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121 donations

Many of you know Colton's story and the generosity, compassion, and love that you have given has been nothing short of amazing.

It has given my family us in ways that I never imagined. For all of you that donated, prayed, sent good thoughts, or shared his story. Thank you, thank you from the bottom of our hearts.

Cancer has had an incredible effect on my family as I am sure it does on all family's that are forced to deal with it and all the challenges in presents.

Our overall perspective on life has changed in big ways, the things that we thought were important that no longer are, having a better understanding on what the real purpose of having cancer come into our lives, a new appreciation in our obligation to take in every moment...The list goes on and on. I'm uncertain if this is the format, but we thought it might be therapeutic for us as well as others who have traveled this road to hear individual perspectives from people that know and love Colton. The opportunity to get to know Colton in a different ways and the effect he has had on us all.

Please know that is not our intent to brag, but to share with you how special he is, how many people he has touched, how much he means to us all, and our never ending commitment for him to continue to do just that in this world.
Please take a minute to read our the first post by Colton's Cousin Katie at the very end of this page. "A Cousin's Perspective"

We will continue to update with our other family members writing there perspective. As mentioned it is our hope that this will help not only us, but others who may be experiencing similar challenges with there emotions while going down this path all the while getting to know Colton better..

We are at new stage of this journey now, and it has brought new challenges. We are not asking for additional finacial help from those that have all ready done so much. We are asking for those to send prayers, thoughts, and to share Colton's story if you are comfortable in doing so.

Again, please read our updates with our family perspective letters,(bottom of the page). Thank you again for all that you have done.

For those of you that have never meet Colton here some the details of our journey and our need to reach out.

As a Dad, a husband, and a provider, this is a very humbling place to be. To have to ask for help at all, let alone to ask from people that we don't know is very difficult. I intended and needed to ask for help weeks ago, but again,so hard to do.
Cancer has taught us all so many lessons. Just couple I mention here relevant to this fundraiser. One of the biggest and also the hardest to accept is that the destruction cancer leaves behind both financially and emotionally, it is bigger than just me or my family, in fact, I think it's bigger than most family's that are forced to enter the ring with cancer.
The crazy unpredictable paths, the different hospitals, in our case, the different states, the missed work, the list goes on. We needed support from outside sources to survive and stay in this fight and we were very fortunate to get it.

There was a time before cancer where my wife and I were in a position to give. The second lesson I'm going to mention is that we found it much easier for us to give than to be on the receiving end of it. Having said that I think that with most parents, there are no limits to what we will do for kids. In our case that includes asking you to read our story, share our story, pray if you do, send good thoughts if you you don't, if you can help with a donation please know that it's accepted with heart felt gratitude.

This will act as an update(near the bottom) to those that know Colton and summary of Colton's story for those that don't.

Colton was diagnosed with ALL Leukemia on October 29, 2011, 3 days after his 3rd birthday.

Colton started his path attempting to get better with the traditional call out for ALL Leukemia, this included chemo, many nights in the hospital away from home,and more drugs than we can remember. He had a 80% chance of this terrible disease not coming back. We had 6 months to live life without the fears of him waking in the middle of the night because he was sick, him not being able to attend school, the fear of another day off work, what that meant to our bills because it was a "hospital" day, and the biggest fear that we never discussed out loud, was him being taken from us to this monster called cancer. That fear too slowly dissipated with the rest.

We enjoyed things like being able to travel to see his sissy try out for a big time cheer team in Detroit, stoping to see his Auntie, Uncle, and Cuzzy's in Illinois along the way, visits to the zoo, visits to his Aunties pool close to home to swim with his Cuzzy's, even caught a Blake Shelton concert in Little Rock where he got to meet Blake and meet his new best friend Amanda.

Things I think all parents would treasure along with the memories that come with.

The six months went by fast and at a routine hospital visit, Colton's blood worked showed the cancer had returned. We buckled back in for a new fight, a fight we didn't want, a fight where the odds were not in our favor, but when you are forced to fight, you fight, particularly for your kids..
Two more months of very aggressive chemo. Our Doc's used a hybreed road map that was having some success in Europe. The side effects where worse this time, more nights in the hospital than we can count,more visits to the hospital when we weren't admitted than we want to remember.

