Nolan's Road to Recovery

                           My Relationship With Nolan

In 2012, my aunt gave birth to who I didn't know at the time would become my smallest best friend; my cousin, Nolan. I have never considered him to be my cousin. I have always said that he is my little brother in every way but biologically. I have grown to love him just as much as I love my own siblings and parents. We have grown very close in the short four years he has been alive, and I try to spend as much time with him and his two year old sister, Kiera, as I can. Nolan is a very imaginative little boy who loves swords, blasters, and ninja turtles. He loves to play hide and seek (even in places where there are literally no hiding spots), pretend fighting, and he loves to be chased around. He loves music, and he will sing along with you if he knows the words. He is also very smart, and he learns quickly. He is truly a light in my life and I love him more than anything.

                                            Nolan's Story

Nolan was born with a desmoid tumor. Desmoid tumors are tumors that arise from cells called fibroblasts. When fibroblast cells undergo mutations they can become cancerous and become desmoid tumors (also known as “aggressive fibromatosis”). These tumors are very rare. In the United States, approximately 900 people are diagnosed with desmoid tumors every year. This means that out of a million people approximately 2 – 4 people are diagnosed with desmoid tumors each year. Nolan was one of the unfortuante few to get this. At only a year old, he had to have surgery to try and remove the tumor. It was only the size of a cherry at the time. Not too long after that, it grew back, and it grew back faster and larger than before. They tried chemotherapy on him in small doses for a year, and it did nothing. The tumor eventually grew to be four pounds.

In July 2016, Nolan and his parents had to travel from our home in Ohio all the way to Texas to see a specialist. They decided to put him through another surgery to hopefully remove the tumor for good. We were all very nervous, because the doctors couldn't say for sure what the tumor was attached to, and they wouldnt know until the surgery. By the grace of God, it was only attatched to his abdomen, as opposed to someting vital like an artery or organ that they would not be able to remove. Nolan had his abdomen removed, and they replaced it with supportive mesh. They also removed his belly button. They had to stay there for three weeks after his surgery. The first few days were extremely hard  and he had a hard time walking and using the restroom. But somehow, when he came to visit me a week or so after they came back from Texas, he was playing with me and running around like nothing had happened. He was doing extremely well, which I was thrilled to see to say the least. Nolan has learned to adapt to his situation, and is aware of what has happened.Recently, Nolan has also developed Raynaud's Syndrome, which he aquired from chemotherapy. Rayanud's is basically where an interruption of blood flow to the fingers, toes, nose, and/or ears occurs, causing a spasm in the blood vessels of these areas. Typically, the affected area turns white, then blue, then bright red over the course of the attack. There can be associated tingling, swelling, or painful throbbing. The attacks can last from minutes to hours. Living in Ohio makes it tough; because of the cold, his fingers, ears and toes get affected very easily and quickly. He has to wear gloves and a hat when he comes over and wants to go in my basement, and we have to take him upstairs quite frequntly to warm him up by the fire. He is very good about it, but this is just another inconvenient challenge that he has to face.

                                         Recent Update

Just this past month, they had to go back to Texas for his checkup appointment. They discovered another growth in his abdomen area and it has already grown to be an inch wide. It has not been confirmed that it is the desmoid tumor growing back, but it is not good news. They are going to have to travel back there in a few weeks to get an MRI and discuss the options. Since there is no known treatment, they will just have to keep playing it by ear with what happens. Right now he is doing well, and I am praying that it stays this way.

                                How You Will Be Helping

These generous donations will help Nolan and his family cover all of their medical expenses, traveling expenses, and overall daily needs. They are going through a very rough time right now and I would love to be able to surprise them with everyone's donations and support. They are some of the best people I know, and I know that they will be able to get through this, especially with all of our support. Even if you are not able to give much, anything would be a blessing, and if you are not able to donate at this time, please keep Nolan and his family (Amanda, Mike, and Kiera) in your prayers.

Thank you all for reading and thank you in advance for any donations you make.