Meet the Vogel Family
Mar 16, 2022
When asked what he wants Eagles fans to know about him, five-year-old Jayce Vogel pauses for a moment and says, “I want them to know that I had cancer, but I was brave and strong. I had chemo, but after I was done I got to go to the playground at the park.” That park, by the way, was Central Park. Jayce also wants to tell other kids with cancer that “they can be brave and strong too.” Words from a little boy wiser than his years. Words from a little boy, who has spent way too much time in hospitals, and far too little time playing in the park.
Jayce, is the youngest of the six children to parents Bryan and Kristi Vogel, high school sweethearts who married and started a family. Bryan is a police officer and Kristi was a school teacher. According to Bryan, “ When we started having a family, we had two children (Rylee and Matt), and it was pretty much the standard white picket fence story. Everything was great. We soon realized that we were not yet done with our family. Kristi and I had been interested in adoption for a while. We went to visit an agency to speak with them and learn more about the process. We met with them on Tuesday and by the next week we had brought home our first adopted child; our third child; our son, Scott. Rylee and Matt were so excited to have Scott as their little brother. As Scott grew, time revealed that he had some unique challenges but we all learned as a family; we learned together how to get things done and make it work.”
“Through the adoption process, we found that we had a heart for the children that might be medically high risk. We trusted our faith that the right child would come to us with the needs for which we could help”, says Kristi. Because Scott fit in well with the family, Kristi and Bryan felt their family wasn’t yet complete and brought home Johannah. Kristi continues, “We knew before we brought her home that she had kidney disease. She had a bit of a rough start, having two surgeries before she was two years old, but now she is doing well.” She has one kidney and much to her dislike, can’t compete in any sort of sport that might have contact; but other than that, she is a healthy young lady.
Bryan and Kristi felt that they had more love to give and soon Morgan found her way to them. According to Kristi, “when Morgan was born we knew she would have some challenges, and the first two years were full of them for us all. She is a ball of fire and hilarious.” Morgan suffers from Eosinophilic Esophagitis, which makes her diet challenging. If it comes from the ground she can eat it, but most everything else is not possible, which makes her mad because like any young kid, she wants to eat donuts. Morgan‘s medical needs were definitely a labor of love, but one they gladly took on. Kristi and Bryan felt their family was now full and that they were done adopting children.
Then along came Jayce. The state called and asked the Vogels if they would like to foster Morgan’s-half-brother. Kristi and Bryan laugh when they say, “We thought we were good at five; however, because of Morgan we now have six.” They were asked about fostering Jayce on Sunday evening, and by Monday morning they had agreed to become parents again. “We knew he would end up staying with us”, said Kristi. “It was a super easy adjustment making him a new member of our family. He was an easy kid.” Six months into the foster relationship is where Jayce’s story really starts.
The Vogels were at a routine wellness check-up with Jayce. They told the doctor that they had noticed a little bruise under his eye. The doctor wasn’t too concerned and said it should probably heal. When it switched sides a couple of weeks later, they headed back to the doctor. This time the doctor, not the same doctor as the previous visit, had previous experience with pediatric cancer patients and took one look at Jayce and told them she was fairly sure he had cancer.
Bryan says they will never forget the day he was diagnosed. “The doctor said that the cancer she was thinking of was neuroblastoma, which is a cancer that starts in the adrenal glands and progresses from there. The doctor sent us to Children’s Hospital.” Through no fault of the Vogel’s or the doctor that had referred them, things started out in a less than desirable way at Children’s Hospital. Finally, when things were all sorted, Jayce got the scans he needed. Their worst fear was confirmed, he had cancer. Bryan remembers, “Within a number of hours, we went from learning our son might have cancer, to having a diagnosis that confirmed he had cancer. We began treatment within two weeks of his diagnosis and he was seven months old at the time. When we started the chemo treatments it was crazy how much we were in and out of the hospital. Anyone who has been through chemo knows how incredibly brutal it is. The chemo makes you feel bad. You might be in and out of the hospital because of the chemo and then just about the time you start to feel good, it is time for chemo again. Jayce was still nonverbal at this time, but the bonding that we had during this time with Jayce was amazing”.
They took out the main tumor and the rest of the disease they could get. Neuroblastoma is an unusual type of cancer. If the cancer cells mature (with respect to the stage of the disease, not the age of the patient) they can become non-cancerous. Mature disease is good; the cells are benign. With this particular cancer, it isn’t necessary to get all the cancer cells removed when the tumor is removed. The ones that are left behind will hopefully be killed during chemotherapy or tricked into maturing. Chemotherapy continued from June through January, when it was determined that Jayce’s little body was not responding as well as doctors would have expected. Kristi and Bryan began an exhaustive search to find the best place in the world to treat this type of cancer when the patient is not responding to treatment. The search led them to Memorial Sloan Kettering (MSK) in New York City, but because Jayce had been off treatment for some time, it was urgent by the time they found Sloan.
