Nolan loves to laugh and is the life of the party. He loves Cocomelon and dancing to music is his favorite. He is the sweetest child and an absolute joy.
Nolan was diagnosed with Wilms Tumor five days after his first birthday on February 17th, 2022. Prior to his diagnosis, Nolan had an enlarged belly. He was seen by our pediatrician for it when he was 9 months old and she dismissed our concerns. We took him back for his one-year check-up and he was sent straight to Phoenix children’s for images which is where his mom received the news alone due to Covid restrictions.
Nolan has had too many treatments and procedures to list. He lost his kidney, ended up with chylous ascites and was on life support. He also experienced liver failure because of chemo and was on life support a second time. He has had months of chemo, and damage to most of his vital organs. He now has malrotated intestines and will be having another major surgery later this month. There have been lots of struggles having spent 76 days inpatient this year and weekly hours at the hospital. The financial and emotional impact of all of this has been huge. Additionally, Nolan faces a lifetime of complications from having one kidney and also potentially from the damage from the Chemo.
Cancer has changed our entire life but we want to believe it’s changed for the better. Being part of the childhood cancer community has literally been one of the greatest honors of our lives. We have seen so much goodness in our community and through the amazing staff at Phoenix children’s. We experienced so much hope through the process and have now joined the parent advisory board at Phoenix Children’s. my wife also leads a parent prayer and support group at Phoenix Children’s every Wednesday. Giving back as a result of all the goodness we have experienced has become part of our family’s purpose.
Nolan is a walking miracle. He has made it through so many complications this year and we are grateful to have this time in our lives captured.
Keoni is the sweetest, bravest girl around. She is very sassy and loves to be a princess, her favorite movie is Frozen. She loves to put on makeup and paint her nails. She also loves to dance!
Keoni was diagnosed with Wilms Tumor in March of 2022. We were out of town in Phoenix visiting family and she became sick. She was released at first, then wasn’t getting better so we returned to Banner Hospital in Phoenix. They ran tests and the next day removed her kidney due to a tumor. Keno’s treatment has involved a lot of travel and time away from home but it’s almost over as she recently received her last round of chemo. We have upcoming scans that will hopefully show she will no longer need treatment. Throughout this process, Keoni has been the strongest & bravest girl. Even when she feels sick, she is still smiling.
Keoni has received treatment at Rady’s Children’s Hospital in San Diego. She received chemotherapy and radiation in April-November. There were a few times that she had a fever and had to be taken to our nearest hospital in Yuma, Arizona. One of the ER visits resulted in Keoni being flown by helicopter from Yuma to Rady’s Children’s Hospital per her oncologist’s orders. Keoni needed a blood transfusion – she was better within a few days and released. She is so positive and brave, at first she was scared, but now she says she wants to fly in a helicopter again.
Her cancer diagnosis has changed our lives dramatically. She has a great prognosis, and God willing has a great life ahead of her. Keoni is currently a foster child. I’m her great grandmother, and although I’ve been in her life since she was a baby, I became her legal guardian at the beginning of this year. So, even before the tumor, Keoni has dealt with so much but she has a village of people around her that love and support her, and she will get through this much stronger.
Lielle is a feisty character. She is hilarious and makes everyone laugh. She loves unicorns and princesses.
Lielle was diagnosed with Wilms Tumor this past June. Before her diagnosis, she complained of strep throat-like symptoms such as belly pain and she had low-grade fevers. I noticed a lump on her abdomen that I wasn’t sure was there before. We had her checked out by a doctor and they sent us to the ER right away. Had her right kidney was removed that week, along with the tumor.
Along with her kidney and tumor removal, Lielle has had 13 rounds of chemo and has an MRI and CT scan coming up soon. After her scans, we can remove her port and schedule a ring ceremony to celebrate the end of treatment.
Lielle’s cancer diagnosis and treatment have taken a toll on all of us. It is the hardest thing we have ever been through.
Lielle is a true fighter. She is our 4th child and was always naturally strong in character, which has definitely paid off during this challenging time.
Maja (pronounced Maya) is a very strong-willed, opinionated little 2-year-old. She is a fighter and all the doctors, nurses and hospital staff say she’s a better patient than most older kids and adults and are always impressed with her. She likes to do things on her own as much as she can. She absolutely loves playing with her brother, he makes her so happy and we are so blessed they have each other. Her brother always makes her laugh. With an older brother, she prefers to play with him, with cars, trucks, and trains, over dolls. She loves to dance and sing too.