Colton was not responding and we were running out of options. The fear and helplessness you feel is barley controllable. Our job as parents as we know it is to protect our kids. I use this analogy often.

We all have are things in life that we have no tolerance for. As Dad and a Dad with a child with special needs,its a bully, better known as a coward in my eyes.

This disease is like be forced to watch a bully beat up my son and I'm not allowed to help, to do nothing, this is so conflicting with our job to protect our loved ones.

The anxiety that comes with it is a huge undertaking to manage.

Thankfully some peace came from Colton's amazing team of Docs led by Dr Graham. They were all looking for options throughout the country.

In those efforts they reached out to the National Instute Of Health (NIH) in Washington DC, one of the top leading Cancer research centers in the country.

They had a study where they were extracting T-cells from a cancer patient, re-engineering the T-cells to essentially become cancer fighters. It was a new study, but the results to date were looking positive. With the help of our team we were afforded an opportunity to participate. We literally had two days notice and were on a plane.

We were full of new fears, new Docs, new nurses, and a study that we didn't know much about. As all parents would be we remained committed to trying to help our son beat this disease.

The finacial impact of the days off work, the expenses of all that not covered by insurance and all that goes with traveling, were taking there toll. With the help of friends and family a fundraiser was started and as mentioned the compassion poured in.

It allowed to not only continue to fight, but to focus our attention on Colton opposed to the stresses that come with meeting the finacial obligations.

The first step in DC was to go through a weeks worth of test that included many uncomfortable days for Colton. Part of these test were to see if Colton had a sufficient amount of cells to extract. Do to all the chemo his counts were not recovered and the cells they needed to extract were not there at the levels they needed to be.

We waited it out for another week and still didn't have enough. In the meantime the cancer levels were rising.
The doctors at NIH approached us with alternative study with a drug called Moxi. It to was relatively new. It was being used to drop cancer levels and act as bridge to afford patients the opportunity to be eligible for a bone marrow transplant if successful.

We were running out of time and after weighing the risk and possible rewards we decided to participate.

In doing so there were new challenges. The pharmaceutical company for this drug never had a child with down syndrome participate in there study and to put it bluntly, I don't think they wanted to find out if it could negatively effect there success. After our Doctors at NIH pleaded our case and reminded them of the fact the there was nothing in Colton's extensive medical records that would indicate it shouldn't participate, they accepted him..

This was a bigger victory for myself and my family than just being able to participate.

The countless nights that those that loved him laid awake wondering why!! Why Colton, so young, so much life ahead, so much to give back, why does his life have to be so hard.. It reminded us of a conversation we had with Colton's aunt. She had said that just maybe this cancer and all that is happing to Colton is bigger than us. Bigger than those that love him. Maybe, Colton was chosen to build paths for the children that follow, children with cancer, children with Down syndrome, so the next child won't have to fight to participate in a study, or the family without the finacial means wouldn't be excluded because they couldn't pay.

It may sound ridiculous to some, but for us it allowed us to lay our head down at night with some sense of piece when nothing else made any sense and more importantly it allowed us to no longer be complete victims of this disease, to take back some control of our emotions.

This came with an additional eight week commitment to DC where Mom would stay "as always" with Colton,Dad,sister, and aunts would come back in fourth from around the country to support the efforts.

Colton started this study with 40% level of disease and after just one cycle went down to 2%.

Colton was able to accomplish what we hoped, he put a major pharmaceutical company's fears to rest. He was able to achieve remission and was now was ready for a bone marrow transplant .

