Kinsley was diagnosed two days after her 2nd birthday with Wilms Tumor. She was not symptomatic (aside from constipation which she had always struggled with). On her 2nd birthday, I was sliding her off of my lap and felt the lump under her rib cage. We saw her general practitioner for an appointment two days later and that evening we were admitted to the hospital. After CT scans, ultrasounds, and blood work were then diagnosed.
Kinsley’s case is a bit rare and required lots of research by her oncologist and surgeon teams. On her right kidney was the mass, and on her left kidney were lesions that were growing. That is what put her as a stage 5 because it’s bilateral. Typically Wilm’s Tumor only affects one kidney.
We immediately began chemo and after 12 weeks, we went in to have the mass on her right kidney and the surrounding area of that kidney removed. We stayed for 8 days and she came home with the drain attached as her surgery site was still draining. They weren’t happy with how that kidney was draining urine to her bladder so we went in to have a stint put in to reroute the urine properly.
At that point, they saw that her kidney was not viable and needed to come out. We then went back in and had the remainder of her kidney removed. She then underwent three more strong, spaced out chemo treatments. We will get a scan of her remaining kidney in 3 weeks when they will measure the remaining lesions. Every 3 months for the next 2 years we will alternate CT scans and ultrasounds to continually monitor those lesions to make sure they don’t develop into tumors. These next two years will be a bit nerve-racking as far as hoping for the lesions to shrink/go away and not grow but doctors feel once we clear that two-year mark chances of relapse/growth are slim.
Overall, we’ve maintained as much normalcy as possible for her. Due to the chest port where her blood is drawn and chemo is administered, she cannot get her chest wet so bath time has become a challenge as Kinsley loves water. We flush her port daily and change her port dressing every three days.
We’ve kept her quarantined during this COVID pandemic so she hasn’t been anywhere aside from doctor appointments and hospital stays since April. COVID was rough for us as only one parent was allowed at all appointments and procedures.
Kinsley has been extremely strong throughout this experience. She has surprised her doctors, nurses, and surgeons with her quick recovery and big smiles through some of her worst days. She is our hero!
Westin is SO funny and goofy! He loves being outside and trying to be like his big brother.
I took Westin (10 months) to the Sanford ER Sunday night July 28th, 2019 as he hadn’t been sleeping well so woke up at 11 pm to give him medicine. I went to change his diaper and his right abdomen area was rock hard and he had slightly labored breathing. After the ultrasound, CT scan, X-ray, and other tests we were moved to inpatient on the Pediatric floor. Westin had what they thought to be a Wilms tumor. Dustin arrived after getting Jackson (6 yrs old) to daycare. We met with the Pediatric Oncology team Monday morning July 29th to schedule surgery. Westin had to be intubated having another CT scan and other tests that afternoon to see more in-depth what they were dealing with. He was such a trooper! He had surgery Tuesday afternoon July 30th to remove the tumor along with his right kidney. All went well! The specimens were sent to Mayo pathology to figure out what stage and if treatment was needed. He spent a week in the hospital.
On Friday, August 9th, 2019 we received the phone call that Westin did have Wilms Tumor and it was Stage 1. On Monday, August 12th we were informed that Westin would in fact have to complete 22 weeks of chemotherapy. He had his port placement and received two different chemo medications throughout his 22-week treatment plan. Some of the struggles were keeping the family balance – work balance – financial balance with all of the appointments, treatments and unexpected hospital stays.
Westin’s cancer diagnosis has changed our family life in many ways. Living with the constant stress that he could get sick again but trying to be happy that he is done with treatment and has gotten the news that the cancer is gone.
We couldn’t have gone through this journey without the help from our friends, family and community!
Lilly is kind and sweet. She is sensitive to others’ feelings and can be very funny. At first, she comes across as very shy but after a few minutes with her and if you start talking about animals of any kind, you’ll have her grinning ear to ear. She loves all animals but is especially fond of cats. She is always looking for more information on animals and is a wealth of knowledge on many various species. Lilly also loves music. She plays the piano and the ukelele. Having music in her life was a big part of keeping her going and motivated during her treatments.
In March of 2019, she was tired a lot, her color was pale and she had lost weight. Lilly’s tumor ruptured in gym class when she was 9 years old. She came home from school vomiting and with stomach pain. At first, we thought it was a flu bug. The next day we took her into the emergency room at our local hospital. They didn’t have the diagnostic equipment or specialists to treat her and suspected she had ruptured her spleen. They gave her antinausea medication and rushed her by ambulance to the nearest children’s hospital.
