Hunter is so much fun! He is strong willed and determined. Hunter is the sweetest boy. He will randomly tell someone they look pretty or go up and hug you. He is so funny and says the best things. He is always entertaining everyone around him. Any time you are around Hunter, all you can do is smile. He is truly such a blessing and a dream child.
He loves garbage trucks and really any truck that moves. He loves to play in the sand box and is your typical boy.
Hunter was your normal and healthy, sand box loving little boy. Weeks after he turned 3 he started peeing blood and when I took him into the pediatricians office, the pediatrician felt a “growth” on his right kidney and advised us to go down to the Children’s Hospital immediately. Within 48 hours, Hunter was having emergency surgery to remove the right kidney and the two pound tumor. Leading up to the diagnosis of Wilms Tumor, Hunter had absolutely no symptoms at until the day he started peeing blood.
He has been through 7 days of radiation and is currently undergoing his 28 week Chemo treatment plan. Every day is a new day and a new challenge with him. I am so ready to go back to our “normal, boring life” when this is all over.
Hunter is seriously the light in our world. He is such a fighter and proves everyday to us he is a hero. He overcomes so much and every challenge he is given, he always pushes through it. He has been such a trooper with the treatments and clinic visits and hospital admissions.
Noi-Katherine is full of life. She loves learning and Elmo. Her favorite song is a tie between Bruno Mars, ‘That’s what I like” and Moana’s “You’re Welcome”. She adores her older brother and anything he does makes her laugh. Her mother envisions her as a ballerina and she has been nicknamed the little ballerina since she was in the womb. Ogurt also known as Yogurt is Noi’s favorite snack. Noi is the queen of headbands, tutus, and sparkling shoes.
Noi-Katherine was diagnosed with kidney cancer on July 26, 2017. Never having complained of pain in her little life, we were all shocked with her diagnosis. Looking back her slow weight gain and poor appetite were signs that something was wrong.
Noi received 8 radiation treatments to the lungs. These were small daily doses over the course of 8 consecutive days. The lymph nodes showed positive margins as well so the left flank (kidney area) will receive 7 radiation treatments. These treatments were done simultaneously in the fall. On November 28th we celebrated a milestone, the completion of Radiation!
The next phase for Noi was surgery to remove her tumors. Surgery for her right kidney lasted nearly 8 hours due to Noi requiring blood (her counts were already low due to the chemo). The CT scans showed 3 areas of tumors on the right kidney however the ultrasound during the surgery revealed 4 tumors. The team removed the tumors from the top of the kidney, the bottom, the top/back, and the back. The human eye did not show any remaining cancer but microscopic positive margins were noticed in 3 of the 4 areas. This required the urologist to go back into the kidney and trim an additional 3 mls from the border of the three areas to attempt to remove any remaining cancer. These trims still came back with positive margins but the team could not tell whether these margins were actually cancer or neuphrogenic rest (resembles a wilms tumor but not cancer). The urologist did not want to compromise Noi’s treatment by carving more from the kidney or even removing the right kidney without a definite answer. Therefore he decided to send the pieces to pathology for testing before making any further decisions.
We agree with this decision. As he said during our post-operative consultation, “We need to let Noi’s disease dictate what we need to do and give her the best chance at her best life.” While it is unsettling that there may be cancer remaining in the right kidney, we are thankful that the urologist was able to save as much of the right kidney as possible even if he had to cut more than expected.He was able to salvage 1/2 of her kidney. He was also able to preserve her adrenal gland and he did not have to go to through the stomach or intestines. Overall it was a successful surgery.
Noi did very well during the second surgery to her left kidney. The general surgeon removed the lung nodule successfully. During surgery, he noticed a second nodule and decided to remove it as well, just in case. Aside from the two nodules, the lungs looked good and there were no complications.
After 12 weeks of chemotherapy and 2 nephrectomies, there is no longer any evidence of the Wilms Tumor in Noi-Katherine’s body! According to the oncologist they call this No Evidence of Disease or NED. She will have post-operative chemotherapy to reduce the possibility of reoccurrence as well as renal scans to observe renal function considering she is operating with less than 1 kidney. We are still awaiting the pathology from the left kidney and the lung nodules, the results may change the chemotherapy/radiation plan but post-operative chemo is definite. There is still a chance of dialysis but that will be determined by her renal function and really is a wait and see.
For the next 4 years, Noi will have scans every 12 weeks to check for any reappearance. We will not officially declare her NED until the first post treatment scan in the spring, she is scheduled for 25 weeks of chemotherapy. However, we are celebrating the removal of the tumors from her little body and a healthy recovery. We are declaring that we have kicked cancer’s butt and I will be planning a huge NED party for Noi-Katherine for May 2018!!
We are constantly living in a state of ‘take care of Noi’ at all costs. It has drawn us closer as a family but we no longer enjoy the weekend outings that we would normal take because we are fearful of her getting sick. It is a struggle to make sure Noi’s sibling does not feel neglected. We are fortunate Noi is responding so well to the chemo. We do not take this for granted at all!