Getting insurance approval to seek treatment in NYC was a challenge.“ We went through rejection after rejection and even had to get some Senators involved to help us get approval to save his life. All the while we were nervous because his cancer was still growing. Finally, by the grace of God, we were approved and went to NYC to start the MSK protocol. Their protocol required 18 days of treatment a month, every month. We started in May and went through the following November. Jayce started having some really strange symptoms during this time, so unfortunately Ronald McDonald House, just wasn’t an option for us. We had to rent a 300 sq. foot apartment. Jayce stayed in that apartment more than he stayed at home. We believe that apartment aided in his recovery because he had a place [outside of the hospital] to lay his head. That tiny little apartment was our safe haven. It was just a place where Jayce could come and crash. He was so sick, we were really worried”, says Kristi describing that time of their life.
Because Jayce was having horrible diarrhea, the doctors determined that the treatments were too hard on him and had to stop chemotherapy. Immunotherapy continued and the disease started to stabilize, but the cancer never went away. It was stable and holding steady. Stable and no growth is good. Jayce finished out MSK’s protocol and returned home to Colorado. Today, Jayce still has the same amount of disease, but it is thought to be mature disease or benign. He has to have scans fairly frequently. Neuroblastoma patients get rated after a body scan with a score between 1 and 3. To be considered free of disease, a patient needs to have a score of 0 or maybe a 1. Jayce’s score ranges from a 14 to a 16.
As if this beautiful little blond boy had not been dealt enough, Bryan and Kristi learned that as a result of neuroblastoma, Jayce had Vasoactive Intestinal Peptide (“VIP”), which causes the soft muscles of the intestines to relax. VIP is usually caused by a tumor, and when the tumor is removed the VIP stops. Because Jayce’s cancer is metastatic, there is no tumor to remove. Kids that have VIP can usually take medication that will block the production of that VIP hormone, but for Jayce, that is not an option. He is the only known person in the world with active VIP that is not treatable. Some kids have VIP and don’t survive. Some can take medication and are ok. Jayce is an anomaly; no one is sure how to help him. Kristi shares that they have searched high and low, but “…I can’t even tell you what our hope is because right now we don’t know what our hope might be.”
They have found a doctor in Iowa who deals with VIP and she has worked with their doctors here to see if something would work. They have medication that they are trying. Jayce gets an injection every night in his leg. He isn’t gaining weight, but he isn’t losing weight which is a great thing. The medicine allows him to attend pre-school. According to his dad (who tried the injection to see how it felt and was surprised at how painful it actually was) every night Jayce says he doesn’t want a shot, yet every night he is a trooper and gets one.
Kristi and Bryan feel that each time their faith has called them to do something, it has worked out somehow. They thought their family was complete at five children, yet when they felt strongly about the need to adopt a child with cancer, they did. When a child is sick, it is natural that parents will do whatever they can to save the child’s life. “We have always been strong in our faith, but it has certainly grown during this journey. There are times when we get stretched and we look at each other and feel like we can’t stretch anymore,” says Bryan, “it is almost like that faithfulness begets more faithfulness.”
Jayce’s parents feel that Jayce was given this gift of being alive right now, and every time they let him interact and experience things it is incredible and not their job to shield him from everything.
It is hard not to agree with Jayce’s parents that he is a special, special boy. His mom says, “… there is a fight in him. He is going to do big things, and his story is already affecting people. He has a toughness that he doesn’t even know.”
It has been said that children who get cancer are special children. The Vogels agree. Bryan says that “the wit and tenacity of the children who have cancer is something else.”
This amazing family says that they don’t have conversations about things in life being fair. In their house that doesn’t go very far, because no one in their household deserved any of the cards they have been dealt. Kristi and Bryan agree that “there is no point in feeling sorry for ourselves because this is the lot that we have. This is the family that we are. It has been hard; there have been many hard times, but it is knowing that we will come out on the other side, that helps get us through”
Together as a family, they feel that they are able to look at a lot of things in life and just be glad that they are here. With the particular neuroblastoma Jayce has, the relapse rate is 80%. If a survivor can get past the first five years without a relapse, it is a huge accomplishment. Jayce has not shown active disease, nor has his disease moved for two years.
As far as the Pot of Gold game goes, Jayce is most excited about dropping the puck, and maybe asking a hockey player if he might well, you know, make a big hit (*wink). Ask Bryan and Kristi how they feel about being the beneficiaries of the Pot of Gold Game, and they say, “being the recipients of this Pot of Gold game is pretty humbling. It is hard sometimes to say thank you. We could never repay this kindness. Given the statistics we were given, Jayce is blessed and lucky to be alive. We are insanely blessed that we have six children. Any day we have breath in our lungs is a good day. None of us are promised anything. We get to live today, and make an impact today. We want our children to make a positive impact in the world. We hope that our story, and the fact that Jayce is alive when he probably shouldn’t be, will give other neuroblastoma patients hope. We feel like we are the blessed ones to have these amazing, special kids. They are just beautiful souls.”
