Chasing a cure

SEELEY LAKE – "Well it is not cancer but it is diabetes," the doctor told Bekah and David Cahoon after their six-year-old son Chase was rushed to the emergency room June 18, 2018. "This is something he will have for the rest of his life. There is no cure. They are working on one and they might have one in his lifetime."

Chase's blood sugar was 618 (normal is 100) and he was in diabetic keto acidosis (DKA). He spent three days in the Pediatric ICU getting out of DKA while he and his parents learned how to take care of him. Now, a year and a half later, the Cahoon family is still learning how to manage diabetes but Chase is back to doing the things he loves.

According to the American Diabetes Association, Chase is among more than 1.25 million Americans that have Type 1 diabetes, an autoimmune disease in which the body attacks the beta cells in the pancreas preventing it from producing insulin. Insulin is a hormone made by the pancreas that allows the body to use sugar (glucose) from carbohydrates. Insulin helps keeps the body's blood sugar level from getting too high (hyperglycemia) or too low (hypoglycemia).

Since November is National Diabetes Month, the Cahoon family takes the opportunity to raise awareness and funding for this incurable disease. They look forward to celebrating World Diabetes Day, Nov. 14, the birthday of Frederick Banting who co-discovered insulin in 1922 alongside Charles Best.

"It is important to me that the world understands my child. I don't want him to feel responsible for this disease or like it is going to hold him back for any reason," said Bekah. "I want to build his self-esteem - you are a warrior, you are a champion. If any good has come from this, I see how strong of a boy we have raised and how incredible he is."

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The Cahoons noticed that Chase was not feeling well the week before Father's Day, 2018. Chase lost a lot of weight quickly. While they initially passed it off as a growth spurt, he wasn't getting any taller.

On Father's Day they took Chase golfing, something he and David enjoyed doing together. Usually he had enough energy to do at least nine holes but after one or two holes, Bekah said he was really tired, lethargic and was really thirsty and hungry.

When they gave him some water he started vomiting. They agreed to get him into the doctor Monday.

However, by 1 a.m., Chase had vomited 10 times.

"I said I'm not waiting until morning to take him to the doctor," said Bekah. "At the very least he needed fluids because he couldn't keep anything down, he is super dehydrated and we don't know what is going on."

On the way to the emergency room, Chase started complaining that his vision was blurry and he had to blink a lot.

At the hospital, the doctor did several tests including a blood test. The doctor told them Chase had diabetes.

"When they said diabetes my heart just sank," said Bekah. "Can't it be something temporary, something curable, something that they can fix?"

"I was scared because I knew my nana had it," said Chase about his grandmother. "I kept asking my mom and dad if I was going to be ok. They said yeah."

Bekah's mother Melissa Winters has type 1 diabetes. While Bekah saw her mother check her blood sugar and give herself shots and she knew what to do if Winters had low blood sugar, Bekah said her mother did a really good job of not letting it be something that affected her family growing up.

"But when it is my child it was completely different," said Bekah. "The first thing David said was I just want him to be able to do whatever he wants. I responded - I will make sure he can do whatever he wants to do."

Within 24 hours of receiving insulin, Chase's smile was back and Bekah said he felt so much better. But the information about how to manage diabetes was overwhelming.

The Cahoons were given the diabetes bible, a huge book that included everything they needed to know about how to manage diabetes. David and Bekah practiced giving each other shots before giving them to Chase. They met with many different professionals and learned that Chase exhibited many of the major warning signs including: rapid weight loss, increased thirst, frequent urination, wetting the bed all of the sudden, extreme hunger, mood changes, fatigue and weakness, blurred vision, vomiting and fruity smelling breath.

For Bekah, meeting with other families with diabetes was the most helpful for reassurance. Another mother told her that the diagnosis is the worst part and everything gets easier.

"That was really reassuring for me and she was right. That was the worst day and it has only gotten easier," said Bekah. "I personally coped by learning as much as I could about it, figuring out what he can do. Everyone was so reassuring that he can live pretty much a normal life and eat anything he wants to, you just have to give him insulin for it."

Chase said playing games with his dad really helped him cope while he was in the hospital. They also looked up NFL football players and other professional athletes that have diabetes.

When Chase returned home he felt better and he could do what he wanted to do including play sports. But it was really important their family and friends understood how to manage diabetes so Chase could spend time with them. They invited them over and taught them about the disease and how they can help Chase.

"We've had a lot of support and that has made a huge difference for us and Chase," said Bekah.

