part two is Coltons floor, 7 (oncology and blood disease.
Uncle T decided to shave is head in support of Colton. What a guy! Thank you everyone for all your support for Tara and Jeff. It is truly amazing!
Daddy getting his head shaved. Colton has a twin!
Camden giving his big brother a kiss! Brotherly love :)
Colton's spirits are up the last couple of days, we've went for wagon rides painted pictures and drew!! Bridget and mom got out for a bit and did a little shopping but for the most part have been keeping Colton company! He still has his chest tube in and it will remain in for the week as far as we know. He can't eat yet either so we take shifts eating outside the room just to be fair. Hopefully he will be able to eat Tuesday but we will see! We are having lots of fun playing. Uncle Tim bought Colton a Buzz Light Year, who is now his new favorite toy (see inset pic).
Colton's hair has begun to fall out which makes us sad. But this is something we have prepared ourselves for. We keep saying Jeff's hair is next but we'll see. The clippers have mysteriously disappeared....
"If children have the ability to ignore all odds and percentages, then maybe we can all learn from them. When you think about it, what other choice is there but to hope? We have two options, medically and emotionally: give up, or fight like hell." ~Lance Armstrong
Today Mommy, Colton and Aunt Bridget got to go outside for a bit. Colton wanted to play cars. While outside Colton looked up in the sky and started waving. Tara asked who he was waving to and he said, "to the man up there waving at me." Then he started smiling. Something tells us someone is watching over our buddy!!
Thank you again for all your love and support!
"May the God of hope fill you with all joy and peace as you trust in Him, so that you may overflow with hope by the power of the Holy Spirit." -Romans 15:13
For the life of me I cannot figure out how to rotate this video! This is Colton and Camden playing together yesterday. Thought I would share it with you all! I'm going to look further into it - and hopefully record some videos right side up. Sorry for the kink in the neck ;)
Today Colton got a new bed! He received a top of the line air bed to prevent bed sores. They removed his NG tube out of his nose. He will now have to take meds like a big boy - through his mouth! Colton played with Daddy and Uncle Tim while momma, grandma and Bridget ran some errands. Tonight Colton is planning on shaving Daddy's head!! Uncle Tim may join in as well. Pictures to come! Thank you so much for your love and support. We are overwhelmed with emotion by the number of people who have come to help us. Your kindness in itself is a miracle.
Jeff and Tara
Colton felt well enough to go for a wagon ride with mommy, Uncle Tim and Camden. Such a trooper! You can't see it well but he has his very own red Radio Flyer wagon. Ridin' in style!
Aunt Bridget thought it would be cool to dress up and look like one of the nurses... Now we just need a stethascope and a name badge.
Our new "do." What a handsome young man!
Well colton put in a pretty good day yesterday, he was on cpap for most of the day. I drove Jeff back to the springs to go back to work so that he can save some of his vacation time for things to come down the road. When I got back our nurse Meghan was going to draw labs and I asked her what was going on. She informed me that she felt that Colton wasn't acting himself and that he was saying some non sense things to her and in a lot of pain. All the labs came back great so we rushed him down for a head ct and a chest xray. The x ray came back great. The ct we are still waiting on. They also put him on an EEG machine last night that monitors brain activity The neurologist will come in today to tell us the results of that and also hopefullyne dermatologist to look at this awful rash he has. He was a little ansty last night but after he got soe pain medication seemed to do great. He's very alert this morning andbreading books with papa hopefully all his test come back great today and we may be able to move out of the picu. He wasn't on cpap at all last night they just had him on a oxygen mask at a rate of 2 liters. His respiratory rate all night stayed in the 30,s to 40,s and everything seems to be jiving this morning so I'm hopeful!!! Thank you to everyone who reads about Colton we really appreciate the support. Thank you.
Colton and Mommy heading into surgery... such a brave little boy. "Courageous Colton" is what everyone is calling him!
Colton and his cookie! So big for such a little boy!
Well today was a day, Colton had a rough night last night taking medication and holding them down, mommy was up with him a lot. He also was put on 2 liters of oxygen to help him keep his oxygen level up. They have been giving him lots of lasix to try to get his water retention down. This afternoon he went down for his migb scan to look to see where exactly the cancer is in his body, after what was suppose to be an hour and half procedure the oncologist came out to inform us that there had been some complications in his scan. Colton had thrown up in the middle of his scan causing them to have to intubate him. They aren't actually sure if he aspirated any of the vomit, and actually they didn't see anything when they suctioned but just to be safe they kept the tube in and he is now back in the pediatric ICU on a ventilator. He also has a plural effusion on his left side which he may have to get drained tomorrow but we will see what his images look like and go from there. Will update more as we get it. Hope all is well and thank you for your thoughts ad prayers. Tara and Jeff
Colton, was a very healthy 2 1/2 year old little boy, On Thursday August 11th, we notcied Colton was not feeling well. We went to children's memorial hospital on Monday August 15th for fluids. After about an hour the Dr. came back again to let us know that Colton was going to be flown by helicopter to Children's hospital in Aurora Colorado because his lab values were showing he was in Kidney failure. (Creatinine and potassium were at a 9). Colton received one round of dialysis and then was brought down that night for a Cat-scan. then we would have to wait till morning for results.
As the PICU doctors made rounds they came and updated us on Colton's prognosis, he had 2 large masses in his belly and a bunch of small ones and he would have to go into surgery that day to also get stints into his ureters (kidneys) to try to regain kidney function back. When he went into surgery they took a small piece of the mass to biopsy to tell us what kind of cancer we are dealing with...
Colton was diagnosed with a cancer called neauroblastoma that is either stage 3 or stage 4 cancer. We were told that his chances of recovery are at a 60%-70%. Colton will be receiving several rounds of chemotherapy and we are looking at a very long road ahead of us. We ask for all the prayers we can get and if possible, a donation of any amount to help with our pending hospital bills.