Jayce is HILARIOUS. He is incredibly witty and very goofy. We watch a lot of YouTube, like Jimmy Kimmel’s old “Ew” episodes or his madlib episodes. We also watch a lot of “kids say/do the funniest things” videos. He loves music and LOVES to sing (anything from country, pop, hiphop, to worship music). He enjoys playing Nintendo switch, hide n go seek in the dark, and laser tag with the family. He also LOVES building legos or anything that gets his imagination going.
On August 31st of 2017, Jayce was diagnosed with T-Cell Acute Lymphoblastic Leukemia. In the time leading up to his diagnosis, he had begun complaining that his stomach hurt. At the beginning of football season, Jayce was always at the front of the pack when running laps, but slowly began creeping towards the back. He also began bruising and eventually lost his appetite (he is our EATER, so it was REALLY weird). He had his tonsils removed, but his lymph nodes were incredibly swollen. The ER doctor said to go to an allergist, but my wife had a feeling it wasn’t allergies. The night before the allergist appointment, she googled, “symptoms of 9 year old boy, bruising, loss of appetite, swollen lymph nodes” and the first result was “leukemia”. When she went to the allergist, he quickly knew that it wasn’t allergies. My wife said she and the allergist looked at each other and both knew what each other was thinking. He recommended going immediately to Texas Children’s Hospital. Jayce had moved to the back of the football pack because a cancerous mass growing from his right lymph node near his under arm had grown to cover half of his chest where he lost 1/2 of his breathing capacity. We spent the next 2 weeks in ICU while the mass shrunk small enough to continue treatment and testing.
We are currently on a 3 year journey, fighting along side him. Jayce has to get chemo, which is hard on everyone, and he receives lumbar punctures that can occasionally cause him to have severe lingering migraines. Cancer shook our lives upside down and around. We can’t participate in normal activities like going to the movies or grocery shopping. Jayce had to miss baseball and football season. We normally have to split up to get any task done; no school, no church, and work has been interrupted multiple times. Family trips are put on hold. Money is spent on parking, at-home child care, uncovered medical expenses instead of saving for vacations or for college. But, our children and our marriage are stronger because of it! Jayce even has said that he is glad he is the one who got cancer and not his other siblings. He said that he is tough enough to handle it and wouldn’t want his siblings to go through it.
Jayce has a fighter’s spirit. He has the best outlook on life. He is secure in what he looks like- even with no hair! He is not fearful. He is confident that he will get better. He is emotionally sound. Truly someone to look up to and a hero in our eyes!
Tisa is a vibrant bright 6 year old that was diagnosed with Type B Acute Lymphoblastic Leukemia on March 9th 2018. I took her to the hospital on March 8th for what I though was a kidney infection. For a couple months leading up to this, Tisa had been sick off and on. She did have the flu a month before and was experiencing body aches, which I thought were growing pains.
Tisa spent 10 days in the hospital at diagnosis. Then in April, spent 15 days for a bacterial infection. Treatment from then until delayed intensification was pretty smooth sailing. Her numbers have been crazy these last couple weeks and she is currently inpatient with fevers and viral infections.
I am a single mom and working is hard with a child with cancer but we make it. She is not afraid to tell anyone she has cancer! If she sees anyone looking at her for more than a few seconds she will speak up and say hello I’m Tisa and I have cancer. I have a cousin who has two children who are survivors of brain cancer. I had always told her I understand how you feel. Being a nurse and my dad passing away with cancer I thought I did! I definitely received a very big eye opener when Tisa was diagnosed. Even if you are there up front and center you still never know what it really feels like unless it’s your child.
Something I would like to get out there is please if you are walking in a store or out in public and you see a child with no hair, I ask you don’t stare and assume. If you really want to know ask because that child has a story to tell! He or she is a hero! No one should have to fight alone!
Violett is an absolute fire cracker. She always has been. She is sassy, and sweet and outgoing. She makes friends everywhere she goes. She bursts people’s hearts wide open. We frequently get told by professionals and people she encounters you just don’t see 3 year olds with personality like hers. Especially 3 year olds going through what she is. She brings sunshine and laughter to anyone’s day. On the flip side, she is also very head strong and knows what she wants, when she wants it. She likes to be in control.
In November of 2017, Violett was diagnosed with Acute Lymphoblastic Leukemia. She was a seemingly healthy child who was rarely sick but in the month leading up to her diagnosis she got an ear infection for the first time that did not clear up with antibiotics. They did blood work at our local children’s hospital and we got the shocking news that she probably had leukemia. We were then transferred to St. Jude that night and it was confirmed there the next day. Violett has had several different procedures under anesthesia since then, however, the most frequently thing she receives is iv chemo chemotherapy through her chest port and injection chemotherapy shots in her legs. These things are incredibly hard on her body; both chemos sometimes cause her to have trouble walking and be in pain.