On the night of April 12, 2017, we had eaten dinner as a family. Kinsley didn’t eat much but she was acting like her normal self. She was running around and dancing. After she got out of the bath that night we noticed her left side was bulging out and as hard as a rock. We took her to urgent care where they did an X-ray and saw she had a mass in her belly. We were then sent to the ER where they did an ultrasound and gave us the news that she had a Wilms Tumor. The hospital we were at did not treat this so they sent us via ambulance to the children’s hospital. On April 14th, she had her left kidney and tumor removed and her port placed. She had to recover at the hospital for a week before we were able to come home.
She started chemo on May 1st. She was amazing throughout chemo and radiation. She was often dancing and singing through it all. She loved going to see the nurses and play with the child life specialists. She only got sick a few times. She ran a fever twice and ending up staying in the hospital both times for a few days. She really was amazing through it all.
We both missed quite a few days of work. Kinsley couldn’t go to preschool anymore. My parents are retired and live close by. They watched Kinsley during the week and even took her to many of her appointments so that my husband and I could keep working. At the time of diagnosis Kinsley’s younger sister was 16 months old. It was hard to be away from her. We tried to keep her life as normal as possible. We were so lucky throughout this whole journey that we had family to help with our girls.
Kinsley finished chemo on November 27th. Her final scans were all clear and she rang the bell on December 18th. We are so excited that she is back in school!
Josie came into our care as a foster child when she was one. For us, my son was a heart patient and we had already spent months in the hospital because of his condition. He was the reason we fostered a “medically fragile” child in the first place. Otherwise, we wouldn’t have had the courage to take on a child like Josie. We would have been too afraid. She was so frail and sad when we met her. We immediately loved her though. At age 2 1/2 we adopted her.
She had already received surgery and radiation. She had been neglected and was removed from that horrible situation and placed with us. She was going through chemo at the time she came to us.
When Josie was about six months old, she was brought to the hospital with an extremely high fever. Her biological parents had missed that her stomach was extremely distended. She was immediately transferred to Vanderbilt. There the doctors removed her left kidney. It was then that she was diagnosed with Wilms Tumor.
Josie had weekly chemotherapy treatments and she was admitted around every other week for a fever. Usually 6 days after every treatment. We would have to live there for 5 to 8 days every time. She had a port, and any time they get a fever the doctors have to treat it like the child has an infection. So, IV antibiotics & a hospital stay until their blood count numbers come up. She needed blood & platelets often.
The daily vomiting & hospitalization was a big obstacle. My parents stayed with my boys every other week while Josie was hospitalized because my husband had to work. On top of that she had DCS and family visits. She was so underweight, I think partly from her parents neglect and partly from the chemotherapy. The doctor was thrilled when we brought her in and Josie had gained weight. I don’t think the biologicals fed her well. The doctor was like, “How did you get her to gain weight?” Luckily, I had some pediasure type shakes that my boy had outgrown (he is tube fed).
Josie is 4 months from being considered a survivor now! I believe her cancer saved her from living the rest of her life being neglected. Her situation was terrible.
Sweet Bryn is 4 years old. She is outspoken and sweet. She has a love for horses.
After 8 days of flu-like symptoms with negative test results, she tested positive for mono and strep. An ultrasound was completed and they determined she had an enlarged spleen. Additional tests discovered Stage IV Wilms Tumor on her kidney that had spread to her lungs. She was admitted to Children’s Hospital on 3/6/17 for further evaluation and treatment. Bryn had a rough few weeks after two hospital stays and five ER visits. She received six weeks of chemo treatments with excellent results. Her tumor and kidney was removed on 4/17/1. All 15 lung nodules have completely disappeared as of 4/11/17.
Bryn was borderline neutropenic or neutropenic almost her entire treatment. She lived life around a select group of people and mostly at home. However, we realize she is very lucky and we have been beyond blessed at how this terrible situation has brought our family closer and restored our faith in God.
Bryn’s scans were clear on 6/6/17 and she finished up chemo in September. Praise the Lord, her end of treatment scans were clear on 10/3/17. Bryn will have scans every three months for a few years and then every six months. She will be considered “cured” when she has had clear scans for five years, which will hopefully be in the fall of 2022 at age 10.
Ayren had multiple occasions where he was developing fevers but we didn’t know why. One day in February of 2015, he was laying down when I got up to get a diaper to change him, I noticed that he appeared lopsided. It was as if something was poking out of his side. When I pressed on it it, I felt a huge mass of something. I was frightened and took him to the doctor. That’s when I saw the tumor on the screen for the first time.
We were taken to the hospital and they wasted no time placing a port and doing further scans. The goal was to shrink all the tumors so Ayren did 12 rounds of chemo before the surgery. He went through a dissection of both kidneys to carve out the tumors. After that, they let his body rest for a month and then resumed 32 weeks of chemo and 6 days of radiation. Ayren has several complications, hospital stays, bowel obstructions, and days in isolation.
I hate cancer, I hate what it’s done to our family. It’s truly shown me who supports our family and who doesn’t. Ayden’s father and I are no longer together. Cancer can tear a family apart and it’s unforgiving. One thing it hasnt done is take my boys from me and has not broken my faith. Ayren has a brother that has had to endure all of this and often times siblings are left out. This session has brought them closer then ever. Thank you Gold Hope Project.