Maja was diagnosed with Wilms Tumor on January 27th, 2022. As a mother, I knew something wasn’t right a couple of weeks after her birth but the pediatrician always just said that it was colic. She was a very fussy and unhappy baby. As she got older her unhappiness turned into unwarranted random tantrums. Now we know she was trying to tell us something wasn’t right – 2 to 3 weeks before the diagnosis, she really started to not feel good. The week before, she didn’t want to walk and just wanted to lay on me and sleep. We saw a couple of doctors that week before one finally sent her for an ultrasound on 1/27 and that was the day they discovered her tumor. It had taken over her whole kidney, which was 3 times the size of a normal kidney and it had ruptured putting resulting in stage 3 cancer. The same day while being admitted to the hospital for cancer, her body went into shock, and she was diagnosed with end-stage renal disease.
Maja has had both kidneys removed, 25 rounds of chemo, and is on hemodialysis 4 days a week. She has also endured 7 days of radiation to her entire abdomen. She has had many surgeries as well (HD catheter, PD catheter, chemo port, 2 nephrectomies, and a couple of PICC lines) and will have many more in the future.Â
Maja is on a strict renal diet where she has a daily restriction on how much sodium, potassium, and phosphorus she can have. In addition, she has a strict daily fluid limit of 500mls. She is not able to go swimming, take a bath or shower, or run through a sprinkler because she is not supposed to get her hemodialysis catheter wet. It makes summertime hard because we’d have to sneak off so our son could do fun water stuff while she stays home.
The biggest struggle for our family is trying to juggle all her treatment visits along with having a 4-year-old at home. We have been blessed to have my mom who has been able to stay with our 4-year-old while Maja is at treatment so that dad could keep working. Also, I, the mother, had to stop working so that I could take her to all her treatments and procedures. We haven’t spent time with many family or friends to make sure Maja stays healthy and we can get through her treatment safely. We continue to mask, even our 4-year-old at school. As a parent, we sometimes feel like her little brother is missing out on the fun but thankfully at his age, he doesn’t know this yet. However, it has made him and Maja close because when she’s not getting treatment, they are together playing.
We as parents are just so impressed with her. For all that she is going through she is such a strong little girl.
Sydney is so strong. You’d never know that she’s fighting cancer. She’s so full of personality and spunk. She loves bubbles. She loves Blue’s Clues and right now she’s obsessed with her colors.
Sydney was diagnosed with Wilms Tumor on June 4th 2022. We went to urgent care for a fever. I thought she had an ear infection. The doctor was very thorough and felt like her abdomen was a bit enlarged and ordered an X-ray. She told me her liver was enlarged and sent me to the ER where they did an ultrasound and blood work. They informed us that Sydney had a large abdominal tumor and they suspected that it was Wilms Tumor. We were admitted on 6/8/22 and she had surgery to remove the tumor and her right kidney.
Along with her tumor removal, she had a port placed. She has also received 12 rounds of chemo so far. She had 2 ultrasounds, 2 chest X-rays, and a CT scan. Our biggest struggle has been adjusting our work schedules. Sydney had to be pulled out of daycare so one of us is always available to care for her in and out of the hospital.
Sydney’s diagnosis was an immediate shock. No one ever thinks their child will get cancer. It was the furthest thing from our minds. It has changed our day-to-day schedules and I can’t always include Sydney in everything because I don’t want to risk her getting sick.
Sydney has a 10-year-old brother who took this very hard at first. We lost my father to cancer 4 years ago so when he heard that his sister had cancer, it was very hard and he thought the worst. It is extra tough because, with Covid procedures, I haven’t been able to bring him along to any appointments or chemo rounds. He wanted to visit her in the hospital and couldn’t.
Alyssa loves to smile and loves making people laugh. Her personality is so contagious! She loves hugs and has so much love to give! She is half Samoan and Salvadoran and she takes so much pride in her heritage but she is partial to her Samoan side. She even does Polynesian dancing. She can do the hula, Tahitian dance, and Siva (traditional Samoan dancing). She speaks Samoan as well. She loves unicorns, Disney princesses, mermaids, and outer space. We have gone stargazing so many times as a family.
Alyssa was diagnosed with Wilm’s Tumor in November of 2021, right before Thanksgiving. We were so blessed she only spent a week in the hospital and was released the day before Thanksgiving. It was the most emotional Thanksgiving we’ve ever had but, we are so grateful that we were able to be with family and celebrate love and thankfulness.
Alyssa was the one who told me something didn’t seem right with her belly. After she showered from school, she noticed her belly was bigger on one side. She had no other symptoms. She is always a happy and active child, but even in the hospital, her positive spirit and activeness never wavered. She went through 30 weeks of chemo, six days of radiation, port insertion/removal, and removal of her left kidney. She has no limitations from her treatment and is cancer free!
Cancer has definitely changed our family. We are more aware of our bodies but Alyssa’s diagnosis has made us into a much stronger unit. Her positive outlook on life has taught us much! She is wise beyond her years and has taught me so much!
Alyssa has shown such strength, love, and confidence (she ROCKED her bald head!). Her positivity through it all, helped us cope. She is the only girl out of her four siblings so she has this very nurturing love for her brothers.