We returned to Denver and moved ahead with the transplant. Again new challenges. We have since concluded that anything new is fearful when your dealing with this disease.
Not just the medical unknown, but of course financial as well. We had spent so much time away from home and fell so far behind.
There was a lot of preparation involved just before the transplant that would have Colton undergo outrageous amounts of radiation and extremely intense chemotherapy again . He handled everything with such strength and trusted us that we were making the right decisions to get him better .
Prior to all this this day to day grind this routine was all Colton knew, he really didn't have the intellectual ability to comprehend, he was to young.
This actually benefitted us. We as parents emotionalize everything with our kids. With him not doing that he set a really high and positive standard day to day. Again his Aunt reminded us, that we have to be doing at least as good as Colton. This perspective made you smile when he smiled, made you get out of bed when you rather not.
This strength served us well going into transplant.
Colton completed the transplant process with success, we were taking things one day at a time and allowing Colton to heal and regain the full function of a healthy,strong and cancer free marrow. After many weeks in the hospital we were allowed to progress on to out patient that would require frequent visits each week. The visits showed Colton was making great progress and meeting every mile stone set, we were counting the days post transplant. Each day getting a little more confident, sleeping with a little less fear and just as we were preparing to remove the central line that had been placed just prior to transplant, we received news that his cancer had returned.
On September 30th, our world was turned upside down again . Not only were we in disbelief, but his doctors were equally shocked. How could this be? He was doing everything they asked, responding the way they had hoped.
Any parent that has been down this road even one time knows how devastating it is to hear the words " your child has cancer ". And we've now heard it for a third time.
Our doctors were already putting the wheels into motion to allow Colton to have another shot at the same study we tried for at the NIH just 9 months earlier. Our medical team reached out to the participating clinics around the country. We were turned down by two major participates. One because our in-ability to pay(this study's are generally not covered by insurance) the second facility shot us down because his new marrow didn't meet there post transplant time criteria.
Our primary Doctor had left Children's after 20 plus years to pursue a promotion overseeing another leading cancer treatment center in Atlanta Georgia. We have been so fortunate to have him in addition to many other brilliant minded Doctors watching Colton's case closely.
Atlanta had just recently got approval from both the federal government and Novartis the pharmaceutical company heading the study for there clinic to participate in the Car-T therapy program.
Though it was again not covered by insurance, we were given essentially a million dollar gift that was arranged through our team with grants and other charitable dollars.
We signed a 15 year contract with the study witch includes committing to bringing Colton back to Atlanta several times over the next year as well as the years that follow.
Though we were fortunate enough to have the study itself paid for, we are responsible for all other expenses that come with the commitment. Including, air,housing,food, transportation, etc...
Colton will be the first patient to ever participate here in Atlanta and of course with him havering Down Syndrom, we again choose to believe that he is molding a path for others not only with Cancer, but for children with Down Syndrome.
Again, within a few days we were getting back on a plane heading to Children Health Care Of Atlanta at Emory Universty.
Praying that this time Colton would have enough good T-cells to harvest and then engineer.
We would arrive in Atlanta and each day we were there, we would run blood work to see if his the ALC was meeting the studies criteria, (this is all the white cells combined and a small portion of t-cels that were needed).In addition we would continue to go through all the testing procedures to qualify. Each day the numbers increased and we kept moving forward with tests, as Colton got closer to meeting the criteria we were required to do a new placement of yet another central line to accommodate this extraction process .
More surgery for Colton. We were there nine days, but accomplished what we needed.
An abundant amount of cells were extracted and now ready to be engineered. The cells were sent off to the University Of Pennsylvania and we were on to the next objective.
This was to get the cancer levels down enough to make room for the new cells that would take 4-6 weeks to make .
We then returned to Denver and started attacking the cancer levels that we were forced to ignore in our efforts to preserve the cells that were needed to extract.
With that came some different challenges. Calling out enough chemotherapy for Colton to bring the cancer levels dramatically down and still keep him as healthy as possible to remain eligible to participate in the study.
This was probably the most difficult 6 weeks we had ever gone through.
His body had been beat up for so long it was more sensitive to chemotherapy then ever.
Somehow our boy managed to fight though it again and get cancer levels in check. These successes brought the risk of the known side effects down for when we would received the new re-engineered cells.
We waited anxiously for the phone call from Atlanta telling us they were ready for us to return for the procedure and that the University was successful in there efforts to re-program Colton's cells.
That phone call came on December 14th, and Colton and Mom were on a plane back to Georgia two days latter.
Now we are here, away from home again . These amazing cells would be re-infused after one last small round of chemotherapy. If there is such a thing.This was to make as much room as possible for the new cells to get into the fight.
The infusion happened on Thursday the 17th of December and now we sit and wait.
This fight has been long as those of you know who have read to this point. We are remaining hopeful that this is a punch that cancer doesn't see coming, a punch that will once and for all get these disease out of our sons, brothers,nephews, cousins body.
While Colton and Mom are sitting in the hospital we all are watching his blood counts daily and pray these cells do their job. We pray that we can manage the known side effects and kept Colton safe.
The questions that now come from Colton are different and harder to answer.
He is older, he is more capable of understanding. He ask his Momma, "what is wrong with me", he knows far to much about medicine, and about hospitals.
This journey has been emotionally exhausting, we will not quit, we will not waver until Colton is better.
The effects leave us somewhat of shell of who you used to be, but as most would,we march on with one thing in mind. We're doing this to save our sons life .
We uprooted our entire family and life, we will spend Christmas here and are perfectly ok with that. If our son gets better, we would spend every Christmas left in exchange for his health.
We are ever so mindful that our purpose has become more than getting Colton better, that he was chosen for a reason to walk this path and to make it even a little more manageable the for the next family. Not just one family,but hopefully many families in the very same spot we are in.
Please pray for our son, donate if you can, share his story if you are comfortable in doing so. From what little we know about fundraising, we think our success will come from the amount of people we can reach.

