Dalton is an introvert but highly intelligent and sarcastic.
In the summer of 2015, he had a side ache and dry cough. We went to urgent care, were sent to ER, and had a leukemia diagnosis within two hours. We were checked into our local Children’s hospital four hours from when we walked into urgent care. He had a large mass on his chest and an extremely high white blood count.
Dalton has been under treatment for almost three years with seven months of treatment remaining. He has had numerous side effects including kidney stones and a full anaphylactic reaction. I am a single parent with no financial or emotional support from his dad. I had to quit my job for a year to care for him and have worked part time for the last year.
Dalton really takes things in stride but his diagnosis has affected his whole high school career. He has been more withdrawn and hasn’t attended school dances and much more. I have essentially put everything on hold while we focus on getting through this. He is a fighter. He has never given up hope throughout this whole journey.
David is very outgoing and energetic. He is so sweet and manages to smile and be happy no matter what he is going through. He is very smart for his age, and is so polite. He loves Daniel tiger, and Batman. He loves to help take care of his baby brother, even changing the diapers. He’s a total momma’s boy and animal lover.
In early 2016, he was severely anemic and not responding to the iron supplements, which led to further bloodwork. Looking back, he had symptoms we didn’t realize were because of the cancer like decreased appetite and bruising easily. He was officially diagnosed on February 16th, 2016 with mixed phenotype acute leukemia.
He has been through port placement surgery, multiple skin biopsies, bone marrow biopsies, and lumbar punctures. Not to mention chemo, treatment for fungal and gut infections. He has received blood and platelet transfusions and still receives chemo today.
We continue to face financial hardship due to me having to be available to go to his appointments every 2 weeks, the gas it takes to drive an hour to get to the appointments, etc.
Cancer has made us cherish our time together so much now and inspires us to make more time to get out and enjoy life.
Everlee is very outgoing. She loves to dance, sing, play music, do karate but her absolute love in life, is horse back riding and horses. She rides every Saturday and it has become a part of her healing. She will drag herself to the barn every week just because it makes her feel so good. She talks to the horses, snuggles them, rides, grooms, whispers her secrets, and loves the calm they bring to her. It is breathe taking to watch.
We had taken Everlee to urgent care on a Sunday because we thought she had pneumonia. The doctor agreed and gave her antibiotics. After 3 days of antibiotics she was getting worse. Her skin turned a pale grey color, her finger nail beds turned blue, and she had huge black circles under her eyes. We took her to the ER at our local hospital and after a simple blood test, we were given the news of Leukemia.
Our daughter is traumatized after two years of chemotherapy. She has an intense fear of medical procedures. Everything that needs to happen to her needs to be explained in great detail so she can prepare herself. She has had one surgery, two bone marrow biopsies, hundreds of dose of chemo, 20+ lumbar punctures, numerous daily oral medications and has been hospitalized twice due to infections. Our family struggles are getting better. I was off work for 20 months but we managed to keep our home and try to keep our lives as normal as possible for the sake of our family.
Childhood cancer has changed us in the most profound way possible. It was devastating and although I wish it was just a bad nightmare, after two years of going through treatment and the end is near, I can look back and see how thankful I am for this experience. It’s brought all of my friends and family together, it has taught me patience, strength, and courage. I feel we have all become better people and appreciate every moment we have with each other.
Everlee has had many struggles along this journey, but she never stops smiling. Even through her tears, she finds a way to laugh. She is an old soul, and sometimes I go to her for comfort and reassurance that we will get through this.
Ryan is the most loving kid you’ll ever meet. He’s a fighter and so brave. He’s been though so much and her never complains.
Early in 2017, he was experiencing swollen lymph nodes in his neck, pain all over his body, paleness and weight loss. He was diagnosed with Acute Lymphoblastic Leukemia.
He has had numerous spinal taps and rounds of chemo. We are so happy to say that in the spring of this year, he celebrated one year in remission!
Jayse is AMAZING!!! He has the most kindest soul I have ever encountered. Jayse is definitely a people person, and loves to be the center of attention whenever he can, which isn’t too hard with the head full of red hair! After you meet Jayse it doesn’t take long to find out he is ALL BOY. He loves showing off his muscles, playing in the dirt, building Legos and watching dirt bike videos on YouTube. He definitely looks up to his Dad and will do whatever it takes to be cool like him.
Last year, Jayse woke up with high fever of 104. This happened numerous times between February-June. The week of diagnosis his body was so weak that he couldn’t get out of bed or walk. I continued to take him to his Dr and the children’s hospital ER. We finally got lucky and went on a day that a pathologist was working that was able to see the blast in his blood work and labs and he was diagnosed with Acute Lymphoblastic Leukemia.
Jayse is on the normal Protocol treatment of 2 1/2 years for ALL. He has had numerous blood transfusions, platelet transfusions, and inpatient hospital stays lasting as long as 9 days inpatient, due to neutropenia and low ANC.
My 2 year old was born with Down Syndrome which also comes with its own health issues. It has been very hard on my family to balance life with the health issues of both Jayse and his brother. We live with family for the emotional and financial support. It is very difficult to live a normal life with childhood leukemia, down syndrome and a typical 7 year old (Jayse’s big sister).
Decklin loves Legos, Super Heroes, Lego Ninjago, playing outside, cats, and our pool. He is a very sweet child (when he is not on steroids). He loves to quote TV shows, which he memorizes CRAZY well. This is mainly the function of his autism. He LOVES his oldest brother. Not really sure how we are gonna handle that one when Ethan leaves for college in the fall. He enjoys wrestling and jumping on the trampoline with his brothers.
A few days before we were diagnosed, Decklin began crawling around the house telling us his legs felt bad. We thought he was just being a little silly. Next, he had a fever and pain in his side. I assumed it was appendicitis. It was in, fact, his liver working in overdrive trying to rid his body of all the immature white cells. We went to the ED and were “informally” diagnosed by the ED doctor with leukemia. He was transported Oakland Kaiser that night and started treatment the next day. His official diagnosis of ALL B-cell High Risk Leukemia came on April 21, 2015. We were diagnosed with High Functioning ASD the month before as well.
Decklin has missed a bunch of school due to his diagnosis and that is something that we are constantly fighting against. His autism presents an additional difficulty when it comes to both treatment and school.
The toughest part of the treatment for everyone was in the beginning when Dex was in liver failure. We almost lost him at that point and his liver numbers are something we are always watching, even today. That was really scary.
We are currently in the maintenance phase of treatment where Dex gets monthly infusions of chemo and a monthly antibiotic. He also gets spinal chemo every third month where he has to be put under. We also take a daily oral chemo and takes steroids for five days every month.
Having cancer has limited what our family can do and where we can go. Other than school, we have tried to limit the amount of time Decklin spends around other people due to lowered immunity. He has had so many pokes to check his blood levels, we have lost count.
I would like to think that this diagnosis has helped the other family members become much more compassionate toward others with illness and their brother’s plight. We will not know for sure how this has effected the entire family for years. My oldest son spent his entire High School career with cancer as a constant companion. He graduates this June. Decklin was diagnosed on my second son’s 12th birthday. He calls it “the sad day”. My third son lives in the same room with Decklin full time and has had to watch all the “good” things Decklin has received due to the diagnosis. Mainly legos…
My husband and I are very cancer weary but feel very blessed that we have such wonderful insurance and that I am able to stay at home full time with Dex. I am just grateful that I can be his full time caregiver and be there for him when he needs me.