Before school started, Chase got a Dexcom G6 continuous glucose monitor that he wears on his arm. This displays his blood sugar on his pump, his iPod and through the Follow App on Bekah and David's phones.

"It is incredible," said Bekah. "I wouldn't be able to send him to school if I didn't have it."

Another thing the sensor allows is blood sugar monitoring at night. Before the sensor they would take turns waking up at 2 a.m. to check his blood sugar. Now with the sensor, their phones will beep if he is getting low and then they give him a fast-acting carb or sugar like applesauce or milk to raise his blood sugar.

"Chase describes [getting low] like he is falling asleep and he can't make it stop," said Bekah who added that if he is sleeping he can't wake up. "If it keeps going down he will eventually pass out and go into a coma. That is how diabetics can die as well as being in DKA for too long."

Chase carries a shot of glucagon, which is fast asking glucose that can be given if he is unconscious. There are a few people trained to administer it since there are several steps.

"It is a lifesaving thing and hopefully he will never have to use it," said Bekah.

On the first day of school, Bekah went into the classroom and told Chase's class that he was diagnosed with diabetes over the summer, what it meant and how they could help him.

"It was not a big deal. It just became a thing that they do and help with," said Bekah.

Chase said his friends help him when he isn't feeling good and help him up when he is low. Chase is especially thankful for his best friend Christian Hinchey, Tristan Palmer, his teacher Pattie Crum and secretary Suzie Teafoe who helps him with his insulin and lunch.

After six months of calculating the right amount of insulin based on what he was eating and administering himself shots, Chase got an insulin pump. The pump does the math for him and administers the correct amount of insulin for the number of carbohydrates he inputs. It will also suspend insulin if his blood sugar is low.

"The pancreas regulates your body for you. When it doesn't produce insulin, your brain becomes your pancreas and it is really hard to figure out how to perfectly regulate that," said Bekah who added that, in addition to carbohydrates, weather, emotions and activity level are just a few more things that affect blood sugar. "Something that you do one day and you have perfect numbers, the next day you will do the exact same thing and you will be on a roller coaster because the body responds differently."

Bekah emphasized that type 1 diabetes is different than type 2 diabetes, the most common diabetes accounting for 90-95 percent of all diabetes cases. With type 2 diabetes, the body is either resistant to the effects of insulin or it doesn't produce enough insulin to maintain normal glucose levels. While there is no cure for type 2 diabetes, losing weight, eating well and exercising can help manage the disease.

"For us it is a genetic thing," said Bekah. "It is an autoimmune disorder. There is no way to prevent or cure an autoimmune disorder. You get this and you just say this is our life now."

While the Cahoons didn't have to make too many changes to their diet because they were already eating fairly healthy, Bekah said they became more aware of what they ate.

"Super sugary stuff we just stay away from because it will just raise his blood sugar," said Bekah. "Insulin will eventually bring it down but he will feel like crud for a little while."

One of the biggest challenges facing all diabetics is expense for treatment. A vial of insulin costs $300. Chase usually only uses one but they get two so he doesn't run out. This is something he will always need, must be refrigerated and expires in a year.

For a typical family, it costs $1,500 per month for management which includes the pump, needles, 10-day sensors and everything else. This doesn't include doctors' visits every three months and labs. Bekah said thankfully they have great insurance.

"At this moment Chase hates diabetes and he wants to find a cure really bad. It is all pokes, it is all blood and feeling like crap all the time," said Bekah. "Chase talks about a cure all the time - he would love a cure. I would love a cure."

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The Cahoons feel raising awareness and money are the key to helping researchers find a cure. They put together a team and fundraised for the Junior Diabetes Research Foundation (JDRF) during the T1D Walk last April. They will be doing the three-mile walk again April 20, 2020 and will start looking for people to join their team.

"If people just want to donate, that is fantastic. If they want to walk we would love to have them," said Bekah.

Bekah also wants to be a part of pushing for legislation in Montana that would cap insulin prices like was recently done in Colorado.

"A child should not have to ration insulin. Someone should not have to worry about how much their life costs every month," said Bekah. "I feel like I need to be involved to help find a cure or help this disease be managed more easily."

If anyone would like to donate to research, the Cahoons recommend donating through JDRF. To join Cahoon's team for the T1D Walk, contact Bekah through Facebook or email her at rebekah.cahoon1217@gmail.com.

"Chase can do anything, he can eat anything and be a normal kid, it is just about planning and preparing," said Bekah. "We are not going to let diabetes hold him back."