"A Cousins Perspective"
There are so many different dynamics in a family. Parents, grandparents, children, cousins, brothers, sisters, friends, mentors, students, the possibilities are endless. So often, we assume the role you play in a family is directly correlated to your age. If you are the oldest you’re a caretaker, a role model, and a teacher. The younger, of course, takes on the opposite reverse role. Children learn their greatest lessons from the older members of the family. However, the paramount teacher in our family is one of the smallest, Colton.
​I am Colton’s cousin, Kaite. I, like so many in the world, have a special relationship with Colton. I waited in the waiting room with my sister, Cassidy, when he was born. And I'll tell you, he took his sweet time. It was like he knew he would be a game changer. There has never been a moment of his existence that he was not nourishing change and growth in other people.
​I could re-tell you guys what Colton has been through so early in life, but what I am going to focus on is what Colton embodies. The prospect of positive change. In a few short years Colton has been the catalyst for positive change in so many people, including myself. He is the most authentic of good souls; he loves everyone unconditionally and pure. His hugs are so coveted because the love he gives is so genuine. Colton helps people love openly free from expectations and conditions. Colton will love you for exactly who you are, you're dark qualities and you're brightest qualities at your very best and at your worst.
For us, his own journey has highlighted the goodness of humanity. Lately, the world has often been a very scary and sad place. The kindness that Colton brings out in others is a reminder that people are good and loving. Our family has been blessed with that goodness.
Colton helps us to be humble. Our family is humbled by the amount of help we have received. So many people have helped in so many different ways, and there are not enough words to describe how thankful we are.
Colton breaks down barriers. People are prone to quickly label and subsequently limit others on perceived abilities and judgements. Colton would be labeled with Downs-syndrome, and cancer. However Those aren’t labels or limits that he lets define him. Colton would define himself as an amazing putter, and ice cream connoisseur,a dazzling talk show host, and a hell of a dance machine. Colton inspires all of us to rise above our own limits.
Colton is truly strong because he instills courage and strength in others. Watching Brad and Kim is evident of this. Together they stay strong for their child and for each other. With your help, our small family has formed a powerful community of support and strength. To climb a mountain, you just keep going even if another mountain appears.
In Mahayana Buddhism, there is a special kind of person called a Bodhisattva. A Bodhisattva is a person who has the opportunity to reach Nirvana (enlightenment) and instead,selflessly chooses to be reincarnated in order to help all other souls to learn and reach their own potential. I learned of this philosophy right before Colton’s second relapse. We had always questioned, “why"Colton? What is he supposed to learn from this challenge?” Upon learning about the Bodhisattva, it became clear of the great lessons we can all learn from our young. His kind and gentle soul is here to help all of us.
Today, Colton will get the infusion for the CAR T therapy. This is a treatment that, if successful, will make the world of difference not just for Colton and our family, but for many others battling cancer. Again, Colton helping others. Colton will fight the fight to make it easier for those who follow a similar treatment path? When Colton wins his own personal fight, we will work together to help other kids and families fight this same fight. Colton shows us the main lesson of life, which is to help and love each other every day, in anyway we can.
First, our family would like to thank everyone who has donated, shared, and stuck with us. Our gratitude is ineffable. Second, I ask you to continue to share with us our journey. And third, I ask you to keep Colton in your thoughts today. The power of collective energy, prayers, thoughts, mediation, whatever you may call it, is the most powerful thing we have as connected souls.

Katie McDuffee
Colton's Cousin

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