Cancer has changed so many things about our lives. Depending on Violett’s anc, she may or may not be able to leave the house without a mask. We avoid places with large groups of people, she does not eat outside of the house or st jude (including icecream etc) . Her main limitation is her counts being low and us not being comfortable getting her out of the house. Her dad and I both strive to put her health absolutely first. She is our number one priority.
Violett is an all around a character and my favorite person in the world!
Hunter is active and dangerous, even in his quietness he is deep in thought. He is a climber like his favorite superhero Spider-Man. He loves art and dance and finds evocative emotional realities in nature, paintings and music. He loves the outdoors as much as the art gallery or a dance show. Hockey has kept him close to his brother. He has created worlds of escape in drawing and reading. He has found musical expression for the deep torments of his soul. He looks up to his big brother and is literally cracked up by his little sister.
Hunter was diagnosed with Leukemia in November of 2009. In the time leading up to his diagnosis he had general flu like symptoms, low grade fevers, was fussy, and experienced loss of appetite. Treatment has included years of oral chemo combinations, feeding tubes, invasive diagnostics and GI procedures, surgeries, scans, and tests. Hunter continues to require significant assistance with daily living as he suffers from chronic pain and continues to struggle with eating and drinking.
The stress and strain of cancer on two siblings, a marriage, finances, careers, and the physical, emotional and mental toll on all of us for almost 8 years is enormous. We lived in s bubble for almost 4 years. Hunter continues to have side effects from his treatment including hearing loss and chronic pain. We are resilient, but fragile. We struggled to survive but haven’t regained our life back. There are years and joys and experiences you simply can’t get back. We balance that with how grateful and lucky we are to have our son here with us. We have lost so many young friends to this horrible monsterous beast.
The journey has been a long haul. There have been so many ups and downs. We have made it through this far but have our share of wounds and scars. Hunter is wise beyond his 10 years with deep compassion and understanding. He is an advocate for childhood cancer and holds close to his heart the friends who have died, those who’ve journeyed along side him, and those who continue to fight. He believes his struggles have made him who he is, and opened him to a world and a side of himself he may never have know had it not been for his diagnosis.
Hunter is holding a gold number 5 for an incredibly special reason. This past April, Hunter reached that magical 5 years off treatment, 5 years cancer free! He is now officially a cancer survivour! We definitely have plenty deep scars, and some battle wounds which refuse to heal. However when I look through those breathtaking photos of our family, I am hit with the power and weight and the tremendous joy of the gift that we are all still here. together.
Holden was diagnosed with ALL B cell Burkitts Leukemia. He is actually only the 6th in the world to have this rare geno type of Leukemia. He first started getting sick in February while in wrestling tournaments. He had low grade fevers and was very tired. Holden had 6 months of intense high doses of chemotherapy. He was only home about 7-10 days a month.
The obstacles we overcame would be the family dynamic. He has two other brothers that were at home and needed care as well. We traveled 4 hours away for treatments due to the only in network provider, as well as the only facility we felt comfortable with to treat him.
Since Holden’s diagnosis, we have become a closer family and really take things in stride now. We have done more community activities and are starting a foundation in Holden’s name to help out other families in need. We hope to have this up and running by spring. I want to donate gas cards to families in need. That was a huge obstacle for us was the distance and cost of gas. We want to pay it forward.
Getting this opportunity for a photo shoot was wonderful and meant a lot to us.
Kathryn loves people. People, especially her family, can get her to smile more than anything. We’re lucky that she’s a happy and easy going baby which has made hospital life easier. Right now she loves walks in the hallways or outside so that she can see new things. She loves to point to everything she finds interesting.
It took about 2 months to finally get a diagnosis for Kathryn. She had a small growth on her labia that grew significantly over that time. We went to several doctors and finally had an MRI which indicated that it was cancerous. It’s not a typical presentation for leukemia. She was diagnosed when she was 7 1/2 months old.
Since Kathryn is so young, she has received all of her treatment while inpatient at the hospital. As of today she’s been hospitalized 147 days since her diagnosis. She has about a month and a half left of frontline treatment. After that point she will be in maintenance phase which will allow us to finally be at home.
Since Kathryn has been in the hospital for the last 6 months our family has had to live apart. We have 3 other children (3, 13 and 16) that have typical busy lives as kids. I spend weekdays at the hospital with Kathryn and my husband spends the weekends there. It’s been difficult to be away from my husband and kids so much to care for Kathryn. She loves the time she gets to spend with her siblings and we can’t wait until she can be home again.