She was in so much pain she couldn’t move. Her bowels shut down and intestinal fluid started backing up into her stomach. After a CT scan, they found a large mass on her horseshoe kidneys. We didn’t know she had horseshoe kidneys before this. Two days later we were flown by air ambulance to a larger children’s hospital for a biopsy of the mass. Two weeks later she was diagnosed with cancer but they thought it was a renal sarcoma.
Lilly was hospitalized for 29 days following her rupture. Chemotherapy was started in an attempt to shrink a 22cm tumor on her horseshoe kidneys. In June, her tumor and half of her horseshoe kidney was removed. It was after testing the tumor that they discovered it was a Wilms Tumor. She had 7 fractions of radiation and 25 rounds of chemotherapy.
Facing this as a family made us stronger. We take nothing for granted and are thankful for everything we have. Especially that we have each other.
Declan is always happy, and no matter what he is always a brave little guy. He will tell you he isn’t sick and that he is okay. Declan’s favorite things are his sister, dad and mom, and paw patrol.
My son Declan was diagnosed with stage three kidney cancer before turning two, August of 2019 to be exact. Our journey has been scary and had a lot of tears and long hospital stays.
Declan kept vomiting randomly a lot. What I thought was him getting car sick, then led a doctor to think it was a virus. I noticed his “virus” wasn’t going away. I kept taking Declan to a hospital time and time again only for this doctor to basically say I was crazy and that this sickness would pass…little did she know he had a tumor bigger than a softball on his left kidney.
While my sister was watching him, I got a call from my sister telling me to come back quickly. My son was unresponsive. She called 911 and I beat the ambulance there. I rushed my son to an emergency room downtown in Baltimore. The doctors didn’t know what to think. Until one man wanted to do an ultrasound. Because of him, we picked up the huge tumor that an x-ray previously didn’t show.
We headed into surgery that next morning. Declan lost his entire left kidney. The surgeon informed me that this was kidney cancer, and his tumor had spillage twice. So we needed chemotherapy and radiation. Thankfully, it did not spread from what the pathology report showed.
As a parent, never give up. If you feel something is truly off with your child, keep pushing for answers.
Our family has missed out on a lot of time together. The kids have missed out on the most together. This journey has taught me to never give up. My now two-year-old has given me the greatest gift of all, strength.
Piper is like a surprise toy! Never know which one you’ll get! But her laugh and her dimples are the best thing on the planet! She loves unicorns and dinosaurs.
In the fall of 2019, Piper was severely constipated, or so I thought. We had regular issues with this and then she got extremely sick and was throwing up non stop. I took her to the ER, hoping for a flush out and to come home. X-rays revealed she was not backed up as originally thought, so a CT scan was done. That’s where they found a football-sized tumor that had completely taken over her right kidney.
I am a single mother of 4 kids and we frequently have long stays in the hospital (over 45 days!) with Piper. It’s always hard finding care for the other children.
Her treatment plan has consisted of chemotherapy, surgery, and radiation so far. We struggle with neutropenia and our family being separated. Some days are better than others.
Blaise is quiet and shy when he’s uncomfortable, but can quickly become the center of attention with his dry humor. He makes himself laugh with his own silliness. He also thinks his littlest brother is incredibly funny. He loves legos, video games, football, playing with his friends, and antagonizing his brothers.
On Saturday, 5/4/19, Blaise was outside playing with friends when he had sudden stomach pain and grew very pale. His brothers had been sick so we assumed he had caught what they had. On 5/6/19 as we drove to the pharmacy for medication, every bump caused him pain. At that point, we decided to take him to be seen at an urgent care where we were advised to go to the ER for possible appendicitis imaging. The CT revealed a 9cm tumor on his left kidney. The tumor had ruptured causing the pain.
Blaise’s official diagnosis date is 5/9/19, the day his tumor and kidney were removed. The pathology reported no signs of metastasis also making this the date he went into remission.
The doctors chose to wait for the bleeding to stop before doing a radical nephrectomy on 5/9/19. He was given a 22 week treatment plan for chemo. Since the bleeding was confined to the renal sack, radiation was not required.
Blaise has grown up a lot through this process and it has helped him find his voice. It has required that he be less timid and speak up for himself. We are very proud of the young man he is growing into as a result of this horrible diagnosis.
