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!
Hope session by Melinda Roth Photography | Facebook | Instagram