Dustin is a 8 year old little boy who is nonverbal and has Autism. He is a silly boy. He loves all things Disney and will often be brought to laughter by his siblings or their tickles. Dustin isn’t your typical kiddo, he’s extraordinary.
On March 2, 2015, Dustin was also diagnosed with Leukemia. He lacked the ability to tell us what he was feeling. We noticed that he was limping off and on, and eventually, quit walking totally. That’s when we knew something wasn’t right.
Dustin has been through so much. He endured over three years of chemotherapy, 25+ spinal taps, surgeries for port placement and removal. His bone health is just awful. He has compression fractures the entire length of his spine.
Our family is still experiencing a lot of emotional distress, as well as financial ruin. This journey has taken all we’ve had to give and then some, in every single way you can imagine and more.
Dustin successfully completed chemotherapy treatment in May of 2018! He is currently living his best life – cancer and chemo free!!
Eli is a joy once you get to know him. He can be a bit shy at first. He loves to crack jokes and is a king at sarcasm. He has 3 loves and passions: hockey, hunting and fishing. Prior to diagnosis he was the top 2006 hockey player in the state. He plays for teams in 3 different states. He is always trying to get fishing or hunting for anything. He’s been doing all of these things since he was about 3.
In the summer of 2017, he seemed a bit more tired when skating then usual. He had some strange bruises that I noticed. Then, he came home from practice complaining that he just couldn’t skate – he was too tired. His sister noticed a rash on his temple. I am a nurse practitioner and immediately recognized it as petechiae. I started looking him over and noticed he had it in his mouth and ear as well. I took him to the clinic the next morning where we immediately were transferred to a children’s hospital.
Eli has undergone multiple bone marrow biopsies, spinal chemotherapy, oral and iv chemo therapy, multiple blood and platelet transfusions. Along with MRI’s, CT’s and multiple hospitalizations and ER visits. This will continue for 3 1/2 years.
The first year of treatment was horrendous. He had so much pain. His muscles wasted away and he couldn’t even get himself out of the bathtub. He couldn’t get up steps without assistance. He missed an entire year of school. He was so depressed and angry. Prior to diagnosis, Eli was extremely active. He played hockey for multiple teams. He was unable to do any of the things he enjoyed.
The closest ER he can go to is 1 hour 15 minutes away. His treating facility is 3 hours away. Once discharged from hospital we were traveling there at least twice weekly. Initially we had to miss a lot of work. He couldn’t be left alone. His therapy is also 1 hour 15 minutes away.
Nothing could be scheduled or planned in advance due to his treatment and the unknown. That is getting a little better. Honestly, I cried everyday for at least a year. I have gotten to once or twice a week now. My daughter feels a bit neglected as everything revolves around Eli. I know she doesn’t want to feel that way, but she is a kid and cannot help it. There seems to be more stress reactions within our family. We try to do as much as a family as we can as Eli is very high risk for relapse. If relapse happens his odds are not good. I truly feel this is eating us up from the inside, constant fear and anxiety for what could happen to him.
Paisley is amazing. She loves to sing and dance. Paisley loves to be outdoors playing with her brothers. She is very kind and spunky, and one heck of a fighter.
Paisley got attacked by a dog in March of 2017. I noticed that the bruising had gone away after a significant time, but I could still see the dogs jaw line on her leg. We were going into the doctor for her brother’s well visit and I asked for them to take a quick look. They decided to do a finger stick and within one minute had come into the room stating she was severely anemic and her WBC was extremely high. They were sending us off for more blood work and a chest X-ray. The next morning we got the call to come into the office and were told there were lymphoblastic spot on her blood smear. Our lives are forever changed.
Paisley has been through so much since this started. She had a g tube inserted due to not taking medicine orally. Her kidneys were starting to fail and she had to go through dialysis. We have had 4 extended hospital stays since she started treatment.
Our family has faced many obstacles along the way. Our lives revolve around how Paisley feels and how will she react to each moment. Vacations and daily activities all come after the assessment of how she is feeling. Paisley has 3 other brothers whom we have to help along the way, and let them know they are special too. It has been a financial, emotional challenge for all of us.
Martha was diagnosed with High Risk Lymphoblastic Leukemia in Jan 2017. The reason I took Martha to the doctor was fatigue. What I was expecting as low vitamin D ended up being ALL. I am so glad that my mother instinct made her that appointment.
We had a very rough road but I am excited to say we are just finishing treatment and have an appointment to remove her port in late June.
To some extent this diagnosis brought us closer but it has also caused a LOT of stress on my marriage, not to mention financially as well as we did not qualify for any disability.
We will be celebrating the END OF TREATMENT with a family trip to Florida and love the idea of photos that will capture this wonderful time for Martha and our family!
Before we went on our family vacation 2018 September…. Jayden had some bruising and Petechiae on his legs… after we can back from vacation the spots had moved to his belly… we took him to the pediatrician. I thought he had anemia, because it runs in the family on the maternal side…. but we were told to go to the emergency room immediately…. I knew something was not good.
When we went to the ER the labs took an extremely long time and I know when the labs take long that’s not a good sign either, I heard the phone ring and the nurse answer the phone to take the critical lab value.
The Dr. came in and asked me if we could go to the room next door. My stomach went into my throat and I immediately wanted to vomit. The Dr gave me the bad news, but I was between shock, disbelief and hysterical tears.
But they tried their best to stay positive and move fast. All the while Jayden was in the other room still upset about being poked from the IVs, and knew nothing about his cancer diagnosis.
After diagnosis we went immediately to the ICU and Jayden had pharesis to take out as many of the white blood cells as they could before they started the first round of chemo.
They told us that his white cell count was greater than 400,000…. we couldn’t start chemo until they were less than 50,000. So they did pharesis for two sessions similar to dialysis. Then they started chemo 2 days later.
The only symptoms he had was the abnormal bruising, and petechiae (red spots on his legs and belly) and I noticed he was a little more fatigued than normal and wasn’t eating as much.
Jayden’s cancer diagnosis has changed our family immensely. We are able to appreciate each other more. We value our quality time with each other and we enjoy spending time just snuggling, watching movies, eating and watching the boys spend time together. If anything it has made us a stronger family unit. Although horrible and traumatizing… there are so many resources that give Jayden and his brother opportunities they never before had, such as going to the Golden Knights Game, meeting all our favorite superheroes and experiencing events like this one and others.
Jayden is the strongest little boy I have ever met, he hates that he is going through but I always tell him he will be a fighter and stronger when this is all over and done with
Right around the time Kendall turned 5 she just wasn’t acting like herself. She’d been complaining her legs hurt, was having nose bleeds, and she was tired and taking naps again all of a sudden.
At her five year well child check, I voiced these concerns and the doctor noticed her liver was also enlarged. Eight days after she turned 5 she was diagnosed with Acute Lymphoblastic Leukemia.
Now that we’ve made it past the first month of induction, treatment has been going quite well. It has been difficult on her siblings for lots of reasons, but lately she’s been feeling better and has had more energy to play and do more with her younger brother and older sister.
The day we found out she has cancer was certainly the worst day of our lives. Since then we’ve slowly started to adjust to our new normal and we greatly value the time we’re home together and not hospitalized!
